Patient-reported outcome measures for life participation in peritoneal dialysis: a systematic review

Characteristics of measures used to assess life participation in patients on PD (n = 42)

Measure	Response format	Number of items	Recall	Cost	Completion time^a	Specific to PD, KRT or CKD	Frequency of use (number of studies)
SF-36 [16]	Yes/no, 3‐/5‐/6‐point Likert scale	36	Current, past 4 weeks	License fee upon request	5–10 min	No	122
KDQOL-SF [17]^b	Yes/no, 3‐/5‐/6‐/10‐point Likert scale, open‐ended response	80	Current, past 4 weeks	No charge	~16 min	CKD	86
EQ-5D [18]^c	‘Indicate which statements best describe…’, VAS	16	Current	License fee upon request	<5 min	No	27
KDQOL-36 [19]	Yes/no, 3‐/5‐/6‐point Likert scale	36	Current, past 4 weeks	No charge	~10 min	CKD	26
SF-12 [20]	Yes/no, 3‐/5‐/6‐point Likert scale	12	Current, past 4 weeks	License fee upon request	~2 min	No	23
WHOQOL- BREF [21]	5-point Likert scale	26	Current, past 2 weeks	Contact World Health Organization	~5 min	No	21
IIRS [22]	7-point Likert scale	13	Current	Contact author	<15 min	No	6
NHP [23]	Yes/no	45	Current	Contact Galen Research	~9 min	No	5
CHEQ [24]	Yes/no, 3-/5-/6-/7-point Likert scale, open-ended responses	83	Current, past 4 weeks	Contact author	~16 min	KRT	4
15D [25]	5-point ordinal scale	15	Current	No charge	~3 min	No	3
IEQ [26]^d	7-point Likert scale	20	Current	Contact author	~4 min	No	3
SF-6D [27]	4-/5-/6-point ordinal scale	6	Current	No charge for academic/noncommercial use with study registration. License fee for commercial use upon request.	<2 min	No	3
HAP [28]	3‐point ordinal scale: ‘still doing, have stopped doing, never did’	102	Current	Contact author	5–10 min	No	3
GHQ-28 [29]	4-point Likert scale	28	Past few weeks	5.50 AUD	~5 min	No	2
PAQOL [30]^d	Open-ended responses, 10-point Likert scale	19	Current	Contact author	~4 min	No	2
SIP [31]	‘Check those that apply’	136	Current	Contact the Medical Outcomes Trust	20–30 min	No	2
SWED-Qual [32]	4-/5-/6-point Likert scale	61	Current, past week	Contact author	~12 min	No	2
FACIT-Fatigue [33]	5-point Likert scale	13	Past 7 days	No charge with study registration	5–10 min	No	2
QLQ-C30 [34]	4-/7-point Likert scale	30	Current, past week	No charge for academic/noncommercial use with study registration. License fee for commercial use upon request.	~6 min	No	2
RQLP^d	5-point Likert scale	43	Current	Contact author	5–7 min	CKD	1
PASE [35]	4-point Likert scale, open-ended responses, number of hours, yes/no, ‘which of the following categories best describes…’	10	Past 7 days	Contact New England Research Institutes	5–15 min	No	1
WPAI-GH [36]	Yes/no, number of hours, 11-point Likert scale	6	Current, past 7 days	Contact author	<2 min	No	1
KDQ [37]^d	7-point Likert scale	26	Past 2 weeks	Contact author	10–15 min	CKD	1
GHQ-12 [29]	4-point Likert scale	12	Past 4 weeks	2.25 AUD	~2 min	No	1
DUKE [38]	3-point Likert scale, number of days	17	Current, past week	Contact author	~3 min	No	1
HMQ [39]	Yes/no, 3-/4-/6-point ordinal scale, VAS, open-ended responses	37	Current, past 2 weeks	Contact author	<10 min	No	1
WHODAS II [40]	5‐point Likert scale, number of days	15	Past 30 days	License fee upon request	~5 min	No	1
IPAQ [41]	Yes/no, time spent on activities	27	Past 7 days	No charge	~5 min	No	1
ICECAP-O [42]	4-point Likert scale	5	Current	No charge with study registration	~1 min	No	1
MHIQ [43]^d	Yes/no, 3-/5-point Likert scale	59	Current	Contact author	~20 min	No	1
PGWB [44]	6‐point Likert scale	22	Past month	Contact author	<5 min	No	1
DRM [45]	4-/5-/7-point Likert scale, percentage of time, open-ended responses, yes/no, ;check all that apply;	≥110	Current, yesterday	Contact author	45–75 min	No	1
9-THAI [46]	5-point Likert scale	9	Past month, last year	Contact author	~2 min	No	1
RAND-36 [47]	Yes/no, 3‐/5‐/6‐point Likert scale	36	Current, past 4 weeks	No charge	5–10 min	No	1
Author-developed measures (for own study, not validated)
Dąbrowska- Bender et al. [48]^d	10-point Likert scale	NA	NA	Contact author	NA	KRT	1
Devins et al. [49]^d	Yes/no, number of hours per week	5	Past 7 days	Contact author	<2 min	CKD	1
Fernandes da Silva^d	NA	NA	NA	Contact author	NA	KRT	1
Juergensen et al. [50]	10-point Likert scale, open-ended responses	20	Current	Contact author	10–15 min	KRT	1
Panagopoulou^d [51]	NA	NA	NA	Contact author	NA	KRT	1
Szabo^d [52]	NA	NA	NA	Contact author	NA	NA	1
Tapson^d [53]	NA	NA	NA	Contact author	NA	KRT	1
Tell^d [54]	Yes/no	1	NA	Contact author	<1 min	CKD	1

Measure	Response format	Number of items	Recall	Cost	Completion time^a	Specific to PD, KRT or CKD	Frequency of use (number of studies)
SF-36 [16]	Yes/no, 3‐/5‐/6‐point Likert scale	36	Current, past 4 weeks	License fee upon request	5–10 min	No	122
KDQOL-SF [17]^b	Yes/no, 3‐/5‐/6‐/10‐point Likert scale, open‐ended response	80	Current, past 4 weeks	No charge	~16 min	CKD	86
EQ-5D [18]^c	‘Indicate which statements best describe…’, VAS	16	Current	License fee upon request	<5 min	No	27
KDQOL-36 [19]	Yes/no, 3‐/5‐/6‐point Likert scale	36	Current, past 4 weeks	No charge	~10 min	CKD	26
SF-12 [20]	Yes/no, 3‐/5‐/6‐point Likert scale	12	Current, past 4 weeks	License fee upon request	~2 min	No	23
WHOQOL- BREF [21]	5-point Likert scale	26	Current, past 2 weeks	Contact World Health Organization	~5 min	No	21
IIRS [22]	7-point Likert scale	13	Current	Contact author	<15 min	No	6
NHP [23]	Yes/no	45	Current	Contact Galen Research	~9 min	No	5
CHEQ [24]	Yes/no, 3-/5-/6-/7-point Likert scale, open-ended responses	83	Current, past 4 weeks	Contact author	~16 min	KRT	4
15D [25]	5-point ordinal scale	15	Current	No charge	~3 min	No	3
IEQ [26]^d	7-point Likert scale	20	Current	Contact author	~4 min	No	3
SF-6D [27]	4-/5-/6-point ordinal scale	6	Current	No charge for academic/noncommercial use with study registration. License fee for commercial use upon request.	<2 min	No	3
HAP [28]	3‐point ordinal scale: ‘still doing, have stopped doing, never did’	102	Current	Contact author	5–10 min	No	3
GHQ-28 [29]	4-point Likert scale	28	Past few weeks	5.50 AUD	~5 min	No	2
PAQOL [30]^d	Open-ended responses, 10-point Likert scale	19	Current	Contact author	~4 min	No	2
SIP [31]	‘Check those that apply’	136	Current	Contact the Medical Outcomes Trust	20–30 min	No	2
SWED-Qual [32]	4-/5-/6-point Likert scale	61	Current, past week	Contact author	~12 min	No	2
FACIT-Fatigue [33]	5-point Likert scale	13	Past 7 days	No charge with study registration	5–10 min	No	2
QLQ-C30 [34]	4-/7-point Likert scale	30	Current, past week	No charge for academic/noncommercial use with study registration. License fee for commercial use upon request.	~6 min	No	2
RQLP^d	5-point Likert scale	43	Current	Contact author	5–7 min	CKD	1
PASE [35]	4-point Likert scale, open-ended responses, number of hours, yes/no, ‘which of the following categories best describes…’	10	Past 7 days	Contact New England Research Institutes	5–15 min	No	1
WPAI-GH [36]	Yes/no, number of hours, 11-point Likert scale	6	Current, past 7 days	Contact author	<2 min	No	1
KDQ [37]^d	7-point Likert scale	26	Past 2 weeks	Contact author	10–15 min	CKD	1
GHQ-12 [29]	4-point Likert scale	12	Past 4 weeks	2.25 AUD	~2 min	No	1
DUKE [38]	3-point Likert scale, number of days	17	Current, past week	Contact author	~3 min	No	1
HMQ [39]	Yes/no, 3-/4-/6-point ordinal scale, VAS, open-ended responses	37	Current, past 2 weeks	Contact author	<10 min	No	1
WHODAS II [40]	5‐point Likert scale, number of days	15	Past 30 days	License fee upon request	~5 min	No	1
IPAQ [41]	Yes/no, time spent on activities	27	Past 7 days	No charge	~5 min	No	1
ICECAP-O [42]	4-point Likert scale	5	Current	No charge with study registration	~1 min	No	1
MHIQ [43]^d	Yes/no, 3-/5-point Likert scale	59	Current	Contact author	~20 min	No	1
PGWB [44]	6‐point Likert scale	22	Past month	Contact author	<5 min	No	1
DRM [45]	4-/5-/7-point Likert scale, percentage of time, open-ended responses, yes/no, ;check all that apply;	≥110	Current, yesterday	Contact author	45–75 min	No	1
9-THAI [46]	5-point Likert scale	9	Past month, last year	Contact author	~2 min	No	1
RAND-36 [47]	Yes/no, 3‐/5‐/6‐point Likert scale	36	Current, past 4 weeks	No charge	5–10 min	No	1
Author-developed measures (for own study, not validated)
Dąbrowska- Bender et al. [48]^d	10-point Likert scale	NA	NA	Contact author	NA	KRT	1
Devins et al. [49]^d	Yes/no, number of hours per week	5	Past 7 days	Contact author	<2 min	CKD	1
Fernandes da Silva^d	NA	NA	NA	Contact author	NA	KRT	1
Juergensen et al. [50]	10-point Likert scale, open-ended responses	20	Current	Contact author	10–15 min	KRT	1
Panagopoulou^d [51]	NA	NA	NA	Contact author	NA	KRT	1
Szabo^d [52]	NA	NA	NA	Contact author	NA	NA	1
Tapson^d [53]	NA	NA	NA	Contact author	NA	KRT	1
Tell^d [54]	Yes/no	1	NA	Contact author	<1 min	CKD	1

a

Where data on completion time were unavailable, authors estimated based on ~12 s/item.

b

Studies used versions 1.1, 1.2 or 1.3.

c

Some studies used EQ-5D-5L and others used EQ-5D-3L.

d

Could not retrieve measure in full.

KRT: kidney replacement therapy; IIRS: Illness Intrusiveness Ratings Scale; NHP: Nottingham Health Profile; 15 D: 15 dimensions; IEQ: Illness Effects Questionnaire; GHQ-28: General Health Questionnaire 28-item; HAP: Human Activity Profile; PAQOL: patient-assessed quality of life; SIP: Sickness Impact Profile; RQLP: Renal Quality of Life Profile; PASE: Physical Activity Scale for the Elderly; WPAI-GH: Work Productivity and Activity Impairment General Health; KDQ: Kidney Disease Questionnaire; GHQ-12: 12-item General Health Questionnaire; DUKE: Duke Health Profile; HMQ: Health Measurement Questionnaire; WHODAS II: World Health Organization Disability Assessment Schedule 2.0; IPAQ: International Physical Activity Questionnaire; QLQ-C30: Quality of Life Questionnaire; MHIQ: McMaster Health Index Questionnaire; PGWB: Psychological General Well-Being Index; DRM: Day Reconstruction Method; FACIT: Fatigue, Functional Assessment of Chronic Illness Therapy—fatigue scale; SWED-Qual: Swedish Health-Related Quality of Life Survey.

Table 1

Characteristics of measures used to assess life participation in patients on PD (n = 42)

Measure	Response format	Number of items	Recall	Cost	Completion time^a	Specific to PD, KRT or CKD	Frequency of use (number of studies)
SF-36 [16]	Yes/no, 3‐/5‐/6‐point Likert scale	36	Current, past 4 weeks	License fee upon request	5–10 min	No	122
KDQOL-SF [17]^b	Yes/no, 3‐/5‐/6‐/10‐point Likert scale, open‐ended response	80	Current, past 4 weeks	No charge	~16 min	CKD	86
EQ-5D [18]^c	‘Indicate which statements best describe…’, VAS	16	Current	License fee upon request	<5 min	No	27
KDQOL-36 [19]	Yes/no, 3‐/5‐/6‐point Likert scale	36	Current, past 4 weeks	No charge	~10 min	CKD	26
SF-12 [20]	Yes/no, 3‐/5‐/6‐point Likert scale	12	Current, past 4 weeks	License fee upon request	~2 min	No	23
WHOQOL- BREF [21]	5-point Likert scale	26	Current, past 2 weeks	Contact World Health Organization	~5 min	No	21
IIRS [22]	7-point Likert scale	13	Current	Contact author	<15 min	No	6
NHP [23]	Yes/no	45	Current	Contact Galen Research	~9 min	No	5
CHEQ [24]	Yes/no, 3-/5-/6-/7-point Likert scale, open-ended responses	83	Current, past 4 weeks	Contact author	~16 min	KRT	4
15D [25]	5-point ordinal scale	15	Current	No charge	~3 min	No	3
IEQ [26]^d	7-point Likert scale	20	Current	Contact author	~4 min	No	3
SF-6D [27]	4-/5-/6-point ordinal scale	6	Current	No charge for academic/noncommercial use with study registration. License fee for commercial use upon request.	<2 min	No	3
HAP [28]	3‐point ordinal scale: ‘still doing, have stopped doing, never did’	102	Current	Contact author	5–10 min	No	3
GHQ-28 [29]	4-point Likert scale	28	Past few weeks	5.50 AUD	~5 min	No	2
PAQOL [30]^d	Open-ended responses, 10-point Likert scale	19	Current	Contact author	~4 min	No	2
SIP [31]	‘Check those that apply’	136	Current	Contact the Medical Outcomes Trust	20–30 min	No	2
SWED-Qual [32]	4-/5-/6-point Likert scale	61	Current, past week	Contact author	~12 min	No	2
FACIT-Fatigue [33]	5-point Likert scale	13	Past 7 days	No charge with study registration	5–10 min	No	2
QLQ-C30 [34]	4-/7-point Likert scale	30	Current, past week	No charge for academic/noncommercial use with study registration. License fee for commercial use upon request.	~6 min	No	2
RQLP^d	5-point Likert scale	43	Current	Contact author	5–7 min	CKD	1
PASE [35]	4-point Likert scale, open-ended responses, number of hours, yes/no, ‘which of the following categories best describes…’	10	Past 7 days	Contact New England Research Institutes	5–15 min	No	1
WPAI-GH [36]	Yes/no, number of hours, 11-point Likert scale	6	Current, past 7 days	Contact author	<2 min	No	1
KDQ [37]^d	7-point Likert scale	26	Past 2 weeks	Contact author	10–15 min	CKD	1
GHQ-12 [29]	4-point Likert scale	12	Past 4 weeks	2.25 AUD	~2 min	No	1
DUKE [38]	3-point Likert scale, number of days	17	Current, past week	Contact author	~3 min	No	1
HMQ [39]	Yes/no, 3-/4-/6-point ordinal scale, VAS, open-ended responses	37	Current, past 2 weeks	Contact author	<10 min	No	1
WHODAS II [40]	5‐point Likert scale, number of days	15	Past 30 days	License fee upon request	~5 min	No	1
IPAQ [41]	Yes/no, time spent on activities	27	Past 7 days	No charge	~5 min	No	1
ICECAP-O [42]	4-point Likert scale	5	Current	No charge with study registration	~1 min	No	1
MHIQ [43]^d	Yes/no, 3-/5-point Likert scale	59	Current	Contact author	~20 min	No	1
PGWB [44]	6‐point Likert scale	22	Past month	Contact author	<5 min	No	1
DRM [45]	4-/5-/7-point Likert scale, percentage of time, open-ended responses, yes/no, ;check all that apply;	≥110	Current, yesterday	Contact author	45–75 min	No	1
9-THAI [46]	5-point Likert scale	9	Past month, last year	Contact author	~2 min	No	1
RAND-36 [47]	Yes/no, 3‐/5‐/6‐point Likert scale	36	Current, past 4 weeks	No charge	5–10 min	No	1
Author-developed measures (for own study, not validated)
Dąbrowska- Bender et al. [48]^d	10-point Likert scale	NA	NA	Contact author	NA	KRT	1
Devins et al. [49]^d	Yes/no, number of hours per week	5	Past 7 days	Contact author	<2 min	CKD	1
Fernandes da Silva^d	NA	NA	NA	Contact author	NA	KRT	1
Juergensen et al. [50]	10-point Likert scale, open-ended responses	20	Current	Contact author	10–15 min	KRT	1
Panagopoulou^d [51]	NA	NA	NA	Contact author	NA	KRT	1
Szabo^d [52]	NA	NA	NA	Contact author	NA	NA	1
Tapson^d [53]	NA	NA	NA	Contact author	NA	KRT	1
Tell^d [54]	Yes/no	1	NA	Contact author	<1 min	CKD	1

Measure	Response format	Number of items	Recall	Cost	Completion time^a	Specific to PD, KRT or CKD	Frequency of use (number of studies)
SF-36 [16]	Yes/no, 3‐/5‐/6‐point Likert scale	36	Current, past 4 weeks	License fee upon request	5–10 min	No	122
KDQOL-SF [17]^b	Yes/no, 3‐/5‐/6‐/10‐point Likert scale, open‐ended response	80	Current, past 4 weeks	No charge	~16 min	CKD	86
EQ-5D [18]^c	‘Indicate which statements best describe…’, VAS	16	Current	License fee upon request	<5 min	No	27
KDQOL-36 [19]	Yes/no, 3‐/5‐/6‐point Likert scale	36	Current, past 4 weeks	No charge	~10 min	CKD	26
SF-12 [20]	Yes/no, 3‐/5‐/6‐point Likert scale	12	Current, past 4 weeks	License fee upon request	~2 min	No	23
WHOQOL- BREF [21]	5-point Likert scale	26	Current, past 2 weeks	Contact World Health Organization	~5 min	No	21
IIRS [22]	7-point Likert scale	13	Current	Contact author	<15 min	No	6
NHP [23]	Yes/no	45	Current	Contact Galen Research	~9 min	No	5
CHEQ [24]	Yes/no, 3-/5-/6-/7-point Likert scale, open-ended responses	83	Current, past 4 weeks	Contact author	~16 min	KRT	4
15D [25]	5-point ordinal scale	15	Current	No charge	~3 min	No	3
IEQ [26]^d	7-point Likert scale	20	Current	Contact author	~4 min	No	3
SF-6D [27]	4-/5-/6-point ordinal scale	6	Current	No charge for academic/noncommercial use with study registration. License fee for commercial use upon request.	<2 min	No	3
HAP [28]	3‐point ordinal scale: ‘still doing, have stopped doing, never did’	102	Current	Contact author	5–10 min	No	3
GHQ-28 [29]	4-point Likert scale	28	Past few weeks	5.50 AUD	~5 min	No	2
PAQOL [30]^d	Open-ended responses, 10-point Likert scale	19	Current	Contact author	~4 min	No	2
SIP [31]	‘Check those that apply’	136	Current	Contact the Medical Outcomes Trust	20–30 min	No	2
SWED-Qual [32]	4-/5-/6-point Likert scale	61	Current, past week	Contact author	~12 min	No	2
FACIT-Fatigue [33]	5-point Likert scale	13	Past 7 days	No charge with study registration	5–10 min	No	2
QLQ-C30 [34]	4-/7-point Likert scale	30	Current, past week	No charge for academic/noncommercial use with study registration. License fee for commercial use upon request.	~6 min	No	2
RQLP^d	5-point Likert scale	43	Current	Contact author	5–7 min	CKD	1
PASE [35]	4-point Likert scale, open-ended responses, number of hours, yes/no, ‘which of the following categories best describes…’	10	Past 7 days	Contact New England Research Institutes	5–15 min	No	1
WPAI-GH [36]	Yes/no, number of hours, 11-point Likert scale	6	Current, past 7 days	Contact author	<2 min	No	1
KDQ [37]^d	7-point Likert scale	26	Past 2 weeks	Contact author	10–15 min	CKD	1
GHQ-12 [29]	4-point Likert scale	12	Past 4 weeks	2.25 AUD	~2 min	No	1
DUKE [38]	3-point Likert scale, number of days	17	Current, past week	Contact author	~3 min	No	1
HMQ [39]	Yes/no, 3-/4-/6-point ordinal scale, VAS, open-ended responses	37	Current, past 2 weeks	Contact author	<10 min	No	1
WHODAS II [40]	5‐point Likert scale, number of days	15	Past 30 days	License fee upon request	~5 min	No	1
IPAQ [41]	Yes/no, time spent on activities	27	Past 7 days	No charge	~5 min	No	1
ICECAP-O [42]	4-point Likert scale	5	Current	No charge with study registration	~1 min	No	1
MHIQ [43]^d	Yes/no, 3-/5-point Likert scale	59	Current	Contact author	~20 min	No	1
PGWB [44]	6‐point Likert scale	22	Past month	Contact author	<5 min	No	1
DRM [45]	4-/5-/7-point Likert scale, percentage of time, open-ended responses, yes/no, ;check all that apply;	≥110	Current, yesterday	Contact author	45–75 min	No	1
9-THAI [46]	5-point Likert scale	9	Past month, last year	Contact author	~2 min	No	1
RAND-36 [47]	Yes/no, 3‐/5‐/6‐point Likert scale	36	Current, past 4 weeks	No charge	5–10 min	No	1
Author-developed measures (for own study, not validated)
Dąbrowska- Bender et al. [48]^d	10-point Likert scale	NA	NA	Contact author	NA	KRT	1
Devins et al. [49]^d	Yes/no, number of hours per week	5	Past 7 days	Contact author	<2 min	CKD	1
Fernandes da Silva^d	NA	NA	NA	Contact author	NA	KRT	1
Juergensen et al. [50]	10-point Likert scale, open-ended responses	20	Current	Contact author	10–15 min	KRT	1
Panagopoulou^d [51]	NA	NA	NA	Contact author	NA	KRT	1
Szabo^d [52]	NA	NA	NA	Contact author	NA	NA	1
Tapson^d [53]	NA	NA	NA	Contact author	NA	KRT	1
Tell^d [54]	Yes/no	1	NA	Contact author	<1 min	CKD	1

a

Where data on completion time were unavailable, authors estimated based on ~12 s/item.

b

Studies used versions 1.1, 1.2 or 1.3.

c

Some studies used EQ-5D-5L and others used EQ-5D-3L.

d

Could not retrieve measure in full.

KRT: kidney replacement therapy; IIRS: Illness Intrusiveness Ratings Scale; NHP: Nottingham Health Profile; 15 D: 15 dimensions; IEQ: Illness Effects Questionnaire; GHQ-28: General Health Questionnaire 28-item; HAP: Human Activity Profile; PAQOL: patient-assessed quality of life; SIP: Sickness Impact Profile; RQLP: Renal Quality of Life Profile; PASE: Physical Activity Scale for the Elderly; WPAI-GH: Work Productivity and Activity Impairment General Health; KDQ: Kidney Disease Questionnaire; GHQ-12: 12-item General Health Questionnaire; DUKE: Duke Health Profile; HMQ: Health Measurement Questionnaire; WHODAS II: World Health Organization Disability Assessment Schedule 2.0; IPAQ: International Physical Activity Questionnaire; QLQ-C30: Quality of Life Questionnaire; MHIQ: McMaster Health Index Questionnaire; PGWB: Psychological General Well-Being Index; DRM: Day Reconstruction Method; FACIT: Fatigue, Functional Assessment of Chronic Illness Therapy—fatigue scale; SWED-Qual: Swedish Health-Related Quality of Life Survey.

Content of measures

Thirty-two (76%) measures assessed both obligatory and nonobligatory dimensions of life participation, six (14%) measures assessed only obligatory activities and four (10%) measures assessed only nonobligatory activities. The activities stated within each dimension varied across studies, as did the specificity of the questions asking about the activities. For example, some measures assessed obligatory activities by specifically asking about a person’s ability to wash or dress themselves, study or work, while other measures were more general in assessing one’s ability to do the ‘things you have to do’. Nonobligatory activities ranged from playing sports and socializing to doing the ‘things you want to do’. Details of the activities assessed in each measure are presented in Table 2.

Table 2

Dimensions of life participation assessed by each measure

Measure	Obligatory	Nonobligatory	Types of activities
SF-36	•	•	Lifting heavy objects, participating in strenuous sports, moving a table, pushing a vacuum cleaner, playing golf, carrying groceries, climbing stairs, bathing or dressing
SF-12	•	•	Moving a table, pushing a vacuum cleaner, bowling, playing golf, climbing stairs
KDQOL-SF	•	•	Running, lifting heavy objects, participating in strenuous sports, moving a table, bowling, carrying groceries, bathing or dressing, work outside the home, housework, social activities
EQ-5D	•	•	Washing, dressing, leisure activities, housework, work, study
KDQOL-36	•	•	Moving a table, pushing a vacuum cleaner, playing golf, climbing stairs, work outside the home, housework, travel
HAP	•	•	Cooking meals, putting on shoes, climbing steps, sweeping, walking, mowing the lawn, dining at a restaurant, dancing
RQLP	•	•	Eating, drinking, physical activities, psychosocial activities, leisure time
IEQ		•	Family life, social life
IIRS	•	•	Work, sports, reading, listening to music, community/civic involvement
NHP	•	•	Work, cleaning, cooking, home repairs, going out, seeing friends, going to the movies, sports, vacations
PASE	•	•	Reading, watching TV, doing handcrafts, walking, bowling, shuffleboard, fishing, sport, housework, home repairs, paid work
WPAI-GH	•	•	Work, housework, shopping, childcare, exercising, studying
KDQ	•		Housework
WHOQOL-BREF	•	•	Leisure activities, getting around, daily living activities, work
GHQ-28	•		Normal day-to-day activities
GHQ-12	•		Normal day-to-day activities
DUKE	•	•	Social activities, religious activities, recreation activities, visiting friends or relatives
HMQ	•	•	Washing or dressing oneself, eating or drinking, seeing friends or relatives
15D	•	•	Employment, studying, housework, free time activities, walking
SIP	•	•	Eating, work, housework, recreation, walking, travel, caring for children
SF-6D	•	•	Bathing, dressing, vigorous activities, work outside the home, housework, social activities
WHODAS II	•	•	Household responsibilities, community activities, walking, washing, dressing, work, maintaining friendships
CHEQ	•	•	Climbing stairs, walking, bathing or dressing, recreation, work outside the home, housework, travel
IPAQ	•	•	Heavy lifting, walking, traveling, scrubbing floors, aerobics, swimming, running, cycling
ICECAP-O	•	•	Things that make you feel valued, enjoyment and pleasure, love and friendship, independence
QLQ-C30	•	•	Carrying a heavy shopping bag, carrying a suitcase, dressing, washing, hobbies, leisure time activities, social activities
MHIQ	•	•	Self-care, physical activities, work, participation with family and friends
PGWB	•	•	Things you like to do, things you have to do
DRM	•	•	Commuting, shopping, housework, work, preparing food, caring for children, socializing, exercise
PAQOL	•	•	Work, social life, family life, exercise
9-THAI	•	•	Self-care, work outside the home, housework, social/community activities
FACIT-Fatigue	•	•	Usual activities, social activities, things you want to do
RAND-36	•	•	Lifting heavy objects, participating in strenuous sports, moving a table, pushing a vacuum cleaner, playing golf, carrying groceries, climbing stairs, bathing or dressing
SWED-Qual	•	•	Walking, climbing stairs, dressing, carrying groceries, work outside the home, housework, parenting, strenuous sports, hiking
Author-developed measures (for own study, not validated)
Dąbrowska- Bender et al.[67]	•		Work, study, eating or drinking
Devins et al.[68]	•		Walking, climbing stairs, housework, work outside the home
Fernandes da Silva	•		Walking, eating, bathing, climbing stairs, shopping, driving, house cleaning
Juergensen et al. [69]	•	•	Family life, social life, recreation/hobbies, exercise
Panagopoulou [51]	•	•	Work, family life, social life, recreation
Szabo [52]		•	Outdoor activities, community activities, hobbies
Tapson [53]		•	Social life
Tell [54]		•	Leisure time activities

Measure	Obligatory	Nonobligatory	Types of activities
SF-36	•	•	Lifting heavy objects, participating in strenuous sports, moving a table, pushing a vacuum cleaner, playing golf, carrying groceries, climbing stairs, bathing or dressing
SF-12	•	•	Moving a table, pushing a vacuum cleaner, bowling, playing golf, climbing stairs
KDQOL-SF	•	•	Running, lifting heavy objects, participating in strenuous sports, moving a table, bowling, carrying groceries, bathing or dressing, work outside the home, housework, social activities
EQ-5D	•	•	Washing, dressing, leisure activities, housework, work, study
KDQOL-36	•	•	Moving a table, pushing a vacuum cleaner, playing golf, climbing stairs, work outside the home, housework, travel
HAP	•	•	Cooking meals, putting on shoes, climbing steps, sweeping, walking, mowing the lawn, dining at a restaurant, dancing
RQLP	•	•	Eating, drinking, physical activities, psychosocial activities, leisure time
IEQ		•	Family life, social life
IIRS	•	•	Work, sports, reading, listening to music, community/civic involvement
NHP	•	•	Work, cleaning, cooking, home repairs, going out, seeing friends, going to the movies, sports, vacations
PASE	•	•	Reading, watching TV, doing handcrafts, walking, bowling, shuffleboard, fishing, sport, housework, home repairs, paid work
WPAI-GH	•	•	Work, housework, shopping, childcare, exercising, studying
KDQ	•		Housework
WHOQOL-BREF	•	•	Leisure activities, getting around, daily living activities, work
GHQ-28	•		Normal day-to-day activities
GHQ-12	•		Normal day-to-day activities
DUKE	•	•	Social activities, religious activities, recreation activities, visiting friends or relatives
HMQ	•	•	Washing or dressing oneself, eating or drinking, seeing friends or relatives
15D	•	•	Employment, studying, housework, free time activities, walking
SIP	•	•	Eating, work, housework, recreation, walking, travel, caring for children
SF-6D	•	•	Bathing, dressing, vigorous activities, work outside the home, housework, social activities
WHODAS II	•	•	Household responsibilities, community activities, walking, washing, dressing, work, maintaining friendships
CHEQ	•	•	Climbing stairs, walking, bathing or dressing, recreation, work outside the home, housework, travel
IPAQ	•	•	Heavy lifting, walking, traveling, scrubbing floors, aerobics, swimming, running, cycling
ICECAP-O	•	•	Things that make you feel valued, enjoyment and pleasure, love and friendship, independence
QLQ-C30	•	•	Carrying a heavy shopping bag, carrying a suitcase, dressing, washing, hobbies, leisure time activities, social activities
MHIQ	•	•	Self-care, physical activities, work, participation with family and friends
PGWB	•	•	Things you like to do, things you have to do
DRM	•	•	Commuting, shopping, housework, work, preparing food, caring for children, socializing, exercise
PAQOL	•	•	Work, social life, family life, exercise
9-THAI	•	•	Self-care, work outside the home, housework, social/community activities
FACIT-Fatigue	•	•	Usual activities, social activities, things you want to do
RAND-36	•	•	Lifting heavy objects, participating in strenuous sports, moving a table, pushing a vacuum cleaner, playing golf, carrying groceries, climbing stairs, bathing or dressing
SWED-Qual	•	•	Walking, climbing stairs, dressing, carrying groceries, work outside the home, housework, parenting, strenuous sports, hiking
Author-developed measures (for own study, not validated)
Dąbrowska- Bender et al.[67]	•		Work, study, eating or drinking
Devins et al.[68]	•		Walking, climbing stairs, housework, work outside the home
Fernandes da Silva	•		Walking, eating, bathing, climbing stairs, shopping, driving, house cleaning
Juergensen et al. [69]	•	•	Family life, social life, recreation/hobbies, exercise
Panagopoulou [51]	•	•	Work, family life, social life, recreation
Szabo [52]		•	Outdoor activities, community activities, hobbies
Tapson [53]		•	Social life
Tell [54]		•	Leisure time activities

Filled circle indicates:If the measure assessed obligatory, non-obligatory, or both dimensions of life participation

IIRS: Illness Intrusiveness Ratings Scale; NHP: Nottingham Health Profile; 15 D: 15 Dimensions; IEQ: Illness Effects Questionnaire; GHQ-28: General Health Questionnaire 28-item; HAP: Human Activity Profile; PAQOL: Patient-assessed quality of life; SIP: Sickness Impact Profile; RQLP: Renal Quality of Life Profile; PASE: Physical Activity Scale for the Elderly; WPAI-GH: Work Productivity and Activity Impairment General Health; KDQ: Kidney Disease Questionnaire; GHQ-12: 12-item General Health Questionnaire; DUKE: Duke Health Profile; HMQ: Health Measurement Questionnaire; WHODAS II: World Health Organization Disability Assessment Schedule 2.0; IPAQ: International Physical Activity Questionnaire; QLQ-C30: Quality of Life Questionnaire; MHIQ: McMaster Health Index Questionnaire; PGWB: Psychological General Well-Being Index; DRM: Day Reconstruction Method; FACIT-Fatigue: Functional Assessment of Chronic Illness Therapy—fatigue scale; SWED-Qual: Swedish Health-Related Quality of Life Survey.

Table 2

Dimensions of life participation assessed by each measure

Measure	Obligatory	Nonobligatory	Types of activities
SF-36	•	•	Lifting heavy objects, participating in strenuous sports, moving a table, pushing a vacuum cleaner, playing golf, carrying groceries, climbing stairs, bathing or dressing
SF-12	•	•	Moving a table, pushing a vacuum cleaner, bowling, playing golf, climbing stairs
KDQOL-SF	•	•	Running, lifting heavy objects, participating in strenuous sports, moving a table, bowling, carrying groceries, bathing or dressing, work outside the home, housework, social activities
EQ-5D	•	•	Washing, dressing, leisure activities, housework, work, study
KDQOL-36	•	•	Moving a table, pushing a vacuum cleaner, playing golf, climbing stairs, work outside the home, housework, travel
HAP	•	•	Cooking meals, putting on shoes, climbing steps, sweeping, walking, mowing the lawn, dining at a restaurant, dancing
RQLP	•	•	Eating, drinking, physical activities, psychosocial activities, leisure time
IEQ		•	Family life, social life
IIRS	•	•	Work, sports, reading, listening to music, community/civic involvement
NHP	•	•	Work, cleaning, cooking, home repairs, going out, seeing friends, going to the movies, sports, vacations
PASE	•	•	Reading, watching TV, doing handcrafts, walking, bowling, shuffleboard, fishing, sport, housework, home repairs, paid work
WPAI-GH	•	•	Work, housework, shopping, childcare, exercising, studying
KDQ	•		Housework
WHOQOL-BREF	•	•	Leisure activities, getting around, daily living activities, work
GHQ-28	•		Normal day-to-day activities
GHQ-12	•		Normal day-to-day activities
DUKE	•	•	Social activities, religious activities, recreation activities, visiting friends or relatives
HMQ	•	•	Washing or dressing oneself, eating or drinking, seeing friends or relatives
15D	•	•	Employment, studying, housework, free time activities, walking
SIP	•	•	Eating, work, housework, recreation, walking, travel, caring for children
SF-6D	•	•	Bathing, dressing, vigorous activities, work outside the home, housework, social activities
WHODAS II	•	•	Household responsibilities, community activities, walking, washing, dressing, work, maintaining friendships
CHEQ	•	•	Climbing stairs, walking, bathing or dressing, recreation, work outside the home, housework, travel
IPAQ	•	•	Heavy lifting, walking, traveling, scrubbing floors, aerobics, swimming, running, cycling
ICECAP-O	•	•	Things that make you feel valued, enjoyment and pleasure, love and friendship, independence
QLQ-C30	•	•	Carrying a heavy shopping bag, carrying a suitcase, dressing, washing, hobbies, leisure time activities, social activities
MHIQ	•	•	Self-care, physical activities, work, participation with family and friends
PGWB	•	•	Things you like to do, things you have to do
DRM	•	•	Commuting, shopping, housework, work, preparing food, caring for children, socializing, exercise
PAQOL	•	•	Work, social life, family life, exercise
9-THAI	•	•	Self-care, work outside the home, housework, social/community activities
FACIT-Fatigue	•	•	Usual activities, social activities, things you want to do
RAND-36	•	•	Lifting heavy objects, participating in strenuous sports, moving a table, pushing a vacuum cleaner, playing golf, carrying groceries, climbing stairs, bathing or dressing
SWED-Qual	•	•	Walking, climbing stairs, dressing, carrying groceries, work outside the home, housework, parenting, strenuous sports, hiking
Author-developed measures (for own study, not validated)
Dąbrowska- Bender et al.[67]	•		Work, study, eating or drinking
Devins et al.[68]	•		Walking, climbing stairs, housework, work outside the home
Fernandes da Silva	•		Walking, eating, bathing, climbing stairs, shopping, driving, house cleaning
Juergensen et al. [69]	•	•	Family life, social life, recreation/hobbies, exercise
Panagopoulou [51]	•	•	Work, family life, social life, recreation
Szabo [52]		•	Outdoor activities, community activities, hobbies
Tapson [53]		•	Social life
Tell [54]		•	Leisure time activities

Measure	Obligatory	Nonobligatory	Types of activities
SF-36	•	•	Lifting heavy objects, participating in strenuous sports, moving a table, pushing a vacuum cleaner, playing golf, carrying groceries, climbing stairs, bathing or dressing
SF-12	•	•	Moving a table, pushing a vacuum cleaner, bowling, playing golf, climbing stairs
KDQOL-SF	•	•	Running, lifting heavy objects, participating in strenuous sports, moving a table, bowling, carrying groceries, bathing or dressing, work outside the home, housework, social activities
EQ-5D	•	•	Washing, dressing, leisure activities, housework, work, study
KDQOL-36	•	•	Moving a table, pushing a vacuum cleaner, playing golf, climbing stairs, work outside the home, housework, travel
HAP	•	•	Cooking meals, putting on shoes, climbing steps, sweeping, walking, mowing the lawn, dining at a restaurant, dancing
RQLP	•	•	Eating, drinking, physical activities, psychosocial activities, leisure time
IEQ		•	Family life, social life
IIRS	•	•	Work, sports, reading, listening to music, community/civic involvement
NHP	•	•	Work, cleaning, cooking, home repairs, going out, seeing friends, going to the movies, sports, vacations
PASE	•	•	Reading, watching TV, doing handcrafts, walking, bowling, shuffleboard, fishing, sport, housework, home repairs, paid work
WPAI-GH	•	•	Work, housework, shopping, childcare, exercising, studying
KDQ	•		Housework
WHOQOL-BREF	•	•	Leisure activities, getting around, daily living activities, work
GHQ-28	•		Normal day-to-day activities
GHQ-12	•		Normal day-to-day activities
DUKE	•	•	Social activities, religious activities, recreation activities, visiting friends or relatives
HMQ	•	•	Washing or dressing oneself, eating or drinking, seeing friends or relatives
15D	•	•	Employment, studying, housework, free time activities, walking
SIP	•	•	Eating, work, housework, recreation, walking, travel, caring for children
SF-6D	•	•	Bathing, dressing, vigorous activities, work outside the home, housework, social activities
WHODAS II	•	•	Household responsibilities, community activities, walking, washing, dressing, work, maintaining friendships
CHEQ	•	•	Climbing stairs, walking, bathing or dressing, recreation, work outside the home, housework, travel
IPAQ	•	•	Heavy lifting, walking, traveling, scrubbing floors, aerobics, swimming, running, cycling
ICECAP-O	•	•	Things that make you feel valued, enjoyment and pleasure, love and friendship, independence
QLQ-C30	•	•	Carrying a heavy shopping bag, carrying a suitcase, dressing, washing, hobbies, leisure time activities, social activities
MHIQ	•	•	Self-care, physical activities, work, participation with family and friends
PGWB	•	•	Things you like to do, things you have to do
DRM	•	•	Commuting, shopping, housework, work, preparing food, caring for children, socializing, exercise
PAQOL	•	•	Work, social life, family life, exercise
9-THAI	•	•	Self-care, work outside the home, housework, social/community activities
FACIT-Fatigue	•	•	Usual activities, social activities, things you want to do
RAND-36	•	•	Lifting heavy objects, participating in strenuous sports, moving a table, pushing a vacuum cleaner, playing golf, carrying groceries, climbing stairs, bathing or dressing
SWED-Qual	•	•	Walking, climbing stairs, dressing, carrying groceries, work outside the home, housework, parenting, strenuous sports, hiking
Author-developed measures (for own study, not validated)
Dąbrowska- Bender et al.[67]	•		Work, study, eating or drinking
Devins et al.[68]	•		Walking, climbing stairs, housework, work outside the home
Fernandes da Silva	•		Walking, eating, bathing, climbing stairs, shopping, driving, house cleaning
Juergensen et al. [69]	•	•	Family life, social life, recreation/hobbies, exercise
Panagopoulou [51]	•	•	Work, family life, social life, recreation
Szabo [52]		•	Outdoor activities, community activities, hobbies
Tapson [53]		•	Social life
Tell [54]		•	Leisure time activities

Filled circle indicates:If the measure assessed obligatory, non-obligatory, or both dimensions of life participation

IIRS: Illness Intrusiveness Ratings Scale; NHP: Nottingham Health Profile; 15 D: 15 Dimensions; IEQ: Illness Effects Questionnaire; GHQ-28: General Health Questionnaire 28-item; HAP: Human Activity Profile; PAQOL: Patient-assessed quality of life; SIP: Sickness Impact Profile; RQLP: Renal Quality of Life Profile; PASE: Physical Activity Scale for the Elderly; WPAI-GH: Work Productivity and Activity Impairment General Health; KDQ: Kidney Disease Questionnaire; GHQ-12: 12-item General Health Questionnaire; DUKE: Duke Health Profile; HMQ: Health Measurement Questionnaire; WHODAS II: World Health Organization Disability Assessment Schedule 2.0; IPAQ: International Physical Activity Questionnaire; QLQ-C30: Quality of Life Questionnaire; MHIQ: McMaster Health Index Questionnaire; PGWB: Psychological General Well-Being Index; DRM: Day Reconstruction Method; FACIT-Fatigue: Functional Assessment of Chronic Illness Therapy—fatigue scale; SWED-Qual: Swedish Health-Related Quality of Life Survey.

Psychometric properties

The assessment of validity and reliability for each measure in patients receiving PD is presented in the Supplementary data, Table S4. Of the 42 measures, only 8 (19%) were validated in the PD population. A summary of the psychometric data for each of these measures is provided in Table 3. The validation data or psychometric properties assessed for the measures were highly variable and no measure provided information across all psychometric domains.

Table 3

Psychometric properties of measures of life participation that have reported validation studies in patients receiving PD

Measure (n = 8)	Validity	Reliability
9-THAI	Construct:	Test–retest: Intraclass correlation coefficients for initial PHY and MEN scores and those at follow-up 1 month later exceeded the recommended 0.7, at 0.79 and 0.78, respectively
(Population: 21% PD, 35% HD and 44% transplant) [46]	Convergent: Participants’ hematocrit levels were positively associated (P = 0.028) with the 9-THAI’s standardized T-summated mental domain scores (MEN)
	Discriminant: Hospitalization in the past year was negatively associated with lower 9-THAI standardized T-summated physical domain scores (PHY) (P < 0.001)
	Criterion:
	Concurrent: Spearman’s rank correlations between 9-THAI and SF-36 domains revealed that the 9-THAI PHY was positively associated with the SF-36 PCS (ρ = 0.40), and that the 9-THAI MEN was positively associated with the SF-36 MCS (ρ = 0.56). Other significant associations included the positive correlation between the 9-THAI illness/discomfort domain and the SF-36 bodily pain domain (ρ = 0.43).
CHEQ	Content: Measure development involved a literature review, focus groups and surveys with patients and health professionals, comprehension test with patients, clinical review, psychometric pretest with patients and an acceptability review with health professionals	Test–retest: Correlations between the baseline and follow-up scores 1 year later for the single-item kidney-specific domains (travel, finance, diet, recreation, work and body image) ranged from 0.55 to 0.79 with three domains equal to or exceeding the recommended 0.7
(Population in pretest: 25% PD, 75% HD) [24]	Construct: Multitrait analysis found that item-scale correlations were at least two SEs greater than the correlations of the item to other scales 99% of the time
(Same population as above study, of which 63% completed measure again at follow-up; 23% PD, 77% HD) [55]	Discriminant: Patients’ number of comorbidities was negatively correlated with the CHEQ physical functioning subscale. Patients’ on HD and PD scored significantly differently on the physical functioning, bodily pain, role-emotional, travel restrictions, dietary restrictions, recreation, dialysis access problems, sexual functioning and quality of life subscales. Patients >65 years old and those younger scored significantly different on the physical function, bodily pain, general health, mental health, financial, diet restrictions, work, body image, symptoms, sleep, sexual functioning and dialysis access problems subscales
		Internal consistency: Cronbach’s αs for the SF-36 domain and additional kidney-specific subscales ranged from 0.57 to 0.93, with all but 2 (time and quality of life) above the recommended α = 0.70. After psychometric pretesting, 11 items of the additional kidney-specific subscales were removed and 3 items were changed—there was no subsequent testing for internal consistency
	Criterion: Predictive: At follow-up 1 year later, 19–30% of all patients scored lower on the CHEQ and worsened, 50–65% of patients’ scores did not change and 16–24% of patients scored higher on the CHEQ and improved. From baseline to follow-up 1 year later, PD patients compared with HD patients experienced significantly lower improvement in physical functioning, general health, sleep and quality subscales. However, PD patients showed greater improvement in the finance subscale compared with HD patients
ICECAP-O	Criterion:	Test–retest: NA
(Population: 10% PD, 54% HD, 36% conservative care) [56]	Concurrent: Overall ICECAP-O score was positively correlated with overall SF-6D score (r = 0.65, P < 0.001), and all SF-5D domain scores (r = 0.30 to 0.56, P < 0.05). ICECAP-O attachment domain score was positively correlated with SF-6D mental health domain score (r = 0.19, P < 0.001), and ICECAP-O enjoyment domain score was positively correlated with all domain scores of the SF-6D with the exception of the role limitations domain (r = 0.27 to 0.43, P < 0.05). ICECAP-0 security domain score (r = 0.21 to 0.35, P < 0.05), role domain score (r = 0.28 to 0.51, P < 0.05) and control domain score (r = 0.27 to 0.53, P < 0.05) were positively correlated with all SF-6D domain scores	Internal consistency: NA
KDQOL-36	Content: The KDQOL-36 was derived from the KDQOL and KDQOL-SF	Internal consistency: Cronbach’s α revealed adequate internal consistency for Burden of Kidney Disease (r = 0.85), Symptoms (r = 0.83) and Effects of Kidney Disease (r = 0.85) domains. Cronbach’s α was not reported for the PCS-12 and MCS-12
(Population: 12% PD, 86% HD, 2% other [not specified]) [57]	Construct: Confirmatory factor analysis supported the three-factor structure of the kidney-specific items of the KDQOL-36. Multitrait analysis found all kidney-specific items were most correlated with the scales they were hypothesized as part of. These three subscales were also significantly positively correlated (r = 0.48 to 0.62, P < 0.05)
	Discriminant: PD patients had higher scores than HD patients on PCS-12, MCS-12 and all three kidney-specific subscales (P < 0.05). Patients with diabetes had lower scores on all domains than those without diabetes (P < 0.001) and patients employed full-time had higher scores on all domains than those not employed full-time (P < 0.05)
	Criterion:
	Concurrent: Each of the three KDQOL-36 subscales were positively correlated with PCS-12 and MCS-12 scores (r = 0.40 to 0.52, P < 0.001), with the largest correlations between the MCS-12 and burden (r = 0.52) and effects (r = 0.50) scales
KDQOL-SF	Content: The KDQOL-SF was adapted from the KDQOL, for which the development process included three patient focus groups, one health professional focus group and a literature review. To create the KDQOL-SF, regression analyses using Goodnight’s maximum R-squared improvement procedure were conducted to determine the subset of each KDQOL domains’ items which accounted for ∼90% of the domain’s variance. Consultation with the Baxter Renal Outcomes Study also led to response scale and item changes	Internal consistency: Cronbach’s α for all domains ranged from 0.61 to 0.90 with all the domains above the recommended 0.7 with the exception of the quality of social interaction and cognitive function domains (0.61–0.68 respectively)
(Population: Patient focus groups 46% PD, 54% HD; proportion of PD participants not reported for correlation or internal consistency coefficients) [17]
	Criterion:
	Concurrent: All KDQOL-SF domain scores had strong correlations with their corresponding KDQOL domain scores (r = 0.91 to 1.00, P < 0.05)
SF-12	Criterion:	Test–retest: NA
(Population: 6% PD and home HD combined, 94% in-center HD) [58]	Predictive: Each incremental point of the SF-12 PCS-12 was associated with a 2.4% lower adjusted associated HR of death and 0.4% decline in HR for first hospitalization. Each incremental point of the SF-12 MCS-12 was associated with 1.2% improved HR of death and 0.6% decline in HR for first hospitalization	Internal consistency: NA
	Concurrent: The PCS-12 had a high correlation (r = 0.94, P < 0.001) with the PCS from the SF-36. Similarly, the MCS score from the SF-12 had a high correlation (r = 0.94, P < 0.001) with the MCS from the SF-36. For both comparisons, the Spearman’s rank correlations were ρ = 0.94 and the intraclass correlation coefficient values were 0.94 (all P < 0.001)	Internal consistency: NA
SF-36	Construct:	Internal consistency: Cronbach’s α exceeded 0.8 for each subscale except social functioning, which had an α of 0.72. For dialysis patients only, the social functioning subscale had a Cronbach’s α of 0.60
(Population: 21% PD, 44% transplant, 35% HD; subgroup comparisons made with age and sex-matched control group) [59]	Convergent: Kendall’s tau-b coefficients revealed in the overall dialysis participant group, SF-36 domain scores were modestly correlated to individual item-scores on an eight-question measure with ESRD-specific symptoms (highest tau-b = 0.30). All SF-36 domains were positively correlated to hemoglobin, albumin, total protein and social and emotional support (P < 0.05). The physical functioning, role physical, general health, vitality and mental health domains were positively correlated with the duration of treatment (P < 0.05)
	Discriminant: All patient groups had lower scores on all SF-36 domains compared with healthy controls (P < 0.001). PD patients tended to have lower scores on all domains compared with transplant recipients. All SF-36 domains were negatively correlated to age, health-risk, time taken to travel to treatment and sex (male coded as 0) (P < 0.05). The bodily pain, social functioning and role emotional domains were negatively correlated with the duration of treatment (P < 0.05)
(Population: 6% PD and home HD combined, 94% in-center HD) [58]	Criterion:	Test–retest: NA
	Predictive: Each incremental point of the PCS-36 was associated with a 2.4% lower adjusted associated HR of death and 0.4% decline in HR for first hospitalization. Each incremental point of the MCS-36 was associated with 1.3% improved HR of death and 0.6% decline in HR for first hospitalization	Internal consistency: NA
	Concurrent: The PCS had a high correlation (r = 0.94, P < 0.001) with the PCS-12 from the SF-12. Similarly, the MCS score had a high correlation (r = 0.94, P < 0001) with the MCS-12 from the SF-12. For both comparisons, the Spearman’s rank correlations were ρ = 0.94 and the intraclass correlation coefficient values were 0.94 (all P < 0.001)	Internal consistency: NA
SF-6D	Criterion:	Test–retest: NA
(Population: 10% PD, 54% HD, 36% conservative care) [56]	Concurrent: Overall SF-6D score was positively correlated with overall ICECAP-O score (r = 0.65, P < 0.001). SF-6D mental health domain score was positively associated with all ICECAP-O domain scores (r = 0.19 to 0.39, P < 0.05). SF-6D physical health (r = 0.32 to 0.40, P < 0.05), social functioning (r = 0.25 to 0.35, P < 0.05), pain (r = 0.29 to 0.53, P < 0.05) and vitality domain (r = 0.21 to 0.48, P < 0.05) scores were positively correlated with all ICECAP-O domain scores with the exception of the attachment domain. SF-6D role limitations domain score was positively associated with all ICECAP-O domain scores with the exception of the attachment and enjoyment domains (r = 0.21 to 0.31, P < 0.05)	Internal consistency: NA

Measure (n = 8)	Validity	Reliability
9-THAI	Construct:	Test–retest: Intraclass correlation coefficients for initial PHY and MEN scores and those at follow-up 1 month later exceeded the recommended 0.7, at 0.79 and 0.78, respectively
(Population: 21% PD, 35% HD and 44% transplant) [46]	Convergent: Participants’ hematocrit levels were positively associated (P = 0.028) with the 9-THAI’s standardized T-summated mental domain scores (MEN)
	Discriminant: Hospitalization in the past year was negatively associated with lower 9-THAI standardized T-summated physical domain scores (PHY) (P < 0.001)
	Criterion:
	Concurrent: Spearman’s rank correlations between 9-THAI and SF-36 domains revealed that the 9-THAI PHY was positively associated with the SF-36 PCS (ρ = 0.40), and that the 9-THAI MEN was positively associated with the SF-36 MCS (ρ = 0.56). Other significant associations included the positive correlation between the 9-THAI illness/discomfort domain and the SF-36 bodily pain domain (ρ = 0.43).
CHEQ	Content: Measure development involved a literature review, focus groups and surveys with patients and health professionals, comprehension test with patients, clinical review, psychometric pretest with patients and an acceptability review with health professionals	Test–retest: Correlations between the baseline and follow-up scores 1 year later for the single-item kidney-specific domains (travel, finance, diet, recreation, work and body image) ranged from 0.55 to 0.79 with three domains equal to or exceeding the recommended 0.7
(Population in pretest: 25% PD, 75% HD) [24]	Construct: Multitrait analysis found that item-scale correlations were at least two SEs greater than the correlations of the item to other scales 99% of the time
(Same population as above study, of which 63% completed measure again at follow-up; 23% PD, 77% HD) [55]	Discriminant: Patients’ number of comorbidities was negatively correlated with the CHEQ physical functioning subscale. Patients’ on HD and PD scored significantly differently on the physical functioning, bodily pain, role-emotional, travel restrictions, dietary restrictions, recreation, dialysis access problems, sexual functioning and quality of life subscales. Patients >65 years old and those younger scored significantly different on the physical function, bodily pain, general health, mental health, financial, diet restrictions, work, body image, symptoms, sleep, sexual functioning and dialysis access problems subscales
		Internal consistency: Cronbach’s αs for the SF-36 domain and additional kidney-specific subscales ranged from 0.57 to 0.93, with all but 2 (time and quality of life) above the recommended α = 0.70. After psychometric pretesting, 11 items of the additional kidney-specific subscales were removed and 3 items were changed—there was no subsequent testing for internal consistency
	Criterion: Predictive: At follow-up 1 year later, 19–30% of all patients scored lower on the CHEQ and worsened, 50–65% of patients’ scores did not change and 16–24% of patients scored higher on the CHEQ and improved. From baseline to follow-up 1 year later, PD patients compared with HD patients experienced significantly lower improvement in physical functioning, general health, sleep and quality subscales. However, PD patients showed greater improvement in the finance subscale compared with HD patients
ICECAP-O	Criterion:	Test–retest: NA
(Population: 10% PD, 54% HD, 36% conservative care) [56]	Concurrent: Overall ICECAP-O score was positively correlated with overall SF-6D score (r = 0.65, P < 0.001), and all SF-5D domain scores (r = 0.30 to 0.56, P < 0.05). ICECAP-O attachment domain score was positively correlated with SF-6D mental health domain score (r = 0.19, P < 0.001), and ICECAP-O enjoyment domain score was positively correlated with all domain scores of the SF-6D with the exception of the role limitations domain (r = 0.27 to 0.43, P < 0.05). ICECAP-0 security domain score (r = 0.21 to 0.35, P < 0.05), role domain score (r = 0.28 to 0.51, P < 0.05) and control domain score (r = 0.27 to 0.53, P < 0.05) were positively correlated with all SF-6D domain scores	Internal consistency: NA
KDQOL-36	Content: The KDQOL-36 was derived from the KDQOL and KDQOL-SF	Internal consistency: Cronbach’s α revealed adequate internal consistency for Burden of Kidney Disease (r = 0.85), Symptoms (r = 0.83) and Effects of Kidney Disease (r = 0.85) domains. Cronbach’s α was not reported for the PCS-12 and MCS-12
(Population: 12% PD, 86% HD, 2% other [not specified]) [57]	Construct: Confirmatory factor analysis supported the three-factor structure of the kidney-specific items of the KDQOL-36. Multitrait analysis found all kidney-specific items were most correlated with the scales they were hypothesized as part of. These three subscales were also significantly positively correlated (r = 0.48 to 0.62, P < 0.05)
	Discriminant: PD patients had higher scores than HD patients on PCS-12, MCS-12 and all three kidney-specific subscales (P < 0.05). Patients with diabetes had lower scores on all domains than those without diabetes (P < 0.001) and patients employed full-time had higher scores on all domains than those not employed full-time (P < 0.05)
	Criterion:
	Concurrent: Each of the three KDQOL-36 subscales were positively correlated with PCS-12 and MCS-12 scores (r = 0.40 to 0.52, P < 0.001), with the largest correlations between the MCS-12 and burden (r = 0.52) and effects (r = 0.50) scales
KDQOL-SF	Content: The KDQOL-SF was adapted from the KDQOL, for which the development process included three patient focus groups, one health professional focus group and a literature review. To create the KDQOL-SF, regression analyses using Goodnight’s maximum R-squared improvement procedure were conducted to determine the subset of each KDQOL domains’ items which accounted for ∼90% of the domain’s variance. Consultation with the Baxter Renal Outcomes Study also led to response scale and item changes	Internal consistency: Cronbach’s α for all domains ranged from 0.61 to 0.90 with all the domains above the recommended 0.7 with the exception of the quality of social interaction and cognitive function domains (0.61–0.68 respectively)
(Population: Patient focus groups 46% PD, 54% HD; proportion of PD participants not reported for correlation or internal consistency coefficients) [17]
	Criterion:
	Concurrent: All KDQOL-SF domain scores had strong correlations with their corresponding KDQOL domain scores (r = 0.91 to 1.00, P < 0.05)
SF-12	Criterion:	Test–retest: NA
(Population: 6% PD and home HD combined, 94% in-center HD) [58]	Predictive: Each incremental point of the SF-12 PCS-12 was associated with a 2.4% lower adjusted associated HR of death and 0.4% decline in HR for first hospitalization. Each incremental point of the SF-12 MCS-12 was associated with 1.2% improved HR of death and 0.6% decline in HR for first hospitalization	Internal consistency: NA
	Concurrent: The PCS-12 had a high correlation (r = 0.94, P < 0.001) with the PCS from the SF-36. Similarly, the MCS score from the SF-12 had a high correlation (r = 0.94, P < 0.001) with the MCS from the SF-36. For both comparisons, the Spearman’s rank correlations were ρ = 0.94 and the intraclass correlation coefficient values were 0.94 (all P < 0.001)	Internal consistency: NA
SF-36	Construct:	Internal consistency: Cronbach’s α exceeded 0.8 for each subscale except social functioning, which had an α of 0.72. For dialysis patients only, the social functioning subscale had a Cronbach’s α of 0.60
(Population: 21% PD, 44% transplant, 35% HD; subgroup comparisons made with age and sex-matched control group) [59]	Convergent: Kendall’s tau-b coefficients revealed in the overall dialysis participant group, SF-36 domain scores were modestly correlated to individual item-scores on an eight-question measure with ESRD-specific symptoms (highest tau-b = 0.30). All SF-36 domains were positively correlated to hemoglobin, albumin, total protein and social and emotional support (P < 0.05). The physical functioning, role physical, general health, vitality and mental health domains were positively correlated with the duration of treatment (P < 0.05)
	Discriminant: All patient groups had lower scores on all SF-36 domains compared with healthy controls (P < 0.001). PD patients tended to have lower scores on all domains compared with transplant recipients. All SF-36 domains were negatively correlated to age, health-risk, time taken to travel to treatment and sex (male coded as 0) (P < 0.05). The bodily pain, social functioning and role emotional domains were negatively correlated with the duration of treatment (P < 0.05)
(Population: 6% PD and home HD combined, 94% in-center HD) [58]	Criterion:	Test–retest: NA
	Predictive: Each incremental point of the PCS-36 was associated with a 2.4% lower adjusted associated HR of death and 0.4% decline in HR for first hospitalization. Each incremental point of the MCS-36 was associated with 1.3% improved HR of death and 0.6% decline in HR for first hospitalization	Internal consistency: NA
	Concurrent: The PCS had a high correlation (r = 0.94, P < 0.001) with the PCS-12 from the SF-12. Similarly, the MCS score had a high correlation (r = 0.94, P < 0001) with the MCS-12 from the SF-12. For both comparisons, the Spearman’s rank correlations were ρ = 0.94 and the intraclass correlation coefficient values were 0.94 (all P < 0.001)	Internal consistency: NA
SF-6D	Criterion:	Test–retest: NA
(Population: 10% PD, 54% HD, 36% conservative care) [56]	Concurrent: Overall SF-6D score was positively correlated with overall ICECAP-O score (r = 0.65, P < 0.001). SF-6D mental health domain score was positively associated with all ICECAP-O domain scores (r = 0.19 to 0.39, P < 0.05). SF-6D physical health (r = 0.32 to 0.40, P < 0.05), social functioning (r = 0.25 to 0.35, P < 0.05), pain (r = 0.29 to 0.53, P < 0.05) and vitality domain (r = 0.21 to 0.48, P < 0.05) scores were positively correlated with all ICECAP-O domain scores with the exception of the attachment domain. SF-6D role limitations domain score was positively associated with all ICECAP-O domain scores with the exception of the attachment and enjoyment domains (r = 0.21 to 0.31, P < 0.05)	Internal consistency: NA

PCS: physical component summary; MCS: mental component summary; HR: hazard ratio. Validation studies were excluded if they were not available in full, were for a translation of the original measure or were not written in English.

Table 3

Psychometric properties of measures of life participation that have reported validation studies in patients receiving PD

Measure (n = 8)	Validity	Reliability
9-THAI	Construct:	Test–retest: Intraclass correlation coefficients for initial PHY and MEN scores and those at follow-up 1 month later exceeded the recommended 0.7, at 0.79 and 0.78, respectively
(Population: 21% PD, 35% HD and 44% transplant) [46]	Convergent: Participants’ hematocrit levels were positively associated (P = 0.028) with the 9-THAI’s standardized T-summated mental domain scores (MEN)
	Discriminant: Hospitalization in the past year was negatively associated with lower 9-THAI standardized T-summated physical domain scores (PHY) (P < 0.001)
	Criterion:
	Concurrent: Spearman’s rank correlations between 9-THAI and SF-36 domains revealed that the 9-THAI PHY was positively associated with the SF-36 PCS (ρ = 0.40), and that the 9-THAI MEN was positively associated with the SF-36 MCS (ρ = 0.56). Other significant associations included the positive correlation between the 9-THAI illness/discomfort domain and the SF-36 bodily pain domain (ρ = 0.43).
CHEQ	Content: Measure development involved a literature review, focus groups and surveys with patients and health professionals, comprehension test with patients, clinical review, psychometric pretest with patients and an acceptability review with health professionals	Test–retest: Correlations between the baseline and follow-up scores 1 year later for the single-item kidney-specific domains (travel, finance, diet, recreation, work and body image) ranged from 0.55 to 0.79 with three domains equal to or exceeding the recommended 0.7
(Population in pretest: 25% PD, 75% HD) [24]	Construct: Multitrait analysis found that item-scale correlations were at least two SEs greater than the correlations of the item to other scales 99% of the time
(Same population as above study, of which 63% completed measure again at follow-up; 23% PD, 77% HD) [55]	Discriminant: Patients’ number of comorbidities was negatively correlated with the CHEQ physical functioning subscale. Patients’ on HD and PD scored significantly differently on the physical functioning, bodily pain, role-emotional, travel restrictions, dietary restrictions, recreation, dialysis access problems, sexual functioning and quality of life subscales. Patients >65 years old and those younger scored significantly different on the physical function, bodily pain, general health, mental health, financial, diet restrictions, work, body image, symptoms, sleep, sexual functioning and dialysis access problems subscales
		Internal consistency: Cronbach’s αs for the SF-36 domain and additional kidney-specific subscales ranged from 0.57 to 0.93, with all but 2 (time and quality of life) above the recommended α = 0.70. After psychometric pretesting, 11 items of the additional kidney-specific subscales were removed and 3 items were changed—there was no subsequent testing for internal consistency
	Criterion: Predictive: At follow-up 1 year later, 19–30% of all patients scored lower on the CHEQ and worsened, 50–65% of patients’ scores did not change and 16–24% of patients scored higher on the CHEQ and improved. From baseline to follow-up 1 year later, PD patients compared with HD patients experienced significantly lower improvement in physical functioning, general health, sleep and quality subscales. However, PD patients showed greater improvement in the finance subscale compared with HD patients
ICECAP-O	Criterion:	Test–retest: NA
(Population: 10% PD, 54% HD, 36% conservative care) [56]	Concurrent: Overall ICECAP-O score was positively correlated with overall SF-6D score (r = 0.65, P < 0.001), and all SF-5D domain scores (r = 0.30 to 0.56, P < 0.05). ICECAP-O attachment domain score was positively correlated with SF-6D mental health domain score (r = 0.19, P < 0.001), and ICECAP-O enjoyment domain score was positively correlated with all domain scores of the SF-6D with the exception of the role limitations domain (r = 0.27 to 0.43, P < 0.05). ICECAP-0 security domain score (r = 0.21 to 0.35, P < 0.05), role domain score (r = 0.28 to 0.51, P < 0.05) and control domain score (r = 0.27 to 0.53, P < 0.05) were positively correlated with all SF-6D domain scores	Internal consistency: NA
KDQOL-36	Content: The KDQOL-36 was derived from the KDQOL and KDQOL-SF	Internal consistency: Cronbach’s α revealed adequate internal consistency for Burden of Kidney Disease (r = 0.85), Symptoms (r = 0.83) and Effects of Kidney Disease (r = 0.85) domains. Cronbach’s α was not reported for the PCS-12 and MCS-12
(Population: 12% PD, 86% HD, 2% other [not specified]) [57]	Construct: Confirmatory factor analysis supported the three-factor structure of the kidney-specific items of the KDQOL-36. Multitrait analysis found all kidney-specific items were most correlated with the scales they were hypothesized as part of. These three subscales were also significantly positively correlated (r = 0.48 to 0.62, P < 0.05)
	Discriminant: PD patients had higher scores than HD patients on PCS-12, MCS-12 and all three kidney-specific subscales (P < 0.05). Patients with diabetes had lower scores on all domains than those without diabetes (P < 0.001) and patients employed full-time had higher scores on all domains than those not employed full-time (P < 0.05)
	Criterion:
	Concurrent: Each of the three KDQOL-36 subscales were positively correlated with PCS-12 and MCS-12 scores (r = 0.40 to 0.52, P < 0.001), with the largest correlations between the MCS-12 and burden (r = 0.52) and effects (r = 0.50) scales
KDQOL-SF	Content: The KDQOL-SF was adapted from the KDQOL, for which the development process included three patient focus groups, one health professional focus group and a literature review. To create the KDQOL-SF, regression analyses using Goodnight’s maximum R-squared improvement procedure were conducted to determine the subset of each KDQOL domains’ items which accounted for ∼90% of the domain’s variance. Consultation with the Baxter Renal Outcomes Study also led to response scale and item changes	Internal consistency: Cronbach’s α for all domains ranged from 0.61 to 0.90 with all the domains above the recommended 0.7 with the exception of the quality of social interaction and cognitive function domains (0.61–0.68 respectively)
(Population: Patient focus groups 46% PD, 54% HD; proportion of PD participants not reported for correlation or internal consistency coefficients) [17]
	Criterion:
	Concurrent: All KDQOL-SF domain scores had strong correlations with their corresponding KDQOL domain scores (r = 0.91 to 1.00, P < 0.05)
SF-12	Criterion:	Test–retest: NA
(Population: 6% PD and home HD combined, 94% in-center HD) [58]	Predictive: Each incremental point of the SF-12 PCS-12 was associated with a 2.4% lower adjusted associated HR of death and 0.4% decline in HR for first hospitalization. Each incremental point of the SF-12 MCS-12 was associated with 1.2% improved HR of death and 0.6% decline in HR for first hospitalization	Internal consistency: NA
	Concurrent: The PCS-12 had a high correlation (r = 0.94, P < 0.001) with the PCS from the SF-36. Similarly, the MCS score from the SF-12 had a high correlation (r = 0.94, P < 0.001) with the MCS from the SF-36. For both comparisons, the Spearman’s rank correlations were ρ = 0.94 and the intraclass correlation coefficient values were 0.94 (all P < 0.001)	Internal consistency: NA
SF-36	Construct:	Internal consistency: Cronbach’s α exceeded 0.8 for each subscale except social functioning, which had an α of 0.72. For dialysis patients only, the social functioning subscale had a Cronbach’s α of 0.60
(Population: 21% PD, 44% transplant, 35% HD; subgroup comparisons made with age and sex-matched control group) [59]	Convergent: Kendall’s tau-b coefficients revealed in the overall dialysis participant group, SF-36 domain scores were modestly correlated to individual item-scores on an eight-question measure with ESRD-specific symptoms (highest tau-b = 0.30). All SF-36 domains were positively correlated to hemoglobin, albumin, total protein and social and emotional support (P < 0.05). The physical functioning, role physical, general health, vitality and mental health domains were positively correlated with the duration of treatment (P < 0.05)
	Discriminant: All patient groups had lower scores on all SF-36 domains compared with healthy controls (P < 0.001). PD patients tended to have lower scores on all domains compared with transplant recipients. All SF-36 domains were negatively correlated to age, health-risk, time taken to travel to treatment and sex (male coded as 0) (P < 0.05). The bodily pain, social functioning and role emotional domains were negatively correlated with the duration of treatment (P < 0.05)
(Population: 6% PD and home HD combined, 94% in-center HD) [58]	Criterion:	Test–retest: NA
	Predictive: Each incremental point of the PCS-36 was associated with a 2.4% lower adjusted associated HR of death and 0.4% decline in HR for first hospitalization. Each incremental point of the MCS-36 was associated with 1.3% improved HR of death and 0.6% decline in HR for first hospitalization	Internal consistency: NA
	Concurrent: The PCS had a high correlation (r = 0.94, P < 0.001) with the PCS-12 from the SF-12. Similarly, the MCS score had a high correlation (r = 0.94, P < 0001) with the MCS-12 from the SF-12. For both comparisons, the Spearman’s rank correlations were ρ = 0.94 and the intraclass correlation coefficient values were 0.94 (all P < 0.001)	Internal consistency: NA
SF-6D	Criterion:	Test–retest: NA
(Population: 10% PD, 54% HD, 36% conservative care) [56]	Concurrent: Overall SF-6D score was positively correlated with overall ICECAP-O score (r = 0.65, P < 0.001). SF-6D mental health domain score was positively associated with all ICECAP-O domain scores (r = 0.19 to 0.39, P < 0.05). SF-6D physical health (r = 0.32 to 0.40, P < 0.05), social functioning (r = 0.25 to 0.35, P < 0.05), pain (r = 0.29 to 0.53, P < 0.05) and vitality domain (r = 0.21 to 0.48, P < 0.05) scores were positively correlated with all ICECAP-O domain scores with the exception of the attachment domain. SF-6D role limitations domain score was positively associated with all ICECAP-O domain scores with the exception of the attachment and enjoyment domains (r = 0.21 to 0.31, P < 0.05)	Internal consistency: NA

Measure (n = 8)	Validity	Reliability
9-THAI	Construct:	Test–retest: Intraclass correlation coefficients for initial PHY and MEN scores and those at follow-up 1 month later exceeded the recommended 0.7, at 0.79 and 0.78, respectively
(Population: 21% PD, 35% HD and 44% transplant) [46]	Convergent: Participants’ hematocrit levels were positively associated (P = 0.028) with the 9-THAI’s standardized T-summated mental domain scores (MEN)
	Discriminant: Hospitalization in the past year was negatively associated with lower 9-THAI standardized T-summated physical domain scores (PHY) (P < 0.001)
	Criterion:
	Concurrent: Spearman’s rank correlations between 9-THAI and SF-36 domains revealed that the 9-THAI PHY was positively associated with the SF-36 PCS (ρ = 0.40), and that the 9-THAI MEN was positively associated with the SF-36 MCS (ρ = 0.56). Other significant associations included the positive correlation between the 9-THAI illness/discomfort domain and the SF-36 bodily pain domain (ρ = 0.43).
CHEQ	Content: Measure development involved a literature review, focus groups and surveys with patients and health professionals, comprehension test with patients, clinical review, psychometric pretest with patients and an acceptability review with health professionals	Test–retest: Correlations between the baseline and follow-up scores 1 year later for the single-item kidney-specific domains (travel, finance, diet, recreation, work and body image) ranged from 0.55 to 0.79 with three domains equal to or exceeding the recommended 0.7
(Population in pretest: 25% PD, 75% HD) [24]	Construct: Multitrait analysis found that item-scale correlations were at least two SEs greater than the correlations of the item to other scales 99% of the time
(Same population as above study, of which 63% completed measure again at follow-up; 23% PD, 77% HD) [55]	Discriminant: Patients’ number of comorbidities was negatively correlated with the CHEQ physical functioning subscale. Patients’ on HD and PD scored significantly differently on the physical functioning, bodily pain, role-emotional, travel restrictions, dietary restrictions, recreation, dialysis access problems, sexual functioning and quality of life subscales. Patients >65 years old and those younger scored significantly different on the physical function, bodily pain, general health, mental health, financial, diet restrictions, work, body image, symptoms, sleep, sexual functioning and dialysis access problems subscales
		Internal consistency: Cronbach’s αs for the SF-36 domain and additional kidney-specific subscales ranged from 0.57 to 0.93, with all but 2 (time and quality of life) above the recommended α = 0.70. After psychometric pretesting, 11 items of the additional kidney-specific subscales were removed and 3 items were changed—there was no subsequent testing for internal consistency
	Criterion: Predictive: At follow-up 1 year later, 19–30% of all patients scored lower on the CHEQ and worsened, 50–65% of patients’ scores did not change and 16–24% of patients scored higher on the CHEQ and improved. From baseline to follow-up 1 year later, PD patients compared with HD patients experienced significantly lower improvement in physical functioning, general health, sleep and quality subscales. However, PD patients showed greater improvement in the finance subscale compared with HD patients
ICECAP-O	Criterion:	Test–retest: NA
(Population: 10% PD, 54% HD, 36% conservative care) [56]	Concurrent: Overall ICECAP-O score was positively correlated with overall SF-6D score (r = 0.65, P < 0.001), and all SF-5D domain scores (r = 0.30 to 0.56, P < 0.05). ICECAP-O attachment domain score was positively correlated with SF-6D mental health domain score (r = 0.19, P < 0.001), and ICECAP-O enjoyment domain score was positively correlated with all domain scores of the SF-6D with the exception of the role limitations domain (r = 0.27 to 0.43, P < 0.05). ICECAP-0 security domain score (r = 0.21 to 0.35, P < 0.05), role domain score (r = 0.28 to 0.51, P < 0.05) and control domain score (r = 0.27 to 0.53, P < 0.05) were positively correlated with all SF-6D domain scores	Internal consistency: NA
KDQOL-36	Content: The KDQOL-36 was derived from the KDQOL and KDQOL-SF	Internal consistency: Cronbach’s α revealed adequate internal consistency for Burden of Kidney Disease (r = 0.85), Symptoms (r = 0.83) and Effects of Kidney Disease (r = 0.85) domains. Cronbach’s α was not reported for the PCS-12 and MCS-12
(Population: 12% PD, 86% HD, 2% other [not specified]) [57]	Construct: Confirmatory factor analysis supported the three-factor structure of the kidney-specific items of the KDQOL-36. Multitrait analysis found all kidney-specific items were most correlated with the scales they were hypothesized as part of. These three subscales were also significantly positively correlated (r = 0.48 to 0.62, P < 0.05)
	Discriminant: PD patients had higher scores than HD patients on PCS-12, MCS-12 and all three kidney-specific subscales (P < 0.05). Patients with diabetes had lower scores on all domains than those without diabetes (P < 0.001) and patients employed full-time had higher scores on all domains than those not employed full-time (P < 0.05)
	Criterion:
	Concurrent: Each of the three KDQOL-36 subscales were positively correlated with PCS-12 and MCS-12 scores (r = 0.40 to 0.52, P < 0.001), with the largest correlations between the MCS-12 and burden (r = 0.52) and effects (r = 0.50) scales
KDQOL-SF	Content: The KDQOL-SF was adapted from the KDQOL, for which the development process included three patient focus groups, one health professional focus group and a literature review. To create the KDQOL-SF, regression analyses using Goodnight’s maximum R-squared improvement procedure were conducted to determine the subset of each KDQOL domains’ items which accounted for ∼90% of the domain’s variance. Consultation with the Baxter Renal Outcomes Study also led to response scale and item changes	Internal consistency: Cronbach’s α for all domains ranged from 0.61 to 0.90 with all the domains above the recommended 0.7 with the exception of the quality of social interaction and cognitive function domains (0.61–0.68 respectively)
(Population: Patient focus groups 46% PD, 54% HD; proportion of PD participants not reported for correlation or internal consistency coefficients) [17]
	Criterion:
	Concurrent: All KDQOL-SF domain scores had strong correlations with their corresponding KDQOL domain scores (r = 0.91 to 1.00, P < 0.05)
SF-12	Criterion:	Test–retest: NA
(Population: 6% PD and home HD combined, 94% in-center HD) [58]	Predictive: Each incremental point of the SF-12 PCS-12 was associated with a 2.4% lower adjusted associated HR of death and 0.4% decline in HR for first hospitalization. Each incremental point of the SF-12 MCS-12 was associated with 1.2% improved HR of death and 0.6% decline in HR for first hospitalization	Internal consistency: NA
	Concurrent: The PCS-12 had a high correlation (r = 0.94, P < 0.001) with the PCS from the SF-36. Similarly, the MCS score from the SF-12 had a high correlation (r = 0.94, P < 0.001) with the MCS from the SF-36. For both comparisons, the Spearman’s rank correlations were ρ = 0.94 and the intraclass correlation coefficient values were 0.94 (all P < 0.001)	Internal consistency: NA
SF-36	Construct:	Internal consistency: Cronbach’s α exceeded 0.8 for each subscale except social functioning, which had an α of 0.72. For dialysis patients only, the social functioning subscale had a Cronbach’s α of 0.60
(Population: 21% PD, 44% transplant, 35% HD; subgroup comparisons made with age and sex-matched control group) [59]	Convergent: Kendall’s tau-b coefficients revealed in the overall dialysis participant group, SF-36 domain scores were modestly correlated to individual item-scores on an eight-question measure with ESRD-specific symptoms (highest tau-b = 0.30). All SF-36 domains were positively correlated to hemoglobin, albumin, total protein and social and emotional support (P < 0.05). The physical functioning, role physical, general health, vitality and mental health domains were positively correlated with the duration of treatment (P < 0.05)
	Discriminant: All patient groups had lower scores on all SF-36 domains compared with healthy controls (P < 0.001). PD patients tended to have lower scores on all domains compared with transplant recipients. All SF-36 domains were negatively correlated to age, health-risk, time taken to travel to treatment and sex (male coded as 0) (P < 0.05). The bodily pain, social functioning and role emotional domains were negatively correlated with the duration of treatment (P < 0.05)
(Population: 6% PD and home HD combined, 94% in-center HD) [58]	Criterion:	Test–retest: NA
	Predictive: Each incremental point of the PCS-36 was associated with a 2.4% lower adjusted associated HR of death and 0.4% decline in HR for first hospitalization. Each incremental point of the MCS-36 was associated with 1.3% improved HR of death and 0.6% decline in HR for first hospitalization	Internal consistency: NA
	Concurrent: The PCS had a high correlation (r = 0.94, P < 0.001) with the PCS-12 from the SF-12. Similarly, the MCS score had a high correlation (r = 0.94, P < 0001) with the MCS-12 from the SF-12. For both comparisons, the Spearman’s rank correlations were ρ = 0.94 and the intraclass correlation coefficient values were 0.94 (all P < 0.001)	Internal consistency: NA
SF-6D	Criterion:	Test–retest: NA
(Population: 10% PD, 54% HD, 36% conservative care) [56]	Concurrent: Overall SF-6D score was positively correlated with overall ICECAP-O score (r = 0.65, P < 0.001). SF-6D mental health domain score was positively associated with all ICECAP-O domain scores (r = 0.19 to 0.39, P < 0.05). SF-6D physical health (r = 0.32 to 0.40, P < 0.05), social functioning (r = 0.25 to 0.35, P < 0.05), pain (r = 0.29 to 0.53, P < 0.05) and vitality domain (r = 0.21 to 0.48, P < 0.05) scores were positively correlated with all ICECAP-O domain scores with the exception of the attachment domain. SF-6D role limitations domain score was positively associated with all ICECAP-O domain scores with the exception of the attachment and enjoyment domains (r = 0.21 to 0.31, P < 0.05)	Internal consistency: NA

PCS: physical component summary; MCS: mental component summary; HR: hazard ratio. Validation studies were excluded if they were not available in full, were for a translation of the original measure or were not written in English.

Several of the identified measures were created specifically for the CKD population. The KDQOL-36 demonstrated good construct validity and was adapted from the KDQOL. which was developed with substantial content validity through the involvement of both patients and health professionals [57]. Scores on several subscales varied as expected by dialysis modality, diabetes status and employment status, indicating good discriminant validity. Convergent validity was demonstrated through moderate positive correlations between the KDQOL-36 and SF-12 subscales. Internal consistency for each KDQOL-36 domain was good. The KDQOL-SF was also derived from the KDQOL. Convergent validity was excellent when compared with the KDQOL and internal consistency was generally high, though inadequate for two subscales. The SF-12 has good predictive validity, with higher scores associated with a lower incidence of later death or hospitalization. Convergent validity was excellent when compared with the SF-36. The SF-36 demonstrated positive correlations between clinical markers such as albumin and scores indicating social and emotional support. As expected, patients on PD had lower scores than both healthy controls and transplant patients and higher scores were associated with a lower incidence of later death or hospitalization. Internal consistency was adequate in most subscales. The 6-dimension Short Form (SF-6D) demonstrated good convergent validity when compared with the ICEpop CAPability measure for Older people (ICECAP-O).

In addition to CKD-specific measures, several general quality of life measures have been validated in a PD population. The 9-THAI demonstrated a positive correlation between its mental domain score and patient hematocrit levels and a negative association between its physical domain score and patient hospitalization within the previous year [46]. Good convergent validity was demonstrated when compared with the SF-36 and test–retest reliability proved to be adequate [46]. The CHEQ was developed with substantial construct validity and content validity with input from both patients and health professionals [24]. The measure displayed adequate discriminant validity, the scores on the physical functioning scale were negatively correlated with the patient’s number of comorbidities and subscale scores varied as expected between dialysis modalities and age groups [24]. Test–retest validity varied by subscale, with three subscales (finance, diet and work) demonstrating adequate test–retest reliability [55]. Internal consistency was assessed during pretesting and ranged by subscale from moderate to high, although it was not reassessed for the final form of the measure [55]. The ICECAP-O demonstrated convergent validity when compared with the SF-6D [56]. Overall scores on each measure were highly positively correlated and positive correlations between subscales on each measure varied from weak to moderate [56].

DISCUSSION

Life participation is a critically important outcome for patients on PD, but it is inconsistently reported, with 42 different measures being used across 301 studies. These measures varied in terms of response format, number of items, completion time, recall period, cost, content and availability of psychometric data. None of the measures were specifically designed for the PD population. The six most frequently used measures (SF-36, KDQOL-SF, EQ-5D, KDQOL-36, SF-12 and WHOQOL-BREF) were instruments that provided broader measures of quality of life with embedded questions on life participation. Most of the measures assessed life participation in terms of both obligatory and nonobligatory activities. Studies that evaluated the psychometric properties of the life participation measures specifically in patients receiving PD were sparse and incomplete, with only 8 (19%) of the 42 measures containing some validation data for the PD population. Less than half of the participant population in each of the identified validation studies were patients receiving PD and the psychometric properties assessed were limited and inconsistent. Most of the identified measures were originally developed in English and only two were developed specifically for languages other than English. However, many of the commonly used measures, including SF-36 and KDQOL-SF, have been translated and are available in a range of other languages. Based on the identified measures, there is a high degree of uncertainty in the suitability of these measures for patients receiving PD and further validation in this population is needed.

Across the measures used in the PD population, life participation was seldom assessed as a separate construct. Instead, it was often incorporated as a dimension of quality of life and often included few items that assessed life participation directly. It is important to note that the measures that contained some validation data for the PD population were primarily measures of quality of life and were not focused on measuring life participation as the primary construct. This means that these measures are not necessarily validated to assess life participation and a measure that is validated specifically to assess life participation is required.

Life participation is a multifaceted construct and detailed classifications for the specific constructs of activities and participation have been developed as part of the World Health Organization’s International Classification of Functioning, Disability and Health, which includes learning and applying knowledge, general tasks and demands, communication, mobility, self-care, domestic life, interpersonal interactions and relationships, major life areas and community, social and civic life [60]. Outside the field of nephrology, studies have shown that large variations remain in the content and comprehensiveness of existing patient-reported measures of participation across generic and disease-specific measures, suggesting that many measures do not capture all the key concepts related to life participation [61]. It will therefore be important to ensure that a measure of life participation for patients receiving PD captures all of the relevant domains of participation that are considered important to patients.

Life participation has also been identified as a critically important outcome for kidney transplant recipients [62]. A systematic review of outcome measures used to assess life participation in kidney transplantation similarly found that quality of life measures, including the SF-36, KDQOL and EQ-5D, were most commonly used to assess life participation [63]. Some of the measures were specifically developed for use in kidney transplant recipients, whereas none of the measures used for patients receiving PD were specifically developed for the PD population. Compared with many kidney transplant recipients who benefit from being able to return to activities following transplant, patients receiving PD are required to follow a treatment regimen of multiple, daily exchanges that can limit their ability to participate in life [3, 64]. Thus life participation may be conceptualized differently or different aspects of life participation may be more important and this needs to be expounded upon in further research in patients receiving PD.

Patient-reported outcome measures are increasingly being recognized as important tools in practice and policy to improve the quality and cost of care [65]. There is a need to systematically identify and collect patients' perspectives on outcomes that reflect how they feel and function and evaluate treatment benefits and harms through the use of patient-reported outcome measures [66, 67]. However, concerns regarding the use of invalid or unreliable measures must be addressed to ensure improvements in quality of care that are meaningful to patients can be made [65, 68]. This review provides necessary evidence to inform the selection of a suitable patient-reported outcome measure for life participation, which was identified as a critically important outcome for patients receiving PD based on a consensus among patients, caregivers and healthcare providers [69].

We conducted a comprehensive review of measures used to assess life participation in adult patients receiving PD, although we acknowledge that we may not have included every measure of life participation that has been used in other populations. This review was limited to patient-reported measures. Life participation is a construct that relies in part on an individual’s subjective meaning assigned to life roles and activities, which is why we did not include clinician-reported or performance-based measures [13]. As such, we did not include measures assessed through clinical interview, such as the Psychosocial Adjustment to Illness Scale [70], or those designed for completion by proxy (i.e. a caregiver or clinician), such as the Karnofsky Performance Status Scale [71]. We also note that a risk of bias assessment was not undertaken, as our aim was to evaluate the patient-reported outcome measures used to measure life participation in adults receiving PD.

As part of the Standardized Outcomes in Nephrology–Peritoneal Dialysis initiative, further work will be conducted to establish a core outcome measure for life participation in patients on PD. This will include a consensus workshop with patients, caregivers and health professionals to discuss and decide on an appropriate measure for life participation, including the need to develop a new measure. Following the identification or adaptation of an existing measure, or development of a new measure, piloting and validation will be undertaken to ensure that the measure is valid and reliable for use by patients on PD. Translating and adapting the established measure for use in different cultural contexts will be an important part of establishing a core outcome measure for life participation in patients receiving PD.

A standardized and validated measure for life participation is necessary to ensure that life participation is consistently, reliably and meaningfully assessed in patients on PD. This will improve the evaluation of life participation and may ultimately contribute to the development of interventions that could enhance a patient’s ability to participate in daily living.

SUPPLEMENTARY DATA

Supplementary data are available at ndt online.

FUNDING

A.T. is supported by a National Health and Medical Research Council (NHMRC) Fellowship (1106716). D.W.J. is supported by an NHMRC Practitioner Fellowship (1117534). J.S. is supported by a career development grant from the National Institute of Diabetes and Digestive Kidney Diseases at the National Institutes of Health (K23DK103972). The funding organizations had no role in the design and conduct of the study; collection, management, analysis and interpretation of the data or preparation, review or approval of the manuscript.

CONFLICT OF INTEREST STATEMENT

The authors declare no potential conflicts of interest with respect to the research, authorship and/or publication of this article. The results presented in this article have not been published previously in whole or part, except in abstract form.

DATA AVAILABILITY STATEMENT

The data underlying this article are available in the article and in its online supplementary material.

REFERENCES

1

Figueiredo

AE

,

Goodlad

C

,

Clemenger

M

et al.

Evaluation of physical symptoms in patients on peritoneal dialysis

.

Int J Nephrol

2012

;

2012

:

305424

2

Moore

R

,

Teitelbaum

I.

Preventing burnout in peritoneal dialysis patients

.

Adv Perit Dial

2009

;

25

:

92

–

95

3

Tong

A

,

Lesmana

B

,

Johnson

DW

et al.

The perspectives of adults living with peritoneal dialysis: thematic synthesis of qualitative studies

.

Am J Kidney Dis

2013

;

61

:

873

–

888

4

Walker

RC

,

Howard

K

,

Morton

RL

et al.

Patient and caregiver values, beliefs and experiences when considering home dialysis as a treatment option: a semi-structured interview study

.

Nephrol Dial Transplant

2016

;

31

:

133

–

141

5

Manera

KE

,

Tong

A

,

Craig

JC

et al.

An international Delphi survey helped develop consensus-based core outcome domains for trials in peritoneal dialysis

.

Kidney Int

2019

;

96

:

699

–

710

6

Ju

A

,

Josephson

MA

,

Butt

Z

et al.

Establishing a core outcome measure for life participation: a standardized outcomes in nephrology-kidney transplantation consensus workshop report

.

Transplantation

2019

;

103

:

1199

–

1205

7

Purnell

TS

,

Auguste

P

,

Crews

DC

et al.

Comparison of life participation activities among adults treated by hemodialysis, peritoneal dialysis, and kidney transplantation: a systematic review

.

Am J Kidney Dis

2013

;

62

:

953

–

973

8

Law

M.

Participation in the occupations of everyday life

.

Am J Occup Ther

2002

;

56

:

640

–

649

9

Pollice

R

,

Di Mauro

S

,

Bernardini

M

et al. [

Psychopathology, quality of life and social functioning in dialysis treatment and kidney transplantation patients]

.

Clin Ter

2010

;

161

:

329

–

333

10

Prihodova

L

,

Nagyova

I

,

Rosenberger

J

et al.

Social participation after kidney transplantation as a predictor of graft loss and mortality over 10 years: a longitudinal study

.

Transplantation

2015

;

99

:

568

–

575

11

Ulutas

O

,

Farragher

J

,

Chiu

E

et al.

Functional disability in older adults maintained on peritoneal dialysis therapy

.

Perit Dial Int

2016

;

36

:

71

–

78

12

Eyssen

IC

,

Steultjens

MP

,

Dekker

J

et al.

A systematic review of instruments assessing participation: challenges in defining participation

.

Arch Phys Med Rehabil

2011

;

92

:

983

–

997

13

Hemmingsson

H

,

Jonsson

H.

An occupational perspective on the concept of participation in the international classification of functioning, disability and health—some critical remarks

.

Am J Occup Ther

2005

;

59

:

569

–

576

14

van der Mei

SF

,

van Son

WJ

,

van Sonderen

EL

et al.

Factors determining social participation in the first year after kidney transplantation: a prospective study

.

Transplantation

2007

;

84

:

729

–

737

15

Prinsen

CAC

,

Vohra

S

,

Rose

MR

et al.

How to select outcome measurement instruments for outcomes included in a “Core Outcome Set” – a practical guideline

.

Trials

2016

;

17

:

449

16

Ware

JE

Jr ,

Sherbourne

CD.

The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection

.

Med Care

1992

;

30

:

473

–

483

17

Hays

R

,

Kallich

J

,

Mapes

D

et al.

Kidney Disease Quality of Life Short Form (KDQOL-SF™) Version 1.3: A Manual for Use and Scoring

.

Santa Monica, CA

:

Rand,

1997

.

18

EuroQol Group.

A new facility for the measurement of health-related quality of life

.

Health Policy

1990

;

16

:

199

–

208

19

Kidney Disease and Quality of Life™ (KDQOL™-36), English Version 1

. Santa Monica, United States, CA:

RAND,

2000

20

Jenkinson

C

,

Layte

R.

Development and testing of the UK SF-12 (short form health survey)

.

J Health Serv Res Policy

1997

;

2

:

14

–

18

21

Development of the World Health Organization WHOQOL-BREF quality of life assessment

.

Psychol Med

1998

;

28

:

551

–

558

22

Devins

GM

,

Binik

YM

,

Hutchinson

TA

et al.

The emotional impact of end-stage renal disease: importance of patients' perception of intrusiveness and control

.

Int J Psychiatry Med

1984

;

13

:

327

–

343

23

Hunt

SM

,

McKenna

SP

,

McEwen

J

et al.

A quantitative approach to perceived health status: a validation study

.

J Epidemiol Community Health

1980

;

34

:

281

–

286

24

Wu

AW

,

Fink

NE

,

Cagney

KA

et al.

Developing a health-related quality-of-life measure for end-stage renal disease: the CHOICE Health Experience Questionnaire

.

Am J Kidney Dis

2001

;

37

:

11

–

21

25

Sintonen

H

,

Pekurinen

M.

A fifteen-dimensional measure of health-related quality of life (15D) and its applications. In:

Walker

SR

,

Rosser

RM

(eds).

Quality of Life Assessment: Key Issues in the 1990s

.

Dordrecht

:

Springer

,

1993

:

185

–

195

26

Greenberg

G

,

Peterson

R.

Illness Effects Questionnaire—Multi-Perspective (IEQ-MP) Users Manual

. North Tonawanda, NY: Multi-Health Systems,

2002

27

Brazier

J

,

Roberts

J

,

Deverill

M.

The estimation of a preference-based measure of health from the SF-36

.

J Health Econ

2002

;

21

:

271

–

292

28

Fix

AJ

,

Daughton

D.

Psychological Assessment Resources I. Human Activity Profile: professional Manual

.

Odessa, FL

:

Psychological Assessment Resources

,

1988

.

29

Goldberg

D.

Manual of the General Health Questionnaire

.

Windsor, UK

:

NFER-Nelson

,

1978

30

Steele

TE

,

Baltimore

D

,

Finkelstein

SH

et al.

Quality of life in peritoneal dialysis patients

.

J Nerv Ment Dis

1996

;

184

:

368

–

374

31

Bergner

M

,

Bobbitt

RA

,

Carter

WB

et al.

The sickness impact profile: development and final revision of a health status measure

.

Med Care

1981

;

19

:

787

–

805

32

Brorsson

B

,

Ifver

J

,

Hays

RD.

The Swedish Health-Related Quality of Life Survey (SWED-QUAL)

.

Qual Life Res

1993

;

2

:

33

–

45

33

Yellen

SB

,

Cella

DF

,

Webster

K

et al.

Measuring fatigue and other anemia-related symptoms with the functional assessment of cancer therapy (FACT) measurement system

.

J Pain Symptom Manag

1997

;

13

:

63

–

74

34

Aaronson

NK

,

Ahmedzai

S

,

Bergman

B

et al.

The European Organization for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology

.

J Natl Cancer Inst

1993

;

85

:

365

–

376

35

Washburn

RA

,

Smith

KW

,

Jette

AM

et al.

The Physical Activity Scale for the Elderly (PASE): development and evaluation

.

J Clin Epidemiol

1993

;

46

:

153

–

162

36

Reilly

MC

,

Zbrozek

AS

,

Dukes

EM.

The validity and reproducibility of a work productivity and activity impairment instrument

.

Pharmacoeconomics

1993

;

4

:

353

–

365

37

Laupacis

A

,

Muirhead

N

,

Keown

P

et al.

A disease-specific questionnaire for assessing quality of life in patients on hemodialysis

.

Nephron

1992

;

60

:

302

–

306

38

Parkerson

GR

Jr ,

Broadhead

WE

,

Tse

CK.

The Duke Health Profile. A 17-item measure of health and dysfunction

.

Med Care

1990

;

28

:

1056

–

1072

39

Gudex

C

,

Kind

P.

The QALY Toolkit

.

York, UK

:

Centre for Health Economics, University of York

,

1988

.

40

Ustun

T

,

Chatterji

S

,

Kostanjsek

N

et al.

Developing the world health organization disability assessment schedule 2.0

.

Bull World Health Org

2010

;

88

:

815

–

823

41

Booth

M.

Assessment of physical activity: an international perspective

.

Res Q Exerc Sport

2000

;

71

:

114

–

120

42

Grewal

I

,

Lewis

J

,

Flynn

T

et al.

Developing attributes for a generic quality of life measure for older people: preferences or capabilities?

Soc Sci Med

2006

;

62

:

1891

–

1901

43

Chambers

LW

,

Sackett

DL

,

Goldsmith

CH

et al.

Development and application of an index of social function

.

Health Serv Res

1976

;

11

:

430

–

441

44

Dupuy

H.

The Psychological General Wellbeing (PGWB) Index

.

New York

:

Le Jacq

,

1984

45

Kahneman

D

,

Krueger

AB

,

Schkade

DA

et al.

Survey method for characterizing daily life experience: the day reconstruction method

.

Science

2004

;

306

:

1776

–

1780

46

Cheawchanwattana

A

,

Limwattananon

C

,

Gross

C

et al.

The validity of a new practical quality of life measure in patients on renal replacement therapy

.

J Med Assoc Thai

2006

;

89

:

S207

–

S217

47

Hays

RD

,

Sherbourne

CD

,

Mazel

RM.

The RAND 36-item health survey 1.0

.

Health Econ

1993

;

2

:

217

–

227

48

Dąbrowska-Bender

M

,

Dykowska

G

,

Żuk

W

et al.

The impact on quality of life of dialysis patients with renal insufficiency

.

Patient Prefer Adherence

2018

;

12

:

577

–

583

49

Devins

GM

,

Mandin

H

,

Hons

RB

et al.

Illness intrusiveness and quality of life in end-stage renal disease: comparison and stability across treatment modalities

.

Health Psychol

1990

;

9

:

117

–

142

50

Juergensen

E

,

Wuerth

D

,

Finkelstein

SH

et al.

Hemodialysis and peritoneal dialysis: patients' assessment of their satisfaction with therapy and the impact of the therapy on their lives

.

Clin J Am Soc Nephrol

2006

;

1

:

1191

–

1196

51

Panagopoulou

A

,

Hardalias

A

,

Berati

S

,

Fourtounas

C. Psychosocial issues

and

quality

of life in patients

on renal replacement therapy.

Saudi J Kidney Dis Transpl

2009

;

20

(

2

):

212

–

218

52

Szabo

E, Moody H, Hamilton T

et al.

Choice of treatment improves quality of life: a study on patients undergoing dialysis

.

Arch Intern Med

1997

;

157

:

1352

–

1356

53

Tapson

JS

,

Rodger

RS

,

Mansy

H

et al.

Renal replacement therapy in patients aged over 60 years

.

Postgrad Med J

1987

;

63

:

1071

–

1077

54

Tell

GS

,

Mittelmark

MB

,

Hylander

B

,

Shumaker

SA

,

Russell

G

,

Burkart JM et al. Social

support

and

health-related

quality of life in

black and

white

dialysis patients.

ANNA J

1995

;

22

(

3

):

301

–

310

.