Table 1.

Study characteristics of descriptive quantitative studies and results on study quality and associations and findings within the HL–mediators–health outcomes pathway, organized by the Paasche-Orlow-derived mechanisms

Study characteristics
Study results
StudyCKD-pop (N) countryDesignMeasure (% LHL)QMechanism(s)Association of health literacy with mediator within this mechanism(s) or other result related to mechanismAssociation of health literacy or mediator with health outcome?
Studies with results on multiple mechanisms (n = 18)
Devraj et al. [33]1–4 (181) USACross-sectionalNVSa (63)+

Self-care management

Utilization of care

Yes: CKD awareness with self-management behaviours

No: LHL with CKD awareness or duration of participation in clinic

Yes: Worse kidney function associated with higher CKD awareness

No: LHL with severity of CKD

Taylor et al. [34]5 (6842) UKCross-sectionalSILSa (14.6)+

Self-care management

Utilization of care

Yes: LHL with current smoking

Other: LHL is more prevalent in non-waitlisted incident dialysis (20%) patients than in waitlisted dialysis patients (15%) Transplant recipients have the lowest prevalence of LHL (12%)

Yes: LHL with more comorbidities, long-term disabilities, depression and psychosis
Ricardo et al. [8]1–3 (2340) USACross-sectional

sTOFHLAa

(16)

+

Self-care management

Utilization of care

Yes: LHL with current smoking, perceived health and more frequent visits to the nephrologist

No: LHL with medication use

Yes: LHL with lower eGFR, higher urine protein, more cardiovascular disease and more diabetes
Chen et al. [35]1–5 (410) TaiwanCross-sectional

Mandarin HL scalea

(n.a.)

±

Self-care management

Social context

Yes: LHL with worse self-management behaviours and decreased function of social support. Social support associated with self-management behaviours and treatment adherenceNo results reported on health outcomes
Serper et al. [36]5 (T) (98) USAMixed-methodNVSa (37)±

Self-care management

Social context

Yes: LHL with choosing to spend money on expenses other than medication. These decisions were associated with lower medication adherence and explained by the social contextYes: Choosing to spend money on expenses other than medications with higher rates of hospital admission
Demian et al. [37]5 (T) (96) CanadaCross-sectionalHL-Qa,b,c (n.a.)±

Self-care management

Utilization of care

P–P interaction

Other: Multifaceted HL screener indicates: actively managing health is the greatest HL challenge for transplant recipients, while navigating the health system, engaging with providers and understanding information are minor HL challengesYes: Appraising/understanding information associated with worse kidney health
Jain et al. [38]5 (D) (32) USACross-sectionalREALMa (19)±

Self-care management

Utilization of care

No: LHL with treatment regimens, time on peritoneal dialysis or hospitalizationNo: LHL with peritonitis, exit-site infections or dialysis adequacy
Kazley et al. [39]5 (92) USACross-sectional

REALMa

NVSa

(n.a.)

±

Utilization of care

Social context

Yes: LHL with lower likelihood of being waitlisted for transplantation and lower social supportYes: LHL with worse transplant outcomes
Lai et al. [40]5 (D) (63) SingaporeCross-sectional

FCCHLa,b,c

(n.a.)

±

Self-care management

Utilization of care

Yes: LHL with worse blood glucose testing and foot care. Limited communicative and critical with worse diabetes self-management. Limited communicative HL with less exercise

Limited critical HL associated with worse general diet

No: LHL with duration of diabetes treatment

No: LHL with blood glucose levels
Gordon et al. [41]5 (T) (124) USACross-sectionalsTOFHLAa (9) REALMa±

Self-care management

Utilization of care

Yes: LHL with shorter time after transplant. In open questions: patients express the need to improve understanding of transplantation and medication useYes: LHL with higher serum creatinine levels
Wright Nunes et al. [42]1–4 (399) USACross-sectionalREALMa (n.a.)±

Self-care management

P–P interaction

Yes: LHL with lower perceived kidney disease specific knowledge

No: LHL with satisfaction with the provider

Yes: Lower knowledge with lower eGFR awareness of CKD
Zhong et al. [43]1–5 (61) USACross-sectionalREALMa (40.7)

Self-care management

Utilization of care

P–P interaction

Yes: LHL with medication and lifestyle behaviours, lower healthcare transition readiness from paediatric care to adult care services (a.o. ability to visit doctors and make appointments), less seeking of information and asking questions in a group of 18–29 years adolescents. Communication with providers positively influences knowledge. Greater nutrition knowledge predicted healthcare transition readinessNo results reported on health outcomes
Photharos et al. [44]2–4 (275) ThailandCross-sectionalHLS-14a,b,c

Self-care management

Social context

Yes: LHL influences self-efficacy in and performance of lifestyle activities. Self-efficacy is not a mediator of association between LHL and self-management

No: LHL has no direct or indirect effect on social support or family functioning

No results reported on health outcomes
Dodson et al. [45]5 (D) (913) AustraliaCross-sectionalHL-Q a,b,c (n.a.)

Self-care management

Utilization of care

P–P interaction

Social context

Other: Multifaceted HL screener indicates: compared to a control group of other chronic patients, actively managing health is a greater HL challenge for dialysis patients, while they are better in navigating the health system, engaging with providers, understanding and applying information and enabling social supportYes: LHL with worse serum albumin, depressive and anxiety symptoms and disease and mental burden
Patzer et al. [46]5 (T) (99) USAMixed-methodREALMa (24.7)

Self-care management

Utilization of care

Yes: LHL with lower medication knowledge and self-reported treatment adherence

No: LHL with demonstrated proper use of medications and hospitalization

No: LHL with graft rejection
Tuot et al. [47]1–5 (264) USACross-sectionalBrief HLSa (46.6)

Self-care management

P–P interaction

Yes: Providers’ word choice important to create awareness about CKD

No: LHL with CKD awareness

No results reported on health outcomes
Lambert et al. [48]4–5 (153) AustraliaCross-sectionalHeLMSa,b,c (n.a.)

Self-care management

Utilization of care

P–P interaction

Other: Multifaceted HL screener indicates: incorporation of lifestyle is the greatest HL challenge. Filling in forms and accessing healthcare is a frequent HL problem. Communication with providers is a greater HL challenge for peritoneal dialysis patients compared with other CKD patientsNo results reported on health outcomes
Dageforde et al. [49]

5 (104)

USA

Cross-sectionalBrief HLSa (23.1)

Utilization of care

P–P interaction

Yes: LHL with not knowing the next step in the transplantation process. Attending consultations improves transplant knowledge and gives more concerns about finding a donor

No: LHL with first-time centre visits

No results reported on health outcomes
Studies with results on self-care management (n = 9)
Schrauben et al. [50]1–3 (5499) USACohort study

sTOFHLAa

(13)

+Self-care managementYes: LHL with less healthy behaviour patterns (smoking, obesity, lack of physical activity etc.) in ≥65 subgroupYes: Less healthy patterns associated with increased risk of dead, CKD progression and cardiovascular risks
Wong et al. [51]1–4 (137) USACross-sectionalHL-Qa,b,c (26)+Self-care management

Yes: LHL with decreased fast food intake

No: LHL with medication adherence and physical activity

No results reported on health outcomes
Devraj et al. [7]1–4 (150) USACross-sectionalNVSa (63)+Self-care management

Yes: LHL with decreased self-management knowledge and decreased controlling for blood pressure

No: LHL with other self-management knowledge, such as taking medication, sugar and salt intake, having lab checks

Yes: LHL with lower eGFR
Eneanya et al. [52]4–5 (149) USACross-sectionalREALMa (34)Self-care managementYes: LHL with reduced knowledge of cardiopulmonary resuscitation. LHL mediates racial disparities for CPR knowledgeNo results reported on health outcomes
Jones et al. [53]4–5 (D) (41) CanadaCross-sectionalsTOFHLAa (5)Self-care managementYes: LHL with lower transplant and medication knowledge, lower adherence confidence, higher beliefs in medication importance and concerns regarding side effectsNo results reported on health outcomes
Umeukeje et al. [54]5 (D) (100) USACross-sectionalsTOFHLAa (50)Self-care managementNo: LHL with self-motivation of dialysis patients to adhere to phosphate treatmentYes: Lower self-motivation and medication adherence with lower serum phosphorus levels
Adeseun et al. [55]5 (D) (72) USACross-sectionalsTOFHLAa (21)Self-care managementNo: LHL with history of tobacco use

Yes: LHL with higher blood pressure

No: LHL with other lifestyle markers, such as BMI

Green et al. [56]5 (D) (288) USACohort studyREALMa (16)Self-care managementNo: LHL with quality of life

Yes: LHL with burden of comorbidities

No: LHL with symptom burden, depression, dialysis adequacy and lab values (i.e. albumin, haemoglobin)

Foster et al. [57]5 (D) (62) USACross-sectionalsTOFHLAa (30.3)Self-care managementNo: LHL with disaster preparedness (such as having extra medications)No results reported on health outcomes
Studies with results on mechanisms related to utilization of care (n = 10)
Taylor et al. [58]5 (D) (2274) UKCohort studySILSa (24)+Utilization of care

Yes: LHL with reduced access to deceased-donor transplant listing and receiving a transplant from a living donor. This is likely related to patients’ preparation

No: LHL with pre-emptive waitlisting or dialysis modality

No: LHL with catheter use or mortality
Warsame et al. [59]4–5 (D) (1578) USACohort studyBrief HLSa (8.9)+Utilization of careYes: LHL with lower likelihood of being waitlisted for kidney transplantYes: LHL with lower likelihood of undergoing living donor transplant and greater risk of waitlist mortality
Green et al. [60]5 (D) (260) USACohort studyREALMa (16)+Utilization of care

Yes: LHL with missed dialysis treatments, more emergency department visits, and more hospitalization

No: LHL with abbreviating dialysis treatments

Yes: LHL with higher prevalence of comorbidities and fistula use

No: LHL with mortality, lab values or receiving transplant

Dageforde et al. [61]5 (T) (360) USACross-sectional

SLSa

(10)

±Utilization of careOther: LHL more prevalent in patients with a deceased donor (14%) than in patients with a living donor (9%). Living donors have even lower prevalence of LHL (6%)No results reported on health outcomes
Levine et al. [62]2–5 (142) USACohort study

NVSa

(12)

Utilization of careNo: LHL with emergency department visits, hospitalization or length of hospital stayNo results reported on health outcomes
Vilme et al. [63]4–5 (D) (155) USACross-sectional

REALMa

REALM-sfa (n.a)

Utilization of careNo: LHL with patient interest in receiving a kidney from a living donor or with facilitators or barriers to pursue a living donor kidney transplantation, in a cohort of African-AmericansNo results reported on health outcomes
Wong et al. [64]4–5 (121) CanadaCross-sectional

SLSa

(n.a.)

Utilization of careYes: LHL with requiring help to fill in measurements with tablets, and finding this task difficult or tiringNo results reported on health outcomes
Flythe et al. [65]4–5 (154) USACross-sectional

REALMa

(43.3)

Utilization of careYes: LHL shows a trend towards higher likelihood of 30-day hospital readmission (non-significant in adjusted models)No results reported on health outcomes
Tohme et al. [66]5 (D) (286) USAMixed-method

REALMa

(16)

Utilization of care

Yes: LHL with missing dialysis

No: LHL with patients’ abbreviation of dialysis treatment

Missing dialysis with mortality. Abbreviation with hospitalization
Grubbs et al. [67]5 (D) (62) USACross-sectionalsTOFHLAa (32.3)Utilization of care

Yes: LHL with lower referral change for transplant evaluation

No: LHL with treatment preference, uncertainties about treatment decision or being waitlisted

No results reported on health outcomes
Studies with results on mechanisms related to P–P interaction (n = 1)
Bahadori et al. [68]5 (D) (130) IranCross-sectional

HELIAa,b,c

(53.8)

P–P interactionYes: Various subdomains of LHL (understanding and using information, decision-making) with perceived general healthYes: LHL with physical and psychological symptoms
Study characteristics
Study results
StudyCKD-pop (N) countryDesignMeasure (% LHL)QMechanism(s)Association of health literacy with mediator within this mechanism(s) or other result related to mechanismAssociation of health literacy or mediator with health outcome?
Studies with results on multiple mechanisms (n = 18)
Devraj et al. [33]1–4 (181) USACross-sectionalNVSa (63)+

Self-care management

Utilization of care

Yes: CKD awareness with self-management behaviours

No: LHL with CKD awareness or duration of participation in clinic

Yes: Worse kidney function associated with higher CKD awareness

No: LHL with severity of CKD

Taylor et al. [34]5 (6842) UKCross-sectionalSILSa (14.6)+

Self-care management

Utilization of care

Yes: LHL with current smoking

Other: LHL is more prevalent in non-waitlisted incident dialysis (20%) patients than in waitlisted dialysis patients (15%) Transplant recipients have the lowest prevalence of LHL (12%)

Yes: LHL with more comorbidities, long-term disabilities, depression and psychosis
Ricardo et al. [8]1–3 (2340) USACross-sectional

sTOFHLAa

(16)

+

Self-care management

Utilization of care

Yes: LHL with current smoking, perceived health and more frequent visits to the nephrologist

No: LHL with medication use

Yes: LHL with lower eGFR, higher urine protein, more cardiovascular disease and more diabetes
Chen et al. [35]1–5 (410) TaiwanCross-sectional

Mandarin HL scalea

(n.a.)

±

Self-care management

Social context

Yes: LHL with worse self-management behaviours and decreased function of social support. Social support associated with self-management behaviours and treatment adherenceNo results reported on health outcomes
Serper et al. [36]5 (T) (98) USAMixed-methodNVSa (37)±

Self-care management

Social context

Yes: LHL with choosing to spend money on expenses other than medication. These decisions were associated with lower medication adherence and explained by the social contextYes: Choosing to spend money on expenses other than medications with higher rates of hospital admission
Demian et al. [37]5 (T) (96) CanadaCross-sectionalHL-Qa,b,c (n.a.)±

Self-care management

Utilization of care

P–P interaction

Other: Multifaceted HL screener indicates: actively managing health is the greatest HL challenge for transplant recipients, while navigating the health system, engaging with providers and understanding information are minor HL challengesYes: Appraising/understanding information associated with worse kidney health
Jain et al. [38]5 (D) (32) USACross-sectionalREALMa (19)±

Self-care management

Utilization of care

No: LHL with treatment regimens, time on peritoneal dialysis or hospitalizationNo: LHL with peritonitis, exit-site infections or dialysis adequacy
Kazley et al. [39]5 (92) USACross-sectional

REALMa

NVSa

(n.a.)

±

Utilization of care

Social context

Yes: LHL with lower likelihood of being waitlisted for transplantation and lower social supportYes: LHL with worse transplant outcomes
Lai et al. [40]5 (D) (63) SingaporeCross-sectional

FCCHLa,b,c

(n.a.)

±

Self-care management

Utilization of care

Yes: LHL with worse blood glucose testing and foot care. Limited communicative and critical with worse diabetes self-management. Limited communicative HL with less exercise

Limited critical HL associated with worse general diet

No: LHL with duration of diabetes treatment

No: LHL with blood glucose levels
Gordon et al. [41]5 (T) (124) USACross-sectionalsTOFHLAa (9) REALMa±

Self-care management

Utilization of care

Yes: LHL with shorter time after transplant. In open questions: patients express the need to improve understanding of transplantation and medication useYes: LHL with higher serum creatinine levels
Wright Nunes et al. [42]1–4 (399) USACross-sectionalREALMa (n.a.)±

Self-care management

P–P interaction

Yes: LHL with lower perceived kidney disease specific knowledge

No: LHL with satisfaction with the provider

Yes: Lower knowledge with lower eGFR awareness of CKD
Zhong et al. [43]1–5 (61) USACross-sectionalREALMa (40.7)

Self-care management

Utilization of care

P–P interaction

Yes: LHL with medication and lifestyle behaviours, lower healthcare transition readiness from paediatric care to adult care services (a.o. ability to visit doctors and make appointments), less seeking of information and asking questions in a group of 18–29 years adolescents. Communication with providers positively influences knowledge. Greater nutrition knowledge predicted healthcare transition readinessNo results reported on health outcomes
Photharos et al. [44]2–4 (275) ThailandCross-sectionalHLS-14a,b,c

Self-care management

Social context

Yes: LHL influences self-efficacy in and performance of lifestyle activities. Self-efficacy is not a mediator of association between LHL and self-management

No: LHL has no direct or indirect effect on social support or family functioning

No results reported on health outcomes
Dodson et al. [45]5 (D) (913) AustraliaCross-sectionalHL-Q a,b,c (n.a.)

Self-care management

Utilization of care

P–P interaction

Social context

Other: Multifaceted HL screener indicates: compared to a control group of other chronic patients, actively managing health is a greater HL challenge for dialysis patients, while they are better in navigating the health system, engaging with providers, understanding and applying information and enabling social supportYes: LHL with worse serum albumin, depressive and anxiety symptoms and disease and mental burden
Patzer et al. [46]5 (T) (99) USAMixed-methodREALMa (24.7)

Self-care management

Utilization of care

Yes: LHL with lower medication knowledge and self-reported treatment adherence

No: LHL with demonstrated proper use of medications and hospitalization

No: LHL with graft rejection
Tuot et al. [47]1–5 (264) USACross-sectionalBrief HLSa (46.6)

Self-care management

P–P interaction

Yes: Providers’ word choice important to create awareness about CKD

No: LHL with CKD awareness

No results reported on health outcomes
Lambert et al. [48]4–5 (153) AustraliaCross-sectionalHeLMSa,b,c (n.a.)

Self-care management

Utilization of care

P–P interaction

Other: Multifaceted HL screener indicates: incorporation of lifestyle is the greatest HL challenge. Filling in forms and accessing healthcare is a frequent HL problem. Communication with providers is a greater HL challenge for peritoneal dialysis patients compared with other CKD patientsNo results reported on health outcomes
Dageforde et al. [49]

5 (104)

USA

Cross-sectionalBrief HLSa (23.1)

Utilization of care

P–P interaction

Yes: LHL with not knowing the next step in the transplantation process. Attending consultations improves transplant knowledge and gives more concerns about finding a donor

No: LHL with first-time centre visits

No results reported on health outcomes
Studies with results on self-care management (n = 9)
Schrauben et al. [50]1–3 (5499) USACohort study

sTOFHLAa

(13)

+Self-care managementYes: LHL with less healthy behaviour patterns (smoking, obesity, lack of physical activity etc.) in ≥65 subgroupYes: Less healthy patterns associated with increased risk of dead, CKD progression and cardiovascular risks
Wong et al. [51]1–4 (137) USACross-sectionalHL-Qa,b,c (26)+Self-care management

Yes: LHL with decreased fast food intake

No: LHL with medication adherence and physical activity

No results reported on health outcomes
Devraj et al. [7]1–4 (150) USACross-sectionalNVSa (63)+Self-care management

Yes: LHL with decreased self-management knowledge and decreased controlling for blood pressure

No: LHL with other self-management knowledge, such as taking medication, sugar and salt intake, having lab checks

Yes: LHL with lower eGFR
Eneanya et al. [52]4–5 (149) USACross-sectionalREALMa (34)Self-care managementYes: LHL with reduced knowledge of cardiopulmonary resuscitation. LHL mediates racial disparities for CPR knowledgeNo results reported on health outcomes
Jones et al. [53]4–5 (D) (41) CanadaCross-sectionalsTOFHLAa (5)Self-care managementYes: LHL with lower transplant and medication knowledge, lower adherence confidence, higher beliefs in medication importance and concerns regarding side effectsNo results reported on health outcomes
Umeukeje et al. [54]5 (D) (100) USACross-sectionalsTOFHLAa (50)Self-care managementNo: LHL with self-motivation of dialysis patients to adhere to phosphate treatmentYes: Lower self-motivation and medication adherence with lower serum phosphorus levels
Adeseun et al. [55]5 (D) (72) USACross-sectionalsTOFHLAa (21)Self-care managementNo: LHL with history of tobacco use

Yes: LHL with higher blood pressure

No: LHL with other lifestyle markers, such as BMI

Green et al. [56]5 (D) (288) USACohort studyREALMa (16)Self-care managementNo: LHL with quality of life

Yes: LHL with burden of comorbidities

No: LHL with symptom burden, depression, dialysis adequacy and lab values (i.e. albumin, haemoglobin)

Foster et al. [57]5 (D) (62) USACross-sectionalsTOFHLAa (30.3)Self-care managementNo: LHL with disaster preparedness (such as having extra medications)No results reported on health outcomes
Studies with results on mechanisms related to utilization of care (n = 10)
Taylor et al. [58]5 (D) (2274) UKCohort studySILSa (24)+Utilization of care

Yes: LHL with reduced access to deceased-donor transplant listing and receiving a transplant from a living donor. This is likely related to patients’ preparation

No: LHL with pre-emptive waitlisting or dialysis modality

No: LHL with catheter use or mortality
Warsame et al. [59]4–5 (D) (1578) USACohort studyBrief HLSa (8.9)+Utilization of careYes: LHL with lower likelihood of being waitlisted for kidney transplantYes: LHL with lower likelihood of undergoing living donor transplant and greater risk of waitlist mortality
Green et al. [60]5 (D) (260) USACohort studyREALMa (16)+Utilization of care

Yes: LHL with missed dialysis treatments, more emergency department visits, and more hospitalization

No: LHL with abbreviating dialysis treatments

Yes: LHL with higher prevalence of comorbidities and fistula use

No: LHL with mortality, lab values or receiving transplant

Dageforde et al. [61]5 (T) (360) USACross-sectional

SLSa

(10)

±Utilization of careOther: LHL more prevalent in patients with a deceased donor (14%) than in patients with a living donor (9%). Living donors have even lower prevalence of LHL (6%)No results reported on health outcomes
Levine et al. [62]2–5 (142) USACohort study

NVSa

(12)

Utilization of careNo: LHL with emergency department visits, hospitalization or length of hospital stayNo results reported on health outcomes
Vilme et al. [63]4–5 (D) (155) USACross-sectional

REALMa

REALM-sfa (n.a)

Utilization of careNo: LHL with patient interest in receiving a kidney from a living donor or with facilitators or barriers to pursue a living donor kidney transplantation, in a cohort of African-AmericansNo results reported on health outcomes
Wong et al. [64]4–5 (121) CanadaCross-sectional

SLSa

(n.a.)

Utilization of careYes: LHL with requiring help to fill in measurements with tablets, and finding this task difficult or tiringNo results reported on health outcomes
Flythe et al. [65]4–5 (154) USACross-sectional

REALMa

(43.3)

Utilization of careYes: LHL shows a trend towards higher likelihood of 30-day hospital readmission (non-significant in adjusted models)No results reported on health outcomes
Tohme et al. [66]5 (D) (286) USAMixed-method

REALMa

(16)

Utilization of care

Yes: LHL with missing dialysis

No: LHL with patients’ abbreviation of dialysis treatment

Missing dialysis with mortality. Abbreviation with hospitalization
Grubbs et al. [67]5 (D) (62) USACross-sectionalsTOFHLAa (32.3)Utilization of care

Yes: LHL with lower referral change for transplant evaluation

No: LHL with treatment preference, uncertainties about treatment decision or being waitlisted

No results reported on health outcomes
Studies with results on mechanisms related to P–P interaction (n = 1)
Bahadori et al. [68]5 (D) (130) IranCross-sectional

HELIAa,b,c

(53.8)

P–P interactionYes: Various subdomains of LHL (understanding and using information, decision-making) with perceived general healthYes: LHL with physical and psychological symptoms

CKD-pop: population of interest by CKD stages (1, 2, 3, 4 or 5), when applicable specified for transplant (T) or dialysis (D); NVS: Newest Vital Sign; SILS, Single Item Literacy Screener; sTOFHLA: short Test of Functional Health Literacy in Adults; eGFR, estimated glomerular filtration rate; Mandarin HL Scale, Mandarin HL Scale; HL-Q, Health Literacy Questionnaire; REALM-SF, Rapid Estimate of Adult Literacy in Medicine—Short Form; FCCHL, Functional Communicative Critical Health Literacy; HLS, Health Literacy Scale; HeLMS, Health Literacy Management Scale; SLS, Short Literacy Survey; HELIA, Health Literacy for Iranian Adults; BMI, body mass index; n.a., not available; N, number of participants in the study; Q, study quality; +, high-quality study; ±, moderate-quality study; −, low-quality study, based on quality assessment.

a

Functional HL measure.

b

Communicative HL measure.

c

Critical HL measure.

Table 1.

Study characteristics of descriptive quantitative studies and results on study quality and associations and findings within the HL–mediators–health outcomes pathway, organized by the Paasche-Orlow-derived mechanisms

Study characteristics
Study results
StudyCKD-pop (N) countryDesignMeasure (% LHL)QMechanism(s)Association of health literacy with mediator within this mechanism(s) or other result related to mechanismAssociation of health literacy or mediator with health outcome?
Studies with results on multiple mechanisms (n = 18)
Devraj et al. [33]1–4 (181) USACross-sectionalNVSa (63)+

Self-care management

Utilization of care

Yes: CKD awareness with self-management behaviours

No: LHL with CKD awareness or duration of participation in clinic

Yes: Worse kidney function associated with higher CKD awareness

No: LHL with severity of CKD

Taylor et al. [34]5 (6842) UKCross-sectionalSILSa (14.6)+

Self-care management

Utilization of care

Yes: LHL with current smoking

Other: LHL is more prevalent in non-waitlisted incident dialysis (20%) patients than in waitlisted dialysis patients (15%) Transplant recipients have the lowest prevalence of LHL (12%)

Yes: LHL with more comorbidities, long-term disabilities, depression and psychosis
Ricardo et al. [8]1–3 (2340) USACross-sectional

sTOFHLAa

(16)

+

Self-care management

Utilization of care

Yes: LHL with current smoking, perceived health and more frequent visits to the nephrologist

No: LHL with medication use

Yes: LHL with lower eGFR, higher urine protein, more cardiovascular disease and more diabetes
Chen et al. [35]1–5 (410) TaiwanCross-sectional

Mandarin HL scalea

(n.a.)

±

Self-care management

Social context

Yes: LHL with worse self-management behaviours and decreased function of social support. Social support associated with self-management behaviours and treatment adherenceNo results reported on health outcomes
Serper et al. [36]5 (T) (98) USAMixed-methodNVSa (37)±

Self-care management

Social context

Yes: LHL with choosing to spend money on expenses other than medication. These decisions were associated with lower medication adherence and explained by the social contextYes: Choosing to spend money on expenses other than medications with higher rates of hospital admission
Demian et al. [37]5 (T) (96) CanadaCross-sectionalHL-Qa,b,c (n.a.)±

Self-care management

Utilization of care

P–P interaction

Other: Multifaceted HL screener indicates: actively managing health is the greatest HL challenge for transplant recipients, while navigating the health system, engaging with providers and understanding information are minor HL challengesYes: Appraising/understanding information associated with worse kidney health
Jain et al. [38]5 (D) (32) USACross-sectionalREALMa (19)±

Self-care management

Utilization of care

No: LHL with treatment regimens, time on peritoneal dialysis or hospitalizationNo: LHL with peritonitis, exit-site infections or dialysis adequacy
Kazley et al. [39]5 (92) USACross-sectional

REALMa

NVSa

(n.a.)

±

Utilization of care

Social context

Yes: LHL with lower likelihood of being waitlisted for transplantation and lower social supportYes: LHL with worse transplant outcomes
Lai et al. [40]5 (D) (63) SingaporeCross-sectional

FCCHLa,b,c

(n.a.)

±

Self-care management

Utilization of care

Yes: LHL with worse blood glucose testing and foot care. Limited communicative and critical with worse diabetes self-management. Limited communicative HL with less exercise

Limited critical HL associated with worse general diet

No: LHL with duration of diabetes treatment

No: LHL with blood glucose levels
Gordon et al. [41]5 (T) (124) USACross-sectionalsTOFHLAa (9) REALMa±

Self-care management

Utilization of care

Yes: LHL with shorter time after transplant. In open questions: patients express the need to improve understanding of transplantation and medication useYes: LHL with higher serum creatinine levels
Wright Nunes et al. [42]1–4 (399) USACross-sectionalREALMa (n.a.)±

Self-care management

P–P interaction

Yes: LHL with lower perceived kidney disease specific knowledge

No: LHL with satisfaction with the provider

Yes: Lower knowledge with lower eGFR awareness of CKD
Zhong et al. [43]1–5 (61) USACross-sectionalREALMa (40.7)

Self-care management

Utilization of care

P–P interaction

Yes: LHL with medication and lifestyle behaviours, lower healthcare transition readiness from paediatric care to adult care services (a.o. ability to visit doctors and make appointments), less seeking of information and asking questions in a group of 18–29 years adolescents. Communication with providers positively influences knowledge. Greater nutrition knowledge predicted healthcare transition readinessNo results reported on health outcomes
Photharos et al. [44]2–4 (275) ThailandCross-sectionalHLS-14a,b,c

Self-care management

Social context

Yes: LHL influences self-efficacy in and performance of lifestyle activities. Self-efficacy is not a mediator of association between LHL and self-management

No: LHL has no direct or indirect effect on social support or family functioning

No results reported on health outcomes
Dodson et al. [45]5 (D) (913) AustraliaCross-sectionalHL-Q a,b,c (n.a.)

Self-care management

Utilization of care

P–P interaction

Social context

Other: Multifaceted HL screener indicates: compared to a control group of other chronic patients, actively managing health is a greater HL challenge for dialysis patients, while they are better in navigating the health system, engaging with providers, understanding and applying information and enabling social supportYes: LHL with worse serum albumin, depressive and anxiety symptoms and disease and mental burden
Patzer et al. [46]5 (T) (99) USAMixed-methodREALMa (24.7)

Self-care management

Utilization of care

Yes: LHL with lower medication knowledge and self-reported treatment adherence

No: LHL with demonstrated proper use of medications and hospitalization

No: LHL with graft rejection
Tuot et al. [47]1–5 (264) USACross-sectionalBrief HLSa (46.6)

Self-care management

P–P interaction

Yes: Providers’ word choice important to create awareness about CKD

No: LHL with CKD awareness

No results reported on health outcomes
Lambert et al. [48]4–5 (153) AustraliaCross-sectionalHeLMSa,b,c (n.a.)

Self-care management

Utilization of care

P–P interaction

Other: Multifaceted HL screener indicates: incorporation of lifestyle is the greatest HL challenge. Filling in forms and accessing healthcare is a frequent HL problem. Communication with providers is a greater HL challenge for peritoneal dialysis patients compared with other CKD patientsNo results reported on health outcomes
Dageforde et al. [49]

5 (104)

USA

Cross-sectionalBrief HLSa (23.1)

Utilization of care

P–P interaction

Yes: LHL with not knowing the next step in the transplantation process. Attending consultations improves transplant knowledge and gives more concerns about finding a donor

No: LHL with first-time centre visits

No results reported on health outcomes
Studies with results on self-care management (n = 9)
Schrauben et al. [50]1–3 (5499) USACohort study

sTOFHLAa

(13)

+Self-care managementYes: LHL with less healthy behaviour patterns (smoking, obesity, lack of physical activity etc.) in ≥65 subgroupYes: Less healthy patterns associated with increased risk of dead, CKD progression and cardiovascular risks
Wong et al. [51]1–4 (137) USACross-sectionalHL-Qa,b,c (26)+Self-care management

Yes: LHL with decreased fast food intake

No: LHL with medication adherence and physical activity

No results reported on health outcomes
Devraj et al. [7]1–4 (150) USACross-sectionalNVSa (63)+Self-care management

Yes: LHL with decreased self-management knowledge and decreased controlling for blood pressure

No: LHL with other self-management knowledge, such as taking medication, sugar and salt intake, having lab checks

Yes: LHL with lower eGFR
Eneanya et al. [52]4–5 (149) USACross-sectionalREALMa (34)Self-care managementYes: LHL with reduced knowledge of cardiopulmonary resuscitation. LHL mediates racial disparities for CPR knowledgeNo results reported on health outcomes
Jones et al. [53]4–5 (D) (41) CanadaCross-sectionalsTOFHLAa (5)Self-care managementYes: LHL with lower transplant and medication knowledge, lower adherence confidence, higher beliefs in medication importance and concerns regarding side effectsNo results reported on health outcomes
Umeukeje et al. [54]5 (D) (100) USACross-sectionalsTOFHLAa (50)Self-care managementNo: LHL with self-motivation of dialysis patients to adhere to phosphate treatmentYes: Lower self-motivation and medication adherence with lower serum phosphorus levels
Adeseun et al. [55]5 (D) (72) USACross-sectionalsTOFHLAa (21)Self-care managementNo: LHL with history of tobacco use

Yes: LHL with higher blood pressure

No: LHL with other lifestyle markers, such as BMI

Green et al. [56]5 (D) (288) USACohort studyREALMa (16)Self-care managementNo: LHL with quality of life

Yes: LHL with burden of comorbidities

No: LHL with symptom burden, depression, dialysis adequacy and lab values (i.e. albumin, haemoglobin)

Foster et al. [57]5 (D) (62) USACross-sectionalsTOFHLAa (30.3)Self-care managementNo: LHL with disaster preparedness (such as having extra medications)No results reported on health outcomes
Studies with results on mechanisms related to utilization of care (n = 10)
Taylor et al. [58]5 (D) (2274) UKCohort studySILSa (24)+Utilization of care

Yes: LHL with reduced access to deceased-donor transplant listing and receiving a transplant from a living donor. This is likely related to patients’ preparation

No: LHL with pre-emptive waitlisting or dialysis modality

No: LHL with catheter use or mortality
Warsame et al. [59]4–5 (D) (1578) USACohort studyBrief HLSa (8.9)+Utilization of careYes: LHL with lower likelihood of being waitlisted for kidney transplantYes: LHL with lower likelihood of undergoing living donor transplant and greater risk of waitlist mortality
Green et al. [60]5 (D) (260) USACohort studyREALMa (16)+Utilization of care

Yes: LHL with missed dialysis treatments, more emergency department visits, and more hospitalization

No: LHL with abbreviating dialysis treatments

Yes: LHL with higher prevalence of comorbidities and fistula use

No: LHL with mortality, lab values or receiving transplant

Dageforde et al. [61]5 (T) (360) USACross-sectional

SLSa

(10)

±Utilization of careOther: LHL more prevalent in patients with a deceased donor (14%) than in patients with a living donor (9%). Living donors have even lower prevalence of LHL (6%)No results reported on health outcomes
Levine et al. [62]2–5 (142) USACohort study

NVSa

(12)

Utilization of careNo: LHL with emergency department visits, hospitalization or length of hospital stayNo results reported on health outcomes
Vilme et al. [63]4–5 (D) (155) USACross-sectional

REALMa

REALM-sfa (n.a)

Utilization of careNo: LHL with patient interest in receiving a kidney from a living donor or with facilitators or barriers to pursue a living donor kidney transplantation, in a cohort of African-AmericansNo results reported on health outcomes
Wong et al. [64]4–5 (121) CanadaCross-sectional

SLSa

(n.a.)

Utilization of careYes: LHL with requiring help to fill in measurements with tablets, and finding this task difficult or tiringNo results reported on health outcomes
Flythe et al. [65]4–5 (154) USACross-sectional

REALMa

(43.3)

Utilization of careYes: LHL shows a trend towards higher likelihood of 30-day hospital readmission (non-significant in adjusted models)No results reported on health outcomes
Tohme et al. [66]5 (D) (286) USAMixed-method

REALMa

(16)

Utilization of care

Yes: LHL with missing dialysis

No: LHL with patients’ abbreviation of dialysis treatment

Missing dialysis with mortality. Abbreviation with hospitalization
Grubbs et al. [67]5 (D) (62) USACross-sectionalsTOFHLAa (32.3)Utilization of care

Yes: LHL with lower referral change for transplant evaluation

No: LHL with treatment preference, uncertainties about treatment decision or being waitlisted

No results reported on health outcomes
Studies with results on mechanisms related to P–P interaction (n = 1)
Bahadori et al. [68]5 (D) (130) IranCross-sectional

HELIAa,b,c

(53.8)

P–P interactionYes: Various subdomains of LHL (understanding and using information, decision-making) with perceived general healthYes: LHL with physical and psychological symptoms
Study characteristics
Study results
StudyCKD-pop (N) countryDesignMeasure (% LHL)QMechanism(s)Association of health literacy with mediator within this mechanism(s) or other result related to mechanismAssociation of health literacy or mediator with health outcome?
Studies with results on multiple mechanisms (n = 18)
Devraj et al. [33]1–4 (181) USACross-sectionalNVSa (63)+

Self-care management

Utilization of care

Yes: CKD awareness with self-management behaviours

No: LHL with CKD awareness or duration of participation in clinic

Yes: Worse kidney function associated with higher CKD awareness

No: LHL with severity of CKD

Taylor et al. [34]5 (6842) UKCross-sectionalSILSa (14.6)+

Self-care management

Utilization of care

Yes: LHL with current smoking

Other: LHL is more prevalent in non-waitlisted incident dialysis (20%) patients than in waitlisted dialysis patients (15%) Transplant recipients have the lowest prevalence of LHL (12%)

Yes: LHL with more comorbidities, long-term disabilities, depression and psychosis
Ricardo et al. [8]1–3 (2340) USACross-sectional

sTOFHLAa

(16)

+

Self-care management

Utilization of care

Yes: LHL with current smoking, perceived health and more frequent visits to the nephrologist

No: LHL with medication use

Yes: LHL with lower eGFR, higher urine protein, more cardiovascular disease and more diabetes
Chen et al. [35]1–5 (410) TaiwanCross-sectional

Mandarin HL scalea

(n.a.)

±

Self-care management

Social context

Yes: LHL with worse self-management behaviours and decreased function of social support. Social support associated with self-management behaviours and treatment adherenceNo results reported on health outcomes
Serper et al. [36]5 (T) (98) USAMixed-methodNVSa (37)±

Self-care management

Social context

Yes: LHL with choosing to spend money on expenses other than medication. These decisions were associated with lower medication adherence and explained by the social contextYes: Choosing to spend money on expenses other than medications with higher rates of hospital admission
Demian et al. [37]5 (T) (96) CanadaCross-sectionalHL-Qa,b,c (n.a.)±

Self-care management

Utilization of care

P–P interaction

Other: Multifaceted HL screener indicates: actively managing health is the greatest HL challenge for transplant recipients, while navigating the health system, engaging with providers and understanding information are minor HL challengesYes: Appraising/understanding information associated with worse kidney health
Jain et al. [38]5 (D) (32) USACross-sectionalREALMa (19)±

Self-care management

Utilization of care

No: LHL with treatment regimens, time on peritoneal dialysis or hospitalizationNo: LHL with peritonitis, exit-site infections or dialysis adequacy
Kazley et al. [39]5 (92) USACross-sectional

REALMa

NVSa

(n.a.)

±

Utilization of care

Social context

Yes: LHL with lower likelihood of being waitlisted for transplantation and lower social supportYes: LHL with worse transplant outcomes
Lai et al. [40]5 (D) (63) SingaporeCross-sectional

FCCHLa,b,c

(n.a.)

±

Self-care management

Utilization of care

Yes: LHL with worse blood glucose testing and foot care. Limited communicative and critical with worse diabetes self-management. Limited communicative HL with less exercise

Limited critical HL associated with worse general diet

No: LHL with duration of diabetes treatment

No: LHL with blood glucose levels
Gordon et al. [41]5 (T) (124) USACross-sectionalsTOFHLAa (9) REALMa±

Self-care management

Utilization of care

Yes: LHL with shorter time after transplant. In open questions: patients express the need to improve understanding of transplantation and medication useYes: LHL with higher serum creatinine levels
Wright Nunes et al. [42]1–4 (399) USACross-sectionalREALMa (n.a.)±

Self-care management

P–P interaction

Yes: LHL with lower perceived kidney disease specific knowledge

No: LHL with satisfaction with the provider

Yes: Lower knowledge with lower eGFR awareness of CKD
Zhong et al. [43]1–5 (61) USACross-sectionalREALMa (40.7)

Self-care management

Utilization of care

P–P interaction

Yes: LHL with medication and lifestyle behaviours, lower healthcare transition readiness from paediatric care to adult care services (a.o. ability to visit doctors and make appointments), less seeking of information and asking questions in a group of 18–29 years adolescents. Communication with providers positively influences knowledge. Greater nutrition knowledge predicted healthcare transition readinessNo results reported on health outcomes
Photharos et al. [44]2–4 (275) ThailandCross-sectionalHLS-14a,b,c

Self-care management

Social context

Yes: LHL influences self-efficacy in and performance of lifestyle activities. Self-efficacy is not a mediator of association between LHL and self-management

No: LHL has no direct or indirect effect on social support or family functioning

No results reported on health outcomes
Dodson et al. [45]5 (D) (913) AustraliaCross-sectionalHL-Q a,b,c (n.a.)

Self-care management

Utilization of care

P–P interaction

Social context

Other: Multifaceted HL screener indicates: compared to a control group of other chronic patients, actively managing health is a greater HL challenge for dialysis patients, while they are better in navigating the health system, engaging with providers, understanding and applying information and enabling social supportYes: LHL with worse serum albumin, depressive and anxiety symptoms and disease and mental burden
Patzer et al. [46]5 (T) (99) USAMixed-methodREALMa (24.7)

Self-care management

Utilization of care

Yes: LHL with lower medication knowledge and self-reported treatment adherence

No: LHL with demonstrated proper use of medications and hospitalization

No: LHL with graft rejection
Tuot et al. [47]1–5 (264) USACross-sectionalBrief HLSa (46.6)

Self-care management

P–P interaction

Yes: Providers’ word choice important to create awareness about CKD

No: LHL with CKD awareness

No results reported on health outcomes
Lambert et al. [48]4–5 (153) AustraliaCross-sectionalHeLMSa,b,c (n.a.)

Self-care management

Utilization of care

P–P interaction

Other: Multifaceted HL screener indicates: incorporation of lifestyle is the greatest HL challenge. Filling in forms and accessing healthcare is a frequent HL problem. Communication with providers is a greater HL challenge for peritoneal dialysis patients compared with other CKD patientsNo results reported on health outcomes
Dageforde et al. [49]

5 (104)

USA

Cross-sectionalBrief HLSa (23.1)

Utilization of care

P–P interaction

Yes: LHL with not knowing the next step in the transplantation process. Attending consultations improves transplant knowledge and gives more concerns about finding a donor

No: LHL with first-time centre visits

No results reported on health outcomes
Studies with results on self-care management (n = 9)
Schrauben et al. [50]1–3 (5499) USACohort study

sTOFHLAa

(13)

+Self-care managementYes: LHL with less healthy behaviour patterns (smoking, obesity, lack of physical activity etc.) in ≥65 subgroupYes: Less healthy patterns associated with increased risk of dead, CKD progression and cardiovascular risks
Wong et al. [51]1–4 (137) USACross-sectionalHL-Qa,b,c (26)+Self-care management

Yes: LHL with decreased fast food intake

No: LHL with medication adherence and physical activity

No results reported on health outcomes
Devraj et al. [7]1–4 (150) USACross-sectionalNVSa (63)+Self-care management

Yes: LHL with decreased self-management knowledge and decreased controlling for blood pressure

No: LHL with other self-management knowledge, such as taking medication, sugar and salt intake, having lab checks

Yes: LHL with lower eGFR
Eneanya et al. [52]4–5 (149) USACross-sectionalREALMa (34)Self-care managementYes: LHL with reduced knowledge of cardiopulmonary resuscitation. LHL mediates racial disparities for CPR knowledgeNo results reported on health outcomes
Jones et al. [53]4–5 (D) (41) CanadaCross-sectionalsTOFHLAa (5)Self-care managementYes: LHL with lower transplant and medication knowledge, lower adherence confidence, higher beliefs in medication importance and concerns regarding side effectsNo results reported on health outcomes
Umeukeje et al. [54]5 (D) (100) USACross-sectionalsTOFHLAa (50)Self-care managementNo: LHL with self-motivation of dialysis patients to adhere to phosphate treatmentYes: Lower self-motivation and medication adherence with lower serum phosphorus levels
Adeseun et al. [55]5 (D) (72) USACross-sectionalsTOFHLAa (21)Self-care managementNo: LHL with history of tobacco use

Yes: LHL with higher blood pressure

No: LHL with other lifestyle markers, such as BMI

Green et al. [56]5 (D) (288) USACohort studyREALMa (16)Self-care managementNo: LHL with quality of life

Yes: LHL with burden of comorbidities

No: LHL with symptom burden, depression, dialysis adequacy and lab values (i.e. albumin, haemoglobin)

Foster et al. [57]5 (D) (62) USACross-sectionalsTOFHLAa (30.3)Self-care managementNo: LHL with disaster preparedness (such as having extra medications)No results reported on health outcomes
Studies with results on mechanisms related to utilization of care (n = 10)
Taylor et al. [58]5 (D) (2274) UKCohort studySILSa (24)+Utilization of care

Yes: LHL with reduced access to deceased-donor transplant listing and receiving a transplant from a living donor. This is likely related to patients’ preparation

No: LHL with pre-emptive waitlisting or dialysis modality

No: LHL with catheter use or mortality
Warsame et al. [59]4–5 (D) (1578) USACohort studyBrief HLSa (8.9)+Utilization of careYes: LHL with lower likelihood of being waitlisted for kidney transplantYes: LHL with lower likelihood of undergoing living donor transplant and greater risk of waitlist mortality
Green et al. [60]5 (D) (260) USACohort studyREALMa (16)+Utilization of care

Yes: LHL with missed dialysis treatments, more emergency department visits, and more hospitalization

No: LHL with abbreviating dialysis treatments

Yes: LHL with higher prevalence of comorbidities and fistula use

No: LHL with mortality, lab values or receiving transplant

Dageforde et al. [61]5 (T) (360) USACross-sectional

SLSa

(10)

±Utilization of careOther: LHL more prevalent in patients with a deceased donor (14%) than in patients with a living donor (9%). Living donors have even lower prevalence of LHL (6%)No results reported on health outcomes
Levine et al. [62]2–5 (142) USACohort study

NVSa

(12)

Utilization of careNo: LHL with emergency department visits, hospitalization or length of hospital stayNo results reported on health outcomes
Vilme et al. [63]4–5 (D) (155) USACross-sectional

REALMa

REALM-sfa (n.a)

Utilization of careNo: LHL with patient interest in receiving a kidney from a living donor or with facilitators or barriers to pursue a living donor kidney transplantation, in a cohort of African-AmericansNo results reported on health outcomes
Wong et al. [64]4–5 (121) CanadaCross-sectional

SLSa

(n.a.)

Utilization of careYes: LHL with requiring help to fill in measurements with tablets, and finding this task difficult or tiringNo results reported on health outcomes
Flythe et al. [65]4–5 (154) USACross-sectional

REALMa

(43.3)

Utilization of careYes: LHL shows a trend towards higher likelihood of 30-day hospital readmission (non-significant in adjusted models)No results reported on health outcomes
Tohme et al. [66]5 (D) (286) USAMixed-method

REALMa

(16)

Utilization of care

Yes: LHL with missing dialysis

No: LHL with patients’ abbreviation of dialysis treatment

Missing dialysis with mortality. Abbreviation with hospitalization
Grubbs et al. [67]5 (D) (62) USACross-sectionalsTOFHLAa (32.3)Utilization of care

Yes: LHL with lower referral change for transplant evaluation

No: LHL with treatment preference, uncertainties about treatment decision or being waitlisted

No results reported on health outcomes
Studies with results on mechanisms related to P–P interaction (n = 1)
Bahadori et al. [68]5 (D) (130) IranCross-sectional

HELIAa,b,c

(53.8)

P–P interactionYes: Various subdomains of LHL (understanding and using information, decision-making) with perceived general healthYes: LHL with physical and psychological symptoms

CKD-pop: population of interest by CKD stages (1, 2, 3, 4 or 5), when applicable specified for transplant (T) or dialysis (D); NVS: Newest Vital Sign; SILS, Single Item Literacy Screener; sTOFHLA: short Test of Functional Health Literacy in Adults; eGFR, estimated glomerular filtration rate; Mandarin HL Scale, Mandarin HL Scale; HL-Q, Health Literacy Questionnaire; REALM-SF, Rapid Estimate of Adult Literacy in Medicine—Short Form; FCCHL, Functional Communicative Critical Health Literacy; HLS, Health Literacy Scale; HeLMS, Health Literacy Management Scale; SLS, Short Literacy Survey; HELIA, Health Literacy for Iranian Adults; BMI, body mass index; n.a., not available; N, number of participants in the study; Q, study quality; +, high-quality study; ±, moderate-quality study; −, low-quality study, based on quality assessment.

a

Functional HL measure.

b

Communicative HL measure.

c

Critical HL measure.

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