| Author/year . | Study purpose . | Methods . | Findings . | Level of evidence . |
|---|---|---|---|---|
| Campbell et al., 201728 | To understand better the impact that financial barriers have on patients with diabetes and the strategies that they use to cope with them | Population: 24 patients (10 men and 14 women) including 10 who used insulin Mean age men 59.1 years Mean age women 56.5 years Methods: Secondary analysis of 24 interviews of patients with diabetes and perceived financial barriers Semi-structured interviews were undertaken either face-to-face or by telephone Data analysis was performed using inductive thematic analysis. Measures: Qualitative data: Personal interviews exploring the following domains: Experience of living with diabetes Experience of having financial barriers erceived reasons for financial barriers Perceived consequences of financial barriers Mechanisms for overcoming financial barriers | The predominant aspects of care to which participants described financial barriers were medications, diabetes supplies and healthy food. Participants described that health professionals had the potential to either play an important supporting role; or alternatively, that they could also worsen the impacts of financial barriers. | Level 6 |
| Taylor et al., 201729 | To document in people with DM attitudes and beliefs that may result in psychological insulin resistance | Population: 117 patients Women 80 Mean age 66 years Methods: Quantitative through an interview administrated questionnaire Telephone interviews Measures: Attitudes and beliefs towards insulin (ITAS questionnaire) | Negative perceptions about insulin use 1. Meant a worsening of diabetes (68%) 2. Would worry family (63%) 3. Feared self-injection (58%) 4. Meant a failure in self-management (57%) 5. Injections were painful (54%) 6. Would be seen as being sicker (46%) 7. Increased hypoglycaemia risk (38%) 8. Required effort (34%) 9. Causes weight gain (27%) 10. Causes a deterioration in health (14%) 11. Would have to give up enjoyable activities (10%) Positive perceptions • Helps good glycaemic control (78%) • Would prevent complications (61%) • Improves health (58%) Patients using insulin had fewer negative perceptions than those not on insulin. | Level 6 |
| Taylor et al., 201630 | To explore self-reported knowledge and attitudes to insulin treatment among a group of adults with poorly controlled diabetes | Population: 29 patients Women 14 Methods: Quantitative study Cross-sectional study Measures: Insulin treatment Appraisal scale (ITAS) and barriers to insulin treatment Questionnaire (BITQ) scores related to knowledge and attitudes to insulin treatment, clinical and demographic measures | Perceived barriers are higher among older patients with fewer years of formal education. Low score in ‘knowledge’ items in the ITAS. | Level 6 |
| Victor Spain et al., 201614 | To explore the barriers that adult Americans experience when taking injectable medications for type 2 diabetes, from the time of filling the initial prescription through the decision to discontinue the medication | Population: 1190 patients Women 986 Methods: Quantitative using self-administrated questionnaire developed for the survey and DES Internet-based survey. Measures: Patients were asked: 1. If they filled the medication of interest when first prescribed, time until filling the prescription and if filled, how long until they started taking it 2. About their reactions to being prescribed an injectable 3. For those initiating the medication of interest, if they discontinued using it 4. For those discontinuing the medication of interest, the reasons for discontinuing use and the decision-making process for discontinuation 5. If still taking the medication of interest, what barriers (if any) to taking it they experienced | Among patients who delayed filling their prescription by more than one week, cost was a common reason for delay. The most commonly reported barrier to maintaining injectable medication was injection concerns (42%) such as aversion to needles, pain or needle size. Lack of perceived need was the most common reason for discontinuation for basal (47%) and prandial/premixed (44%) insulin. For liraglutide, the most common reason for discontinuation was experiencing an adverse event (33%), for exenatide once weekly, it was injection concerns such as aversion to needles, pain, or needle size (38%). | Level 6 |
| Papaspurou et al., 201531 | To investigate the health needs and self-management problems faced by patients with diabetes daily | Population: 15 patients Women 9 Methods: Qualitative study Sem-structured interviews (interpretative phenomenological approach) Measures: Health needs and self-management problems faced by patients with DM | Patients face fears and have unaddressed needs related to the diagnosis, treatment, expected impacts, prognosis and the daily management of the disease. Patients have several care needs; need of psychological support and education to recognize and prevent hypoglycaemia. Need of continuous education and communication with health professionals. | Level 6 |
| Patel et al., 201515 | To explore attitudes towards insulin acceptance an ethnically diverse population of people with type 2 diabetes | Population: 18 patients Women 9 Methods: Qualitative study Semi-structured interviews Purposive sampling Measures: Concerns, views and beliefs about the necessity of insulin | Decisions about accepting insulin involved balancing concerns against the perceived necessity of insulin (generally, inadequacy of oral medication). | Level 6 |
| Brod et al., 201432 | To identify patients’ beliefs as well as clinical realities about insulin that may be barriers to type 2 diabetes patients initiating insulin treatment | Population: 87 patients Women 37 Mean age: 52.9 years Methods: Purposive sample Mixed methods study 13 focus group in 5 different countries Measures: Qualitative data on attitudes through focus groups. Quantitative data were collected to understand better the factors influencing participants’ decisions about initiating insulin and patient-held beliefs regarding the process through the developed educational tool ‘questions about starting insulin: information on the myths, misconceptions and clinical realities about insulin’. | Patients’ reported the following key barriers to initiating insulin Treatment: 1.Insulin as a treatment of last resort 2. Insulin as evidence of personal failure to self-manage diabetes 3. Risk of long-term complications from insulin 4. Side effects of insulin 5. Treatment convenience 6. Needles and injections 7. Weight gain from insulin | Level 4 |
| Simon et al., 201433 | To identify experiences with and barriers to self-monitoring of blood glucose, insulin injection, and insulin titration among patients with type 2 diabetes | Population: 20 patients Group A: Patients who had never used computer-assisted insulin self-titration system Women 4 Mean age 53.9 years Group B: Patients who were enrolled in a 4-week pilot involving computer-assisted insulin self-titration system Women 4 Mean age 56.9 years Sampling method: In-depth, semi-structured interviews Face to face interviews for group A and telephone interviews for group B Design: Qualitative study Measures: Experiences with and barriers to insulin Self-management | Patients fear the lifelong commitment to insulin therapy and disease progression Barriers when implementing insulin therapy (e.g. perceived usefulness, physical impact, fear of injection) Difficulties increasing the insulin dose (fear of hypoglycaemia) Association of higher insulin doses with disease progression Ignorant of treatment targets Patients who never used a computer-assisted insulin self-titration system felt they had enough knowledge to know when their insulin should be adjusted, but still believed that the system advice would be useful to confirm their reasoning. | Level 6 |
| Iyer et al., 201334 | To investigate perceptions of and attitudes towards long-acting (once every 2 weeks) injectable antipsychotics among patients | Population: 34 patients Women 7 Methods: Qualitative study Focus groups Measures: Experiences with and attitudes toward LAI antipsychotic medication | 1. Awareness of and knowledge about LAI antipsychotics: Some patients had never heard about LAI antipsychotics, some others reported not having understood what was discussed with them regarding LAI antipsychotics and some patients had typically heard about. 2. Perceptions about LAI antipsychotics: Positive perceptions: Relapse prevention and reduced effort in ensuring adherence Negative perceptions: Financial costs and the inconvenience of appointments to receive injections a. Cost and convenience considerations b. Issues arising from the coercive context under which LAI antipsychotics were often prescribed | Level 6 |
| Potkin et al., 201311 | To understand better prescriber, patient and caregiver perspectives about LAI antipsychotics (administered once every 2 or 4 weeks) therapy and how these perspectives affect their use | Population: 22 patients Women 13 Mean age 45.7 years Methods: Qualitative Ethnographic information of non-random sample of prescriber–patient conversations. Also, in-person observations in mental health centres including home visits Telephone in-depth interviews for additional information Measures: Perspectives about LAI antipsychotic therapy How perspectives affect LAI use | Involvement of patients in treatment decisions was greater when discussing LAI antipsychotics versus oral antipsychotic treatment. LAI antipsychotics -naïve patients expressed neutral rather than favorable or unfavorable responses. Patient resistance was often related to negative feelings about injections. Patient-described benefits of LAI antipsychotics versus orals included perceived rapid symptom improvement and greater overall efficacy. | Level 6 |
| Tan et al., 201135 | To determine the issues relating to insulin initiation for diabetes patients managed in primary care polyclinics | Population: 11 patients Women 5 Methods: Qualitative study, focus groups Purposive sample (doctors and nurses from different training backgrounds and years of experience; poorly controlled diabetes patients who refused insulin therapy despite being on maximum oral hypoglycaemic drugs and patients who were on insulin therapy). Measures: Barriers to insulin commencement | 1. Launching the topic and doctor-patient communication on insulin therapy were key issues in insulin initiation. 2. Patient barriers to insulin commencement included: refusal to acknowledge the need for insulin therapy, its perception as a social stigma, an inconvenient mode of treatment or punishment for failure and fear of needles, side effects and complications and the healthcare professionals’ attitude and experience with insulin therapy. | Level 6 |
| Jenkings et al., 201036 | To explore patients and health professionals’ experiences of initiating insulin as part of the treating to target in DM | Population: 45 patients and 21 health professionals Women 16 Mean age 64.7 years Methods: Qualitative through interviews Purposive sample Measures: Interviews which explored participants understandings and experiences of insulin initiation | Patients reported the key factors that fostered resistance to insulin initiation: 1. Engagement with disease progression. Patients felt that they personally failed with diabetes management. 2. Managing anxieties about insulin therapy. Patients were anxious about the prospect of injecting but frequently they surprised when they discover that they can use insulin pens. | Level 6 |
| Karter et al., 201016 | To investigate barriers to insulin initiation following a new prescription | Population: 169 patients Adherent patients mean age 58 years Women 47% Non-adherent patients mean age 61 years 35% women Methods: Mixed methods Telephone interviews and self-administered survey Patients receiving a new electronic prescription for insulin. Random sample from pharmacy records Measures: Barriers to insulin initiation among non-adherent and adherent patients newly prescribed insulin | Non-adherent patients: Reasons for failing to initiate insulin included: the patient planned to change health behaviours instead of starting insulin, injection phobia, negative impact on work, concerns about long-term medication use, inconvenience and not believing insulin was needed. Believed that people who require insulin ‘have not taken care of themselves in the past’ and that ‘taking insulin can cause. . .’ other consequences. They believed insulin causes harm. Expressed significantly more concern about their inability to adjust insulin dosage, the impact on social life and work, injection pain, and side effects. Reported problems learning about their medical condition because of difficulty understanding written information and claimed providers failed to adequately explain insulin’s risk and benefits. Fewer non-adherent patients reported receiving insulin self-management training from their doctor, nurse, health educator, or a class. | Level 4 |
| Peyrot et al., 201037 | To access factors associated with patient frequency of intentionally skipping insulin injections | Population: 502 patients Women 226 Mean age 55 years Methods: Quantitative study Internet survey with a questionnaire developed for the particular survey. Measures: Disease type, duration, complications and treatment Perceived burden of insulin injections The experience of injections Negative affect toward insulin injections Frequency of skipping insulin injections | Patients who are not managing their diabetes are significantly more likely to see insulin therapy as potentially beneficial. Most nurses and general practitioners delay insulin therapy until absolutely necessary, but specialists and opinion leaders are less likely to do so. Delay of insulin therapy is significantly less likely when physicians and nurses see their patients as more adherent to medication or appointment regimens, view insulin as more efficacious, and when they are less likely to delay oral diabetes medications. | Level 6 |
| Rubin et al., 200910 | To compare patients’ perceptions of injection-related problems with clinicians estimates of those problems | Population: 501 patients Women 225 Mean age 54.9 years Methods: Quantitative through interviews Internet survey of self-identified patients with diabetes Measures: 1. Perceived burden of insulin injections 2. Effect of injections on quality of life 3. Effect of injection problems on adherence to treatment 4. Patient-provider injection-related communication 5. Injection-related support from provider 6. Interest in and knowledge of products to ease injection burden | The majority of patients would like to reduce the number of injections they take each day. Almost half said that they would be more likely to take their insulin injections regularly if a product were available to ease the pain. Patients also reported: 1. Injections were a serious burden 2. They were dissatisfied with the way they took insulin 3. Injections had a substantial negative impact on quality of life 4. They skipped injections they should take or 5. Injection-related problems affected the number of injections they were willing to take. Half of the patients said they mentioned injection-related problems to their provider; a similar number reported that their providers had not given them a solution to problems with injection-related pain and bruising. | Level 6 |
| Khan et al., 200838 | To determine the prevalence and reasons for refusal to commence insulin in Bangladeshi patients with type 2 diabetes | Population: 212 patients Women 100 Mean age 55.3 years Methods: Qualitative study through focus groups Data were analysed by thematic content analysis using the constant comparative method. Measures: Reasons of insulin refusal | Patients refused insulin due to: 1. Disease severity: perceptions that requirement for insulin was an indicator of a more serious stage of their condition 2. Insulin leading to premature death: common suggestion that commencing insulin led to early death 3. Loss of control: fear of hypoglycaemia, weight gain, loss of independence and reliance on others to give insulin or look for signs of hypoglycaemia 4. Lack of perception of benefits: poor perception of the benefits of improved glycaemic control on quality of life and cardiovascular risk 5. Needle anxiety: concern over frequent injections. | Level 6 |
| Larkin et al., 200839 | To explore the attitudes that contribute to psychological insulin resistance (PIR) in insulin-naive patients with type 2 diabetes and to identify predictors of PIR | Population: 100 patients Women 39 Mean age 62 years Methods: Quantitative study Self-administrative questionnaires Measures: 1. Survey for people who do not take insulin: reasons why people are reluctant to start insulin, including risk of side effects or complications and changes in lifestyle 2. ITAS: assessment of patients’ perceptions of insulin treatment 3. HADS: depression screening questionnaire | The most commonly expressed negative attitudes were concern regarding hypoglycaemia, permanent need for insulin therapy, less flexibility, and feelings of failure. Less than 40% expressed fear of self-injection or thought that injections were painful. Poorer general health and higher depression scores also correlated with PIR. | Level 6 |
| Hayes et al., 200640 | To explore diabetes medication experiences of patients with type 2 diabetes | Population: 138 patients Women 94 61% were using insulin Methods: Qualitative study through focus groups Measures: How patients experience their diabetes drug treatment What they dislike about treatment What makes it inconvenient or inflexible, intolerable, or unacceptable What factors contribute to their treatment satisfaction and treatment preference | Patients expressed: 1. Inconvenience and inflexibility of the timing and frequency of administrations of many diabetes medication regimens. 2. Avoidance of injections and/or insulin therapy 3. The physical and emotional side effects of diabetes medications. Treatment preferences: Participants would weigh the convenience and flexibility, route of administration, side effects, and cost of the medications. | Level 6 |
| Morris et al., 200541 | To elucidate the range of subjective experiences of men and women with type 2 diabetes who have recently gone on to insulin | Population: Six patients Women 3 Methods: Qualitative study Semi-structured interviews which were audiotape-recorded and transcribed. Transcripts were analysed together with the researcher’s observational notes and documentary evidence (phenomenological analysis) Purposive sample Measures: Experiences of patients with DM | Patients experienced a range of initial reactions (from shock and anger, to relief) and perceptions of insulin, sometimes resulting in an altered self-image. Perceptions for insulin were shown to change over time, with some patients eventually accepting insulin and becoming empowered. | Level 6 |
| Mollema et al., 200142 | To define clinically relevant cut-off points for severe fear of self-injecting and self-treated phobia in insulin-treated patients with diabetes and to estimate the magnitude of these phobias in our research population | Population: 24 insulin-treated adult diabetes patients Women 17 Mean age 44.5 years Methods: Quantitative study Cross-sectional survey Purposive sample (high-scorers on FSI and/or FST) Measures: Relevance of fear of self-injecting (FSI) and self-testing (FST) (phobia) in insulin-treated patients with diabetes D-FISQ and BAT questionnaires | Severe FSI and FST, characterised by emotional distress and avoidance behaviour, seems to occur in a small group of insulin-treated patients with diabetes | Level 6 |
| Author/year . | Study purpose . | Methods . | Findings . | Level of evidence . |
|---|---|---|---|---|
| Campbell et al., 201728 | To understand better the impact that financial barriers have on patients with diabetes and the strategies that they use to cope with them | Population: 24 patients (10 men and 14 women) including 10 who used insulin Mean age men 59.1 years Mean age women 56.5 years Methods: Secondary analysis of 24 interviews of patients with diabetes and perceived financial barriers Semi-structured interviews were undertaken either face-to-face or by telephone Data analysis was performed using inductive thematic analysis. Measures: Qualitative data: Personal interviews exploring the following domains: Experience of living with diabetes Experience of having financial barriers erceived reasons for financial barriers Perceived consequences of financial barriers Mechanisms for overcoming financial barriers | The predominant aspects of care to which participants described financial barriers were medications, diabetes supplies and healthy food. Participants described that health professionals had the potential to either play an important supporting role; or alternatively, that they could also worsen the impacts of financial barriers. | Level 6 |
| Taylor et al., 201729 | To document in people with DM attitudes and beliefs that may result in psychological insulin resistance | Population: 117 patients Women 80 Mean age 66 years Methods: Quantitative through an interview administrated questionnaire Telephone interviews Measures: Attitudes and beliefs towards insulin (ITAS questionnaire) | Negative perceptions about insulin use 1. Meant a worsening of diabetes (68%) 2. Would worry family (63%) 3. Feared self-injection (58%) 4. Meant a failure in self-management (57%) 5. Injections were painful (54%) 6. Would be seen as being sicker (46%) 7. Increased hypoglycaemia risk (38%) 8. Required effort (34%) 9. Causes weight gain (27%) 10. Causes a deterioration in health (14%) 11. Would have to give up enjoyable activities (10%) Positive perceptions • Helps good glycaemic control (78%) • Would prevent complications (61%) • Improves health (58%) Patients using insulin had fewer negative perceptions than those not on insulin. | Level 6 |
| Taylor et al., 201630 | To explore self-reported knowledge and attitudes to insulin treatment among a group of adults with poorly controlled diabetes | Population: 29 patients Women 14 Methods: Quantitative study Cross-sectional study Measures: Insulin treatment Appraisal scale (ITAS) and barriers to insulin treatment Questionnaire (BITQ) scores related to knowledge and attitudes to insulin treatment, clinical and demographic measures | Perceived barriers are higher among older patients with fewer years of formal education. Low score in ‘knowledge’ items in the ITAS. | Level 6 |
| Victor Spain et al., 201614 | To explore the barriers that adult Americans experience when taking injectable medications for type 2 diabetes, from the time of filling the initial prescription through the decision to discontinue the medication | Population: 1190 patients Women 986 Methods: Quantitative using self-administrated questionnaire developed for the survey and DES Internet-based survey. Measures: Patients were asked: 1. If they filled the medication of interest when first prescribed, time until filling the prescription and if filled, how long until they started taking it 2. About their reactions to being prescribed an injectable 3. For those initiating the medication of interest, if they discontinued using it 4. For those discontinuing the medication of interest, the reasons for discontinuing use and the decision-making process for discontinuation 5. If still taking the medication of interest, what barriers (if any) to taking it they experienced | Among patients who delayed filling their prescription by more than one week, cost was a common reason for delay. The most commonly reported barrier to maintaining injectable medication was injection concerns (42%) such as aversion to needles, pain or needle size. Lack of perceived need was the most common reason for discontinuation for basal (47%) and prandial/premixed (44%) insulin. For liraglutide, the most common reason for discontinuation was experiencing an adverse event (33%), for exenatide once weekly, it was injection concerns such as aversion to needles, pain, or needle size (38%). | Level 6 |
| Papaspurou et al., 201531 | To investigate the health needs and self-management problems faced by patients with diabetes daily | Population: 15 patients Women 9 Methods: Qualitative study Sem-structured interviews (interpretative phenomenological approach) Measures: Health needs and self-management problems faced by patients with DM | Patients face fears and have unaddressed needs related to the diagnosis, treatment, expected impacts, prognosis and the daily management of the disease. Patients have several care needs; need of psychological support and education to recognize and prevent hypoglycaemia. Need of continuous education and communication with health professionals. | Level 6 |
| Patel et al., 201515 | To explore attitudes towards insulin acceptance an ethnically diverse population of people with type 2 diabetes | Population: 18 patients Women 9 Methods: Qualitative study Semi-structured interviews Purposive sampling Measures: Concerns, views and beliefs about the necessity of insulin | Decisions about accepting insulin involved balancing concerns against the perceived necessity of insulin (generally, inadequacy of oral medication). | Level 6 |
| Brod et al., 201432 | To identify patients’ beliefs as well as clinical realities about insulin that may be barriers to type 2 diabetes patients initiating insulin treatment | Population: 87 patients Women 37 Mean age: 52.9 years Methods: Purposive sample Mixed methods study 13 focus group in 5 different countries Measures: Qualitative data on attitudes through focus groups. Quantitative data were collected to understand better the factors influencing participants’ decisions about initiating insulin and patient-held beliefs regarding the process through the developed educational tool ‘questions about starting insulin: information on the myths, misconceptions and clinical realities about insulin’. | Patients’ reported the following key barriers to initiating insulin Treatment: 1.Insulin as a treatment of last resort 2. Insulin as evidence of personal failure to self-manage diabetes 3. Risk of long-term complications from insulin 4. Side effects of insulin 5. Treatment convenience 6. Needles and injections 7. Weight gain from insulin | Level 4 |
| Simon et al., 201433 | To identify experiences with and barriers to self-monitoring of blood glucose, insulin injection, and insulin titration among patients with type 2 diabetes | Population: 20 patients Group A: Patients who had never used computer-assisted insulin self-titration system Women 4 Mean age 53.9 years Group B: Patients who were enrolled in a 4-week pilot involving computer-assisted insulin self-titration system Women 4 Mean age 56.9 years Sampling method: In-depth, semi-structured interviews Face to face interviews for group A and telephone interviews for group B Design: Qualitative study Measures: Experiences with and barriers to insulin Self-management | Patients fear the lifelong commitment to insulin therapy and disease progression Barriers when implementing insulin therapy (e.g. perceived usefulness, physical impact, fear of injection) Difficulties increasing the insulin dose (fear of hypoglycaemia) Association of higher insulin doses with disease progression Ignorant of treatment targets Patients who never used a computer-assisted insulin self-titration system felt they had enough knowledge to know when their insulin should be adjusted, but still believed that the system advice would be useful to confirm their reasoning. | Level 6 |
| Iyer et al., 201334 | To investigate perceptions of and attitudes towards long-acting (once every 2 weeks) injectable antipsychotics among patients | Population: 34 patients Women 7 Methods: Qualitative study Focus groups Measures: Experiences with and attitudes toward LAI antipsychotic medication | 1. Awareness of and knowledge about LAI antipsychotics: Some patients had never heard about LAI antipsychotics, some others reported not having understood what was discussed with them regarding LAI antipsychotics and some patients had typically heard about. 2. Perceptions about LAI antipsychotics: Positive perceptions: Relapse prevention and reduced effort in ensuring adherence Negative perceptions: Financial costs and the inconvenience of appointments to receive injections a. Cost and convenience considerations b. Issues arising from the coercive context under which LAI antipsychotics were often prescribed | Level 6 |
| Potkin et al., 201311 | To understand better prescriber, patient and caregiver perspectives about LAI antipsychotics (administered once every 2 or 4 weeks) therapy and how these perspectives affect their use | Population: 22 patients Women 13 Mean age 45.7 years Methods: Qualitative Ethnographic information of non-random sample of prescriber–patient conversations. Also, in-person observations in mental health centres including home visits Telephone in-depth interviews for additional information Measures: Perspectives about LAI antipsychotic therapy How perspectives affect LAI use | Involvement of patients in treatment decisions was greater when discussing LAI antipsychotics versus oral antipsychotic treatment. LAI antipsychotics -naïve patients expressed neutral rather than favorable or unfavorable responses. Patient resistance was often related to negative feelings about injections. Patient-described benefits of LAI antipsychotics versus orals included perceived rapid symptom improvement and greater overall efficacy. | Level 6 |
| Tan et al., 201135 | To determine the issues relating to insulin initiation for diabetes patients managed in primary care polyclinics | Population: 11 patients Women 5 Methods: Qualitative study, focus groups Purposive sample (doctors and nurses from different training backgrounds and years of experience; poorly controlled diabetes patients who refused insulin therapy despite being on maximum oral hypoglycaemic drugs and patients who were on insulin therapy). Measures: Barriers to insulin commencement | 1. Launching the topic and doctor-patient communication on insulin therapy were key issues in insulin initiation. 2. Patient barriers to insulin commencement included: refusal to acknowledge the need for insulin therapy, its perception as a social stigma, an inconvenient mode of treatment or punishment for failure and fear of needles, side effects and complications and the healthcare professionals’ attitude and experience with insulin therapy. | Level 6 |
| Jenkings et al., 201036 | To explore patients and health professionals’ experiences of initiating insulin as part of the treating to target in DM | Population: 45 patients and 21 health professionals Women 16 Mean age 64.7 years Methods: Qualitative through interviews Purposive sample Measures: Interviews which explored participants understandings and experiences of insulin initiation | Patients reported the key factors that fostered resistance to insulin initiation: 1. Engagement with disease progression. Patients felt that they personally failed with diabetes management. 2. Managing anxieties about insulin therapy. Patients were anxious about the prospect of injecting but frequently they surprised when they discover that they can use insulin pens. | Level 6 |
| Karter et al., 201016 | To investigate barriers to insulin initiation following a new prescription | Population: 169 patients Adherent patients mean age 58 years Women 47% Non-adherent patients mean age 61 years 35% women Methods: Mixed methods Telephone interviews and self-administered survey Patients receiving a new electronic prescription for insulin. Random sample from pharmacy records Measures: Barriers to insulin initiation among non-adherent and adherent patients newly prescribed insulin | Non-adherent patients: Reasons for failing to initiate insulin included: the patient planned to change health behaviours instead of starting insulin, injection phobia, negative impact on work, concerns about long-term medication use, inconvenience and not believing insulin was needed. Believed that people who require insulin ‘have not taken care of themselves in the past’ and that ‘taking insulin can cause. . .’ other consequences. They believed insulin causes harm. Expressed significantly more concern about their inability to adjust insulin dosage, the impact on social life and work, injection pain, and side effects. Reported problems learning about their medical condition because of difficulty understanding written information and claimed providers failed to adequately explain insulin’s risk and benefits. Fewer non-adherent patients reported receiving insulin self-management training from their doctor, nurse, health educator, or a class. | Level 4 |
| Peyrot et al., 201037 | To access factors associated with patient frequency of intentionally skipping insulin injections | Population: 502 patients Women 226 Mean age 55 years Methods: Quantitative study Internet survey with a questionnaire developed for the particular survey. Measures: Disease type, duration, complications and treatment Perceived burden of insulin injections The experience of injections Negative affect toward insulin injections Frequency of skipping insulin injections | Patients who are not managing their diabetes are significantly more likely to see insulin therapy as potentially beneficial. Most nurses and general practitioners delay insulin therapy until absolutely necessary, but specialists and opinion leaders are less likely to do so. Delay of insulin therapy is significantly less likely when physicians and nurses see their patients as more adherent to medication or appointment regimens, view insulin as more efficacious, and when they are less likely to delay oral diabetes medications. | Level 6 |
| Rubin et al., 200910 | To compare patients’ perceptions of injection-related problems with clinicians estimates of those problems | Population: 501 patients Women 225 Mean age 54.9 years Methods: Quantitative through interviews Internet survey of self-identified patients with diabetes Measures: 1. Perceived burden of insulin injections 2. Effect of injections on quality of life 3. Effect of injection problems on adherence to treatment 4. Patient-provider injection-related communication 5. Injection-related support from provider 6. Interest in and knowledge of products to ease injection burden | The majority of patients would like to reduce the number of injections they take each day. Almost half said that they would be more likely to take their insulin injections regularly if a product were available to ease the pain. Patients also reported: 1. Injections were a serious burden 2. They were dissatisfied with the way they took insulin 3. Injections had a substantial negative impact on quality of life 4. They skipped injections they should take or 5. Injection-related problems affected the number of injections they were willing to take. Half of the patients said they mentioned injection-related problems to their provider; a similar number reported that their providers had not given them a solution to problems with injection-related pain and bruising. | Level 6 |
| Khan et al., 200838 | To determine the prevalence and reasons for refusal to commence insulin in Bangladeshi patients with type 2 diabetes | Population: 212 patients Women 100 Mean age 55.3 years Methods: Qualitative study through focus groups Data were analysed by thematic content analysis using the constant comparative method. Measures: Reasons of insulin refusal | Patients refused insulin due to: 1. Disease severity: perceptions that requirement for insulin was an indicator of a more serious stage of their condition 2. Insulin leading to premature death: common suggestion that commencing insulin led to early death 3. Loss of control: fear of hypoglycaemia, weight gain, loss of independence and reliance on others to give insulin or look for signs of hypoglycaemia 4. Lack of perception of benefits: poor perception of the benefits of improved glycaemic control on quality of life and cardiovascular risk 5. Needle anxiety: concern over frequent injections. | Level 6 |
| Larkin et al., 200839 | To explore the attitudes that contribute to psychological insulin resistance (PIR) in insulin-naive patients with type 2 diabetes and to identify predictors of PIR | Population: 100 patients Women 39 Mean age 62 years Methods: Quantitative study Self-administrative questionnaires Measures: 1. Survey for people who do not take insulin: reasons why people are reluctant to start insulin, including risk of side effects or complications and changes in lifestyle 2. ITAS: assessment of patients’ perceptions of insulin treatment 3. HADS: depression screening questionnaire | The most commonly expressed negative attitudes were concern regarding hypoglycaemia, permanent need for insulin therapy, less flexibility, and feelings of failure. Less than 40% expressed fear of self-injection or thought that injections were painful. Poorer general health and higher depression scores also correlated with PIR. | Level 6 |
| Hayes et al., 200640 | To explore diabetes medication experiences of patients with type 2 diabetes | Population: 138 patients Women 94 61% were using insulin Methods: Qualitative study through focus groups Measures: How patients experience their diabetes drug treatment What they dislike about treatment What makes it inconvenient or inflexible, intolerable, or unacceptable What factors contribute to their treatment satisfaction and treatment preference | Patients expressed: 1. Inconvenience and inflexibility of the timing and frequency of administrations of many diabetes medication regimens. 2. Avoidance of injections and/or insulin therapy 3. The physical and emotional side effects of diabetes medications. Treatment preferences: Participants would weigh the convenience and flexibility, route of administration, side effects, and cost of the medications. | Level 6 |
| Morris et al., 200541 | To elucidate the range of subjective experiences of men and women with type 2 diabetes who have recently gone on to insulin | Population: Six patients Women 3 Methods: Qualitative study Semi-structured interviews which were audiotape-recorded and transcribed. Transcripts were analysed together with the researcher’s observational notes and documentary evidence (phenomenological analysis) Purposive sample Measures: Experiences of patients with DM | Patients experienced a range of initial reactions (from shock and anger, to relief) and perceptions of insulin, sometimes resulting in an altered self-image. Perceptions for insulin were shown to change over time, with some patients eventually accepting insulin and becoming empowered. | Level 6 |
| Mollema et al., 200142 | To define clinically relevant cut-off points for severe fear of self-injecting and self-treated phobia in insulin-treated patients with diabetes and to estimate the magnitude of these phobias in our research population | Population: 24 insulin-treated adult diabetes patients Women 17 Mean age 44.5 years Methods: Quantitative study Cross-sectional survey Purposive sample (high-scorers on FSI and/or FST) Measures: Relevance of fear of self-injecting (FSI) and self-testing (FST) (phobia) in insulin-treated patients with diabetes D-FISQ and BAT questionnaires | Severe FSI and FST, characterised by emotional distress and avoidance behaviour, seems to occur in a small group of insulin-treated patients with diabetes | Level 6 |
LAI: long-acting injectable; ITAS: insulin treatment appraisal scale; BITQ: barriers to insulin treatment questionnaire; DES: diabetes empowerment scale; DM: diabetes mellitus; HADS: hospital anxiety and depression scale; D-FISQ: diabetes fear of injecting and self-testing questionnaire; BAT: behavioural avoidance test.
| Author/year . | Study purpose . | Methods . | Findings . | Level of evidence . |
|---|---|---|---|---|
| Campbell et al., 201728 | To understand better the impact that financial barriers have on patients with diabetes and the strategies that they use to cope with them | Population: 24 patients (10 men and 14 women) including 10 who used insulin Mean age men 59.1 years Mean age women 56.5 years Methods: Secondary analysis of 24 interviews of patients with diabetes and perceived financial barriers Semi-structured interviews were undertaken either face-to-face or by telephone Data analysis was performed using inductive thematic analysis. Measures: Qualitative data: Personal interviews exploring the following domains: Experience of living with diabetes Experience of having financial barriers erceived reasons for financial barriers Perceived consequences of financial barriers Mechanisms for overcoming financial barriers | The predominant aspects of care to which participants described financial barriers were medications, diabetes supplies and healthy food. Participants described that health professionals had the potential to either play an important supporting role; or alternatively, that they could also worsen the impacts of financial barriers. | Level 6 |
| Taylor et al., 201729 | To document in people with DM attitudes and beliefs that may result in psychological insulin resistance | Population: 117 patients Women 80 Mean age 66 years Methods: Quantitative through an interview administrated questionnaire Telephone interviews Measures: Attitudes and beliefs towards insulin (ITAS questionnaire) | Negative perceptions about insulin use 1. Meant a worsening of diabetes (68%) 2. Would worry family (63%) 3. Feared self-injection (58%) 4. Meant a failure in self-management (57%) 5. Injections were painful (54%) 6. Would be seen as being sicker (46%) 7. Increased hypoglycaemia risk (38%) 8. Required effort (34%) 9. Causes weight gain (27%) 10. Causes a deterioration in health (14%) 11. Would have to give up enjoyable activities (10%) Positive perceptions • Helps good glycaemic control (78%) • Would prevent complications (61%) • Improves health (58%) Patients using insulin had fewer negative perceptions than those not on insulin. | Level 6 |
| Taylor et al., 201630 | To explore self-reported knowledge and attitudes to insulin treatment among a group of adults with poorly controlled diabetes | Population: 29 patients Women 14 Methods: Quantitative study Cross-sectional study Measures: Insulin treatment Appraisal scale (ITAS) and barriers to insulin treatment Questionnaire (BITQ) scores related to knowledge and attitudes to insulin treatment, clinical and demographic measures | Perceived barriers are higher among older patients with fewer years of formal education. Low score in ‘knowledge’ items in the ITAS. | Level 6 |
| Victor Spain et al., 201614 | To explore the barriers that adult Americans experience when taking injectable medications for type 2 diabetes, from the time of filling the initial prescription through the decision to discontinue the medication | Population: 1190 patients Women 986 Methods: Quantitative using self-administrated questionnaire developed for the survey and DES Internet-based survey. Measures: Patients were asked: 1. If they filled the medication of interest when first prescribed, time until filling the prescription and if filled, how long until they started taking it 2. About their reactions to being prescribed an injectable 3. For those initiating the medication of interest, if they discontinued using it 4. For those discontinuing the medication of interest, the reasons for discontinuing use and the decision-making process for discontinuation 5. If still taking the medication of interest, what barriers (if any) to taking it they experienced | Among patients who delayed filling their prescription by more than one week, cost was a common reason for delay. The most commonly reported barrier to maintaining injectable medication was injection concerns (42%) such as aversion to needles, pain or needle size. Lack of perceived need was the most common reason for discontinuation for basal (47%) and prandial/premixed (44%) insulin. For liraglutide, the most common reason for discontinuation was experiencing an adverse event (33%), for exenatide once weekly, it was injection concerns such as aversion to needles, pain, or needle size (38%). | Level 6 |
| Papaspurou et al., 201531 | To investigate the health needs and self-management problems faced by patients with diabetes daily | Population: 15 patients Women 9 Methods: Qualitative study Sem-structured interviews (interpretative phenomenological approach) Measures: Health needs and self-management problems faced by patients with DM | Patients face fears and have unaddressed needs related to the diagnosis, treatment, expected impacts, prognosis and the daily management of the disease. Patients have several care needs; need of psychological support and education to recognize and prevent hypoglycaemia. Need of continuous education and communication with health professionals. | Level 6 |
| Patel et al., 201515 | To explore attitudes towards insulin acceptance an ethnically diverse population of people with type 2 diabetes | Population: 18 patients Women 9 Methods: Qualitative study Semi-structured interviews Purposive sampling Measures: Concerns, views and beliefs about the necessity of insulin | Decisions about accepting insulin involved balancing concerns against the perceived necessity of insulin (generally, inadequacy of oral medication). | Level 6 |
| Brod et al., 201432 | To identify patients’ beliefs as well as clinical realities about insulin that may be barriers to type 2 diabetes patients initiating insulin treatment | Population: 87 patients Women 37 Mean age: 52.9 years Methods: Purposive sample Mixed methods study 13 focus group in 5 different countries Measures: Qualitative data on attitudes through focus groups. Quantitative data were collected to understand better the factors influencing participants’ decisions about initiating insulin and patient-held beliefs regarding the process through the developed educational tool ‘questions about starting insulin: information on the myths, misconceptions and clinical realities about insulin’. | Patients’ reported the following key barriers to initiating insulin Treatment: 1.Insulin as a treatment of last resort 2. Insulin as evidence of personal failure to self-manage diabetes 3. Risk of long-term complications from insulin 4. Side effects of insulin 5. Treatment convenience 6. Needles and injections 7. Weight gain from insulin | Level 4 |
| Simon et al., 201433 | To identify experiences with and barriers to self-monitoring of blood glucose, insulin injection, and insulin titration among patients with type 2 diabetes | Population: 20 patients Group A: Patients who had never used computer-assisted insulin self-titration system Women 4 Mean age 53.9 years Group B: Patients who were enrolled in a 4-week pilot involving computer-assisted insulin self-titration system Women 4 Mean age 56.9 years Sampling method: In-depth, semi-structured interviews Face to face interviews for group A and telephone interviews for group B Design: Qualitative study Measures: Experiences with and barriers to insulin Self-management | Patients fear the lifelong commitment to insulin therapy and disease progression Barriers when implementing insulin therapy (e.g. perceived usefulness, physical impact, fear of injection) Difficulties increasing the insulin dose (fear of hypoglycaemia) Association of higher insulin doses with disease progression Ignorant of treatment targets Patients who never used a computer-assisted insulin self-titration system felt they had enough knowledge to know when their insulin should be adjusted, but still believed that the system advice would be useful to confirm their reasoning. | Level 6 |
| Iyer et al., 201334 | To investigate perceptions of and attitudes towards long-acting (once every 2 weeks) injectable antipsychotics among patients | Population: 34 patients Women 7 Methods: Qualitative study Focus groups Measures: Experiences with and attitudes toward LAI antipsychotic medication | 1. Awareness of and knowledge about LAI antipsychotics: Some patients had never heard about LAI antipsychotics, some others reported not having understood what was discussed with them regarding LAI antipsychotics and some patients had typically heard about. 2. Perceptions about LAI antipsychotics: Positive perceptions: Relapse prevention and reduced effort in ensuring adherence Negative perceptions: Financial costs and the inconvenience of appointments to receive injections a. Cost and convenience considerations b. Issues arising from the coercive context under which LAI antipsychotics were often prescribed | Level 6 |
| Potkin et al., 201311 | To understand better prescriber, patient and caregiver perspectives about LAI antipsychotics (administered once every 2 or 4 weeks) therapy and how these perspectives affect their use | Population: 22 patients Women 13 Mean age 45.7 years Methods: Qualitative Ethnographic information of non-random sample of prescriber–patient conversations. Also, in-person observations in mental health centres including home visits Telephone in-depth interviews for additional information Measures: Perspectives about LAI antipsychotic therapy How perspectives affect LAI use | Involvement of patients in treatment decisions was greater when discussing LAI antipsychotics versus oral antipsychotic treatment. LAI antipsychotics -naïve patients expressed neutral rather than favorable or unfavorable responses. Patient resistance was often related to negative feelings about injections. Patient-described benefits of LAI antipsychotics versus orals included perceived rapid symptom improvement and greater overall efficacy. | Level 6 |
| Tan et al., 201135 | To determine the issues relating to insulin initiation for diabetes patients managed in primary care polyclinics | Population: 11 patients Women 5 Methods: Qualitative study, focus groups Purposive sample (doctors and nurses from different training backgrounds and years of experience; poorly controlled diabetes patients who refused insulin therapy despite being on maximum oral hypoglycaemic drugs and patients who were on insulin therapy). Measures: Barriers to insulin commencement | 1. Launching the topic and doctor-patient communication on insulin therapy were key issues in insulin initiation. 2. Patient barriers to insulin commencement included: refusal to acknowledge the need for insulin therapy, its perception as a social stigma, an inconvenient mode of treatment or punishment for failure and fear of needles, side effects and complications and the healthcare professionals’ attitude and experience with insulin therapy. | Level 6 |
| Jenkings et al., 201036 | To explore patients and health professionals’ experiences of initiating insulin as part of the treating to target in DM | Population: 45 patients and 21 health professionals Women 16 Mean age 64.7 years Methods: Qualitative through interviews Purposive sample Measures: Interviews which explored participants understandings and experiences of insulin initiation | Patients reported the key factors that fostered resistance to insulin initiation: 1. Engagement with disease progression. Patients felt that they personally failed with diabetes management. 2. Managing anxieties about insulin therapy. Patients were anxious about the prospect of injecting but frequently they surprised when they discover that they can use insulin pens. | Level 6 |
| Karter et al., 201016 | To investigate barriers to insulin initiation following a new prescription | Population: 169 patients Adherent patients mean age 58 years Women 47% Non-adherent patients mean age 61 years 35% women Methods: Mixed methods Telephone interviews and self-administered survey Patients receiving a new electronic prescription for insulin. Random sample from pharmacy records Measures: Barriers to insulin initiation among non-adherent and adherent patients newly prescribed insulin | Non-adherent patients: Reasons for failing to initiate insulin included: the patient planned to change health behaviours instead of starting insulin, injection phobia, negative impact on work, concerns about long-term medication use, inconvenience and not believing insulin was needed. Believed that people who require insulin ‘have not taken care of themselves in the past’ and that ‘taking insulin can cause. . .’ other consequences. They believed insulin causes harm. Expressed significantly more concern about their inability to adjust insulin dosage, the impact on social life and work, injection pain, and side effects. Reported problems learning about their medical condition because of difficulty understanding written information and claimed providers failed to adequately explain insulin’s risk and benefits. Fewer non-adherent patients reported receiving insulin self-management training from their doctor, nurse, health educator, or a class. | Level 4 |
| Peyrot et al., 201037 | To access factors associated with patient frequency of intentionally skipping insulin injections | Population: 502 patients Women 226 Mean age 55 years Methods: Quantitative study Internet survey with a questionnaire developed for the particular survey. Measures: Disease type, duration, complications and treatment Perceived burden of insulin injections The experience of injections Negative affect toward insulin injections Frequency of skipping insulin injections | Patients who are not managing their diabetes are significantly more likely to see insulin therapy as potentially beneficial. Most nurses and general practitioners delay insulin therapy until absolutely necessary, but specialists and opinion leaders are less likely to do so. Delay of insulin therapy is significantly less likely when physicians and nurses see their patients as more adherent to medication or appointment regimens, view insulin as more efficacious, and when they are less likely to delay oral diabetes medications. | Level 6 |
| Rubin et al., 200910 | To compare patients’ perceptions of injection-related problems with clinicians estimates of those problems | Population: 501 patients Women 225 Mean age 54.9 years Methods: Quantitative through interviews Internet survey of self-identified patients with diabetes Measures: 1. Perceived burden of insulin injections 2. Effect of injections on quality of life 3. Effect of injection problems on adherence to treatment 4. Patient-provider injection-related communication 5. Injection-related support from provider 6. Interest in and knowledge of products to ease injection burden | The majority of patients would like to reduce the number of injections they take each day. Almost half said that they would be more likely to take their insulin injections regularly if a product were available to ease the pain. Patients also reported: 1. Injections were a serious burden 2. They were dissatisfied with the way they took insulin 3. Injections had a substantial negative impact on quality of life 4. They skipped injections they should take or 5. Injection-related problems affected the number of injections they were willing to take. Half of the patients said they mentioned injection-related problems to their provider; a similar number reported that their providers had not given them a solution to problems with injection-related pain and bruising. | Level 6 |
| Khan et al., 200838 | To determine the prevalence and reasons for refusal to commence insulin in Bangladeshi patients with type 2 diabetes | Population: 212 patients Women 100 Mean age 55.3 years Methods: Qualitative study through focus groups Data were analysed by thematic content analysis using the constant comparative method. Measures: Reasons of insulin refusal | Patients refused insulin due to: 1. Disease severity: perceptions that requirement for insulin was an indicator of a more serious stage of their condition 2. Insulin leading to premature death: common suggestion that commencing insulin led to early death 3. Loss of control: fear of hypoglycaemia, weight gain, loss of independence and reliance on others to give insulin or look for signs of hypoglycaemia 4. Lack of perception of benefits: poor perception of the benefits of improved glycaemic control on quality of life and cardiovascular risk 5. Needle anxiety: concern over frequent injections. | Level 6 |
| Larkin et al., 200839 | To explore the attitudes that contribute to psychological insulin resistance (PIR) in insulin-naive patients with type 2 diabetes and to identify predictors of PIR | Population: 100 patients Women 39 Mean age 62 years Methods: Quantitative study Self-administrative questionnaires Measures: 1. Survey for people who do not take insulin: reasons why people are reluctant to start insulin, including risk of side effects or complications and changes in lifestyle 2. ITAS: assessment of patients’ perceptions of insulin treatment 3. HADS: depression screening questionnaire | The most commonly expressed negative attitudes were concern regarding hypoglycaemia, permanent need for insulin therapy, less flexibility, and feelings of failure. Less than 40% expressed fear of self-injection or thought that injections were painful. Poorer general health and higher depression scores also correlated with PIR. | Level 6 |
| Hayes et al., 200640 | To explore diabetes medication experiences of patients with type 2 diabetes | Population: 138 patients Women 94 61% were using insulin Methods: Qualitative study through focus groups Measures: How patients experience their diabetes drug treatment What they dislike about treatment What makes it inconvenient or inflexible, intolerable, or unacceptable What factors contribute to their treatment satisfaction and treatment preference | Patients expressed: 1. Inconvenience and inflexibility of the timing and frequency of administrations of many diabetes medication regimens. 2. Avoidance of injections and/or insulin therapy 3. The physical and emotional side effects of diabetes medications. Treatment preferences: Participants would weigh the convenience and flexibility, route of administration, side effects, and cost of the medications. | Level 6 |
| Morris et al., 200541 | To elucidate the range of subjective experiences of men and women with type 2 diabetes who have recently gone on to insulin | Population: Six patients Women 3 Methods: Qualitative study Semi-structured interviews which were audiotape-recorded and transcribed. Transcripts were analysed together with the researcher’s observational notes and documentary evidence (phenomenological analysis) Purposive sample Measures: Experiences of patients with DM | Patients experienced a range of initial reactions (from shock and anger, to relief) and perceptions of insulin, sometimes resulting in an altered self-image. Perceptions for insulin were shown to change over time, with some patients eventually accepting insulin and becoming empowered. | Level 6 |
| Mollema et al., 200142 | To define clinically relevant cut-off points for severe fear of self-injecting and self-treated phobia in insulin-treated patients with diabetes and to estimate the magnitude of these phobias in our research population | Population: 24 insulin-treated adult diabetes patients Women 17 Mean age 44.5 years Methods: Quantitative study Cross-sectional survey Purposive sample (high-scorers on FSI and/or FST) Measures: Relevance of fear of self-injecting (FSI) and self-testing (FST) (phobia) in insulin-treated patients with diabetes D-FISQ and BAT questionnaires | Severe FSI and FST, characterised by emotional distress and avoidance behaviour, seems to occur in a small group of insulin-treated patients with diabetes | Level 6 |
| Author/year . | Study purpose . | Methods . | Findings . | Level of evidence . |
|---|---|---|---|---|
| Campbell et al., 201728 | To understand better the impact that financial barriers have on patients with diabetes and the strategies that they use to cope with them | Population: 24 patients (10 men and 14 women) including 10 who used insulin Mean age men 59.1 years Mean age women 56.5 years Methods: Secondary analysis of 24 interviews of patients with diabetes and perceived financial barriers Semi-structured interviews were undertaken either face-to-face or by telephone Data analysis was performed using inductive thematic analysis. Measures: Qualitative data: Personal interviews exploring the following domains: Experience of living with diabetes Experience of having financial barriers erceived reasons for financial barriers Perceived consequences of financial barriers Mechanisms for overcoming financial barriers | The predominant aspects of care to which participants described financial barriers were medications, diabetes supplies and healthy food. Participants described that health professionals had the potential to either play an important supporting role; or alternatively, that they could also worsen the impacts of financial barriers. | Level 6 |
| Taylor et al., 201729 | To document in people with DM attitudes and beliefs that may result in psychological insulin resistance | Population: 117 patients Women 80 Mean age 66 years Methods: Quantitative through an interview administrated questionnaire Telephone interviews Measures: Attitudes and beliefs towards insulin (ITAS questionnaire) | Negative perceptions about insulin use 1. Meant a worsening of diabetes (68%) 2. Would worry family (63%) 3. Feared self-injection (58%) 4. Meant a failure in self-management (57%) 5. Injections were painful (54%) 6. Would be seen as being sicker (46%) 7. Increased hypoglycaemia risk (38%) 8. Required effort (34%) 9. Causes weight gain (27%) 10. Causes a deterioration in health (14%) 11. Would have to give up enjoyable activities (10%) Positive perceptions • Helps good glycaemic control (78%) • Would prevent complications (61%) • Improves health (58%) Patients using insulin had fewer negative perceptions than those not on insulin. | Level 6 |
| Taylor et al., 201630 | To explore self-reported knowledge and attitudes to insulin treatment among a group of adults with poorly controlled diabetes | Population: 29 patients Women 14 Methods: Quantitative study Cross-sectional study Measures: Insulin treatment Appraisal scale (ITAS) and barriers to insulin treatment Questionnaire (BITQ) scores related to knowledge and attitudes to insulin treatment, clinical and demographic measures | Perceived barriers are higher among older patients with fewer years of formal education. Low score in ‘knowledge’ items in the ITAS. | Level 6 |
| Victor Spain et al., 201614 | To explore the barriers that adult Americans experience when taking injectable medications for type 2 diabetes, from the time of filling the initial prescription through the decision to discontinue the medication | Population: 1190 patients Women 986 Methods: Quantitative using self-administrated questionnaire developed for the survey and DES Internet-based survey. Measures: Patients were asked: 1. If they filled the medication of interest when first prescribed, time until filling the prescription and if filled, how long until they started taking it 2. About their reactions to being prescribed an injectable 3. For those initiating the medication of interest, if they discontinued using it 4. For those discontinuing the medication of interest, the reasons for discontinuing use and the decision-making process for discontinuation 5. If still taking the medication of interest, what barriers (if any) to taking it they experienced | Among patients who delayed filling their prescription by more than one week, cost was a common reason for delay. The most commonly reported barrier to maintaining injectable medication was injection concerns (42%) such as aversion to needles, pain or needle size. Lack of perceived need was the most common reason for discontinuation for basal (47%) and prandial/premixed (44%) insulin. For liraglutide, the most common reason for discontinuation was experiencing an adverse event (33%), for exenatide once weekly, it was injection concerns such as aversion to needles, pain, or needle size (38%). | Level 6 |
| Papaspurou et al., 201531 | To investigate the health needs and self-management problems faced by patients with diabetes daily | Population: 15 patients Women 9 Methods: Qualitative study Sem-structured interviews (interpretative phenomenological approach) Measures: Health needs and self-management problems faced by patients with DM | Patients face fears and have unaddressed needs related to the diagnosis, treatment, expected impacts, prognosis and the daily management of the disease. Patients have several care needs; need of psychological support and education to recognize and prevent hypoglycaemia. Need of continuous education and communication with health professionals. | Level 6 |
| Patel et al., 201515 | To explore attitudes towards insulin acceptance an ethnically diverse population of people with type 2 diabetes | Population: 18 patients Women 9 Methods: Qualitative study Semi-structured interviews Purposive sampling Measures: Concerns, views and beliefs about the necessity of insulin | Decisions about accepting insulin involved balancing concerns against the perceived necessity of insulin (generally, inadequacy of oral medication). | Level 6 |
| Brod et al., 201432 | To identify patients’ beliefs as well as clinical realities about insulin that may be barriers to type 2 diabetes patients initiating insulin treatment | Population: 87 patients Women 37 Mean age: 52.9 years Methods: Purposive sample Mixed methods study 13 focus group in 5 different countries Measures: Qualitative data on attitudes through focus groups. Quantitative data were collected to understand better the factors influencing participants’ decisions about initiating insulin and patient-held beliefs regarding the process through the developed educational tool ‘questions about starting insulin: information on the myths, misconceptions and clinical realities about insulin’. | Patients’ reported the following key barriers to initiating insulin Treatment: 1.Insulin as a treatment of last resort 2. Insulin as evidence of personal failure to self-manage diabetes 3. Risk of long-term complications from insulin 4. Side effects of insulin 5. Treatment convenience 6. Needles and injections 7. Weight gain from insulin | Level 4 |
| Simon et al., 201433 | To identify experiences with and barriers to self-monitoring of blood glucose, insulin injection, and insulin titration among patients with type 2 diabetes | Population: 20 patients Group A: Patients who had never used computer-assisted insulin self-titration system Women 4 Mean age 53.9 years Group B: Patients who were enrolled in a 4-week pilot involving computer-assisted insulin self-titration system Women 4 Mean age 56.9 years Sampling method: In-depth, semi-structured interviews Face to face interviews for group A and telephone interviews for group B Design: Qualitative study Measures: Experiences with and barriers to insulin Self-management | Patients fear the lifelong commitment to insulin therapy and disease progression Barriers when implementing insulin therapy (e.g. perceived usefulness, physical impact, fear of injection) Difficulties increasing the insulin dose (fear of hypoglycaemia) Association of higher insulin doses with disease progression Ignorant of treatment targets Patients who never used a computer-assisted insulin self-titration system felt they had enough knowledge to know when their insulin should be adjusted, but still believed that the system advice would be useful to confirm their reasoning. | Level 6 |
| Iyer et al., 201334 | To investigate perceptions of and attitudes towards long-acting (once every 2 weeks) injectable antipsychotics among patients | Population: 34 patients Women 7 Methods: Qualitative study Focus groups Measures: Experiences with and attitudes toward LAI antipsychotic medication | 1. Awareness of and knowledge about LAI antipsychotics: Some patients had never heard about LAI antipsychotics, some others reported not having understood what was discussed with them regarding LAI antipsychotics and some patients had typically heard about. 2. Perceptions about LAI antipsychotics: Positive perceptions: Relapse prevention and reduced effort in ensuring adherence Negative perceptions: Financial costs and the inconvenience of appointments to receive injections a. Cost and convenience considerations b. Issues arising from the coercive context under which LAI antipsychotics were often prescribed | Level 6 |
| Potkin et al., 201311 | To understand better prescriber, patient and caregiver perspectives about LAI antipsychotics (administered once every 2 or 4 weeks) therapy and how these perspectives affect their use | Population: 22 patients Women 13 Mean age 45.7 years Methods: Qualitative Ethnographic information of non-random sample of prescriber–patient conversations. Also, in-person observations in mental health centres including home visits Telephone in-depth interviews for additional information Measures: Perspectives about LAI antipsychotic therapy How perspectives affect LAI use | Involvement of patients in treatment decisions was greater when discussing LAI antipsychotics versus oral antipsychotic treatment. LAI antipsychotics -naïve patients expressed neutral rather than favorable or unfavorable responses. Patient resistance was often related to negative feelings about injections. Patient-described benefits of LAI antipsychotics versus orals included perceived rapid symptom improvement and greater overall efficacy. | Level 6 |
| Tan et al., 201135 | To determine the issues relating to insulin initiation for diabetes patients managed in primary care polyclinics | Population: 11 patients Women 5 Methods: Qualitative study, focus groups Purposive sample (doctors and nurses from different training backgrounds and years of experience; poorly controlled diabetes patients who refused insulin therapy despite being on maximum oral hypoglycaemic drugs and patients who were on insulin therapy). Measures: Barriers to insulin commencement | 1. Launching the topic and doctor-patient communication on insulin therapy were key issues in insulin initiation. 2. Patient barriers to insulin commencement included: refusal to acknowledge the need for insulin therapy, its perception as a social stigma, an inconvenient mode of treatment or punishment for failure and fear of needles, side effects and complications and the healthcare professionals’ attitude and experience with insulin therapy. | Level 6 |
| Jenkings et al., 201036 | To explore patients and health professionals’ experiences of initiating insulin as part of the treating to target in DM | Population: 45 patients and 21 health professionals Women 16 Mean age 64.7 years Methods: Qualitative through interviews Purposive sample Measures: Interviews which explored participants understandings and experiences of insulin initiation | Patients reported the key factors that fostered resistance to insulin initiation: 1. Engagement with disease progression. Patients felt that they personally failed with diabetes management. 2. Managing anxieties about insulin therapy. Patients were anxious about the prospect of injecting but frequently they surprised when they discover that they can use insulin pens. | Level 6 |
| Karter et al., 201016 | To investigate barriers to insulin initiation following a new prescription | Population: 169 patients Adherent patients mean age 58 years Women 47% Non-adherent patients mean age 61 years 35% women Methods: Mixed methods Telephone interviews and self-administered survey Patients receiving a new electronic prescription for insulin. Random sample from pharmacy records Measures: Barriers to insulin initiation among non-adherent and adherent patients newly prescribed insulin | Non-adherent patients: Reasons for failing to initiate insulin included: the patient planned to change health behaviours instead of starting insulin, injection phobia, negative impact on work, concerns about long-term medication use, inconvenience and not believing insulin was needed. Believed that people who require insulin ‘have not taken care of themselves in the past’ and that ‘taking insulin can cause. . .’ other consequences. They believed insulin causes harm. Expressed significantly more concern about their inability to adjust insulin dosage, the impact on social life and work, injection pain, and side effects. Reported problems learning about their medical condition because of difficulty understanding written information and claimed providers failed to adequately explain insulin’s risk and benefits. Fewer non-adherent patients reported receiving insulin self-management training from their doctor, nurse, health educator, or a class. | Level 4 |
| Peyrot et al., 201037 | To access factors associated with patient frequency of intentionally skipping insulin injections | Population: 502 patients Women 226 Mean age 55 years Methods: Quantitative study Internet survey with a questionnaire developed for the particular survey. Measures: Disease type, duration, complications and treatment Perceived burden of insulin injections The experience of injections Negative affect toward insulin injections Frequency of skipping insulin injections | Patients who are not managing their diabetes are significantly more likely to see insulin therapy as potentially beneficial. Most nurses and general practitioners delay insulin therapy until absolutely necessary, but specialists and opinion leaders are less likely to do so. Delay of insulin therapy is significantly less likely when physicians and nurses see their patients as more adherent to medication or appointment regimens, view insulin as more efficacious, and when they are less likely to delay oral diabetes medications. | Level 6 |
| Rubin et al., 200910 | To compare patients’ perceptions of injection-related problems with clinicians estimates of those problems | Population: 501 patients Women 225 Mean age 54.9 years Methods: Quantitative through interviews Internet survey of self-identified patients with diabetes Measures: 1. Perceived burden of insulin injections 2. Effect of injections on quality of life 3. Effect of injection problems on adherence to treatment 4. Patient-provider injection-related communication 5. Injection-related support from provider 6. Interest in and knowledge of products to ease injection burden | The majority of patients would like to reduce the number of injections they take each day. Almost half said that they would be more likely to take their insulin injections regularly if a product were available to ease the pain. Patients also reported: 1. Injections were a serious burden 2. They were dissatisfied with the way they took insulin 3. Injections had a substantial negative impact on quality of life 4. They skipped injections they should take or 5. Injection-related problems affected the number of injections they were willing to take. Half of the patients said they mentioned injection-related problems to their provider; a similar number reported that their providers had not given them a solution to problems with injection-related pain and bruising. | Level 6 |
| Khan et al., 200838 | To determine the prevalence and reasons for refusal to commence insulin in Bangladeshi patients with type 2 diabetes | Population: 212 patients Women 100 Mean age 55.3 years Methods: Qualitative study through focus groups Data were analysed by thematic content analysis using the constant comparative method. Measures: Reasons of insulin refusal | Patients refused insulin due to: 1. Disease severity: perceptions that requirement for insulin was an indicator of a more serious stage of their condition 2. Insulin leading to premature death: common suggestion that commencing insulin led to early death 3. Loss of control: fear of hypoglycaemia, weight gain, loss of independence and reliance on others to give insulin or look for signs of hypoglycaemia 4. Lack of perception of benefits: poor perception of the benefits of improved glycaemic control on quality of life and cardiovascular risk 5. Needle anxiety: concern over frequent injections. | Level 6 |
| Larkin et al., 200839 | To explore the attitudes that contribute to psychological insulin resistance (PIR) in insulin-naive patients with type 2 diabetes and to identify predictors of PIR | Population: 100 patients Women 39 Mean age 62 years Methods: Quantitative study Self-administrative questionnaires Measures: 1. Survey for people who do not take insulin: reasons why people are reluctant to start insulin, including risk of side effects or complications and changes in lifestyle 2. ITAS: assessment of patients’ perceptions of insulin treatment 3. HADS: depression screening questionnaire | The most commonly expressed negative attitudes were concern regarding hypoglycaemia, permanent need for insulin therapy, less flexibility, and feelings of failure. Less than 40% expressed fear of self-injection or thought that injections were painful. Poorer general health and higher depression scores also correlated with PIR. | Level 6 |
| Hayes et al., 200640 | To explore diabetes medication experiences of patients with type 2 diabetes | Population: 138 patients Women 94 61% were using insulin Methods: Qualitative study through focus groups Measures: How patients experience their diabetes drug treatment What they dislike about treatment What makes it inconvenient or inflexible, intolerable, or unacceptable What factors contribute to their treatment satisfaction and treatment preference | Patients expressed: 1. Inconvenience and inflexibility of the timing and frequency of administrations of many diabetes medication regimens. 2. Avoidance of injections and/or insulin therapy 3. The physical and emotional side effects of diabetes medications. Treatment preferences: Participants would weigh the convenience and flexibility, route of administration, side effects, and cost of the medications. | Level 6 |
| Morris et al., 200541 | To elucidate the range of subjective experiences of men and women with type 2 diabetes who have recently gone on to insulin | Population: Six patients Women 3 Methods: Qualitative study Semi-structured interviews which were audiotape-recorded and transcribed. Transcripts were analysed together with the researcher’s observational notes and documentary evidence (phenomenological analysis) Purposive sample Measures: Experiences of patients with DM | Patients experienced a range of initial reactions (from shock and anger, to relief) and perceptions of insulin, sometimes resulting in an altered self-image. Perceptions for insulin were shown to change over time, with some patients eventually accepting insulin and becoming empowered. | Level 6 |
| Mollema et al., 200142 | To define clinically relevant cut-off points for severe fear of self-injecting and self-treated phobia in insulin-treated patients with diabetes and to estimate the magnitude of these phobias in our research population | Population: 24 insulin-treated adult diabetes patients Women 17 Mean age 44.5 years Methods: Quantitative study Cross-sectional survey Purposive sample (high-scorers on FSI and/or FST) Measures: Relevance of fear of self-injecting (FSI) and self-testing (FST) (phobia) in insulin-treated patients with diabetes D-FISQ and BAT questionnaires | Severe FSI and FST, characterised by emotional distress and avoidance behaviour, seems to occur in a small group of insulin-treated patients with diabetes | Level 6 |
LAI: long-acting injectable; ITAS: insulin treatment appraisal scale; BITQ: barriers to insulin treatment questionnaire; DES: diabetes empowerment scale; DM: diabetes mellitus; HADS: hospital anxiety and depression scale; D-FISQ: diabetes fear of injecting and self-testing questionnaire; BAT: behavioural avoidance test.
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