Background
Methods
Step 1. Identification of studies
Inclusion criteria
Search strategy
Step 2. Content extraction and appraisal
Step 3. Synthesis of the extracted content
Results
Summary of the selected studies
Author & Reference | Year | Reason for Rejection |
---|---|---|
Aloumanis [83] | 2013 | The focus is on clinical outcomes rather than perceptions and experiences. |
Bahrmann [9] | 2014 | The focus is on psychological insulin resistance in insulin naïve patients compared to those established on insulin. |
Balkau [84] | 2012 | The patient participants are insulin naïve. |
Beresford [85] | 2011 | Insufficient data specific to insulin treated T2DM. |
Beverly [86] | 2012 | Insufficient data specific to insulin treated T2DM. |
Brod [87] | 2013b | It was not possible to differentiate data specific to insulin treated T2DM. |
Carbone [88] | 2007 | It was not possible to differentiate data specific to insulin treated T2DM. |
Chai [89] | 2012 | Conference abstract only. No other data available. |
Chai [90] | 2013 | Conference poster only. No other data available. |
Chai [91] | 2014 | Conference abstract only. No other data available. |
Chan [92] | 2014 | The patient participants are insulin naïve. |
Choudhury [93] | 2014 | It was not possible to differentiate data specific to insulin treated T2DM. |
Cramer & Pugh [94] | 2005 | The focus is on insulin prescriptions issued and not on perceptions or experiences. |
Gaborit [95] | 2011 | The focus is on knowledge rather than experiences of insulin adjustment. |
Hermanns [96] | 2010 | The focus is on comparing barriers of insulin naïve patients. |
Hinder & Greenhalgh [97] | 2012 | Insufficient data specific to insulin treated T2DM. |
Frei [98] | 2012 | The focus is on clinical characteristics and demographics. |
Hunt [99] | 1998 | Insufficient data specific to insulin treated T2DM. |
Khattab [100] | 2010 | The focus is on clinical characteristics and demographics. |
Lai [101] | 2007 | It was not possible to differentiate data specific to insulin treated T2DM. |
Lakkis [102] | 2013 | The focus is on attitudes of clinicians towards initiating insulin. |
Mollem [103] | 1996 | It was not possible to differentiate data specific to insulin treated T2DM. |
Morris [104] | 2005 | Patients only recently initiated with insulin therapy. |
Munro [73] | 2013 | There is no information specific to insulin treated T2DM. |
Oliveria [105] | 2007 | The focus is on patients who did not start or continue insulin therapy. |
Peyrot [106] | 2005 | Patient participants are insulin naïve. Perceptions of clinicians relate to insulin initiation. |
Peyrot [107] | 2006 | Insufficient data specific to insulin treated T2DM. |
Peyrot [108] | 2013 | Insufficient data specific to insulin treated T2DM. |
Pooley [109] | 2001 | No data specific to insulin treated T2DM. |
Ritholz [72] | 2011 | Insufficient data specific to insulin treated T2DM |
Shiu & Wong [110] | 2000 | It was not possible to differentiate data specific to insulin treated T2DM. |
Thomson [111] | 1991 | The focus is on knowledge rather than experiences or perceptions of hypoglycaemia. |
Wendel [112] | 2014 | The focus is on incidence of hypoglycaemia and prescribing behaviour rather than perceptions of hypoglycaemia |
Wong [113] | 2011 | Patients were insulin naïve. |
Yoshioka [74] | 2014 | The focus is on insulin initiation. |
Zafar [8] | 2015 | Insufficient data specific to insulin treated T2DM. |
Author & Reference | Year | Country | Diabetes Type | Aim | Sample and Setting | Data Collection | Data Analysis |
---|---|---|---|---|---|---|---|
Abu Hassan [36] | 2013 | Malaysia | Insulin T2DM | To explore patients’ reasons for accepting insulin and their initial barriers. | Patients with insulin T2DM (n = 21) Primary Care Clinic | In-depth interviews Focus groups | Thematic analysis |
Brod [37] | 2014 | Canada, China & Germany | T1DM & Insulin T2DM | To examine unintentional insulin dosing and injection irregularities due to forgetting among people with diabetes. | Patients with T1DM (n = 22) Insulin T2DM (n = 42) At least twice in the last three months of forgetting injection, or time/amount taken, or questioning if insulin was taken. Research recruitment databases | Telephone interviews Focus groups | Thematic analysis with grounded theory |
Brown [38] | 2007 | UK | Insulin T2DM & Non-Insulin T2DM | To gain an understanding of how health beliefs influence how African-Caribbeans manage their T2DM. | T2DM adults (n = 16) Insulin T2DM (n = 6) Self-help groups and GP practices Inner-city African-Caribbean community | In-depth interviews | Thematic analysis |
Browne [39] | 2013 | Australia | Insulin T2DM & Non-Insulin T2DM | To explore the social experiences of adults with T2DM, focusing on the perception & experience of diabetes- related stigma. | T2DM adults (n = 25) Insulin T2DM (n = 5) State diabetes organisation | Semi-structured interviews | Inductive thematic analysis |
Hortensius [40] | 2012 | Netherlands | T1DM & Insulin T2DM | To investigate patients’ perspectives of SMBG & all relevant aspects influencing SMBG. | Insulin treated DM patients (n = 28) T1DM (n = 13) T2DM (n = 15) Outpatient clinic (T1DM) GP practices (T2DM) | In-depth interviews | Thematic analysis with grounded theory. |
Janes [41] | 2013 | New Zealand | Insulin T2DM | To better understand barriers to glycaemic control from the patient’s perspective. | Insulin treated patients T2DM (n = 15) Diabetes clinic | Semi-structured interviews. | Thematic analysis with a patient-centred framework. Interpretative phenomenological method of inquiry |
Jenkins [42] | 2011 | UK and Ireland | Insulin T2DM | To explore participants’ experiences of intensifying insulin therapy during the Treating to Target in T2DM (4-T) trial. | T2DM patients (n = 41) Whose insulin was intensified in 4-T trial. Primary care | In-depth interviews | Thematic analysis with grounded theory. |
Ong [43] | 2014 | Malaysia | Insulin T2DM | To explore the barriers and facilitators to SMBG, in insulin T2DM patients. | Insulin treated T2DM patients (n = 15) Primary care clinic | Semi-structured interviews | Inductive thematic analysis |
Vinter-Repalust [44] | 2004 | Croatia | Insulin T2DM & Non-insulin T2DM | To explore patients’ attitudes, thoughts, & fears connected with their illness; expectations of the healthcare system; and problems while adhering to the therapeutic regime. | Patients with T2DM (n = 49) Insulin T2DM (n = 13) General practice | Focus group discussions. | Inductive thematic analysis |
Author & Reference | Year | Country | Aim | Sample and Setting | Data Collection | Data Analysis |
---|---|---|---|---|---|---|
Goderis [45] | 2009 | Belgium | To evaluate barriers and facilitators to high quality diabetes care by GPs participating in a quality improvement programme promoting compliance with international guidance. | GPs participating in the programme (n = 20) General Practice. | Semi-structured interviews | Thematic analysis with an implementation and behavioural change model. |
Jeavons [46] | 2006 | UK | To determine doctors’ and nurses’ attitudes and beliefs on treating T2DM with less than ideal control. | GPs (n = 15) Practice Nurses (n = 8) General Practice | Focus groups. | Thematic analysis with grounded theory. |
Lee [47] | 2013 | Malaysia | To explore the views of Malaysian healthcare professionals on the barriers faced by patients using insulin. | Primary care doctors (n = 20) Family medicine specialists (n = 10) Policymakers (n = 5) Diabetes educators (n = 3) Endocrinologists (n = 2) Pharmacist (n = 1) Primary & secondary care | In-depth interviews Focus group discussions | Inductive thematic analysis |
Author & Reference | Year | Country | Diabetes Type Patients or HCPs | Aim | Sample and Recruitment | Data Collection |
---|---|---|---|---|---|---|
Ary [48] | 1986 | USA | Insulin T2DM & Non-insulin T2DM Patients only | To assess levels of regime adherence and reasons for non-adherence in T1DM and T2DM | Patients with T1DM (n = 24) Non-insulin T2DM (n = 125) Insulin T2DM (n = 59) Recruited by doctors, newspaper adverts & American Diabetes Association meetings | Face-to-face Questionnaire |
Brod [49] | 2012a | USA, Canada, Japan, Germany, UK and Denmark | Insulin T2DM Patients and HCPs | To estimate the prevalence of self-treated hypoglycaemia in patients using basal analogues. To identify demographic treatment-related and behavioural risk factors. To describe patient and physician responses to these in the Global Attitude of Patients and Physicians 2 (GAPP2) study. | T2DM Patients using basal insulin analogues (n = 3,042) Physicians (n = 1,222): Specialists (45%) PCPs (55%) Online research panel | Cross-sectional online questionnaire |
Brod [50]. | 2012b | USA, Canada, Japan, Germany, UK and Denmark | Insulin T2DM Patients and HCPs | To describe basal insulin analogue dosing irregularities; the effect on patient functioning, well-being and management; and the identification of patients most at risk in the GAPP2 study. | T2DM Patients using basal insulin analogues (n = 3,042) Physicians (n = 1,222): Specialists (45%) PCPs (55%) Online research panel | Cross-sectional online questionnaire |
Brod [51] | 2012c | USA, UK, Germany and France | T1DM, Insulin T2DM & Non-insulin T2DM Patients only | To determine how non-severe nocturnal hypoglycaemic events (NSNHEs) affect diabetes management, sleep quality, functioning, and to assess if these impacts differ by diabetes type or country. | T1DM and T2DM patients (n = 1086) who experienced NSNHE in the last month: T1DM (n = 676) Non-Insulin T2DM (n = 124) Insulin T2DM (n = 286) Online venues | Web-based survey |
Brod [52] | 2013a | USA, UK, Germany, Canada, France, Italy, Spain, Netherlands and Sweden | T1DM, Insulin T2DM & Non-insulin T2DM Patients only | To explore the burden and impact of NSNHEs on diabetes management, patient monitoring and well-being to better understand the role NSNHEs play in caring for people with diabetes and to facilitate optimal diabetes treatment strategies. | Patients (n = 2,108) with: T1DM or T2DM. T1DM (n = 692) Non-insulin T2DM (n = 543) Insulin T2DM (n = 873) Online venues | Web based survey |
Cefalu [53] | 2008 | USA, Mexico, UK, France, Germany, Spain and Brazil | Insulin T2DM & Non-Insulin T2DM Patients only | To understand patients’ perspectives to achieving good glycaemic control and determine how their perceptions of insulin may affect their decisions to initiate or intensify insulin. | T2DM adults (n = 1,444) of which: Insulin T2DM (n = 469) Online databases | Structured online and telephone survey. |
Cuddihy [54] | 2011 | Germany, Japan, Spain, Turkey, UK and USA | HCPs Only | To investigate the opinions of PCPs and diabetes specialists on their perceived role in tackling T2DM and the challenges they face, particularly to insulin intensification. | Diabetes specialist physicians (n = 300) PCPs (n = 300) Recruited by telephone and online panels | Online survey |
Diago-Cabezudo [55] | 2013 | Europe | T1DM & Insulin T2DM Patients only | To evaluate the effects of hypoglycaemia on the lives of patients with DM and determine if SMBG to prevent hypoglycaemic is an appealing and widely accepted concept. | Insulin treated patients (n = 1,848) T1DM (n = 924) Insulin T2DM (n = 924) Online databases | Online survey |
Fulcher [56] | 2014 | Argentina, Australia, Brazil, Israel, Mexico and South Africa | T1DM, Insulin T2DM & Non-insulin T2DM Patients only | To understand the impact of nocturnal and daytime non-severe hypoglycaemic events on healthcare systems, work productivity & QOL in T1DM or T2DM. | T1DM (n = 64) Non-insulin T2DM (n = 76) Insulin T2DM (n = 160) Recruited from online panels and by HCPs | Online and face-to-face surveys |
Leiter [57] | 2005 | Canada | T1DM & Insulin T2DM Patients only | To assess impact of mild, moderate and severe hypoglycaemia and fear of future episodes on patients with T1DM or insulin-treated T2DM | Adults with insulin treated T2DM (n = 335) T1DM (n = 202) insulin T2DM (n = 133) Diabetes Clinics | Self-administered questionnaire |
Leiter [58] | 2014 | Canada | Insulin T2DM Patients and HCPs | To assess the frequency and impact of dosing irregularities and self-treated hypoglycaemia in T2DM patients treated with insulin analogues in the GAPP2 study. | Patients with Insulin treated T2DM (n = 156) Physicians (n = 202) Of which: PCPs (n = 160) Specialists (n = 42) Online panels and HCP registers | Online survey |
Mehmet [59] | 2015 | UK | T1DM & Insulin T2DM Patients only | To determine if patients report problems with injecting insulin/SMBG in front of others and explore reasons why. | Insulin T2DM (n = 27) T1DM (n = 49) Hospital Clinic | Self-completed questionnaire |
Mitchell [60] | 2013 | UK | Insulin T2DM & Non-insulin T2DM Patients only | To characterize hypoglycaemic events in T2DM and assess the relationship between the experiences and health outcomes. | T2DM adults (n = 1,329) of which: Insulin T2DM (n = 301) Research survey panel | Longitudinal online survey |
Mollema [61] | 2001 | Netherlands | T1DM & Insulin T2DM Patients only | To examine functioning and self-management of insulin treated patients suffering from extreme fear of self-injecting and/or fear of self-testing. | Patients with insulin treated diabetes (n = 1,275) of which: T1DM (n = 740) T2DM (n = 535) Randomly drawn from the Dutch Diabetes Association | Cross-sectional postal questionnaire |
Mosnier-Pudar [62] | 2009 | France | Insulin T2DM & Non-insulin T2DM Patients only | To describe T2DM from the patient’s standpoint in a representative French panel in 2008. | T2DM Patients (n = 1,092) of which: Non-Insulin (n = 885) Insulin T2DM (n = 207) From a polling institute in France | Postal questionnaire |
Peyrot [63] | 2012a | China, Japan, USA, Germany, Spain, France, Turkey & UK | T1DM & Insulin T2DM Patients only | To examine factors associated with insulin injection omission/ non-adherence in the Global Attitude of Patients and Physicians (GAPP) Study. | Insulin treated DM adults (n = 1,530) of which: T1DM (n = 110) T2DM (n = 1,420) Research panels | Cross-sectional telephone survey |
Peyrot [64] | 2012b | China, Japan, USA, Germany, Spain, France, Turkey & UK | T1DM & Insulin T2DM Patients and HCPs | To examine patient and physician beliefs regarding insulin therapy and degree to which patients adhere to insulin regimes in the GAPP Study. | Insulin treated DM adults (n = 1,530) of which: T1DM (n = 180) T2DM (n = 1,350) Physicians (n = 1,250) of which Specialists (n = 600) PCPs (n = 650) Research panels | Cross-sectional telephone survey |
Rubin [65] | 2009 | USA | T1DM & Insulin T2DM Patients and HCPs | To compare patients’ perceptions of injection-related problems with clinicians’ estimates of those problems. | Insulin treated adults (n = 501) of which T2DM (n = 385) PCPs (n = 101) Endocrinologists (n = 100) Diabetes Educators (n = 100) Chronic illness panel, Medical Register and Research database. | Online survey |
Shiu [66] | 2004 | Hong Kong | Insulin T2DM Patients only | To examine the relationship between a sense of coherence, fear of hypoglycaemia and metabolic control to identify whether other variables including age, hypoglycaemic experience and adherence to self-care practice, confounded the findings from two Swedish studies. | Insulin treated T2DM adults (n = 72) Diabetes Centre | Cross-sectional face-to-face questionnaire |
Siminerio [67] | 2007 | USA | HCPs only | To examine nurse and physician perceptions of nurse involvement in diabetes care. | General Nurses(n = 51) DSNs (n = 50) Generalist Physicians (n = 166) Diabetes Specialist Physicians (n = 50) Professional directories and listing | Cross-sectional survey conducted face-to-face or by telephone. |
Van Avendonk [68] | 2009 | Netherlands | HCPs only | To investigate the organisation of insulin therapy in general practice and assess factors associated with providing insulin in T2DM patients. | Dutch GPs (n = 1,621) University Medical Centre database. | Postal questionnaire |
Zambanini [69] | 1999 | UK | T1DM & Insulin T2DM Patients only | To assess: prevalence of phobia and anxiety-related to insulin injections; association between insulin injection anxiety symptoms with level of general anxiety in the study group; and evaluate their influence of, on glycaemic control. | Insulin treated patients (n = 115) of which: T1DM (n = 80) and Insulin T2DM (n = 35) Hospital diabetes clinic. | Questionnaire administered by HCPs |
Integrated themes
Domain 1. Patient perceptions
Theme 1. Insulin-related beliefs
“…I felt like once you hit insulin you are on a slide to … you know [death].” [Participant 13] [41]
“I’m telling you I’ve known people take insulin here and they go back to the Caribbean and don’t take insulin.… they don’t have the pollution that you have here, your body perspires more so all the impurities or all the stuff that it retains in your body keeps coming out ..” [Interview 16] [38]
“The body is tapu [restricted]… it makes me not like poking holes in it [with needles]” [Participant 13]
Theme 2. Social influences
“Our society is quite ignorant of insulin therapy and they might associate insulin injection with drug addicts” [2 years of insulin use/ 5 years of having diabetes] [36]
“If I go out with anybody I always go and do it (inject) in the toilet. I won’t ever do it outside.” [Participant 26] [42]
“I always refer to these two ‘specialists’ (my father and older brother who are on insulin) when it comes to insulin” [6 years of insulin use/ 10 years of having diabetes]“I gained a lot of knowledge from self-reading and relatives who are on insulin” [2 years of insulin use/ 5 years of having diabetes]
“Cost is a problem. If I went to the doctor plus medication, that was my week’s pay gone.” [Participant 15] [41]
“I would come off an ‘18 hour’ and the day shift boss would ring me up, says ‘hey, can you come in and do a couple of hours, bro.’… Insulin was not easy to take and you would pop it in, but no, I had to wait between shifts..” [Participant 11] [41]
“I wouldn’t go out to lunch with them [friends] and in the end, I had to tell them why. I said, ‘I can’t. I have got to have insulin. And I am not going to go into a toilet’.” [Participant 23] [42]
Theme 3. Psychological factors
“I am scared of needle.. you know, the poking itself, it is painful.. using needle some more, and you poke yourself... it is painful” [3 years of insulin use/ 6 years of having diabetes] [36]
A good diabetic is one who controls their diabetes …I am not a good diabetic. [Participant 7] [41]
“In that period of depression I was just happy when I felt good and that things were moving again, and that I could do my job again …and for me that was enough. The diabetes just wasn’t that important for me.” [Participant] [40]
Theme 4. Hypoglycaemia
“When I am hypoglycaemic, I feel wretched. ... I don’t really have a problem with high sugar levels, but the low ones are quite bothersome.” [Participant] [40]“to avoid hypos… I won’t have my insulin” [Participant 4] [41]
Theme 5. Therapy barriers
“I am type 2 and when I forget my insulin in the morning, then I skip it and take my next insulin with my next meal.” [Germany, Male] [37]
“Beginning [SMBG] yes, beginning very keen, now no. I’m just simply lazy to do it.” [P06, 69-year-old female retiree, diabetes for 15 years] [43]
“I never change the therapy my doctor prescribed! I trust him, that’s his job, not mine!” [67-year-old woman] [44]
“At first I was very afraid about changing my dosage of insulin. But then my doctor explained to me how... In the beginning, I used to call him, but now I frequently change the dosage on the basis of my own physical activity, diet, and sugar levels.” [55-year-old woman] [44]
Domain 2. HCP perceptions
Theme 1. Insulin-related skills
“My attitude about insulin therapy onset has changed. Before the start of 0f the project, I tried too long oral anti diabetics, but the courses have changed my attitude. I became confident in starting insulin therapy, whereas before I would never initiate insulin therapy.” [GP12-S3] [45]
“Specialists gain too much control of referred patients and often exclude GPs from direct patient care. This is especially true of patients on insulin who get free instructions and monitoring kits at the diabetes centres, unlike patients in primary care. So, it's nearly impossible for GPs to hold on to patients on insulin.” [GP1-S2] [45]
Theme 2. Healthcare integration
“This is a big change from the usual 'let us do our work; after all we are the specialists and you may help a little bit'. We collaborate as one team – there's mutual support! We're on the same wavelength and feel we work together toward the same objectives.” [GP13-S4] [45]
Theme 3. HCP perceptions of patient barriers
“I think probably they think it’s the end, that’s it, there’s nothing else they can have after that.” [HCP] [46]
“We see patients twice a year and the family and friends are there all the time, you know, I mean, we are supposed to be more powerful figures, but I mean, it’s quite difficult to overcome very different beliefs within the family.” [HCP] [46]
“Those who can afford also don’t see that it’s important to invest on the glucometer … When we talk about meter and everything, you have to talk about fear of pricking. That’s another barrier.” [Family medicine specialist, public health clinic] [47]“How come when we [public health clinics] give all [insulin and pens], we provide everything free, but the glucometer is not given, test strips are not given, and how are they [patients] monitoring the blood glucose?” [GP, private general practice] [47]
“Surely, one of the biggest barriers is this fear of going onto needles for the rest of your life. I think the effect of getting older is that they hate the idea of hypoglycaemia as well. They get very frightened of that.” [HCP] [46]
“So … the most common thing, what happen is, people start insulin, but after that, they don’t optimize and specify the regime. The patient who started just on one regime for, like, many years and nobody have actually taught the patient how to do the self-titration of the insulin too ….” [Family medicine specialist, public health clinic] [47]
Theme 4. Hypoglycaemia
Theme 5. Explanations for insulin adherence
“….so it depends how their [patients’] lifestyle... It depends on their work also … how’s their working and meal times. Their mealtimes also … they will tell us.” [Family medicine specialist, public health clinic] [47]“Maybe they [patients] will continue [using insulin] for a while, they will get better, they said, No, I don’t want injection anymore.” [R1, GP, private general practice] [47]“They said ‘I am better, so I can stop now.’” [R2, GP, private general practice] [47]
Domain 3. HCP-patient relationships
Theme 1. Patient perspectives of relational care
“I have got a good doctor… but they are busy, real busy, and I suppose you have not got time to talk.” [Patient 8] [41]“..we discussed about the issues of insulin, my worries and thoughts about insulin. I became less apprehensive and was ready to start on insulin therapy” [2 years of insulin use/ 5 years of having diabetes] [36]
“I have been using it [SMBG] every day because I know I have got an appointment coming up, so I better behave [participant giggled]. So that I can tell the doctor, you know, I want to bring down the insulin dose.” [P01, 57-year-old female clerk] [43]
Theme 2. HCP perspectives
“Diabetes patients themselves feel much more appreciated; because of that, the link between us and our patients has strengthened.” [GP17-S4] [45]
“…Because when we negotiate, you know, some, they said okay, after negotiating, then they’re okay. Then they try to follow.” [Family medicine specialist] [47]