What is important for people with type 2 diabetes? A focus group study to identify relevant aspects for Patient-Reported Outcome Measures in diabetes care

Abstract

Background Patient-Reported Outcome Measures (PROMs) aim to evaluate the quality of care based on the perspectives of patients rather than clinical indicators. Qualitative research is needed to identify these perspectives in people with type 2 diabetes. Objective To identify, for the first time in Israel, aspects valuable for people with type 2 diabetes that can be relevant for PROMs in diabetes care. Methods A qualitative study included three focus groups totalling 19 people with type 2 diabetes. Inclusion criteria were: (1)type 2 diabetes, (2)diabetes duration of at least six months, and (3)adults aged 45–80 years. Purposive sampling enabled recruitment of heterogeneous participants. Also, two experts’ panels with healthcare providers involved in diabetes care (n = 23) were conducted to provide triangulation of information (more testimony about what is valuable for people with type 2 diabetes). Discussions were recorded, transcribed and thematically analysed. Results Four domains were deemed valuable for people with type 2 diabetes: (1)challenges of living with diabetes, including reduced physical function, healthy lifestyle struggles, sexual dysfunction, and financial burden, (2)mental health issues, including depression, distress, anxiety, frustration, and loneliness, (3)self-management ability, including management of lifestyle modifications and treatment, knowledge about the disease and treatment, and (4)patient-clinician relationships, including the devotion of clinicians, trust in clinicians and treatment, shared decision-making, and multidisciplinary care under one roof. Experts favour using PROMs in diabetes routine care and even acknowledged their necessity to improve the treatment process. However, only some of the domains raised by people with type 2 diabetes were identified by the experts. Conclusions There are content gaps between perspectives of people with type 2 diabetes and their healthcare providers. PROMs are essential in addressing issues largely not addressed in routine diabetes care. We recommend that researchers and healthcare providers, who intend to utilize PROMs for diabetes care, consider the aforementioned domains.

Implications of Patient-Reported Outcome Measures among patients with recently diagnosed type 2 diabetes

“…What about the low-paid workers or the elderly who live off of their pensions, how could they pay for that? They cannot.” [ 34 ]. Another Israeli study showed that 10% of patients with diabetes were non-adherent with pharmacotherapy due to cost; and this behavior was associated with low socioeconomic position, unemployment, and lack of physician explanation about the prescribed medication [ 69 ].…”

“…First, the results suggest that PROMs are applicable for routine measurement of diabetes quality care; the examined questionnaires are free for use in clinical practice, with acceptable length and are easily scored. Second, the examined PROMs were based on incorporating both the standard set recommended by ICHOM and aspects that are somewhat neglected in the existing PROMs, such as sexual dysfunction and financial burden, which were found valuable for patients with type 2 diabetes in our previous qualitative study [ 34 ]. Third, we used well-validated questionnaires and the combination of generic and diabetes-specific PROMs provided a comprehensive assessment.…”

“…The questionnaire construction was based on incorporating both the standard set recommended by ICHOM [ 20 ] and the results of our previous qualitative study that identified valuable aspects for patients with type 2 diabetes [ 34 ]. We adopted the Problem Areas in Diabetes (PAID) [ 35 ] questionnaire as the diabetes-specific questionnaire.…”

“…According to our qualitative study [ 34 ], there were aspects deemed valuable to patients with diabetes that were not covered in the above-mentioned questionnaires. To get a full scope of these aspects, 3-items were added from the Diabetes Distress Scale [ 41 ] (confident in ability to manage diabetes, doctor doesn’t give clear enough directions and doctor doesn’t take my concerns seriously) and 4-items were added by the authors (medication costs, shared decision-making, sexual dysfunction and integrated care under one roof).…”

Patient-centered care in diabetes care-concepts, relationships and practice

“…Eigeland et al [ 36 ] reported that critical physician behaviors in the formation of a good physician-patient relationship can be grouped into six domains: (1) Valuing the whole person, (2) investigating and planning for the future, (3) collaboration and empowerment, (4) validation and emotional support, (5) politeness and courtesy, and (6) professionalism. Abdel-Rahman et al [ 37 ] proposed important domains for people with diabetes, including challenges living with diabetes; mental health issues, including depression, distress, anxiety, frustration, and loneliness; self-management ability; and patient-clinician relationships. Zeh et al [ 38 ] assessed PCC among patients with chronic diseases and proposed that PCC elements include the appropriate length of access to care, competence, empathy, individual consideration of each patient's situation, taking a holistic perspective of the patient, patient-centered communication, the integration of multidisciplinary treatment, transparency regarding waiting time and the reduction of unequal access to care.…”