Patients’ perspectives on how to improve diabetes care and self-management: qualitative study

Abstract

ObjectivePeople living with diabetes need and deserve high-quality, individualised care. However, providing such care remains a challenge in many countries, including Canada. Patients’ expertise, if acknowledged and adequately translated, could help foster patient-centred care. This study aimed to describe Expert Patients’ knowledge, wisdom and advice to others with diabetes and to health professionals to improve diabetes self-management and care.Design and methodsWe recruited a convenience sample of 21 men and women. Participants were people of diverse backgrounds who are Patient Partners in a national research network (hereafter Expert Patients). We interviewed and video-recorded their knowledge, wisdom and advice for health professionals and for others with diabetes. Three researchers independently analysed videos using inductive framework analysis, identifying themes through discussion and consensus. Expert Patients were involved in all aspects of study design, conduct, analysis and knowledge translation.ResultsAcknowledging and accepting the reality of diabetes, receiving support from family and care teams and not letting diabetes control one’s life are essential to live well with diabetes. To improve diabetes care, health professionals should understand and acknowledge the impact of diabetes on patients and their families, and communicate with patients openly, respectfully, with empathy and cultural competency.ConclusionExpert Patients pointed to a number of areas of improvement in diabetes care that may be actionable individually by patients or health professionals, and also collectively through intergroup collaboration. Improving the quality of care in diabetes is crucial for improving health outcomes for people with diabetes.

Prediction models of diabetes complications: a scoping review

“…It may also help clinicians better identify people who need more support and researchers to design customisable risk prediction tools for use in diabetes care 122. Our findings align with previous work and are supported by clinical guidelines recommending healthy lifestyle, health education, tight self-management and regular screenings for the detection of macro and microvascular diseases 15 119 122 123. However, predicted risk of complications being unclear for members of social minority groups, younger people and people with pre-diabetes or type 1 diabetes, clinicians should be cautious when relying on existing risk prediction models to inform diabetes care for members of these groups.…”

“…Information about the ‘course of disease’ is the second highest of nine patient information needs, especially information about the ‘consequences of diabetes’ on physical health, lifestyle and social life 116. Moreover, our findings can address the needs of diabetes care stakeholders for synthesised, evidence-based and easily readable information to support the prevention of diabetes complications 119…”

Experiences of First Nations adolescents living with type 2 diabetes: a focus group study

“…Our results reflect those of other studies reporting high rates of stress and diabetes distress in pediatric patients with type 1 diabetes, 15,16 and adult patient perspectives on living with type 2 diabetes, which emphasized the importance of family and provider support and the need for increased awareness and understanding of the impact of diabetes in the context of the patient's life. 8 Shared experiences between these populations and the adolescents with type 2 diabetes in our study include the stressful demands of chronic disease management and the desire for increased understanding from peers, family members and health care providers. However, the level of distress at the time of diagnosis is unique to our cohort of youth with type 2 diabetes, signifying the depth of knowledge adolescents had about diabetes before diagnosis.…”

“…It is important to include people in health research who have lived experience with the condition of interest to ensure that patient priorities are considered, ultimately leading to improved outcomes. [6][7][8] Patients prefer practical clinical trials that measure the effect of treatments on health outcomes identified and prioritized by patients. 7 Patient engagement in the research process has been shown to improve patient enrolment, retention and reporting and dissemination of study findings.…”

Evaluation of Educational Needs for Diabetic Patients

“…Learning to cope with the multifaceted nature of diabetes in a social environment has been defined as an evolutionary process of information or consciousness growth in diabetes self-care [11][12]. Healthy lifestyle including healthy diet, physical activity, blood sugar monitoring, medication compliance, good problemsolving skills, healthy coping skills, and risk-reduction behaviors are the seven dimensions of diabetic self-care [13][14].…”