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Table 5 Patient important outcome constructs for value-based diabetes care

From: The participatory development of a national core set of person-centred diabetes outcome constructs for use in routine diabetes care across healthcare sectors

Clinical outcome constructs/indicators
A1c, BGM/FMM measurements, clinician defined and registered indicators for presence of diabetes foot complications, incl. amputation, retinopathy, neuropathy, nephropathy, cardiovascular disease, ketoacidosis, severe hypoglycemia, hospitalization rate
Patient reported outcome constructs
Core diabetes outcome constructs Relevance for PWD Mutability Clinical significance Construct characteristics referred to in working group
Health outcomes
1. Self-reported health and functioning 10 6 10 Self-reported physical health and functioning
2. Psychological well-being 10 6 10 Positive psychological well-being, mental health and risk of depression
3. Diabetes related distress 10 3 9 Diabetes-specific emotional impacts, frustrations, worries, fears, limitations, and daily burden
4. Impact of diabetes on life quality NR NR NR Impact of diabetes on quality of life beyond emotional distress. Detailing of this was out of scope
5. Somatic symptom distress 10 5 NR Neuropathic pain. Sexual dysfunction. Sleep problems, fatigue, cognitive deficiency, Chest pain, cardiovascular symptoms, Hypo- and hyperglycemia
Process of care and treatment
6. Hypoglycemic episodes requiring assistance 10 10 10 Hypoglycemic episodes requiring assistance from others were important to register through self-report to complement clinical registration
7. Burden of daily diabetes treatment 10 8 10 Perceived burden, hassles and side effects related to prescribed medical treatment regimen and requirements for daily monitoring and planning
8. Burden of hypoglycemia 9 9 9 Quality of life, emotional and behavioral burden of risks and symptoms of hypo-glycemia. Impacts on well-being, lifestyle, self-care, daily life, work/study, social and leisure life. A priority subconstruct of 7. Mostly relevant to insulin users
Sustainability factors
9. Confidence in ability to perform diabetes self-management 10 7 10 Confidence in or ability to manage diabetes well: Diet, exercise, medicine, well-being, blood sugar monitoring, active role in own care decisions, navigating the care system, health competency
10. Confidence and comfort in adequate access to person-centred diabetes care 10 7 10 Feeling secure and confident in having available access to quality medical care, relevant technologies and self-management support
Getting quality person-centred diabetes care; HCPs listening and communicating effectively, involving PWD in care decisions
  1. Range for ratings of relevance for PWD, mutability and clinical significance were 1–10
  2. NR not rated