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Table 4 Outcomes of the workshop event for PWD and FM

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

Impact, outcomes, and factors for sustainability
Diabetes outcome constructs considered important by PWD and FM Overall desired outcome: To live as normal and healthy life as possible. Achieving a sense of normalcy and acceptance of diabetes in daily life
Physical
Prioritised outcomes Description/underlying categories
Physical health and well-being Maintain physical health and functioning
Minimise risk for disease progression and late stage complications
Blood sugar regulation A1c within range (individualised targets)
Stable blood sugar/staying within range (insulin-treated)
Diabetes symptom distress Symptom distress related to:
Neuropathic pain
Sexual dysfunction
Sleep problems
Fatigue
Cardiovascular symptoms
Gastrointestinal symptoms
Psychological
Mental health and well-being Psychological well-being
Mental health conditions: Depression and anxiety
Diabetes related quality of life and emotional distress Impact of diabetes on quality of life
Worry about diabetes complications
Fear of and overall burden of hypoglycemia
Feeling diabetes takes up too much of daily life
Frustrations due to daily self-care hassle and demands
Being limited in doing activities
Social
Diabetes impact on participation in and enjoyment of social activity Limiting participation in social activities
Impaired enjoyment of social activities
Lack of understanding of diabetes in surroundings causing misguided attention and interference
Disutility of treatment Burden of managing diabetes and treatment regimens Burden of constant demand for attention to self-care
Impact of lifestyle restrictions on quality of life
Impact of hypoglycemia on well-being, daily life (social, work, activities), physical activity, self-care
Burden of blood glucose measurement (finger pricking)
Burden of medication management (hassle, injection problems, side effects)
Sustainability factors
(Requirements for long-term treatment success)
Ability to manage diabetes Confidence in ability to manage diabetes
Eating healthy without feeling deprived
Staying physically active
Avoiding risk behaviors (i.e. smoking, alcohol)
Able to navigate and use the healthcare system
Confidence in access to quality person- centred diabetes care Whole person diabetes care:
Be cared for as a “whole person” with equal attention to psychosocial and biological aspects and consideration of overall health and quality of life
Person-centred interpersonal communication:
Being respected, listened to, positively encouraged, recognized for own effort and role, shared decision-making for realistic goals, person-centred language
Value-based care
Focus and tailor care around individual needs and priorities
Access to quality of diabetes care Continuity of care: Same HCP over time
Competency of HCPs: Access to diabetes specialists
Flexibility of care: Flexible options for care options, use of IT for flexible options for communication and sharing of own diabetes data
Diabetes technologies which meet individual needs Access to the technology that is needed to measure and regulate blood sugar in the best way
Access to pump
Social/motivational support for living well with diabetes in the community Having access to social or peer support to help motivation
Group based education and support activities