Table 4.
Outcomes of the workshop event for PWD and FM
| 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 |
|