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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