Table 4 List of domains perceived as omitted or inadequately assessed in one or more questionnaire
Domains | Example quotes |
|---|---|
Diabetes-specific | |
Complications of diabetes | “No coverage of sexual dysfunction” (60, M, UK) |
Disordered eating | “Diabulimia had no mention” (24, F, UK) |
Illness perceptions | “I think there should be questions such as…Do you feel like you are suffering?” (54, F, AUS) |
Impact of high/low glucose | “Missing: Number of severe hypos per week” (70, F, UK); “Not one question about high blood sugars which are just as terrifying as lows.” (22, F, UK) |
Impact of managing diabetes | “The way you control your sugar levels ie insulin pump, DAFNE concepts, type of diet you are following” (57, F, Aus) |
Social and professional support | “The support you get from medical teams was missing from the questionnaire” (52, F, UK); “Should ask about support / knowing other diabetics. Shared experience.” (38, F, UK) |
Global aspects of life | |
Alcohol | “You didn’t mention alcohol?” (49, F, UK) |
Driving | “There were no questions about driving.” (65, M, UK |
Family planning | “Major issue I feel was overlooked is pregnancy, childbirth and fertility” (56, F, Aus) |
Financial and access Issues | “I don’t feel that the financial burden of diabetes management as a young, financially independent person is explored enough - this is a major burden.” (28, F, Aus) |
Health in general | “Haven’t asked how normal health concerns are impacted by diabetes” (33, F, UK) |
Impact on family | “Again, nothing about the impact on loved ones or carers” (53, M, UK) |
Intimate relationships | “It would be good to include a question on intimate relationships as well.” (25, F, UK) |
Mental health and emotional well-being | “The demands made of diabetes management on mental health need consideration” (46, M, Aus) |
Physical activity | “Didn’t provide a lot of insight into why…I can’t be as active as I would like” (33, F, Aus) |
Sleep | “Diabetes is very disruptive with regard to sleep and these issues were not covered” (51, F, Aus) |
Socialising | “Never asked what its like injecting in public, always having to think ahead before going out, never being spontaneous” (22, M, Aus) |
Social perceptions and stigma | “Not much to do with other people and their influences/thoughts” (22, F, Aus) |
Time and energy | “The amount of time or energy expended by various Diabetic issues” (41, M, Aus) |
Working life and employment | “The effect of diabetes with employment. Having hypos severely affects productivity which is often unacceptable to employers” (42, F, Aus) |
Othera | - |