Development of the Diabetes Family Adherence Measure (D–FAM)

An examination of how adolescent–caregiver dyad illness representations relate to adolescents' reported diabetes self‐management

“…Adolescents mostly live with their immediate family and caregivers still tend to assume some responsibility for their self‐management (Anderson & Coyne 1991; Anderson et al . 1997; Lewin et al . 2010).…”

A systematic review of patient-reported measures of burden of treatment in three chronic diseases

“…This information, along with a review of item wording of each relevant measure, provides a general sense of the common content domains reflected in the measures. We identified the following 12 content domains as common to two or more of the identified measures: emotional impact/regimen-related distress,6,23,24,26–38 family conflict/unsupportive behavior from others,39–44 convenience of treatment (eg, insulin, oral medications),2,6,19,21,22,24,25,29,38,45–57 self-care convenience (eg, exercise, foot care, overall impression of self-care),22,24,25,37,38,48,51,56–60 monitoring burden (eg, glucose monitoring),2,21,22,24,25,38,49,53,56–58,60–63 lifestyle impact (including social restrictions and work interference),2,6,21,24,33,36,37,46,47,50,52,58,62,64,65 scheduling flexibility,26,29,46,47 medication side effects,29,46,47,55 diet/food-related problems,2,21,22,25,32,…”

“…Among patients with end-stage renal disease, Griva et al found that the total treatment disruptiveness score of the Treatment Effects Questionnaire was strongly associated with the total illness disruptiveness score of the Illness Effects Questionnaire (r = 0.83) 36. Only four measures showed any evidence of discriminant validity (Diabetes Family Adherence Measure, Insulin Treatment Satisfaction Questionnaire, Problem Areas in Diabetes, and Treatment Effects Questionnaire) 32,36,39,52. For example, while the coercion scale of the Diabetes Family Adherence Measure has been found to be highly associated with the nonsupportive behaviors scale of the Diabetes Family Behavior Checklist (r = 0.65), it is much less associated with the warmth/caring (r = 0.22) and guidance/control (r = 0.14) subscales of the Diabetes Family Behavior Scale 39.…”

“…Only four measures showed any evidence of discriminant validity (Diabetes Family Adherence Measure, Insulin Treatment Satisfaction Questionnaire, Problem Areas in Diabetes, and Treatment Effects Questionnaire) 32,36,39,52. For example, while the coercion scale of the Diabetes Family Adherence Measure has been found to be highly associated with the nonsupportive behaviors scale of the Diabetes Family Behavior Checklist (r = 0.65), it is much less associated with the warmth/caring (r = 0.22) and guidance/control (r = 0.14) subscales of the Diabetes Family Behavior Scale 39. Evidence of convergent and discriminant validity was absent for measures scoring single items.…”

“…Sample patient groupings on which measure scores significantly differed include continuous glucose monitoring (users versus nonusers),62,73 insulin use (yes versus no, type of insulin),31,74,75 dialysis type,76 insurance status,57 and mental health status 6,77. Clinical indicators such as hemoglobin A1c and adherence with self-care were consistently associated with measure scores across numerous studies, with greater treatment burden associated with higher hemoglobin A1c6,25,27,38,39,41,49,54 and poorer adherence with self-care 2,26,28,40,56,63,64. Other variables frequently associated with measure scores included age (younger age, more burden)6,28,78,79 and self-reported health (poorer health, more burden) 49,67,79…”