Design and psychometrics for new measures of health-related quality of life in adults with type 1 diabetes: Type 1 Diabetes and Life (T1DAL)

Modified e-Delphi Process for the Selection of Patient-Reported Outcome Measures for Children and Families With Type 1 Diabetes Using Continuous Glucose Monitors: Delphi Study

“…QoL-related PROMs in this domain assess developmentally appropriate emotional, physical, and social well-being and treatment satisfaction, and can help clinicians provide early intervention and health education, and prevent disease-related complications. The group chose to administer the T1DAL measures [ 26 , 41 ] annually to assess QoL in all age groups.…”

“…A comprehensive list of all PROMs considered all 3 rounds, citations, and additional literature can be found on the Delphi Kit website. The PedsQL 3.2 Diabetes module [25] was selected for inclusion in round 1, but reviewers reported concerns with validity, reliability, and length; hence, it was replaced by the Type 1 Diabetes and Life (T1DAL) measures [26] during round 2 on the suggestion of one of the Delphi participants and was approved by the other participants in round 3. One of the Delphi participants was a subject matter expert on adolescents with diabetes and suggested during round 2 that the Problem Areas in Diabetes scale (PAID) was more geared toward the pediatric population and the Diabetes Distress Scale (DDS) is a more suitable instrument for adolescents.…”

The Feasibility and Acceptability of a Community-Developed Health Insurance and Financial Toolkit for Emerging Adults With Type 1 Diabetes

“…Participant demographics and diabetes history were collected at baseline. Primary outcomes of health insurance literacy, 3 financial stress, 10 and diabetes-related quality of life 11 and secondary outcomes of transition navigation readiness 12 and diabetes distress 13 were collected at baseline, 1 month (immediately postintervention, Timepoint 2), and 3 months from baseline (Timepoint 3). An investigator-developed survey about diabetes-related finances was administered at baseline and 3 months.…”

Function and Emotion in Everyday Life With Type 1 Diabetes (FEEL-T1D): Protocol for a Fully Remote Intensive Longitudinal Study (Preprint)

“…Gender, ethnicity, education, income, health care coverage, marital status, employment status Demographic questionnaire N/A a Recent severe high/low blood glucose events, method of insulin delivery, pump/injections/continuous glucose monitor use, diagnoses, height and weight Clinical information N/A 10 items, measures personality along 5 dimensions 10-item personality inventory [17] Personality Diabetes management 16 items, higher scores indicate more desirable self-management behavior Diabetes self-management questionnaire [18] Self-management 3 items, inspired by medication adherence items [19], also administered at followup Insulin self-management Insulin self-management 9 items, higher scores signal increased levels of diabetes self-care, 4 subscales Self-Care Inventory-Revised [20] Diabetes self-care Emotional well-being 14 items, higher scores indicate more fear of hypoglycemia Hypoglycemic attitudes and behavior scale [21] Fear of hypoglycemia 7 items, higher scores indicate increased severity of anxiety Generalized Anxiety Disorder Assessment [22] Anxiety 8 items, higher scores indicate more diabetes stigma experienced, 3 subscales Type 1 Diabetes Stigma Assessment Scale [23] Diabetes stigma 18 items, higher scores reflect greater difficulty with emotion regulation Difficulties in emotion regulation scale [24] Emotional regulation 8 items, higher scores reflect greater depression symptoms severity Patient health questionnaire [25] Depressive symptoms Other 11 items, higher scores indicate a higher level of lifestyle balance Occupational balance questionnaire [26] Occupational balance 12 items, higher scores signal greater satisfaction with social support system Social support questionnaire [27] Social support a N/A: not applicable. Functional health status 13 items, higher scores reflect greater interference associated with the disease (diabetes) and its treatment Adapted illness intrusiveness rating scale [29] Illness intrusiveness Emotional well-being 27-36 items depending on age group, higher scores reflect better diabetes-related quality of life Helmsley quality of life and diabetes survey [30] Diabetes-related quality of life 5 items, higher scores suggest greater diabetes-related emotional distress Problem areas in diabetes scale [31] Diabetes distress 9 items, sum of 4 items indicates positive affect and sum of other 4 items indicates negative affect; 1 item not from original ("tension") was added…”