Development and validation of PRISM: A survey tool to identify diabetes self-management barriers

Abstract

Aims Although most children with type 1 diabetes don’t achieve optimal glycemic control, no systematic method exists to identify and address self-management barriers. This study develops and validates PRISM (Problem Recognition in Illness Self-Management), a survey-based tool for efficiently identifying self-management barriers experienced by children/adolescents with diabetes and their parents. Methods Adolescents 13 years and older and parents of children 8 years and older visiting for routine diabetes management (n=425) were surveyed about self-management barriers. HbA1c was abstracted from the electronic health record. To develop PRISM, exploratory and confirmatory factor analyses were used. To assess validity, the association of PRISM scores with HbA1c was examined using linear regression. Results Factor analyses of adolescent and parent data yielded well-fitting models of self-management barriers, reflecting the following domains: 1) Understanding and Organizing Care, 2) Regimen Pain and Bother, 3) Denial of Disease and Consequences, and 4) Healthcare Team, 5) Family, or 6) Peer Interactions. All models exhibited good fit, with X2 ratios<2.21, root mean square errors of approximation<0.09, Confirmatory Fit Indices and Tucker-Lewis Indices both >0.92, and weighted root mean square residuals<1.71. Greater PRISM barrier scores were significantly associated with higher HbA1cs. Conclusions Our findings suggest at least six different domains exist within self-management barriers, nearly all of which are significantly related to HbA1c. PRISM could be used in clinical practice to identify each child and family’s unique self-management barriers, allowing existing self-management resources to be tailored to the family’s barriers, ultimately improving effectiveness of such services.

Barriers to medication use in rural underserved patients with asthma

“…8,9 The occurrence of barriers can vary from patient to patient and can be particularly burdensome in chronic disease management. 10 Previous literature illustrates that barriers can include lack of knowledge, asthma-related beliefs and practical issues such as costs. 7 Researchers have examined the relationships between barriers encountered by vulnerable inner-city/urban populations and adherence to asthma medication regimens.…”

Design and baseline data from a PCORI-funded randomized controlled trial of family-centered tailoring of diabetes self-management resources

“…This research compares the effectiveness of family-centered tailoring of diabetes self-management resources (intervention) to that of usual care, with regard to glycemic control and QOL among youth with T1D and their parents at two clinical sites. The family-centered intervention package includes: 1) identifying the family’s self-management barriers using a validated survey tool, the Problem Recognition in Illness Self-Management (PRISM), 16,27 2) use of PRISM results to tailor self-management resources to the family’s self-identified needs; and 3) delivery of the tailored self-management resources in group sessions coordinated with routine diabetes clinic visits.…”

“…Each parent and youth aged 13–16 years completed PRISM, a validated, 28-item, 10-minute tool for identifying self-management barriers among youth with diabetes and their parents, developed with input from families (available free at https://www.hipxchange.org/PRISM). 16,27 PRISM identifies the 3 self-management barriers that were addressed in the study: 1) understanding and organizing care, 2) motivation, and 3) family interactions. Families for whom PRISM identified at least 1 self-management barrier were randomized by a computer program to intervention or usual care on a 1:1 ratio.…”

“…Secondary outcomes included intervention effects on: percentage of patients meeting A1c target, PRISM barrier scores, 16,27 and three other survey-based measures, including worry about hypoglycemia (15-item worry subscale of the Hypoglycemia Fear Scale 42,43 ), diabetes management self-efficacy beliefs (12 items adapted for adolescents from the Confidence in Diabetes Self-Care scale 44 ), and self-management behaviors (14 items of the Self Care Inventory 45 ). All survey measures have been previously validated and found to have acceptable psychometric properties.…”

“…12,15 Multiple barriers in areas such as motivation, family interactions, and understanding and organizing diabetes self-management impede self-management and correlate with poor self-management and diabetes control. 16,17 …”