583506

research-article2015

DSTXXX10.1177/1932296815583506Journal of Diabetes Science and TechnologyMarkowitz et al

Original Article

Youth-Perceived Burden of Type 1 Diabetes: Problem Areas in Diabetes Survey–Pediatric Version (PAID-Peds)

Journal of Diabetes Science and Technology 1­–6 © 2015 Diabetes Technology Society Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/1932296815583506 dst.sagepub.com

Jessica T. Markowitz, PhD1,2, Lisa K. Volkening, MA2, Deborah A. Butler, MSW1,2, and Lori M. B. Laffel, MD, MPH1,2

Abstract Background: Management of type 1 diabetes in childhood can be challenging and overwhelming. Despite availability of advanced treatments and new technologies, the burden has not decreased as current approaches to intensive therapy are not without need for patient involvement. This study aimed to design and validate a measure of youth-reported burden related to type 1 diabetes management. Method: A multidisciplinary pediatric diabetes team designed the survey, based on a previously validated parent measure of diabetes-related burden (PAID-PR); survey revisions and pilot testing followed. The 20-item PAID-Peds assesses burden over the past month. Youth with type 1 diabetes (N = 126, ages 8-17, intensively treated with insulin pump therapy or multiple daily injections) completed the new survey, along with other surveys; parents completed companion measures. Electronic medical records and blood glucose meter download provided other salient data. Results: The PAID-Peds displayed excellent internal consistency (α = .94) and acceptable test–retest reliability (intraclass correlation .66, P < .0001). The PAID-Peds correlated significantly with both youth and parent reports of diabetes-specific family conflict, negative affect around blood glucose monitoring, depressive symptomatology, trait anxiety, and quality of life. It was not correlated with demographic or clinical characteristics of the youth. Conclusions: This new measure, the PAIDPeds, of youth-reported burden related to type 1 diabetes may have clinical and research utility, particularly in the current era of emerging diabetes technologies that require ongoing patient input. Keywords adolescence, burden, psychosocial, type 1 diabetes Managing pediatric diabetes can be challenging and overwhelming for youth with type 1 diabetes and their caregivers.1,2 Despite advances in diabetes treatments and technologies, glycemic control remains suboptimal in the pediatric population.3-5 Advanced treatments and technologies can also add burden, as none are automated in their implementation,6,7 which can lead youth to stop wearing them. Such treatment burdens have the potential to impact quality of life, which is an important factor in clinical and research realms. Because diabetes management is multifaceted and time-consuming, it is important for clinicians and researchers to be able to assess diabetes-related burden in those impacted by the disease. The Problem Areas in Diabetes Survey (PAID)8 was first created and validated in the 1990s to measure and assess diabetes-related burden in adults with diabetes. This original PAID has excellent psychometrics8 and is widely used. Recently, a shorter version (PAID-5)9 was utilized in an international study of psychosocial factors associated with diabetes.10 In addition, 2 different applications of the PAID have been created and validated for use in the pediatric

population; the PAID–Parent Revised survey (PAID-PR)11 assesses diabetes-related burden in parents, and the PAID– Teen survey (PAID-T)12 assesses diabetes-related burden in teens with type 1 diabetes, ages 11-19. We created a Pediatric PAID prior to the publication of the PAID-T, as a companion to the PAID-PR for use in younger pediatric patients as well as teens, spanning the pediatric ages of 8-17 years. This report describes the development of this measure, created to accompany the PAID-PR, and its psychometric properties.

1

Joslin Diabetes Center, Pediatric, Adolescent, & Young Adult Section, Department of Psychiatry, Harvard Medical School, Boston, MA, USA 2 Joslin Diabetes Center, Section on Genetics & Epidemiology, Boston, MA, USA Corresponding Author: Jessica T. Markowitz, PhD, Joslin Diabetes Center, Pediatric, Adolescent, & Young Adult Section, Department of Psychiatry, Harvard Medical School, 1 Joslin Pl, Boston, MA 02215, USA. Email: [email protected]

2

Methods Participants were ages 8-17 years with type 1 diabetes for ≥1 year; all received intensive insulin therapy (insulin pump or multiple daily injections ≥3×/day), as intensively based treatment programs are the recommended approach to type 1 diabetes management.13 Participants completed surveys at baseline and after 1 week. All study procedures were approved by the local Institutional Review Board. Written informed consent/assent was obtained prior to any study procedures.

Survey Design Items from the PAID-PR (n = 18) were reviewed by a multidisciplinary team for face validity and applicability to pediatric patients and salient items were modified for delivery to a pediatric sample. In addition, 2 new items were added to address youth’s emotional response to diabetes (“I am annoyed when I have to stop what I am doing to check my blood sugar”; “I feel embarrassed about having diabetes”). The preliminary PAID-Peds then underwent feasibility testing with patients who spanned the target age range to assess its face validity, applicability, and ease of administration. The 20-item Paid-Peds assesses burden over the past month. There are 5 response options scored on a 0-4 Likerttype scale (agree to disagree). Higher score indicates greater burden related to having diabetes. Sample questions include “During the past month . . . I feel sad a lot when I think about having diabetes”; “It bothers me to think so much about what I eat”; “I feel left out when I can’t eat things other kids are eating”; “I am tired of having to remember to give insulin shots or to bolus.” Construct validity was assessed by correlation with other validated measures that evaluate related constructs (see below), as well as with treatment data from the electronic health record (EHR). Glucose meter download provided data on blood glucose monitoring frequency. Youth completed the PAID-Peds again after 1 week to assess test–retest reliability. Internal consistency was also assessed.

Measures Parent PAID (PAID-PR).  Parents completed the 20-item PAIDPR11 to assess their perceived burden associated with caring for a child with diabetes over the past month. Items are answered on a 5-point Likert-type scale (0 = “agree” to 4 = “disagree”) with higher scores indicating greater diabetesrelated burden. Diabetes Family Conflict Scale–Revised (DFCS-R). Youth and parents completed the 19-item DFCS-R14 to assess the level of diabetes-specific family conflict around diabetes management tasks over the past month. Items are answered on a 3-point Likert-type scale (1 = “never argue,” 2 = “sometimes

Journal of Diabetes Science and Technology  argue,” 3 = “always argue”). Higher scores indicate greater diabetes-specific family conflict. Blood Glucose Monitoring Communication Survey (BGMC). Youth and parents completed the 8-item BGMC15 to assess their negative affect related to blood glucose monitoring over the past month. Items are answered on a 3-point Likert-type scale (1 = “almost never,” 2 = “sometimes,” 3 = “almost always”). Higher scores indicate a greater degree of negative affect surrounding blood glucose monitoring. Center for Epidemiological Studies Depression Scale (CESD). Youth completed the 20-item CESD16 to assess their symptoms of depression in the past week. Items are scored on a 4-point Likert-type scale (0 = “not at all,” 1 = “a little,” 2 = “some,” 3 = “a lot”), with higher scores indicating greater symptoms of depression. A score of ≥15 for youth and ≥16 for parents denotes endorsement of depressive symptoms.17,18 State–Trait Anxiety Inventory for Children (STAIC).  Youth completed the 40-item STAIC19 to self-assess symptoms of anxiety in general (no time period) related to both state and trait. Items are scored on a 1-3 Likert-type scale with higher scores indicating more symptoms of anxiety (examples are “I feel . . . very calm; calm, not calm”; “I worry about making mistakes . . . hardly ever; sometimes, often”). In addition, parents completed a proxy version, the State-Trait Anxiety Inventory for Children–Parent Report–Trait Version, assessing their child’s symptoms of trait anxiety.20 Pediatric Quality of Life Inventory (PedsQL).  Youth and parents completed the PedsQL,21,22 generic (23 items) and diabetesspecific (28 items) modules, to assess youth health-related quality of life over the past month. Items are scored on a 4-point Likert-type scale (0 = “never,” 1 = “almost never,” 2 = “sometimes,” 3 = “often,” 4 = “almost always”), with higher scores indicating greater quality of life. The parent surveys provide proxy assessments of youth quality of life.

Statistical Analyses Statistical analyses were performed with SAS (v9.2, SAS Institute, Cary, NC). Tests included descriptive and univariate analyses, Pearson and Spearman correlations, chi-square, and Cronbach’s alpha. A P value of

Youth-Perceived Burden of Type 1 Diabetes: Problem Areas in Diabetes Survey-Pediatric Version (PAID-Peds).

Management of type 1 diabetes in childhood can be challenging and overwhelming. Despite availability of advanced treatments and new technologies, the ...
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