Patient Reported Outcomes Measurement Information System® (PROMIS(®) ) Tools for Collecting Patient-Reported Outcomes in Children with Juvenile Arthritis.

2016

2016 May 9

2151-4658

OBJECTIVE: To evaluate the precision and construct validity of pediatric Patient Reported Outcomes Measurement Information System(®) (PROMIS(®) ) instruments in a population of juvenile idiopathic arthritis (JIA) patients and parent proxies.

METHODS: A convenience sample of JIA patients and parents of JIA patients completed PROMIS instruments for eight domains: anger, anxiety, depressive symptoms, fatigue, mobility, pain interference, peer relationships, and upper extremity function. Short form and computerized adaptive test (CAT) scores were derived from item bank responses. Raw scores were translated to standardized T-scores with corresponding standard errors (SEs). Discrimination between inactive versus active disease was evaluated as an indicator of each measures' construct validity. SEs were plotted to evaluate each instrument's relative precision. Patient-parent concordance was assessed using intraclass correlations (ICC).

RESULTS: 228 patients and 223 parents participated, providing 71-78 responses per domain. Patient- and parent-reported anger, fatigue, mobility, and pain interference scores significantly differed between those with inactive and active disease. Anxiety, depressive symptoms, and peer relationships differed by disease activity levels for parent-report only. Short forms and CATs provided comparable reliability to the full item banks across the full range of each outcome. Patient-parent agreement ranged from ICC=0.3 to 0.8. CAT did not reduce the number of items for any domain compared to the short form.

CONCLUSION: Precision and discriminatory abilities of PROMIS instruments depend on health domain and report type (self-report versus parent proxy-report) for children with JIA. Varying levels of patient-parent concordance reinforces the importance of considering both perspectives in comprehensive health outcomes assessments. This article is protected by copyright. All rights reserved.

10.1002/acr.22937

Arthritis Care Res (Hoboken)

27159889

Improving Care Management in Attention-Deficit/Hyperactivity Disorder: An RCT.

2021

2021 Jul 19

1098-4275

<p><strong>OBJECTIVES: </strong>To compare the effectiveness of care management combined with a patient portal versus a portal alone for communication among children with attention-deficit/hyperactivity disorder (ADHD).</p>

<p><strong>METHODS: </strong>Randomized controlled trial conducted at 11 primary care practices. Children aged 5 to 12 years old with ADHD were randomly assigned to care management + portal or portal alone. The portal included parent-reported treatment preferences and goals, medication side effects, and parent- and teacher-reported ADHD symptom scales. Care managers provided education to families; communicated quarterly with parents, teachers, and clinicians; and coordinated care. The main outcome, changes in the Vanderbilt Parent Rating Scale (VPRS) score as a measure of ADHD symptoms, was assessed using intention-to-treat analysis.</p>

<p><strong>RESULTS: </strong>A total of 303 eligible children (69% male; 46% Black) were randomly assigned, and 273 (90%) completed the study. During the 9-month study, parents in the care management + portal arm communicated inconsistently with care managers (mean 2.2; range 0-6) but similarly used the portal (mean 2.3 vs 2.2) as parents in the portal alone arm. In multivariate models, VPRS scores decreased over time (Adjusted β = -.015; 95% confidence interval -0.023 to -0.07) in both groups, but there were no intervention-by-time effects (Adjusted β = .000; 95% confidence interval -0.011 to 0.012) between groups. Children who received ≥2 care management sessions had greater reductions in VPRS scores than those with fewer sessions.</p>

<p><strong>CONCLUSIONS: </strong>Results did not provide evidence that care management combined with a patient portal was different from portal use alone among children with ADHD. Both groups demonstrated similar reductions in ADHD symptoms. Those families with greater care management engagement demonstrated greater reductions than those with less engagement.</p>

10.1542/peds.2020-031518

Pediatrics

34281997

Development and Content Validation of the Transition Readiness Inventory Item Pool for Adolescent and Young Adult Survivors of Childhood Cancer.

2017

983-994

2017 Oct 01

1465-735X

<p><strong>Objective: </strong>The development of the Transition Readiness Inventory (TRI) item pool for adolescent and young adult childhood cancer survivors is described, aiming to both advance transition research and provide an example of the application of NIH Patient Reported Outcomes Information System methods.</p>

<p><strong>Methods: </strong>Using rigorous measurement development methods including mixed methods, patient and parent versions of the TRI item pool were created based on the Social-ecological Model of Adolescent and young adult Readiness for Transition (SMART).</p>

<p><strong>Results: </strong>Each stage informed development and refinement of the item pool. Content validity ratings and cognitive interviews resulted in 81 content valid items for the patient version and 85 items for the parent version.</p>

<p><strong>Conclusions: </strong>TRI represents the first multi-informant, rigorously developed transition readiness item pool that comprehensively measures the social-ecological components of transition readiness. Discussion includes clinical implications, the application of TRI and the methods to develop the item pool to other populations, and next steps for further validation and refinement.</p>

10.1093/jpepsy/jsx095

J Pediatr Psychol

29046041