First name
Katherine
Middle name
B
Last name
Bevans

Title

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

Year of Publication

2016

Date Published

2016 May 9

ISSN Number

2151-4658

Abstract

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.

DOI

10.1002/acr.22937

Alternate Title

Arthritis Care Res (Hoboken)

PMID

27159889

Title

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

Year of Publication

2017

Number of Pages

983-994

Date Published

2017 Oct 01

ISSN Number

1465-735X

Abstract

<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>

DOI

10.1093/jpepsy/jsx095

Alternate Title

J Pediatr Psychol

PMID

29046041

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