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Protocol - PedsQL Sickle Cell Disease Module

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Protocol Name from Source:

This section will be completed when reviewed by an Expert Review Panel.

Availability:

Proprietary

Description:

The PedsQL ™ Sickle Cell Disease Module includes 43 items from 9 subscales: Pain and Hurt (9 items); Pain Impact (10 items); Pain Management and Control (2 items); Worry (5 items); Worry II (2 items); Emotions (2 items); Treatment (7 items); Communication I (3 items); and Communication II (3 items). For all ages, each item asks how much of a problem there has been in the past month. There are self- or parent-reported forms for ages 8 to 18, and responses are scored on a 5-point Likert-style scale (0 = never a problem; 1 = almost never a problem; 2 = sometimes a problem; 3 = often a problem; 4 = almost always a problem). Forms for children ages 5 to 7 are interviewer-administered, and responses include a 3-point Likert-style scale (0 = not at all a problem; 2 = sometimes a problem; 4 = a lot of a problem). Items are reversed-scored and converted to a 100-point scale (0 = 100, 1 = 75, 2 = 50, 3 = 25, 4 = 0) with higher scores indicating better quality of life. Scores for individual subscales are the sum of items divided by the total number or items answered. The total score for the PedsQL™ Sickle Cell Disease Module is the sum of the items divided by the number of items answered.

Protocol:

Summary of the PedsQL™

The PedsQL ™ Sickle Cell Disease Module includes 43 items from 9 subscales: Pain and Hurt (9 items); Pain Impact (10 items); Pain Management and Control (2 items); Worry (5 items); Worry II (2 items); Emotions (2 items); Treatment (7 items); Communication I (3 items); and Communication II (3 items). For all ages, each item asks how much of a problem there has been in the past month. There are self- or parent-reported forms for ages 8 to 18, and responses are scored on a 5-point Likert-style scale (0 = never a problem; 1 = almost never a problem; 2 = sometimes a problem; 3 = often a problem; 4 = almost always a problem). Forms for children ages 5 to 7 are interviewer administered, and responses include a 3-point Likert-style scale (0 = not at all a problem; 2 = sometimes a problem; 4 = a lot of a problem). Items are reversed-scored and converted to a 100-point scale (0 = 100, 1 = 75, 2 = 50, 3 = 25, 4 = 0) with higher scores indicating better quality of life. Scores for individual subscales are the sum of items divided by the total number or items answered. The total score for the PedsQL™ Sickle Cell Disease Module is the sum of the items divided by the number of items answered.

The PedsQL™ Sickle Cell Disease Module is a proprietary instrument and administration requires permission and a license from the MAPI Research Trust.

Personnel and Training Required

None

Equipment Needs

None

Requirements

Requirement CategoryRequired
Average time of greater than 15 minutes in an unaffected individualNo
Major equipmentNo
Specialized requirements for biospecimen collectionNo
Specialized trainingNo

Mode of Administration

Self-administered

Life Stage:

Toddler, Child, Adolescent

Specific Instructions:

The PedsQL™ Sickle Cell Disease Module is a proprietary instrument and administration requires permission and a license from the MAPI Research Trust.

Research Domain Information

Release Date:

July 30, 2015

Definition

A questionnaire to assess the physical, emotional, and social impact of chronic conditions, such as sickle cell disease (SCD).

Purpose

This measure can be used to track health status and treatment outcomes and understand the health care requirements of patients with chronic conditions, such as sickle cell disease (SCD).

Selection Rationale

The PedsQL™ Sickle Cell Disease Module is a brief, valid, reliable self- or proxy-administered questionnaire that captures health-related quality of life (HRQOL) in pediatric patients with sickle cell disease.

Language

English

Standards

StandardNameIDSource
Common Data Elements (CDE)Sickle Cell Disease Child Quality of Life Questionnaire Assessment Scale4922445CDE Browser

Process and Review

This section will be completed when reviewed by an Expert Review Panel.

Source

Panepinto, J. A., Torres, S., & Varni, J. W. (2012). Development of the PedsQL™ Sickle Cell Disease Module items: Qualitative methods. Quality of Life Research, 21(2), 341-57.

The PedsQL™ Sickle Cell Disease Module is a proprietary instrument and administration requires permission and a license from the MAPI Research Trust.

PROinformation@mapi-trust.org
Information Resources Centre
Mapi Research Trust
27, rue de la Villette
69003 Lyon
France

General References

Panepinto, J. A., Torres, S., Bendo, C. B., McCavit, T. L., Dinu, B., Sherman-Bien, S. & Varni, J. W. (2014). PedsQL™ Multidimensional Fatigue Scale in sickle cell disease: Feasibility, reliability, and validity. Pediatric Blood & Cancer, 61(1), 171-177.

Panepinto, J.A., Torres, S., Bendo, C.B., McCavit, T.L., Dinu, B., Sherman-Bien, S. & Varni, J.W. (2013). PedsQL™ Sickle Cell Disease Module: Feasibility, reliability, and validity. Pediatric Blood & Cancer, 60(8), 1338-1344.

Varni, J. W., Seid, M., & Rode, C. A. (1999). The PedsQL™: Measurement model for the pediatric quality of life inventory. Medical Care, 37(2), 126-139.

Protocol ID:

820202

Variables:

Export Variables
Variable NameVariable IDVariable DescriptionVersiondbGaP Mapping
PX820202000000Protocol 820202 - proprietary. Check DCW for contact.4N/A