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Protocol - PedsQL Sickle Cell Disease Module

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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.

Specific Instructions

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

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.

Availability

Limited Availability

Personnel and Training Required

None

Equipment Needs

None

Requirements
Requirement CategoryRequired
Major equipment No
Specialized training No
Specialized requirements for biospecimen collection No
Average time of greater than 15 minutes in an unaffected individual No
Mode of Administration

Self- or proxy-administered questionnaire

Lifestage

Toddler, Child, Adolescent

Participants

Children and adolescents ages 2 to 18

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
caDSR Common Data Elements (CDE) Sickle Cell Disease Child Quality of Life Questionnaire Assessment Scale 4922445 CDE Browser
Human Phenotype Ontology Sickle Cell Anemia ORPHA:232 HPO
Human Phenotype Ontology Anemia OMIM:603903 HPO
Derived Variables

None

Process and Review

Not applicable.

Protocol Name from Source

The PedsQL Sickle Cell Disease Module

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 Name Variable IDVariable DescriptiondbGaP Mapping
PX820202000000 Protocol 820202 - proprietary. Check DCW for more
contact. show less
N/A
Blood Sciences Research
Measure Name

Quality of Life in Sickle Cell Disease

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).

Keywords

Sickle cell disease, SCD, quality of life, Adult Sickle Cell Quality of Life Measurement Information System, ASCQ-Me, PedsQL, pain, sleep, distress, stiffness, emotion, social, "Neurology, Quality of Life, and Health Services"

Measure Protocols
Protocol ID Protocol Name
820201 Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me)
820202 PedsQL Sickle Cell Disease Module
Publications

There are no publications listed for this protocol.