Protocol - PedsQL Sickle Cell Disease Module
- Emotional Distress
- General Well-being
- Impairment - Adolescent
- Impairment - Adult
- Physical, Social, and Mental Health Functioning (SF-36V2)
- Quality of Life - Adult
- Quality of Life - Pediatric
- Quality of Life as Affected by Respiratory Disease
- Quality of Life Enjoyment and Satisfaction - Adult
- Quality of Life Enjoyment and Satisfaction - Children
- Recovery and Recurrence Questionnaire (RRQ) - Pediatrics
- Stroke Impact Scale (SIS) - Adults
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.
Availability
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 Category | Required |
---|---|
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
Standard | Name | ID | Source |
---|---|---|---|
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 VariablesVariable Name | Variable ID | Variable Description | dbGaP Mapping | |
---|---|---|---|---|
PX820202000000 | Protocol 820202 - proprietary. Check DCW for more | N/A |
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.