COSMIN database

Assessing severity of illness and outcomes of treatment in children with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME): a systematic review of patient-reported outcome measures (PROMs)

Authors:
Haywood, K. L., Collin, S. M., and Crawley, E.
Abstract:
Chronic Fatigue Syndrome or Myalgic Encephalomyelitis (CFS/ME) in children is characterized by persistent or recurrent debilitating fatigue which results in a substantial reduction in activity. There is a growing interest in the use of questionnaires, or patient-reported outcome measures (PROMs), to assess how patients function and feel in relation to their health and associated healthcare. However, guidance for PROM selection for children with CFS/ME does not exist. We reviewed the quality and acceptability of PROMs used with children with CFS/ME to inform recommendations for practice. We conducted a systematic review of PROMs completed by children with CFS/ME. The quality of the evaluative studies and the reviewed measures were assessed against recommended criteria using an appraisal framework and the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) checklist. We sought evidence of measurement (reliability, validity, responsiveness, interpretability, data quality) and practical properties (acceptability, relevance, feasibility). Sixteen articles were included in the review, providing evidence of reliability and/or validity for 13 PROMs. Of these, five were child-specific (one health-related quality-of-life; four emotional well-being) and eight were not (four emotional well-being, three fatigue-specific; and one generic). All measures had limited evidence of measurement properties and no evidence of practical properties. Recommendations for patient-reported assessment are difficult to make because of limited evidence of the quality and acceptability of PROMs for children with CFS/ME. The appraisal method highlighted significant methodological and quality issues which must be addressed in future research. There is a lack of qualitative evidence describing the outcomes of healthcare that are important to children with CFS/ME, and the relevance or appropriateness of available measures. Future PROM development and evaluation in this group must seek to involve children collaboratively to ensure that the outcomes that children care about are assessed in an acceptable way.
DOI:
10.1111/cch.12135
URL:
https://www.ncbi.nlm.nih.gov/pubmed/24661148
Journal:
Child Care Health Dev
issn:
1365-2214 (Electronic)
Publication year:
2014
pages:
806-24
Symptom status:
Cognitive/mental state
Physical state
Functional status:
Cognitive/mental functioning
Physical functioning
Social functioning
General health perceptions / HRQoL:
Health-related quality of life
Age:
Children (0-18)
Disease:
Diseases of and symptoms related to the blood and blood-forming organs and certain disorders involving the immune mechanism
Diseases of and symptoms related to the musculoskeletal system and connective tissue
Diseases of and symptoms related to the nervous system
PRO / non-PRO:
Patient Reported Outcome
Type of measurement instrument:
1 - Questionnaires
Instrument:
BDI - Beck Depression Inventory   [see: ZUYD (NL)]
BFS - Birleson Feelings Scale [alias: BFQ - Birleson Feelings Questionnaire]
CDI - Children's Depression Inventory
CFS - Chalder Fatigue Scale [alias: FQ - Fatigue Questionnaire][alias: FRS - Fatigue Rating Scale]
CHQ-CF87 - Child Health Questionnaire-Child Form 87
CHQ - Child Health Questionnaire
CIS-20 - Checklist for Individual Strength-20 item
CSI-35 - Children’s Somatization Inventory
FSS - Fatigue Severity Scale
SAS - Social Adjustment Scale – Young People
SCAS - Spence Children’s Anxiety Scale
SDQ - Strength and Difficulties Questionnaire
SF-36 - 36-item Short Form Health Survey [alias: RAND-36][alias: Medical Outcomes Study (MOS) SF-36]]   [see: proqolid, ZUYD (NL), also see: https://database.cosmin.nl/?utf8=%E2%9C%93&search_field=all_fields&q=SF-36+-+36-item+Short+Form+Health+Survey++%5Balias%3A+RAND-36%5D%5Balias%3A+Medical+Outcomes+Study+%28MOS%29+SF-36%5D%5D]
STAIC - State Trait Anxiety Inventory for Children
STAS-C - State-Trait Anxiety Scale for Children