Review Assessing severity of illness and outcomes of treatment in children with CFS/ME..., 2014, Haywood, Colin, Crawley

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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)

K L Haywood 1, S M Collin, E Crawley

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.

https://onlinelibrary.wiley.com/doi/10.1111/cch.12135
 
However, an earlier review of PROMs used in adults and children with CFS/ME completed in 2006 (Haywood et al. 2007), included just one child-specific measure – the Kidcope (Spirito et al. 1988). The Kidcope is a checklist designed to assess cognitive, emotional and social coping strategies in children and adolescents. However, excessive visual, manual and time demands for Kidcope completion were reported, raising concerns over its potential inappropriateness for children with CFS/ME.
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In the intervening years interest in capturing the patients' perspective in healthcare evaluation has continued to grow, fuelled in part by guidance to improve the quality of PROMs used to support medical product labelling claims (Patrick et al. 2007; USFDA 2009), the use of PROMs in the assessment of healthcare quality (Fitzpatrick 2009; Devlin & Appleby 2010), and the potential contribution of PROMs to enhance communication between patients and health professionals in routine practice (Haywood et al. 2006a; Snyder et al. 2012). However, guidance for the selection of relevant and appropriate PROMs for children with CFS/ME still does not exist. This review evaluates the quality and acceptability of PROMs used in studies of children with CFS/ME to provide timely and necessary guidance for PROM selection in research, clinical practice and service evaluation.
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On the basis of title and abstract assessments 82 articles were retrieved and reviewed in full. A further three articles were identified from reference searching of included articles. As reported in other reviews (Haywood et al. 2012), it was often difficult to define specific measures because of inadequate descriptions of assessment method or lack of citation.
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A total of 16 articles were included in the review (Fig. 1), providing generally limited evidence of reliability and/or validity for 13 clearly defined PROMs (Tables 1-5). Of these PROMs,
six were child-specific:

one generic measure of children's health-related quality-of-life [Child Health Questionnaire (Landgraf et al. 1998)];

four specific to aspects of emotional well-being –
Children's Depression Inventory (CDI) (Kovacs 1985),
Children's Somatization Inventory (CSI) (Walker et al. 1991),
Spence Childhood Anxiety Scale (SCAS) (Spence 1998) and
State-Trait Anxiety Scale for Children (STAS-C) (Papay & Spielberger 1986);

and one measure of social adjustment, modified for use with younger people – Social Adjustment Scale – Younger People (SAS-YP) (Mundt et al. 2002; Cella et al. 2011; Lloyd et al. 2012) (Table 1).

Seven PROMs were not child-specific. Of these, six were domain-specific:

three assessed aspects of emotional well-being –
Beck Depression Inventory (BDI) (Beck et al. 1961),
Birleson Feelings Scale (BFS) (Birleson et al. 1987),
Strengths and Difficulties Questionnaire (SDQ) (Goodman 1997);

and three were fatigue-specific –
Chalder Fatigue Scale (CFS) (Chalder et al. 1993),
the Checklist for Individual Strength (CIS-20) (Vercoulen et al. 1994),
Fatigue Severity Scale (FSS) (Krupp et al. 1989).

One generic measure of health status was reviewed –
Short Form 36-item Health Survey (SF-36) (Ware et al. 2001) (Table 1).

No CFS/ME-specific measure was included in the review. No comparative evaluations or additional reviews of measures were identified. Unless stated, all reviewed PROMs were self-completed by children.
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(formatting mine)
 
Don’t/ didn’t they re-diagnose with Pervasive Refusal Syndrome (which sounds more like severe ME/CFS / proper me/cfs with PEM and sleep reversal than their cfs interpretation at the time and seemed to be a diagnosis only used by them) or maybe other mental health conditions some of those who ‘didn’t comply’/ ‘were treatment resistant’ or whatever the term aiding cognitive dissonance was

which would be an issue in cutting short the spectrum rather?
 
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