Self-investigation in adolescent chronic fatigue syndrome: Narrative changes and health improvement

Geelen, Stefan M. van; Fuchs, Coralie E.; Sinnema, Gerben; Putte, Elise M. van de; Geel, Rolf van; Hermans, Hubert J. M.; Kuis, Wietse

doi:10.1016/j.pec.2010.05.023

Cited by 11 publications

(18 citation statements)

References 39 publications

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“…Nijhof and colleagues (2011a); 11. Nijhof and colleagues (); 12. ter Wolbeek and colleagues (); 13. van de Putte and colleagues (); 14. van de Putte and colleagues (); 15. van Geelen and colleagues (); 16. Stulemeijer and colleagues ().…”

Section: Resultsmentioning

confidence: 99%

“…A single study provided limited evidence of measurement responsiveness for several of the CHQ domains following completion by children who participated in ‘self‐confrontation methods’ interventions (van Geelen et al . ) (Table ). Additional evidence of measurement reliability, measurement error or validity was not identified.…”

Section: Resultsmentioning

confidence: 99%

“…; van Geelen et al . ; Nijhof et al . 2011b, 2012) (Table ), but there was limited evidence of responsiveness for both CIS‐Fatigue (Stulemeijer et al .…”

Section: Resultsmentioning

confidence: 99%

“…Two larger studies used only the Physical Functioning domain (Nijhof et al 2011b(Nijhof et al , 2012, and one used the General Health Perceptions domain (van de Putte et al 2007). A single study provided limited evidence of measurement responsiveness for several of the CHQ domains following completion by children who participated in 'selfconfrontation methods' interventions (van Geelen et al 2011) (Table 3). Additional evidence of measurement reliability, measurement error or validity was not identified.…”

Section: Non-child-specific (7)mentioning

confidence: 99%

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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)

Haywood

Collin

Crawley

2014

Child

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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.bs_bs_banner Child: care, health and development

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

“…; van Geelen et al . ; Nijhof et al . 2011b, 2012) (Table ), but there was limited evidence of responsiveness for both CIS‐Fatigue (Stulemeijer et al .…”

Section: Resultsmentioning

confidence: 99%

Section: Non-child-specific (7)mentioning

confidence: 99%

See 2 more Smart Citations

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)

Haywood

Collin

Crawley

2014

Child

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“…Furthermore, this self-experience is real and undeniable, and in this regard persons with CFS differ from other individuals (Van Geelen et al 2007). In line with Ene's approach, at present this self-experience is usually studied through an analysis of patients' narratives (Larun and Malterud 2007), and attempts are made to include patients' self-experience into the treatment of the syndrome (Van Geelen et al 2011). In this commentary, I argue that to effectively incorporate the phenomenological self-experience of patients into personcentered care for CFS-as Ene advocates-we need to establish a redefined form of self-management understood as management of the self .…”

mentioning

confidence: 99%

Redefining Self-Management as “Management of the Self”: A New Approach to Person-centered Care in Chronic Fatigue Syndrome

Geelen

2013

AJOB Neuroscience

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Getting Closer—Advancing the Study of Persons with Chronic Fatigue Syndrome: a Comment on Poeschla et al.

Geelen

2013

ann. behav. med.

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Self-investigation in adolescent chronic fatigue syndrome: Narrative changes and health improvement

Cited by 11 publications

References 39 publications

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)

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)

Redefining Self-Management as “Management of the Self”: A New Approach to Person-centered Care in Chronic Fatigue Syndrome

Getting Closer—Advancing the Study of Persons with Chronic Fatigue Syndrome: a Comment on Poeschla et al.

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