What matters to children with CFS/ME? A conceptual model as the first stage in developing a PROM

Parslow, Roxanne; Patel, Aarti; Beasant, Lucy; Haywood, Kirstie L.; Johnson, Debbie; Crawley, Esther

doi:10.1136/archdischild-2015-308831

Cited by 36 publications

(55 citation statements)

References 42 publications

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“…It is difficult to define recovery in CFS/ME as the condition affects multiple dimensions including symptoms, physical activity, social participation (including school) and emotional well-being 10. Improvements can be therefore be measured in physical, psychosocial functioning and daily activities, making it problematic to define recovery in terms of either symptoms or function 11 12.…”

Section: Introductionmentioning

confidence: 99%

Paediatric chronic fatigue syndrome patients’ and parents’ perceptions of recovery

Harland

Parslow

Anderson

et al. 2019

bmjpo

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ObjectivesChronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is common in children and adolescents; however, little is known about how we should define recovery. This study aims to explore perceptions of recovery held by paediatric patients with CFS/ME and their parents.MethodsChildren with CFS/ME and their parents were recruited through a single specialist paediatric CFS/ME service. Data were collected through semistructured interviews with children and parents. The interview questions explored how participants would know if they/their child had recovered from CFS/ME. Thematic analysis was used to identify patterns within the data.ResultsTwenty-one children with CFS/ME, twenty mothers and two fathers were interviewed. Some children found it hard to define recovery as the illness had become a ‘new normal’. Others thought recovery would indicate returning to pre-morbid levels of activity or achieving the same activity level as peers (socialising, education and leisure activities). Increased flexibility in routines and the absence of payback after activities were important. The interviews highlighted the concept of recovery as highly individual with wide variation in symptoms experienced, type and level of activity that would signify recovery. Parents describe how changes in mood and motivation would signify their child’s recovery, but children did not reflect on this.ConclusionSome parents and children struggle to define what would constitute complete recovery. However, signs of recovery were more easily identifiable. Definitions of recovery went far beyond symptom reduction and were focused towards rebuilding lives.

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Section: Introductionmentioning

confidence: 99%

Paediatric chronic fatigue syndrome patients’ and parents’ perceptions of recovery

Harland

Parslow

Anderson

et al. 2019

bmjpo

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“…The positive association between teacher follow-up and emotional functioning may be associated with prevention of depressive symptoms. The importance of meeting in small groups with peers, and cooperation between health care professionals and schools is earlier also described as helpful [32].…”

Section: Discussionmentioning

confidence: 99%

“…According to an earlier finding of no statistical evidence between depressive symptoms and low HRQoL in adolescents with CFS/ME [16], and that there is a lack of depression found in diagnostic evaluation of the patient group, it is tempting to assume that depressive symptoms may develope as result of living with CFS/ME. Adolescents with CFS/ME are not able to do the things they want to, and they suffer from loss, disruption and coping barriers [1,31,32,37]. Living with CFS/ME in adolescense require that the surroundings are aware and supportive in order to give the adolescents a potential to prevent depressive symptoms and gain hopes of an active and productive future [1].…”

Section: Discussionmentioning

confidence: 99%

Health-related quality of life in adolescents with CFS/ME, a cross-sectional population based Norwegian study.

Similä¹,

Halsteinli²,

Helland³

et al. 2020

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Purpose The primary aim was to measure health related quality of life (HRQoL) in a Norwegian cohort of adolescents with Chronic Fatigue Syndrome (CFS/ME). A secondary aim was to identify factors initial to diagnosis, at time of diagnosis and at follow-up that were associated with HRQoL. Methods In this cross-sectional population-based study, HRQoL was measured by PedsQL Generic Core scale (PedsQL4.0) in 63 adolescents with CFS/ME. In addition, fatigue was measured by PedsQL Multidimentional Fatigue scale (PedsQL-MFS), depressive symptoms were measured by the Short Mood and Feelings Questionnaire (SMFQ), and disruption in school activities was measured by The De Paul Pediatric Health Questionnaire (DPHQ-N). Data were also collected from patient journals and patient interviews.Results Age at diagnosis was 15 (2) years (mean (SD)), and four out of five participants were female. Time from diagnosis to reply was 39 (22) months. Adolescents with CFS/ME reported PedsQL4.0 score 50 (17), and boys reported a better score than girls (64 vs 47, CI (-27;-6)). There were positive associations between overall HRQoL and follow-up by school teacher, school attendance or participation in leisure activities. There were negative associations between overall HRQoL and delayed school progression, having been to rehabilitation stay and depressive symptoms.Conclusion HRQoL in adolescents diagnosed with CFS/ME was low compared to healthy adolescents. The associations between HRQoL, healthcare provided, teacher follow-up, school attendance and participation in leisure activity may provide information of value when developing refined strategies for follow-up of adolescents with CFS/ME. Possible causal relationships must however be explored in future longitudinal studies.

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“…The semi structured topic guide was developed with a Young Person's Advisory Group (YPAG) [29] who felt card ranking (already used in school) would allow children to prioritise the most important HRQoL outcomes [26]. Important areas of life to children affected by CFS/ME were identified from previous qualitative work [24,30] and used to produce 'outcome cards' that could be ranked in order of importance within the interview (Table 1, Fig. 1).…”

Section: Methodsmentioning

confidence: 99%

“…Children have been recognised as "effective content experts" in PROM development [18]. Previous research with children with CFS/ME has produced a conceptual model of what it is like living with CFS/ME and broader contextual factors [24]. However, only outcomes that are most meaningful to patients should be included in a new HRQoL PROM [25].…”

Section: Introductionmentioning

confidence: 99%

Development of a conceptual framework to underpin a health-related quality of life outcome measure in paediatric chronic fatigue syndrome/myalgic encephalopathy (CFS/ME): prioritisation through card ranking

et al. 2020

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Purpose Chronic fatigue syndrome (CFS)/myalgic encephalopathy (ME) is relatively common in children and is disabling at an important time in their development. This study aimed to develop a conceptual framework of paediatric CFS/ME using the patient-perspective to ensure that the content of a new outcome measure includes the outcomes most important to young people. Methods We developed a child-centred interactive card ranking exercise that included health-related quality of life (HRQoL) outcomes identified from a previous review of the literature as well as qualitative work. Adolescents and their parents selected and ranked the outcomes most important to them and discussed each outcome in further detail. Adolescents were purposively sampled from a single specialist paediatric CFS/ME service in England. Interviews were audio recorded and transcribed verbatim, and thematic framework analysis was used to develop the final conceptual framework. Results We interviewed 43 participants in which there are 21 adolescents, 12-17 years of age with mild-moderate CFS/ ME and their parents (20 mothers and 2 fathers). 'Symptoms', 'tiredness', 'payback and crashing' and 'activities and hobbies' were ranked most important to improve by both children and parents. Children ranked 'school' higher than parents and parents ranked 'mood' higher than children. A youth-specific CFS/ME conceptual framework of HRQoL was produced that included 4 outcome domains and 11 subdomains: sleep, tiredness, problems concentrating, individual symptoms, fluctuation and payback, daily and general activities, participation in school, leisure and social life, mood, anxiety and self-esteem. Conclusions An interactive card ranking exercise worked well for adolescents aged 12-17 to elicit the most important outcomes to them and explore each domain in further detail. We developed a final conceptual framework of HRQoL that forms the basis of a new paediatric patient-reported outcome measure (PROM) in CFS/ME. Keywords Chronic fatigue syndrome/myalgic encephalopathy (CFS/ME) • Adolescents • Conceptual framework • Healthrelated quality of life (HRQoL) • Patient-reported outcome measure (PROM) • Qualitative

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What matters to children with CFS/ME? A conceptual model as the first stage in developing a PROM

Cited by 36 publications

References 42 publications

Paediatric chronic fatigue syndrome patients’ and parents’ perceptions of recovery

Paediatric chronic fatigue syndrome patients’ and parents’ perceptions of recovery

Health-related quality of life in adolescents with CFS/ME, a cross-sectional population based Norwegian study.

Development of a conceptual framework to underpin a health-related quality of life outcome measure in paediatric chronic fatigue syndrome/myalgic encephalopathy (CFS/ME): prioritisation through card ranking

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