Dataset Information

Paediatric chronic fatigue syndrome patients' and parents' perceptions of recovery.

ABSTRACT: Objectives:Chronic 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. Methods:Children 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. Results:Twenty-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. Conclusion:Some 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.

SUBMITTER: Harland MR

PROVIDER: S-EPMC7245384 | biostudies-literature | 2019

REPOSITORIES: biostudies-literature

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Paediatric chronic fatigue syndrome patients' and parents' perceptions of recovery.

Harland Matthew Robert MR Parslow Roxanne Morin RM Anderson Nina N Byrne Danielle D Crawley Esther E

BMJ paediatrics open 20191202 1

<h4>Objectives</h4>Chronic 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.<h4>Methods</h4>Children 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 i ...[more]

PMID: 32500105

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Project description:BackgroundChronic fatigue syndrome (CFS) is a debilitating illness with particular difficulties for healthcare providers because there are no diagnostic signs or laboratory tests and because management aims to merely improve symptoms. Further complicating management, healthcare providers' awareness concerning CFS has not been rigorously assessed. The present study aimed to ascertain United States (U.S.) healthcare providers' awareness of CFS and to assess their knowledge, attitudes, and beliefs (KAB) related to diagnosis and management of the illness. This information forms the foundation for developing CFS educational strategies.MethodsWe combined convenience and probability samples to measure CFS KAB among healthcare providers. In the convenience sample, 1,255 healthcare providers (81% response rate) from 13 professional conferences completed a 12-item form. Descriptive statistics were reported for 9 KAB item responses and chi-square tests were performed for examining their association with giving a diagnosis of CFS. We used principal component analysis to construct multidimensional subscales and perform a general linear model to examine factors associated with subscales. The probability sample involved data on 15 CFS-specific questions from 2006 and 2007 DocStyles web-based panel surveys collected from 2,750 physicians (average response rate 55%). We calculated descriptive and chi-square statistics. The significance was set at two-tailed with the alpha level of 0.05.ResultsHealthcare providers in both samples were aware of CFS and exhibited a high level of knowledge. Overall, 96% of respondents in the DocStyles (probability) sample had heard about CFS. Healthcare providers in the conference (convenience) sample demonstrated good KAB scores; physicians' scores were highest on KAB scales and lowest in perception. Nurses' scores were lowest in knowledge. More than 40% of physicians reported ever giving a CFS diagnosis and in the DocStyles (probability) sample more than 80% of physicians correctly identified CFS symptoms. Physicians reported professional journals, the Internet, and continuing education programs as the top 3 sources from which they obtain CFS information.ConclusionsFindings from these combined samples fill a gap in the evidence-base of U.S. healthcare providers' and knowledge, attitudes, and beliefs concerning CFS. Importantly, respondents in both samples expressed similar knowledge, attitudes, beliefs and perceptions. Awareness was high and negative attitudes were low. The primary areas for future education should address diagnosis and management of CFS and should be delivered through those venues providers indicated they primarily use. Data from this study provide a benchmark for evaluation the success of these future efforts.

Project description:Background and Objectives: Post-exertional malaise (PEM) is the hallmark of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), but there has been little effort to quantitate the duration of PEM symptoms following a known exertional stressor. Using a Symptom Severity Scale (SSS) that includes nine common symptoms of ME/CFS, we sought to characterize the duration and severity of PEM symptoms following two cardiopulmonary exercise tests separated by 24 h (2-day CPET). Materials and Methods: Eighty persons with ME/CFS and 64 controls (CTL) underwent a 2-day CPET. ME/CFS subjects met the Canadian Clinical Criteria for diagnosis of ME/CFS; controls were healthy but not participating in regular physical activity. All subjects who met maximal effort criteria on both CPETs were included. SSS scores were obtained at baseline, immediately prior to both CPETs, the day after the second CPET, and every two days after the CPET-1 for 10 days. Results: There was a highly significant difference in judged recovery time (ME/CFS = 12.7 ± 1.2 d; CTL = 2.1 ± 0.2 d, mean ± s.e.m., Chi2 = 90.1, p < 0.0001). The range of ME/CFS patient recovery was 1-64 days, while the range in CTL was 1-10 days; one subject with ME/CFS had not recovered after one year and was not included in the analysis. Less than 10% of subjects with ME/CFS took more than three weeks to recover. There was no difference in recovery time based on the level of pre-test symptoms prior to CPET-1 (F = 1.12, p = 0.33). Mean SSS scores at baseline were significantly higher than at pre-CPET-1 (5.70 ± 0.16 vs. 4.02 ± 0.18, p < 0.0001). Pharmacokinetic models showed an extremely prolonged decay of the PEM response (Chi2 > 22, p < 0.0001) to the 2-day CPET. Conclusions: ME/CFS subjects took an average of about two weeks to recover from a 2-day CPET, whereas sedentary controls needed only two days. These data quantitate the prolonged recovery time in ME/CFS and improve the ability to obtain well-informed consent prior to doing exercise testing in persons with ME/CFS. Quantitative monitoring of PEM symptoms may provide a method to help manage PEM.

Dataset Information

Paediatric chronic fatigue syndrome patients' and parents' perceptions of recovery.

Publications

Paediatric chronic fatigue syndrome patients' and parents' perceptions of recovery.

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