BMC Pediatr. 2017 Feb 1;17(1):43. doi: 10.1186/s12887-017-0799-7.
Important factors to consider when treating children with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): perspectives of health professionals from specialist services.
Parslow RM1, Shaw A2, Haywood KL3, Crawley E4.
Author information:
BACKGROUND:
Paediatric Chronic Fatigue Syndrome (CFS)/Myalgic Encephalomyelitis (ME) is relatively common and disabling. Improving treatment requires the development of Patient Reported Outcome Measures (PROMs) that enable clinicians and researchers to collect patient-centred evidence on outcomes. Health professionals are well placed to provide clinical insight into the condition, its treatment and possible outcomes. This study aimed to understand the perspectives of specialist paediatric CFS/ME health professionals and identify outcomes that are clinically important.
METHODS:
Focus groups and interviews were held with 15 health professionals involved in the care of children with CFS/ME from the four largest specialist paediatric CFS/ME services in the NHS in England. A range of clinical disciplines were included and experience in paediatric CFS/ME ranged from 2 months to 25 years. Ten participants (67%) were female. Focus groups and interviews were recorded, transcribed verbatim and data were analysed using thematic analysis.
RESULTS:
All health professionals identified the impact of CFS/ME across multiple aspects of health. Health professionals described four areas used to assess the severity of the illness and outcome in children: 1) symptoms; 2) physical function; 3) participation (school, activities and social life); and 4) emotional wellbeing. They also described the complexity of the condition, contextual factors and considerations for treatment to help children to cope with the condition.
CONCLUSIONS:
Clinically important outcomes in paediatric CFS/ME involve a range of aspects of health. Health professionals consider increases in physical function yet maintaining school functioning and participation more widely as important outcomes from treatment. The results are similar to those described by children in a recent study and will be combined to develop a new child-specific PROM that has strong clinical utility and patient relevance.
Open access to full paper;
http://bmcpediatr.biomedcentral.com/articles/10.1186/s12887-017-0799-7
Important factors to consider when treating children with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): perspectives of health professionals from specialist services.
Parslow RM1, Shaw A2, Haywood KL3, Crawley E4.
Author information:
- 1Centre for Child and Adolescent Health, School of Social & Community Medicine, University of Bristol, Barley House, Oakfield Grove, Bristol, BS8 2BN, UK. roxanne.parslow@bristol.ac.uk.
- 2Centre for Primary Care Research, School of Social & Community Medicine, University of Bristol, Canynge Hall, Bristol, BS8 2PS, UK.
- 3Royal College of Nursing Research Institute, School of Health and Social Studies, University of Warwick, Coventry, CV4 7AL, UK.
- 4Centre for Child and Adolescent Health, School of Social & Community Medicine, University of Bristol, Barley House, Oakfield Grove, Bristol, BS8 2BN, UK.
BACKGROUND:
Paediatric Chronic Fatigue Syndrome (CFS)/Myalgic Encephalomyelitis (ME) is relatively common and disabling. Improving treatment requires the development of Patient Reported Outcome Measures (PROMs) that enable clinicians and researchers to collect patient-centred evidence on outcomes. Health professionals are well placed to provide clinical insight into the condition, its treatment and possible outcomes. This study aimed to understand the perspectives of specialist paediatric CFS/ME health professionals and identify outcomes that are clinically important.
METHODS:
Focus groups and interviews were held with 15 health professionals involved in the care of children with CFS/ME from the four largest specialist paediatric CFS/ME services in the NHS in England. A range of clinical disciplines were included and experience in paediatric CFS/ME ranged from 2 months to 25 years. Ten participants (67%) were female. Focus groups and interviews were recorded, transcribed verbatim and data were analysed using thematic analysis.
RESULTS:
All health professionals identified the impact of CFS/ME across multiple aspects of health. Health professionals described four areas used to assess the severity of the illness and outcome in children: 1) symptoms; 2) physical function; 3) participation (school, activities and social life); and 4) emotional wellbeing. They also described the complexity of the condition, contextual factors and considerations for treatment to help children to cope with the condition.
CONCLUSIONS:
Clinically important outcomes in paediatric CFS/ME involve a range of aspects of health. Health professionals consider increases in physical function yet maintaining school functioning and participation more widely as important outcomes from treatment. The results are similar to those described by children in a recent study and will be combined to develop a new child-specific PROM that has strong clinical utility and patient relevance.
Open access to full paper;
http://bmcpediatr.biomedcentral.com/articles/10.1186/s12887-017-0799-7