Important factors to consider when treating children with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): perspectives of health professionals from specialist services.

Abstract

BackgroundPaediatric 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.MethodsFocus 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.ResultsAll 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.ConclusionsClinically 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.

Participation of children with disabilities in school: A realist systematic review of psychosocial and environmental factors

“…The mechanisms related to skills identified as important for participation were organisation and planning (e.g. sequencing, concentration and memory) [35, 46, 49, 51, 52, 55, 56, 63, 70, 72, 74]; communication/social skills [14, 15, 42, 49, 51–53, 67, 72, 74] and motor skills [8, 14, 49, 51, 52, 55, 58, 70–72, 74–80].…”

“…Identified mechanisms were concerned with experiences related to symptoms. These were: pain (especially cognitions and catastrophizing) [8, 14, 52, 71, 75, 79, 81–83]; fatigue, including lowered energy, tiredness, and sleep disturbance[14, 46, 58, 71, 80, 84–86]; anxiety and its consequences including fear, frustration, and anger [46, 51, 53, 58, 60, 71, 80, 87–89], and low mood, sadness or depression [13, 52, 71, 80, 81, 84, 89].…”

“…Facilitative aspects were described as being tailored to the child, responsive to needs, individualized, and child led [10, 15, 17, 21, 24, 42–44, 49, 52, 54, 57, 58, 62–65, 67–70, 80, 90–94, 96]. Facilitative structures/organization were also described as adaptable and flexible [10, 14, 36, 44, 52, 64, 65, 68, 69, 80, 96, 97, 98], predictable [44] and well-planned [10, 68, 69, 93, 96, 98]. The most common constraint to participation identified was lack of individualization [15, 20, 42, 44, 49, 53, 57, 58, 65, 66, 69, 71, 72, 80, 91, 97, 98].…”

“…Facilitative structures/organization were also described as adaptable and flexible [10, 14, 36, 44, 52, 64, 65, 68, 69, 80, 96, 97, 98], predictable [44] and well-planned [10, 68, 69, 93, 96, 98]. The most common constraint to participation identified was lack of individualization [15, 20, 42, 44, 49, 53, 57, 58, 65, 66, 69, 71, 72, 80, 91, 97, 98]. Other identified constraints included rigid routines [10, 14, 67, 80, 84, 92, 93, 97, 98] or routines which were unpredictable or disordered [70, 72].…”

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

“…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).…”