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“It feels like wearing a giant sandbag.” Adolescent and parent perceptions of fatigue in paediatric multiple sclerosis

      Highlights

      • Fatigue is a highly disruptive symptom for caMS and parents.
      • Parents and caMS experience fatigue as an uncertain, uncontrollable symptom.
      • Fatigue evokes concern in parents for caMS' well-being and future.
      • CaMS highlight the implications of disclosure or non-disclosure of fatigue.
      • Implementing fatigue management strategies in clinical practice is imperative.

      Abstract

      Aim

      Fatigue is one of the most common and disabling symptoms of paediatric MS, associated with depressed mood, impaired school performance and lower quality of life. Fatigue in children and adolescents with MS (caMS) is poorly understood, and effective treatments for fatigue are currently lacking. No qualitative studies have previously examined fatigue in caMS. Thus, the objectives were (a) to explore experiences of fatigue in paediatric MS and (b) to gain insight into how caMS and their parents respond to and manage fatigue.

      Methods

      In-depth semi-structured qualitative interviews were conducted with 15 caMS and 13 of their parents, either face-to-face or via telephone. Inductive thematic analysis was primarily used, incorporating elements of grounded theory.

      Results

      Five key themes were identified in the data. Participants described mentally and physically exhausting fatigue, which they perceived as uncertain and uncontrollable. Parents expressed concern about caMS' well-being and future because of fatigue, whilst caMS discussed the implications of disclosure or non-disclosure of fatigue to peers and teachers. An additional overarching theme addressed participants' emotional responses to fatigue. Participants stressed the need for better guidance on fatigue management.

      Interpretation

      This study provides a unique insight into the experience and management of fatigue in paediatric MS from the perspective of both caMS and parents. Some findings echoed experiences of fatigue in other populations, whilst new factors in paediatric MS also emerged. Fatigue management interventions involving caMS, parents and teachers should be developed and implemented in clinical practice.

      Keywords

      Abbreviations:

      caMS (children and adolescents with MS), CFS (Chronic Fatigue Syndrome), MS (multiple sclerosis)
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      References

        • Absoud M.
        • Lim M.
        • Chong W.K.
        • et al.
        Paediatric acquired demyelinating syndromes: incidence, clinical and magnetic resonance imaging features.
        Mult Scler. 2013; 19: 76-86
        • Compston A.
        • Coles A.
        Multiple sclerosis.
        Lancet. 2008; 372: 1502-1517
        • MacAllister W.S.
        • Christodoulou C.
        • Milazzo M.
        • et al.
        Paediatric multiple sclerosis: what we know and where are we headed?.
        Child Neuropsychol. 2013; 19: 1-22
        • Goretti B.
        • Portaccio B.
        • Ghezzi A.
        • et al.
        Fatigue and its relationships with cognitive functioning and depression in paediatric multiple sclerosis.
        Mult Scler. 2012; 18: 329-334
        • Carroll S.
        • Chalder T.
        • Hemingway C.
        • Heyman I.
        • Moss-Morris R.
        Understanding fatigue in paediatric multiple sclerosis: a systematic review of clinical and psychosocial factors.
        Dev Med Child Neurol. 2016; 58: 229-239
        • Braley T.J.
        • Chervin R.D.
        Fatigue in multiple sclerosis: mechanisms, evaluation, and treatment.
        Sleep. 2010; 33: 1061-1067
        • van Kessel K.
        • Moss-Morris R.
        Understanding multiple sclerosis fatigue: a synthesis of biological and psychological factors.
        J Psychosom Res. 2006; 61: 583-585
        • Knoop H.
        • van Kessel K.
        • Moss-Morris R.
        Which cognitions and behaviours mediate the positive effect of cognitive behavioural therapy on fatigue in patients with multiple sclerosis?.
        Psychol Med. 2012; 42: 205-213
        • Jopson N.M.
        • Moss-Morris R.
        The role of illness severity and illness representations in adjusting to multiple sclerosis.
        J Psychosom Res. 2003; 54: 503-511
        • Skerrett T.N.
        • Moss-Morris R.
        Fatigue and social impairment in multiple sclerosis: the role of patients' cognitive and behavioral responses to their symptoms.
        J Psychosom Res. 2006; 61: 587-593
        • Lievesley K.
        • Rimes K.A.
        • Chalder T.
        A review of the predisposing, precipitating and perpetuating factors in Chronic Fatigue Syndrome in children and adolescents.
        Clin Psychol Rev. 2014; 34: 233-248
        • Knight S.J.
        • Scheinberg A.
        • Harvey A.R.
        Interventions in paediatric chronic fatigue syndrome/myalgic encephalomyelitis: a systematic review.
        J Adolesc Health. 2013; 53: 154-165
        • Moss-Morris R.
        • McCrone P.
        • Yardley L.
        • van Kessel K.
        • Wills G.
        • Dennison L.
        A pilot randomised controlled trial of an Internet-based cognitive behavioural therapy self-management programme (MS Invigor8) for multiple sclerosis fatigue.
        Behav Res Ther. 2012; 50: 415-421
        • van Kessel K.
        • Moss-Morris R.
        • Willoughby E.
        • Chalder T.
        • Johnson M.H.
        • Robinson E.
        A randomized controlled trial of cognitive behavior therapy for multiple sclerosis fatigue.
        Psychosom Med. 2008; 70: 205-213
        • Knoop H.
        • Stulemeijer M.
        • de Jong L.W.A.M.
        • Fiselier T.J.W.
        • Bleijenberg G.
        Efficacy of cognitive behavioral therapy for adolescents with chronic fatigue syndrome: long-term follow-up of a randomized controlled trial.
        Pediatrics. 2008; 121: e619-e625
        • Ketelslegers I.A.
        • Catsman-Berrevoets C.E.
        • Boon M.
        • et al.
        Fatigue and depression in children with multiple sclerosis and monophasic variants.
        Eur J Paediatr Neurol. 2010; 14: 320-325
        • MacAllister W.S.
        • Christodoulou C.
        • Troxell R.
        • et al.
        Fatigue and quality of life in pediatric multiple sclerosis.
        Mult Scler. 2009; 15: 1502-1508
        • Rimes K.A.
        • Goodman R.
        • Hotopf M.
        • Wessely S.
        • Meltzer H.
        • Chalder T.
        Incidence, prognosis, and risk factors for fatigue and chronic fatigue syndrome in adolescents: a prospective community study.
        Paediatrics. 2007; 119: 603-609
        • Collin S.M.
        • Tilling K.
        • Joinson C.
        • et al.
        Maternal and childhood psychological factors predict chronic disabling fatigue at age 13 years.
        J Adolesc Health. 2015; 56: 181-187
        • Mason M.
        Sample size and saturation in PhD studies using qualitative interviews.
        Forum Qual Sozialforschung/Forum Qual Soc Res. 2010; 11
        • Braun V.
        • Clarke V.
        Using thematic analysis in psychology.
        Qual Res Psychol. 2006; 3: 77-101
        • Glaser B.G.
        • Strauss A.L.
        The discovery of grounded theory: strategies for qualitative research.
        Transaction Publishers, 2009
        • Chalder T.
        • Deary V.
        • Husain K.
        • Walwyn R.
        Family-focused cognitive behaviour therapy versus psycho-education for chronic fatigue syndrome in 11-to 18-year-olds: a randomized controlled treatment trial.
        Psychol Med. 2010; 40: 1269-1279
        • Stulemeijer M.
        • de Jong L.W.
        • Fiselier T.J.
        • Hoogveld S.W.
        • Bleijenberg G.
        Cognitive behaviour therapy for adolescents with chronic fatigue syndrome: randomised controlled trial.
        BMJ. 2004; 330: 14