Recurrent musculoskeletal pain in paediatric cerebral palsy : Relations to mental health, health-related quality of life and participation
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Cerebral palsy (CP) is a disorder of movement and posture resulting from disturbances in the immature brain. Accompanying impairments including secondary musculoskeletal problems and mental health problems are common, and impairment is life-long. Thus, from a health care perspective, CP is an excellent model disease for asking what frames of reference should guide our understanding and evidence gathering about patient well-being, and what instruments should we use to assess these outcomes.
The overall aim of the study was to explore how recurrent musculoskeletal pain relates to mental health problems, Health Related Quality of Life (HRQL) and participation in children with CP.
In study A, children with CP 8-18 years old were recruited from the South-West of Norway (n=75) and from the gait laboratory at Oslo University Hospital (n=78). All levels of motor impairment were represented. Clinical assessment, interview (child and parents together), and completion of questionnaires (child and parents separately) were performed. The interviewer asked for any kind of recurrent pain. If present, pain characteristics were explored and followed by professional judgement whether recurrent pain probably was of musculoskeletal origin and related to CP (RMP). Characteristics of RMP were regarded as localisation to muscles and/or joints, occurrence during or after exercise and dull or aching quality. Mental health problems, HRQL and participation were assessed by questionnaires (Strengths and Difficulties Questionnaire, Pediatric Quality of Life Inventory and Assessment of Life Habits respectively, in addition to General Health Questionnaire for parental mental health). In study B, children with CP 8-18 years (n=38) that started continuous intrathecal baclofen therapy (CITB) at Oslo University Hospital were assessed the day before implantation of a pump for baclofen delivery and after 6 and 18 months of treatment. Assessment consisted of clinical workup and parental interview. In cases of pain (33 children), this was assessed to be RMP before the child was accepted for CITB. Outcomes and explanatory variables throughout the study are discussed in relation to the ICF (International Classification of Function) that is WHO’s framework for measuring health and disability.
In study A, 95 children (62 %) experienced RMP. Age above 14 years was the only significant predictor (OR 2.7). Children reported pain severity to be moderate. Parents reported pain to be more severe and with higher impact on sleep than their children did. Children and parents reported similar impact of pain on general activity and walking.
Eighty-three pairs of children and mothers reported mental health problems and HRQL. Mothers in addition reported their own mental health. Self-reported mental health and HRQL were both better than proxy-reported. RMP was associated with more mental health problems and reduced HRQL in self-reports, but not in proxyreports. Mothers reported that more own mental problems were associated with more child mental problems and reduced child HRQL. Correlation (ICC) between mental health problems and psychosocial HRQL was 0.90 for both child and maternal report.
One hundred and five parents reported child participation. RMP and more mental health problems were both associated with reduced participation. More parental mental health problems were associated with reduced parental satisfaction with the child’s accomplishment of daily activities.
In study B, 35 children continued CITB for 18 months. Reduced pain and improved sleep occurred within 6 months of treatment. Social participation improved within 6 months and continued to improve until 18 months.
RMP is the main pain problem in paediatric CP. Systematic assessment of HRQL is suggested as a tool to broaden the scope of the consultation in (re)habilitation towards both pain and psychosocial issues. The child’s own perspectives on pain, mental health and HRQL should be recorded when possible in addition to that of the parents. The ICF concept of participation needs to be further clarified and operationalised; still the ICF reference frame is useful in both clinical work and research because of its comprehensiveness including the bio-psycho-social model and its non-categorical approach to health. Studies of children’s narratives on pain experiences and studies on self-reported mental health in CP are warranted.
List of papers. Papers I-IV are removed from the thesis due to copyright restrictions.
Paper I Ramstad K, Jahnsen R, Skjeldal OH, Diseth TH: Characteristics of recurrent musculoskeletal pain in children with cerebral palsy 8-18 years old. Developmental Medicine & Child Neurology 2011; 53:1013-1018 doi:10.1111/j.1469-8749.2011.04070.x
Paper II Ramstad K, Jahnsen R, Skjeldal OH, Diseth TH: Mental health, health related quality of life and recurrent musculoskeletal pain in children with cerebral palsy 8-18 years old. Disability & Rehabilitation 2012; 34:1589-1595 doi:10.3109/09638288.2012.656794
Paper III Ramstad K, Jahnsen R, Skjeldal OH, Diseth TH: Participation in children with cerebral palsy 8-18 years old: The contribution of recurrent musculoskeletal pain and mental health problems. Published as: Parent-reported participation in children with cerebral palsy: the contribution of recurrent musculoskeletal pain and child mental health problems Developmental Medicine & Child Neurology 2012;9;829-835 doi:10.1111/j.1469-8749.2012.04341.x
Paper IV Ramstad K, Jahnsen R, Lofterod B, Skjeldal OH: Continuous intrathecal baclofen therapy in children with cerebral palsy; the timing of effects may have implications for therapy. Acta Paediatrica 2010; 99:1661-1665 doi:10.1111/j.1651-2227.2009.01596.x