Adolescents with cerebral palsy report similar quality of life to their able-bodied peers

“Our results are encouraging. Across 10 different areas of life, adolescents with cerebral palsy only ranked their quality of friend and peer relationships as on average lower than adolescents in the general population, challenging the widespread perception that adolescents with disabilities have unhappy, unfulfilled lives,” [*] says lead author Allan Colver, Professor of Community Child Health at Newcastle University in the UK.

A new study by Newcastle University in the UK finds teens with cerebral palsy report similar quality of life to their able-bodied peers.

Caroline Brogan, The Lancet, EurekAlert! 6 October 2014

Cerebral Palsy is the most common neuro-developmental physical disability, affecting 1 in every 400 people in the UK.

The study is the first to track the QoL of young people with cerebral palsy from childhood to adolescence. Using population-based cerebral palsy registers in nine European regions, the researchers selected a representative sample of 431 adolescents with cerebral palsy aged 13-17 years. The adolescents self-reported their QoL using KIDSCREEN, a European questionnaire asking about QoL in the previous week across 10 areas of life. [**]

Most (355) of the adolescents had already completed the questionnaire during childhood aged 8-12 years. QoL was compared with matched controls in the general population. The authors also examined to what extent childhood factors amenable to intervention (ie, pain, psychological problems, and parenting stress) predicted adolescent QoL.

Results of the questionnaire revealed that adolescents with cerebral palsy rated their overall QoL as comparable to that of their able-bodied peers. Moreover, they reported better QoL in five areas of life than adolescents in the general population — moods and emotions, self-perception, autonomy, relationships with parents, and school life. Only in the category of social support available from friends and peers did adolescents with cerebral palsy report significantly lower QoL than their able-bodied peers.

For adolescents with cerebral palsy, more severe motor impairment was associated with poorer QoL in just three categories — moods and emotions, autonomy, and social support from peers.

Importantly, the authors noted that pain in childhood or adolescence reduced adolescent’s QoL across eight areas of life, highlighting the importance of pain assessment and management in all children with cerebral palsy. Furthermore, experiencing high parenting stress or other psychological problems in childhood also predicted lower QoL in adolescence.

According to Professor Colver, “Clinicians should intervene early in childhood to ameliorate extremes of pain, psychological problems, and parenting stress, for which effective interventions are available… Attention should be directed to helping children with cerebral palsy, especially those who are more severely impaired, to maintain friendships with peers, and to develop new friendships as they move into adolescence.

Writing in a linked Comment, Alexander Hoon Jr. and Elaine Stashinko from the Kennedy Krieger Institute in Baltimore, USA, say, “As known by people with cerebral palsy, the medical and rehabilitative community now recognises that affected individuals seek the same QoL and social participation as others, rather than just improved physical function for its own sake.

Cerebral palsy is a lifelong disorder with interventions during childhood that might have long-term individual, family, and societal benefits. Colver and colleagues’ study suggests that children and adolescents with cerebral palsy may need particular help maintaining and developing peer relationships.

Childhood interventions that optimise social support, health, and wellbeing may affect not only adolescent QoL, but also adult outcome by optimising each individual’s potential to adapt to, and prevent or reduce, the secondary morbidities often present.”

Editor’s Notes
[*] Quote direct from author and cannot be found in text of article.
[**] Physical well-being, psychological well-being, moods and emotions, self-perception, autonomy, relationships with parents, social support and peers, school life, financial resources, and social acceptance.

Source The Lancet via EurekAlert! AAAS


Self-reported quality of life of adolescents with cerebral palsy: a cross-sectional and longitudinal analysis, Colver A, Rapp M, Eisemann N, Ehlinger V, Thyen U, Dickinson HO, Parkes J, Parkinson K, Nystrand M, Fauconnier J, Marcelli M, Michelsen SI, Arnaud C. Lancet. 2015 Feb 21;385(9969):705-16. doi: 10.1016/S0140-6736(14)61229-0. Epub 2014 Oct 7. Full text

Quality of life in adolescents with cerebral palsy, Hoon AH Jr, Stashinko EE. Lancet. 2015 Feb 21;385(9969):670-2. doi: 10.1016/S0140-6736(14)61599-3. Epub 2014 Oct 7. Full text

Krause et al_International consensus on a standard set of outcome measures for child and youth anxiety, depression, obsessive-compulsive disorder, and post-traumatic stress disorder_2021

International consensus on a standard set of outcome measures for child and youth anxiety, depression, obsessive-compulsive disorder, and post-traumatic stress disorder, Krause KR, Chung S, Adewuya AO, Albano AM, Babins-Wagner R, Birkinshaw L, Brann P, Creswell C, Delaney K, Falissard B, Forrest CB, Hudson JL, Ishikawa SI, Khatwani M, Kieling C, Krause J, Malik K, Martínez V, Mughal F, Ollendick TH, Ong SH, Patton GC, Ravens-Sieberer U, Szatmari P, Thomas E, Walters L, Young B, Zhao Y, Wolpert M. Lancet Psychiatry. 2021 Jan;8(1):76-86. doi: 10.1016/S2215-0366(20)30356-4.

  Further reading

Looking to the future: adolescents with cerebral palsy talk about their aspirations–a narrative study, Cussen A, Howie L, Imms C. Disabil Rehabil. 2012;34(24):2103-10. doi: 10.3109/09638288.2012.672540. Epub 2012 Apr 17.

Quality of life from the perspective of adolescents with cerebral palsy: “I just think I’m a normal kid, I just happen to have a disability,” Shikako-Thomas K, Lach L, Majnemer A, Nimigon J, Cameron K, Shevell M. Qual Life Res. 2009 Sep;18(7):825-32. doi: 10.1007/s11136-009-9501-3. Epub 2009 Jun 23.

Quality of Life and Self-Determination: Youth with Chronic Health Conditions Make the Connection, McDougall J, Baldwin P, Evans J, Nichols M, Etherington N, Wright V. Appl Res Qual Life. 2016;11:571-599. Epub 2015 Jan 7.

Improving quality of life of children with cerebral palsy: a systematic review of clinical trials, Tsoi WS, Zhang LA, Wang WY, Tsang KL, Lo SK. Child Care Health Dev. 2012 Jan;38(1):21-31. doi: 10.1111/j.1365-2214.2011.01255.x. Epub 2011 Jun 15.

Quality of life as assessed by adults with cerebral palsy, Maestro-Gonzalez A, Bilbao-Leon MC, Zuazua-Rico D, Fernandez-Carreira JM, Baldonedo-Cernuda RF, Mosteiro-Diaz MP. PLoS One. 2018;13(2):e0191960. Published 2018 Feb 5. doi:10.1371/journal.pone.0191960

Health-related quality of life of children and adolescents with cerebral palsy in low- and middle-income countries: a systematic review, Power R, King C, Muhit M, Heanoy E, Galea C, Jones C, Badawi N, Khandaker G. Dev Med Child Neurol. 2018 May;60(5):469-479. doi: 10.1111/dmcn.13681. Epub 2018 Feb 6. Review.

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