Adults with cerebral palsy rank factors associated with quality of life and perceived impact of childhood surgery on adult outcomes

Background: Person-centered care concerns the values and perceptions of the patient in assessment of outcomes. Little is known about perceptions of adults with cerebral palsy (CP) concerning: the most important factors associated with quality of life, definitions of success, short- and long-term outcomes of childhood orthopedic care, and current needs for information surrounding childhood orthopedic care. Methods: An online survey gathered information using structured and semi-structured questions. Descriptive statistics and content analysis summarized findings of structured questions and comments. Results: A total of 71 adults with CP (44 women, median age range 30–39 years), with a variety of functional abilities, participated in the study. Priorities for a good life were clustered. There existed two groups: achievement orientation and relationship orientation. Good health and interpersonal relationships were priorities for both groups. Definitions of success included happiness, independence, meaningful relationships/activities, and mindfulness/lifelong-learning. Fifty-eight percent perceived a positive impact of childhood orthopedic care on current function. A positive perception was associated with being included in the decision making process (chi-square 25, p Conclusion: Ongoing conversations about how improvements from orthopedic surgery in childhood may not last through adolescence or adulthood are needed. The importance of impairment-based interventions should be contextualized within needs for health promotion and social engagement long-term. More research is needed on cost-benefit of childhood orthopedic surgery.Implications for RehabilitationPerceptions of being included in decisions about surgery as a child was associated with long term satisfaction.Consumer education is needed about how improvements gained in childhood may not persist through adolescence or into adulthood.Individual priorities for quality of life vary; and these priorities should be considered when weighing the cost benefit ratio of interventions.Clinicians should broaden the conversation to include how orthopedic surgery and rehabilitation afterwards could potentially impact health and well being in the future. Perceptions of being included in decisions about surgery as a child was associated with long term satisfaction. Consumer education is needed about how improvements gained in childhood may not persist through adolescence or into adulthood. Individual priorities for quality of life vary; and these priorities should be considered when weighing the cost benefit ratio of interventions. Clinicians should broaden the conversation to include how orthopedic surgery and rehabilitation afterwards could potentially impact health and well being in the future.

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PID https://www.doi.org/10.1080/09638288.2019.1701718
PID https://www.doi.org/10.6084/m9.figshare.11470662.v1
PID https://www.doi.org/10.6084/m9.figshare.11470662
URL https://academic.microsoft.com/#/detail/2998376366
URL http://dx.doi.org/10.1080/09638288.2019.1701718
URL https://tandf.figshare.com/articles/Adults_with_cerebral_palsy_rank_factors_associated_with_quality_of_life_and_perceived_impact_of_childhood_surgery_on_adult_outcomes/11470662
URL https://www.tandfonline.com/doi/pdf/10.1080/09638288.2019.1701718
URL https://www.tandfonline.com/doi/full/10.1080/09638288.2019.1701718
URL https://www.ncbi.nlm.nih.gov/pubmed/31881158
URL http://dx.doi.org/10.6084/m9.figshare.11470662
URL http://dx.doi.org/10.6084/m9.figshare.11470662.v1
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Author Gannotti, Mary E.
Author Wilson, Jamie L.
Author Bagley, Anita M.
Author Oeffinger, Donna
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Collected From Datacite; figshare; Crossref; Microsoft Academic Graph
Hosted By Disability and Rehabilitation; figshare
Publication Date 2019-12-27
Publisher Informa UK Limited
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Language UNKNOWN
Resource Type Other literature type; Article
keyword FOS: Sociology
keyword FOS: Biological sciences
system:type publication
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Source https://science-innovation-policy.openaire.eu/search/publication?articleId=dedup_wf_001::fac83d6795a28637fa93f784bbd33946
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Last Updated 26 December 2020, 21:40 (CET)
Created 26 December 2020, 21:40 (CET)