Exploring quality of life of children with cerebral palsy and intellectual disability: What are the important domains of life?

Davis, Elise; Reddihough, Dinah; Murphy, Nada; Epstein, Amy; Reid, Susan M; Whitehouse, Andrew J. O.; Williams, Katrina; Leonard, Helen; Downs, Jenny

doi:10.1111/cch.12501

Cited by 45 publications

(42 citation statements)

References 26 publications

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“…Davis and colleagues published two articles (Davis et al, , ) on how the F‐words apply to QoL and can be used to support QoL measurement. Their 2017 study used the F‐words to organize 11 domains of QoL that fit within the definitions of fun, “family/friends,” “fitness,” and “function” (Davis et al, ). Building on this, their 2018 article suggested the use of the F‐words to measure QoL domains.…”

Section: Resultsmentioning

confidence: 99%

Exploring the international uptake of the “F‐words in childhood disability”: A citation analysis

Soper

Cross

Rosenbaum

et al. 2019

Child

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Background:The "F-words in childhood disability" (function, family, fitness, fun, friends, and future) were introduced in a concept paper in 2012 entitled, "The Fwords in childhood disability: I swear this is how we should think!". The "F-words" are grounded in, and aim to operationalize, the World Health Organization's (World Health Organization, 2001) International Classification of Functioning, Disability and Health (ICF) framework. A citation analysis was conducted to explore the extent of research uptake of the "F-words" concepts.Methods: Three databases-Google Scholar, Wiley Online, and Web of Sciencewere searched from July 2012 to December 2018 for sources that cited the original F-words paper. Dates of publication and countries of first authors were extracted from all cited articles, and a taxonomy was developed to categorize the type of usage.Results: The search yielded 157 sources from 26 countries, and the number of citations has continued to increase since the paper's publication. Sources were placed into three categories: cited/referenced (n = 109; i.e., the paper was simply cited), integrated/informed (n = 36; i.e., the F-words were stated within the text), and non-English (n = 12). Of the 36 integrated/informed sources, 34 (94.4%) applied the F-words to the ICF framework and five themes emerged with respect to the use of the F-words: (a) support of a holistic approach to childhood disability, (b) association of the F-words to physical activity and rehabilitation, (c) application and measurement of quality of life, (d) F-words research team-related papers, and (e) "other" category.Conclusion: This citation analysis shows that the F-words are mainly being used to operationalize the ICF, support a holistic approach to childhood disability, and inform physical activity and rehabilitation-based interventions. These perspectives will play an important role in informing the next steps with respect to moving the F-words into research and practice.

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Section: Resultsmentioning

confidence: 99%

Exploring the international uptake of the “F‐words in childhood disability”: A citation analysis

Soper

Cross

Rosenbaum

et al. 2019

Child

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“…Additionally, a proportion of participating children had a comorbid diagnosis of Autism Spectrum Disorder (ASD), intellectual disability and/or a learning disability, which may have affected their ability to reliably self-report quality of life. 42 Future studies may utilize both parent-proxy and child self-report measures.…”

Section: Secondary Outcomesmentioning

confidence: 99%

Efficacy of Participation-Focused Therapy on Performance of Physical Activity Participation Goals and Habitual Physical Activity in Children With Cerebral Palsy: A Randomized Controlled Trial

Reedman

Boyd

Trost

et al. 2019

Archives of Physical Medicine and Rehabilitation

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“…QOL is defined as “an individual’s perception of their position in life in the context of the culture and value systems in which they live, and in relation to their goals, expectations, standards and concerns” [ 20 ]. The evaluation of QOL has been used as an approach to achieve insight into a child’s life, to examine aspects of life that are supportive or detrimental and to provide information on the development of interventions [ 21 ].…”

Section: Introductionmentioning

confidence: 99%

The effects of bone marrow mononuclear cell transplantation on the quality of life of children with cerebral palsy

Nguyen

2018

Health Qual Life Outcomes

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BackgroundQuality of life (QOL) is an important factor in evaluating the effectiveness of treatment in children with cerebral palsy (CP). The aim of this study was to evaluate the effects of autologous bone marrow mononuclear cells (BM MNCs) on the QOL of children with CP.MethodsFrom December 2015 to December 2016, 30 children with CP aged from 2 to 15 years received two intrathecal infusions of BM MNCs, one at baseline and the other 3 months later, at Vinmec International Hospital. The motor function and muscle tone of the patients were evaluated using the Gross Motor Function Measure (GMFM)-88 and Modified Ashworth Score, respectively. Their QOL was assessed at baseline and 6 months after the first BM MNC transplant using the Vietnamese version of the Cerebral Palsy Quality of Life Questionnaire for children (CP QOL-Child)–the parental proxy report, which comprises seven domains. Nineteen mothers (mean age: 32.9±4.9 years) and 11 fathers (mean age: 36.1±6.8 years) were invited to complete the CP QOL-Child assessment before and after the transplantations, Paired t-tests and multivariate regression analyses were used to evaluate the changes in QOL and GMFM scores and to identify the key factors correlated with the QOL score.ResultsSignificant changes were observed in the children’s gross motor function and muscle spasticity, as evidenced by the GMFM-88 total score, scores for each of its domains, the GMFM-66 percentile and the muscle tone (P < 0.001). Six months after the transplantations, the QOL scores of children with CP were markedly increased (P < 0.001) for all the domains, except for the domain of access to services. In the multivariate regression analysis, significant associations were found between higher age of children and higher QOL except for feeling about functioning and pain and impact of disability domains. Gross Motor Function Classification System (GMFCS) level was negatively correlated with the score of pain and impact of disability domain, while the GMFM-88 scores were positively correlated with the QOL in terms of feelings about functioning and family health domain (P < 0.05).ConclusionThe QOL of the children with CP was noticeably improved 6 months after BM MNC transplantation and was accompanied by improvements in gross motor function and muscle tone.Trial registrationClinicalTrials.gov Identifier: NCT02574923. Registered on October 14, 2015.

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Exploring quality of life of children with cerebral palsy and intellectual disability: What are the important domains of life?

Cited by 45 publications

References 26 publications

Exploring the international uptake of the “F‐words in childhood disability”: A citation analysis

Exploring the international uptake of the “F‐words in childhood disability”: A citation analysis

Efficacy of Participation-Focused Therapy on Performance of Physical Activity Participation Goals and Habitual Physical Activity in Children With Cerebral Palsy: A Randomized Controlled Trial

The effects of bone marrow mononuclear cell transplantation on the quality of life of children with cerebral palsy

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