Article Text

Single-centre parental survey of paediatric rehabilitation services for children with cerebral palsy
  1. Rachel Bican1,
  2. Rachel Ferrante2,
  3. Sarah Hendershot2,
  4. Jill C Heathcock1
  1. 1Physical Therapy, The Ohio State University, Columbus, Ohio, USA
  2. 2Clinical Therapies, Nationwide Children's Hospital, Columbus, Ohio, USA
  1. Correspondence to Dr Jill C Heathcock; jill.heathcock{at}osumc.edu

Abstract

Cerebral palsy (CP) is the most common childhood motor disability. The dose of usual care for rehabilitation therapies is unknown. The purpose of this study was to describe current dosage of rehabilitation services for children with CP recruited from a paediatric hospital system in the USA. 96 children with CP were included in this cross-sectional survey. Parents reported frequency, intensity, time and type of therapy services. Weekly frequency was the most common. Children with CP received 0.9–1.2 hours/month of each discipline in the educational setting and 1.5–2.0 hours/month in the clinical setting, lower than the recommendations for improvements in motor skills.

  • health services research
  • rehabilitation
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Introduction

Cerebral palsy (CP) is the most common motor disability for children.1 Many children with CP demonstrate motor and speech impairments, warranting referrals to rehabilitation services (physical therapy (PT), occupational therapy (OT), speech and language pathology (SL/P)) to maximise independence.1 2 Services are provided in educational (school) and/or clinical (outpatient) settings. The dosage of health service models for rehabilitation can be operationally defined by frequency (how often), intensity (repetitions or child effort), time (how long) and type (discipline and/or treatment) of intervention.3 The purpose of this study is to describe usual care for rehabilitation disciplines, PT, OT and SL/P recruited from a single centre in the USA.

Methods

For this cross-sectional survey, 96 children with CP of all severity levels aged 2–8 years (4.9±2.1 years) were recruited to participate. Most of the children in the study participated in a larger pragmatic clinical trial (NCT02897024) comparing the effectiveness of two intensities of PT in an outpatient setting. All data described here are prior to initiation of the clinical trial. Usual care for rehabilitation services the child received in the prior 6 months was gathered via parent report (see online supplemental file 1).

Supplemental material

Patient and public involvement

Patients/parents were not involved in the study design.

Results

Table 1 summarises all rehabilitation services. About half to most children received PT, OT and SL/P in educational and clinical settings. For those receiving therapy, the most common frequency was weekly, regardless of setting or discipline. Children with CP received between 0.9 and 1.2 hours of therapy for each discipline (PT, OT and SL/P) per month in the educational setting for a mean combined total of PT, OT and SL/P services for 1.0 hours/month. They receive between 1.5 and 2.0 hours of therapy for each discipline per month in the clinical setting for a mean combined total of 1.8 hours/month.

Table 1

Summary of all rehabilitation services: number of participants enrolled, frequency and hours/month

Discussion

The results of this study indicate weekly frequency of rehabilitation services was most common, regardless of discipline or where the services were delivered. This work joins others that reported weekly frequency as the most common in 2012, where the authors suggested this frequency was based on convention (such as scheduling).4 The results from this study may suggest that children with CP receive low total hours of PT, OT and SL/P per month in educational and clinical settings. A recent review found that 14–25 hours of goal-directed rehabilitation is needed to achieve an individual goal, and 30–40 hours of rehabilitation is needed for a change in motor ability for children with CP.5 This is important because if children are receiving 1–2 hours of a specific discipline per month, they are (1) being ‘under-dosed’ for change in motor/speech skills, (2) the intervention may be primarily delivered by the family outside of a clinical or educational setting, or (3) a combination of these scenarios.5 If children are being underdosed, this suggests there may be an inadequate amount of rehabilitation treatment delivered in usual care. Home programmes delivered by the family can be effective if feedback, repetition and self-initiated movement of the child are considered.5 If families are providing treatment via a home programme then information about efficacy, caregiver burden and quantification of the dose at home is needed.6 It is unlikely that the dosages of rehabilitation services reported by parents are improving motor skills to the best extent possible based on the currently available evidence. While assuring efficacy of treatment, future work could consider implementation strategies to promote evidence-based doses that consider frequency, intensity, time and type in the plan of care. Limitations include: (1) participants were recruited from a single hospital system, and (2) survey data relied on parent report with potential for recall bias.

Ethics statements

Ethics approval

The procedures described in this manuscript were approved by the Institutional Review Board (Buck-IRB) at The Ohio State University (2016N0031).

Acknowledgments

We thank all the participants, their families and all research staff involved in this study.

References

Supplementary materials

  • Supplementary Data

    This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.

Footnotes

  • Contributors SH, RF and JCH developed the parent questionnaire to record medical history and neurorehabilitation dose. RB and JCH collected the data. RB, SH, RF and JCH were involved in writing, editing and revising sections of the manuscript. JCH serves as the primary guarantor.

  • Funding This work was supported by a Patient-Centered Outcomes Research Institute grant (NCT02897024) to JCH, and the Promotion of Doctoral Studies award from the Foundation for Physical Therapy Research to RB.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.