Development and validation of a parent-completed screening checklist for early movement abnormalities indicating a high risk of development of cerebral palsy

Abstract

Introduction: Each year around 1800 UK children are diagnosed with Cerebral Palsy (CP). Of these, 40-50% are deemed ‘low risk’ at birth, relying on their parents and primary health care professionals (PHCPs) to identify concerning features and seek referral, ultimately leading to diagnosis. Reports suggest delays to diagnosis are occurring within primary care referral. Aim: Identify the cause(s) of delays in the referral of infants with emerging motor difficulties to secondary care. Develop new tool(s) to reduce delays. Methods: This study was carried out in three phases. Phase 1: Online survey of parents and carers of children with CP about their earliest concerns and experiences of the referral and diagnosis process. Thematic analysis identified the earliest concerns and the Andersen Model of Total Patient delay categorised where delays are occurring. Phase 2: Scoping review of motor screening tools for infants aged 0-6 months. This identified how the contents of the tools were developed, if parents were included in their development, and how the content relates to early parental concerns. Phase 3: Iterative interviews with key stakeholders while developing a new tool for identifying concerning features. Results: Phase 1: 255 respondents reported more concerns than those routinely reported in the literature. Delays related to symptom awareness, parental confidence, and watch and wait approaches. Phase 2: 42 tools identified. One tool included a parent of a child with CP in the development process. No tools identified all identified parental concerns. Phase 3: Two informational resources were developed: a short hard-copy resource to raise awareness in new parents, and a long online resource to provide further information. Discussion: Reported delays suggest parents’ experience difficulties in help-seeking, and parents and PHCPs lack symptom awareness. New resources aim to rectify this. Further research is needed to refine, validate, and identify the impact of new resources.