Unequal access to timely physiotherapy for children with cerebral palsy in one Swedish county: a retrospective chart review

Abstract

Rational and aims: Early intervention is considered best practice for children with Cerebral Palsy (CP). Given that access to such intervention is known to vary, we aimed to investigate whether children with CP in Uppsala County, Sweden, have equal access to timely physiotherapy. Furthermore, we describe their birth history and CP profile to learn more about typical features that might enable earlier identification. Method: We conducted a retrospective chart review study including children born in the county from 2010 to 2016, who received a CP diagnosis by December 2018. Entries by doctors and physiotherapists working at Uppsala University Children's Hospital were reviewed. Results: Thirty-eight children were included (21 girls). Twenty-two (58%) were term born. Age at first visit to physiotherapy varied greatly and depended on referral source (p<0.000) and number of risk factors for CP (p<0.000). Children considered at low risk for CP received therapy later. Severity of motor impairment (p=0.001) and number of risk factors (p=0.014) influenced age at referral to habilitation services. Twenty-eight (74%) children were ambulatory at 2 years of age. Unilateral (n=16) and bilateral (n=17) spastic CP was most common. Children referred from the child health services (CHS) had milder forms of CP. Conclusion: Children with CP have unequal access to timely physiotherapy, and children referred from the CHS have the most delayed access. All professionals performing developmental surveillance and health monitoring should receive proper training and use evidence-based assessment methods when available to provide safe and equal care. Physiotherapy should be available prior to formal medical diagnosis.

Parents want Swedish child health services to focus more on motor development and practical advice

“…11 Nevertheless, the use of standardised assessment methods in routine practice remains limited in Sweden and motor development is monitored by observing whether children reach milestones or parental reports. 12 Assessing motor development using milestones can hamper the early identification of motor disorders in children, [12][13][14][15] as there is a generous time span for reaching motor milestones and achievements are assessed in a binary fashion without delineate attributes related to the quality of movement. This could deprive children of early interventions that could optimise their development and prevent secondary consequences.…”

“…Furthermore, the lack of standardised assessments leads to large variations in child motor assessments and unequal access to early interventions. 14,16 Despite this, Swedish CHS strive to provide equitable care and recognise the need for more evidence-based practice. 3,10 Listening to parents' experiences and expectations is key to developing evidence-based approaches that are responsive to family needs.…”

“…Assessing motor development using milestones can hamper the early identification of motor disorders in children, 12‐15 as there is a generous time span for reaching motor milestones and achievements are assessed in a binary fashion without delineate attributes related to the quality of movement. This could deprive children of early interventions that could optimise their development and prevent secondary consequences.…”

“…This could deprive children of early interventions that could optimise their development and prevent secondary consequences. Furthermore, the lack of standardised assessments leads to large variations in child motor assessments and unequal access to early interventions 14,16 …”