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Individualised hospital care pathways for children with autism

Three Part Question

In [children with autism] does an [individualised hospital pathway][reduce patient anxiety and increase cooperation with interventions]?

Clinical Scenario

A young person with autism comes to hospital for an intervention and the procedure is cancelled as a result of the patient’s challenging behaviour and distress. You wonder if an individualised care plan would have reduced patient anxiety and improved cooperation with the intervention.

Search Strategy

AMED, BNI, CINAHL, EMBASE and MEDLINE 1995 – 2013. Search History - autism AND spectrum AND disorder, hospitalised AND child. All children; 0-18 years.

Relevant Paper(s)

Author, date and country Patient group Study type (level of evidence) Outcomes Key results Study Weaknesses
Chebuhar A, McCarthy AM, Bosch J, Baker S.
AutismDescriptive feasibility study Parents and professionals surveyed Level 3 (NICE) Picture schedules made hospital procedures more tolerable for most patientsPicture schedules and increasing autism awareness for children with autism attending hospital are useful in optimising communication and relieving anxiety and distress behavioursSmall number of surveys returned
Drake J, Johnson N, Stoneck A, Martinez D, Massey M
Children aged 2-18yrs with developmental disability Nursing cross-sectional post-test survey Level 2- (NICE)Use of a distraction kit reduced stress for patient and staffA distraction kit is one part of an intervention package required by children with autism in hospital Small sample of nurses Outcome measures for anxiety & behaviour were not used
Pratt K, Baird G, Gringras P.
Children with autism spectrum conditionsAudit Parents’ focus groups Staff interviews Level 2- (NICE) Pre-admission planning and autism awareness raising improves the patient experience from family and staff perspective and can optimise access to health care Completion of a structured checklist by a key worker in hospital reduces distress for children with autismSmall number of parents and staff audited
Rainey, L and van der Walt JH.
Autistic children requiring anaesthesia Case reports Level 3 (NICE) Pre-admission planning minimises stress for child and familyEarly identification of autistic children requiring anaesthetic essential including use of electronic databaseLimited descriptive opinion
Scarpinato N, Bradley J, Kurbjun K, Bateman X, Holtzer B, Ely B.
Children with autistic spectrum disorders Audit of patient database Clinical case studies Parent survey Level 2- (NICE)The best plan of care is agreed with parents and contains strategies that are individualised to the needs of patients to optimise the quality of patient careAutism awareness training and resources to meet patients’ individualised needs are needed in health settings to improve access and deliver safe / consistent careLimited case studies Small sample size No control group Participants limited to parents
Seid M, Sherman M, Seid AB.
Children with autism undergoing surgeryClinical case studies Level 2- (NICE)Greater patient/parent satisfaction, better clinical outcomes and cost savings can result from using individual management plans with children with autism undergoing surgery in collaboration with parentsOperative course for children with autism may be improved by use of an individualised perioperative care plan Limited case studies
Souders MC, DePaul D, Freeman KG, Levy SE.
Children with autism undergoing healthcare proceduresDescriptive findings from previous randomised crossover double blind trial Level 2 (NICE)Individualised strategies incorporated in a care plan can optimise quality of care and achieve the healthcare goalPreparation and behavioural interventions may help meet the unique needs of children with autism to successfully undergo medical proceduresLimited case studies Limited sample
van der Walt JH and Moran C.
Children with autism receiving anaesthesiaProspective audit of a patient database and management programme Level 3 (NICE)Pre and post operative planning and a flexible approach for children with autism maximises compliance with anaesthetic proceduresEarly discharge Less frequent use of sedation/restraint Less stress for patient continuity of careRelatively small number Uncontrolled research conditions
Vaz I
Children with autism spectrum disorder and learning disabilities Health professionals in healthcare settings survey Level 3 (NICE)Visual symbols applicable to healthcare settings increased patients understanding of verbal explanations in medical settings reducing stress/anxiety for children and more productive for healthcare staffVisual symbols help explain tests and treatments before and during medical appointmentsSmall sample used in school medical setting not hospital


Challenges posed by children with autism accessing hospital services are reported internationally. Recommendations from published literature would suggest a positive benefit but are limited to audit and case study evidence.

Clinical Bottom Line

Currently there is insufficient good evidence to recommend for or against the use of an agreed individualised care pathway for this group of patients. Local policy should be followed taking into account the specific needs of the patient and their family.


  1. Chebuhar A, McCarthy AM, Bosch J, Baker S. Using Picture Schedules in Medical Settings for Patients with an Autism Spectrum Disorder Journal of Pediatric Nursing April 2013 Vol 28 Issue 2 Page125:134
  2. Drake J, Johnson N, Stoneck A, Martinez D, Massey M Evaluation of Coping Kit for Children with Challenging Behaviours in a Pediatric Hospital Pediatric Nursing July-August 2012 Vol 38 No.4 215:221
  3. Pratt K, Baird G, Gringras P. Ensuring Successful Admission to Hospital for Young People with Learning Difficulties, Autism and Challenging Behaviour: a Continuous Quality Improvement and Change Management Programme Child: Care, Health & Development 2012 Nov 38 (6):789-97.
  4. Rainey, L and van der Walt JH. The Anaesthetic Management of Autistic Children Anaethesia & Intensive Care 1998 Vol 26 No 6 Dec 682:686
  5. Scarpinato N, Bradley J, Kurbjun K, Bateman X, Holtzer B, Ely B. Caring for the Child With an Autism Spectrum Disorder in the Acute Care Setting Journal for Specialists for Pediatric Nursing July 2010 15 3 244:254
  6. Seid M, Sherman M, Seid AB. Perioperative Psychosocial Interventions for Austistic Children Undergoing ENT Surgery International Journal of Pediatric Otorhinolaryngology 1997 40 107:113
  7. Souders MC, DePaul D, Freeman KG, Levy SE. Caring for Children and Adolescents with Autism who Require Challenging Procedures Pediatric Nursing 2002 Nov/Dec 28 6 555:562
  8. van der Walt JH and Moran C. An Audit of Peroperative Management of Autistic Children Paediatric Anaesthesia 2001 Vol 11 401:408
  9. Vaz I Visual Symbols in Healthcare Settings for Children with Learning Disabilities and Autism Spectrum Disorder British Journal of Nursing 2013 Vol 22 No 3 156:159