title: Unmet need for healthcare services in adolescents and young adults with cancer and their parent carers.
abstract: Cancer in adolescents in and young adults (AYA) has the potential to disrupt health, well-being and developmental trajectories. This study aimed to describe the healthcare support service needs of AYAs with cancer and parent carers and to explore the association of unmet need and emotional distress.
  
  
  
  As part of a national Australian survey of 15-25 year olds with cancer and a nominated parent carer, 196 AYAs reported total and unmet need for 10 clinical services and 204 parents reported on their child's and their own healthcare service needs. Proportions of total and unmet need for specific clinical services are reported. The association of unmet service needs and distress (measured using the Posttraumatic Stress Disorder Checklist) was also examined.
  
  
  
  AYAs and parent carers expressed high total need for clinical services during treatment. Leading AYA unmet needs were for an exercise therapist (37%), genetic counsellor (30%), dietitian (26%), peer support group (26%) and educational and vocational advisor (24%). After treatment, AYAs and parents had fewer total needs. However, 60% of AYA and 38% of parents had two or more unmet needs, similar to during treatment. Female gender and receiving treatment in an adult setting were significantly associated with unmet need for clinical services. After treatment, higher distress levels in AYAs and parents were associated with two or more unmet service needs.
  
  
  
  AYAs and parents had high levels of total and unmet service need, which were associated with greater emotional distress. These results highlight opportunities to re-orientate services to better meet AYA and parent needs.
authors.affiliation: Centre for Adolescent Health, Royal Children's Hospital, 50 Flemington Rd., Parkville, VIC, Australia. Susan.sawyer@rch.org.au.|Murdoch Childrens Research Institute, Parkville, VIC, Australia. Susan.sawyer@rch.org.au.|Department of Paediatrics, The University of Melbourne, Parkville, VIC, Australia. Susan.sawyer@rch.org.au.|School of Population and Global Health, The University of Melbourne, Parkville, VIC, Australia. Susan.sawyer@rch.org.au.
authors.forename: Susan M
authors.initials: SM
authors.lastname: Sawyer
authors.affiliation: Centre for Adolescent Health, Royal Children's Hospital, 50 Flemington Rd., Parkville, VIC, Australia.|Murdoch Childrens Research Institute, Parkville, VIC, Australia.
authors.forename: Robyn
authors.initials: R
authors.lastname: McNeil
authors.affiliation: Murdoch Childrens Research Institute, Parkville, VIC, Australia.|Children's Cancer Centre, Royal Children's Hospital, Parkville, VIC, Australia.
authors.forename: Maria
authors.initials: M
authors.lastname: McCarthy
authors.affiliation: Children's Cancer Centre, Royal Children's Hospital, Parkville, VIC, Australia.|ONTrac Adolescent & Young Adult Cancer Service, Peter MacCallum Cancer Centre, Parkville, VIC, Australia.
authors.forename: Lisa
authors.initials: L
authors.lastname: Orme
authors.affiliation: ONTrac Adolescent & Young Adult Cancer Service, Peter MacCallum Cancer Centre, Parkville, VIC, Australia.
authors.forename: Kate
authors.initials: K
authors.lastname: Thompson
authors.affiliation: Centre for Adolescent Health, Royal Children's Hospital, 50 Flemington Rd., Parkville, VIC, Australia.|Department of Paediatrics, The University of Melbourne, Parkville, VIC, Australia.
authors.forename: Sarah
authors.initials: S
authors.lastname: Drew
authors.affiliation: School of Population and Global Health, The University of Melbourne, Parkville, VIC, Australia.
authors.forename: David
authors.initials: D
authors.lastname: Dunt
mesh_terms: D000293:Adolescent; D000328:Adult; D017028:Caregivers / Q000523:psychology*; D005260:Female; D006301:Health Services Needs and Demand / Q000592:standards*; D006801:Humans; D008297:Male; D009369:Neoplasms / Q000523:psychology*; D010290:Parents; D012944:Social Support; D055815:Young Adult
keywords: Adolescent and young adult; Cancer; Emotional distress; Psychosocial support; Unmet needs