title: The art of age-appropriate care: reflecting on a conceptual model of the cancer experience for teenagers and young adults.
abstract: BACKGROUND
  There is recognition that teenagers and young adults with cancer merit age-appropriate specialist care. However, outcomes associated with such specialist care are not defined. Patient experience and patient-reported outcomes such as quality of life are gaining importance. Nevertheless, there is a lack of theoretical basis and patient involvement in experience surveys for young people.
  
  
  OBJECTIVE
  We previously proposed a conceptual model of the lived experience of cancer. We aimed to refine this model adding to areas that were lacking or underreported. The proposed conceptual framework will inform a bespoke patient experience survey for young people.
  
  
  METHODS
  Using participatory research, 11 young people aged 13 to 25 years at diagnosis, participated in a 1-day workshop consisting of semistructured peer-to-peer interviews.
  
  
  RESULTS
  Eight core themes emerged: impact of cancer diagnosis, information provision, place of care, role of health professionals, coping, peers, psychological support, and life after cancer.
  
  
  CONCLUSIONS
  The conceptual framework has informed survey development for a longitudinal cohort study examining patient experience and outcomes associated with specialist cancer care.
  
  
  CONCLUSIONS
  Young people must be kept at the center of interactions in recognition of their stated needs of engagement, of individually tailored information and support unproxied by parents/family. Age-appropriate information and support services that help young people deal with the impact of cancer on daily life and life after cancer must be made available. If we are to develop services that meet need, patient experience surveys must be influenced by patient involvement. Young people can be successfully involved in planning research relevant to their experience.
authors: Department of Oncology, University College London Hospitals NHS Foundation Trust, England. lorna.fern@cancer.org.uk
authors: Lorna A
authors: LA
authors: Fern
authors: Rachel M
authors: RM
authors: Taylor
authors: Jeremy
authors: J
authors: Whelan
authors: Susie
authors: S
authors: Pearce
authors: Tom
authors: T
authors: Grew
authors: Katie
authors: K
authors: Brooman
authors: Carol
authors: C
authors: Starkey
authors: Hannah
authors: H
authors: Millington
authors: James
authors: J
authors: Ashton
authors: Faith
authors: F
authors: Gibson
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D000328:Adult; D000367:Age Factors; D000375:Aging; D015331:Cohort Studies; D004739:England; D006301:Health Services Needs and Demand; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D009369:Neoplasms / Q000451:nursing* / Q000523:psychology / Q000628:therapy; D010379:Peer Group; D036301:Qualitative Research; D011795:Surveys and Questionnaires; D055815:Young Adult