title: Systematic review of the health-related quality of life issues facing adolescents and young adults with cancer.
abstract: For adolescents and young adults (AYAs), the impact of a cancer diagnosis and subsequent treatment is likely to be distinct from other age groups given the unique and complex psychosocial challenges of this developmental phase. In this review of the literature, we report the health-related quality of life (HRQoL) issues experienced by AYAs diagnosed with cancer and undergoing treatment.
  
  
  
  MEDLINE, EMBASE, CINAHL, PsychINFO and the Cochrane Library Databases were searched for publications reporting HRQoL of AYAs. Issues generated from interviews with AYAs or from responses to patient reported outcome measures (PROMs) were extracted.
  
  
  
  166 papers were reviewed in full and comprised 72 papers covering 69 primary studies, 49 measurement development or evaluation papers and 45 reviews. Of the 69 studies reviewed, 11 (16%) used interviews to elicit AYAs' descriptions of HRQoL issues. The majority of the PROMs used in the studies represent adaptations of paediatric or adult measures. HRQoL issues were organised into the following categories: physical, cognitive, restricted activities, relationships with others, fertility, emotions, body image and spirituality/outlook on life.
  
  
  
  The HRQoL issues presented within this review are likely to be informative to health care professionals and AYAs. The extensive list of issues suggests that the impact of a cancer diagnosis and treatment during adolescence and young adulthood is widespread and reflects the complexities of this developmental phase.
authors.affiliation: Faculty of Health Sciences, University of Southampton, Southampton, UK. S.C.Sodergren@soton.ac.uk.
authors.forename: Samantha C
authors.initials: SC
authors.lastname: Sodergren
authors.affiliation: Department of Medical Psychology, Radboud University Medical Center, Nijmegen, The Netherlands.
authors.forename: Olga
authors.initials: O
authors.lastname: Husson
authors.affiliation: Faculty of Health Sciences, University of Southampton, Southampton, UK.
authors.forename: Jessica
authors.initials: J
authors.lastname: Robinson
authors.affiliation: Faculty of Health and Sport Sciences, University of Agder, Kristiansand, Norway.|Department of Clinical Research, Sorlandet Hospital, Kristiansand, Norway.
authors.forename: Gudrun E
authors.initials: GE
authors.lastname: Rohde
authors.affiliation: Department of Medical Education, Jagiellonian University Medical College, Kraków, Poland.
authors.forename: Iwona M
authors.initials: IM
authors.lastname: Tomaszewska
authors.affiliation: Marie Curie Palliative Care Research Department and Division of Psychiatry, University College London, London, UK.
authors.forename: Bella
authors.initials: B
authors.lastname: Vivat
authors.affiliation: Torbay Hospital, Torquay, UK.
authors.forename: Rebecca
authors.initials: R
authors.lastname: Dyar
authors.affiliation: Faculty of Health Sciences, University of Southampton, Southampton, UK.
authors.forename: Anne-Sophie
authors.initials: AS
authors.lastname: Darlington
mesh_terms: D000293:Adolescent; D000328:Adult; D006801:Humans; D009369:Neoplasms / Q000523:psychology*; D000071066:Patient Reported Outcome Measures; D011788:Quality of Life / Q000523:psychology*; D055815:Young Adult
keywords: Adolescents and young adults (AYAs); Cancer; Health-related quality of life (HRQoL); Patient reported outcome measures (PROMs)