title: Adolescent and young adult (AYA) lymphoma survivors report lower health-related quality of life compared to a normative population: results from the PROFILES registry.
abstract: BACKGROUND
  Trying to simultaneously achieve developmental milestones and cope with a life-threatening disease may place adolescents and young adults (AYAs) at risk for impaired health-related quality of life (HRQoL) later in life. The aim of this study was to examine differences in HRQoL between AYA lymphoma survivors and a normative population and to determine sociodemographic, clinical and long-term symptom-related factors associated with HRQoL.
  
  
  METHODS
  This study was part of a longitudinal, population-based survey among lymphoma survivors diagnosed between 1999 and 2012. The AYA survivor sample (18-39 years at time diagnosis) was compared to a sex- and age-matched normative population on HRQoL (EORTC-QLQ-C30) and psychological distress (HADS). Multiple linear regression analyses were conducted to determine factors associated with HRQoL among survivors.
  
  
  RESULTS
  One hundred and ninety-eight AYA lymphoma survivors (58%) responded to the study invitation. Compared to an age- and sex-matched normative population (N = 380), significantly and clinically relevant poorer HRQoL was observed for AYA lymphoma survivors in seven specific domains of HRQoL: physical, role, cognitive, emotional, social functioning, fatigue and financial difficulties (all p < 0.05). In addition, AYA lymphoma survivors less often had a spouse/partner and more often had a lower educational level compared to the normative population. Linear regression analyses showed that being unemployed, female gender, having one or more comorbid conditions, high levels of fatigue and psychological distress were most strongly associated with HRQoL.
  
  
  CONCLUSIONS
  These findings identify specific domains of life in which cancer has a significant and long-term impact for AYA lymphoma survivors. Future investigations are needed to identify and test administrations and timing of psychosocial support interventions having potential to reduce long-term late effects in specific HRQoL domains and promote function and adaptability after cancer treatment.
authors.affiliation: a Department of Medical Psychology , Radboud University Medical Center , Nijmegen , The Netherlands.
authors.forename: Olga
authors.initials: O
authors.lastname: Husson
authors.affiliation: a Department of Medical Psychology , Radboud University Medical Center , Nijmegen , The Netherlands.
authors.forename: Judith B
authors.initials: JB
authors.lastname: Prins
authors.affiliation: b Department of Medical Oncology , Radboud University Medical Center , Nijmegen , The Netherlands.
authors.forename: Suzanne E J
authors.initials: SE
authors.lastname: Kaal
authors.affiliation: c Netherlands Comprehensive Cancer Organisation (IKNL) , Utrecht , The Netherlands.
authors.forename: Simone
authors.initials: S
authors.lastname: Oerlemans
authors.affiliation: d Department of Haematology , Radboud University Medical Center , Nijmegen , The Netherlands.
authors.forename: Wendy B
authors.initials: WB
authors.lastname: Stevens
authors.affiliation: e University of Michigan School of Social Work , Ann Arbor , MI , USA.
authors.forename: Bradley
authors.initials: B
authors.lastname: Zebrack
authors.affiliation: b Department of Medical Oncology , Radboud University Medical Center , Nijmegen , The Netherlands.|f Institute of Cancer Research and Royal Marsden NHS Foundation Trust , London , UK.
authors.forename: Winette T A
authors.initials: WT
authors.lastname: van der Graaf
authors.affiliation: c Netherlands Comprehensive Cancer Organisation (IKNL) , Utrecht , The Netherlands.|g CoRPS-Centre of Research on Psychology in Somatic diseases, Department of Medical and Clinical Psychology , Tilburg University , Tilburg , The Netherlands.|h Division of Psychosocial Oncology and Epidemiology , Netherlands Cancer Institute , Amsterdam , The Netherlands.
authors.forename: Lonneke V
authors.initials: LV
authors.lastname: van de Poll-Franse
mesh_terms: D000293:Adolescent; D000328:Adult; D005260:Female; D006801:Humans; D008137:Longitudinal Studies; D008223:Lymphoma / Q000401:mortality* / Q000523:psychology; D008297:Male; D011788:Quality of Life; D012042:Registries; D017741:Survivors / Q000523:psychology*; D055815:Young Adult