Samantha C Sodergren1, Olga Husson2, Gudrun E Rohde3,4,5, Iwona M Tomaszewska6, Bella Vivat5, Noam Yarom7,8, Helen Griffiths9, Anne-Sophie Darlington1. 1. 1 Faculty of Health Sciences, University of Southampton , Southampton, United Kingdom . 2. 2 Department of Medical Psychology, Radboud University Medical Center , Nijmegen, The Netherlands . 3. 3 Faculty of Health and Sport Sciences, University of Agder , Kristiansand, Norway . 4. 4 Department of Clinical Research, Sorlandet Hospital , Kristiansand, Norway . 5. 5 Marie Curie Palliative Care Research Department and Division of Psychiatry, University College London , London, United Kingdom . 6. 6 Department of Medical Education, Jagiellonian University Medical College , Krakow, Poland . 7. 7 Oral Medicine Unit, Sheba Medical Center , Tel-Hashomer, Israel . 8. 8 The Maurice and Gabriela Goldschleger School of Dental Medicine, Tel Aviv University , Tel Aviv, Israel . 9. 9 Department of Psychological Medicine, Oxford University Hospital , Oxford, United Kingdom .
Abstract
PURPOSE: In recent years, the assessment of health-related quality of life (HRQoL) has been recognized as particularly informative to healthcare providers. 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 physical and psychosocial challenges of this developmental phase. The objective of this study was to capture the HRQoL issues described by AYAs with cancer using thematic analysis. METHODS: Semi-structured interviews were carried out with 45 AYAs aged 14-25 years from six countries. RESULTS: The most prevalent cancers presented were leukemia (n = 12) and lymphoma (n = 8). AYAs' descriptive accounts were analyzed and 12 categories identified: Symptoms (i.e., pain, nausea, vomiting) (84% AYAs); activity limitations (education, leisure time activities) (87%); disrupted life plans (29%); social (loss of friends, family life) (91%); emotional (depression, anxiety) (64%); body image (conscious of changed appearance) (36%); self-appraisals (greater maturity, braver) (47%); outlook on life (altered priorities, increased motivation to achieve) (33%); lifestyle (restricted diet, avoidance of infections) (18%), treatment-related (absence of age-appropriate information, treatment burden) (31%); fertility (24%); and financial concerns (13%). CONCLUSIONS: A wide spectrum of both negative and positive issues were described. Several of these issues, such as disrupted life plans and difficulty establishing romantic relationships, are likely to be more common to AYAs with cancer and might not be captured by existing HRQoL measures. Recognition of these issues and finding ways of addressing them should be seen as an essential component of AYA-tailored cancer care.
PURPOSE: In recent years, the assessment of health-related quality of life (HRQoL) has been recognized as particularly informative to healthcare providers. 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 physical and psychosocial challenges of this developmental phase. The objective of this study was to capture the HRQoL issues described by AYAs with cancer using thematic analysis. METHODS: Semi-structured interviews were carried out with 45 AYAs aged 14-25 years from six countries. RESULTS: The most prevalent cancers presented were leukemia (n = 12) and lymphoma (n = 8). AYAs' descriptive accounts were analyzed and 12 categories identified: Symptoms (i.e., pain, nausea, vomiting) (84% AYAs); activity limitations (education, leisure time activities) (87%); disrupted life plans (29%); social (loss of friends, family life) (91%); emotional (depression, anxiety) (64%); body image (conscious of changed appearance) (36%); self-appraisals (greater maturity, braver) (47%); outlook on life (altered priorities, increased motivation to achieve) (33%); lifestyle (restricted diet, avoidance of infections) (18%), treatment-related (absence of age-appropriate information, treatment burden) (31%); fertility (24%); and financial concerns (13%). CONCLUSIONS: A wide spectrum of both negative and positive issues were described. Several of these issues, such as disrupted life plans and difficulty establishing romantic relationships, are likely to be more common to AYAs with cancer and might not be captured by existing HRQoL measures. Recognition of these issues and finding ways of addressing them should be seen as an essential component of AYA-tailored cancer care.
Entities:
Keywords:
health-related quality of life (HRQoL); psychosocial; supportive care
Authors: Reema R Mathanda; Betty K Hamilton; Lisa Rybicki; Anjali S Advani; Amy Colver; Jane Dabney; Christina Ferraro; Rabi Hanna; Matt Kalaycio; Christine Lawrence; Linda McLellan; Ronald Sobecks; Navneet S Majhail; Seth J Rotz Journal: Biol Blood Marrow Transplant Date: 2020-05-19 Impact factor: 5.742
Authors: Olga Husson; Bryce B Reeve; Anne-Sophie Darlington; Christabel K Cheung; Samantha Sodergren; Winette T A van der Graaf; John M Salsman Journal: J Natl Cancer Inst Date: 2022-04-11 Impact factor: 13.506
Authors: Suzanne Ameringer; R K Elswick; Kristin Stegenga; Catherine Fiona Macpherson; Jeanne M Erickson; Lauri Linder Journal: Cancer Nurs Date: 2021-12-29 Impact factor: 2.760
Authors: Suzanne E J Kaal; Emma K Lidington; Judith B Prins; Rosemarie Jansen; Eveliene Manten-Horst; Petra Servaes; Winette T A van der Graaf; Olga Husson Journal: J Clin Med Date: 2021-04-22 Impact factor: 4.241
Authors: Olga Husson; Marjolijn J L Ligtenberg; Lonneke V van de Poll-Franse; Judith B Prins; Martin J van den Bent; Mies C van Eenbergen; Renske Fles; Eveliene Manten-Horst; Jourik A Gietema; Winette T A van der Graaf Journal: Cancers (Basel) Date: 2021-05-13 Impact factor: 6.639
Authors: Cole Wayant; Morgan Garrett; Kaylea Bixler; Jennifer Mack; Jon Goodell; Matt Vassar Journal: J Adolesc Young Adult Oncol Date: 2021-07-23 Impact factor: 1.757