Does age matter? A comparison of health-related quality of life issues of adolescents and young adults with cancer
Corresponding Author
Samantha C. Sodergren
School of Health Sciences, University of Southampton, Southampton, UK
Correspondence
Samantha C. Sodergren, School of Health Sciences, University of Southampton, Southampton, UK.
Email: [email protected]
Search for more papers by this authorGudrun E. Rohde
Faculty of Health and Sport Sciences, University of Agder, Kristiansand, Norway
Department of Clinical Research, Sorlandet Hospital, Kristiansand, Norway
Search for more papers by this authorIwona M. Tomaszewska
Department of Medical Education, Jagiellonian University Medical College, Krakow, Poland
Search for more papers by this authorAya Pessing
Department of Oral & Maxillofacial Surgery, Sheba Medical Center, Tel-Hashomer, Israel
Search for more papers by this authorNoam Yarom
Department of Oral Pathology and Oral Medicine, Tel-Aviv University, Tel-Aviv, Israel
Search for more papers by this authorLouise Hooker
Teenage and Young Adult Cancer Service, University Hospital Southampton, Southampton, UK
Search for more papers by this authorAmy Din
School of Health Sciences, University of Southampton, Southampton, UK
Search for more papers by this authorAnne Sophie Darlington
School of Health Sciences, University of Southampton, Southampton, UK
Search for more papers by this authorthe EORTC Quality of Life Group
Search for more papers by this authorCorresponding Author
Samantha C. Sodergren
School of Health Sciences, University of Southampton, Southampton, UK
Correspondence
Samantha C. Sodergren, School of Health Sciences, University of Southampton, Southampton, UK.
Email: [email protected]
Search for more papers by this authorGudrun E. Rohde
Faculty of Health and Sport Sciences, University of Agder, Kristiansand, Norway
Department of Clinical Research, Sorlandet Hospital, Kristiansand, Norway
Search for more papers by this authorIwona M. Tomaszewska
Department of Medical Education, Jagiellonian University Medical College, Krakow, Poland
Search for more papers by this authorAya Pessing
Department of Oral & Maxillofacial Surgery, Sheba Medical Center, Tel-Hashomer, Israel
Search for more papers by this authorNoam Yarom
Department of Oral Pathology and Oral Medicine, Tel-Aviv University, Tel-Aviv, Israel
Search for more papers by this authorLouise Hooker
Teenage and Young Adult Cancer Service, University Hospital Southampton, Southampton, UK
Search for more papers by this authorAmy Din
School of Health Sciences, University of Southampton, Southampton, UK
Search for more papers by this authorAnne Sophie Darlington
School of Health Sciences, University of Southampton, Southampton, UK
Search for more papers by this authorthe EORTC Quality of Life Group
Search for more papers by this authorFunding information
This study was funded by the European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Group. The grant was awarded to Dr Anne Sophie Darlington.
Abstract
Objective
Health-related quality of life (HRQoL) concerns of adolescents and young adults (AYAs) aged 14–25 years were compared with those of older adults (26–60 years) with cancer.
Methods
AYAs and older adults receiving curative intent treatment or supportive palliative care for cancer were recruited from eight research centres across Europe. Participants used a rating scale to score the relevance and importance of a list of 77 issues covering 10 areas of HRQoL concern: symptoms; activity restrictions; social; emotional; body image; self-appraisals; outlook on life; lifestyle; treatment-related and life beyond treatment.
Results
HRQoL issues were reviewed by 33 AYAs and 25 older adults. Several issues were recognised as relevant and important across all age groups: symptoms, emotional impact, outlook on life, lifestyle and treatment-related. A number of issues were more relevant or important to AYAs including interrupted education, greater motivation to achieve academic goals, increased maturity, boredom, fertility and change in living situation.
Conclusion
While there is overlap in several of the HRQoL concerns across the age span, it is important that HRQoL measures used with AYAs capture the diverse and unique psychosocial aspects of this developmental stage.
CONFLICT OF INTERESTS
The authors have no conflict of interest to declare.
Supporting Information
| Filename | Description |
|---|---|
| ecc12980-sup-0001-DataS1.docxWord document, 151.3 KB |
Please note: The publisher is not responsible for the content or functionality of any supporting information supplied by the authors. Any queries (other than missing content) should be directed to the corresponding author for the article.
REFERENCES
- Aaronson, N. K., Ahmedzai, S., Bergman, B., Bullinger, M., Cull, A., Duez, N. J., … Takeda, F. (1993). The European Organization for Research and Treatment of Cancer QLQ-C30: A quality of life instrument for use in international clinical trials in oncology. Journal of the National Institute, 85, 365–376. https://doi.org/10.1093/jnci/85.5.365
- Adolescent and Young Adult Oncology Group (2006). Care Imperatives for adolescents and young adults with cancer. Report of the Adolescent and Young Adult Oncology Group: Retrieved from https://www.cancer.gov/types/aya/research/ayao-august-2006.pdf
- Ang, S., Koh, S., Lee, X., & Shorey, S. (2018). Experiences of adolescents living with cancer: A descriptive qualitative study. Journal of Child Health Care. https://doi.org/10.1177/1367493518763109
- Avis, N. E., Crawford, S., & Manuel, J. (2005). Quality of life among younger women with breast cancer. Journal of Clinical Oncology, 23, 3322–3330. https://doi.org/10.1200/JCO.2005.05.130
- Bansal, M., Sharma, K. K., Vatsa, M.,& Bakhshi, S. (2013). Comparison of health- related quality of life of children during maintenance therapy with acute lymphoblastic leukemia versus siblings and healthy children in India. Leukemia and Lymphoma, 54(5), 1035–1041.
- Biolcati, R., Mancini, G., & Trombini, E. (2018). Proneness to boredom and risk behaviors during adolescents’ free time. Psychological Reports, 121, 303–323. https://doi.org/10.1177/0033294117724447
- Birch, J. M., Alston, R. D., Kelsey, A. M., Quinn, M. J., Babb, P., & McNally, R. J. (2002). Classification and incidence of cancers in adolescents and young adults in England . British Journal of Cancer, 87, 1267–1274.
- Bleyer, A. (2005). The adolescent and young adult gap in cancer care and outcome. Current Problems in Pediatriatric and Adolescent Health Care, 35, 182–217. https://doi.org/10.1016/j.cppeds.2005.02.001
- A. Bleyer, M. O’Leary, R. Barr, & L. A. G. Ries (Eds.) (2006). Cancer epidemiology in older adolescents and young adults 15 to 29 years of age, including SEER incidence and survival: 1975–2000. Bethesda, MD: National Cancer Institute. NIH Pub. No. 06-5767.
- A. Bowling (Ed.) (2001). Measuring disease: A review of disease-specific quality of life measurement scale, 2nd ed. (pp. 1–22). Buckingham, UK: Open University Press.
- Burgoyne, M. J., Bingen, K., Leuck, J., Dasgupta, M., Ryan, P., & Hoffmann, R. G. (2015). Cancer-related distress in young adults compared to middle-aged and senior adults. Journal of Adolescent and Young Adult Oncology, 4, 56–63. https://doi.org/10.1089/jayao.2014.0005
- Chen, I., Pasalic, D., Fischer-Valuck, B., Frangoul, H., DeWees, T., Shinohara, E. T., & Perkins, S. M. (2018). Disparity in outcomes for adolescent and young adult patients diagnosed with pediatric solid tumors across 4 decades. American Journal of Clinical Oncology, 41, 471–475. https://doi.org/10.1097/coc.0000000000000304
- Chiang, Y. C., Yeh, C. H., Wang, K. W. K., & Yang, C. P. (2009). The experience of cancer-related fatigue in Taiwanese children. European Journal of Cancer Care, 18, 43–49. https://doi.org/10.1111/j.1365-2354.2007.00884.x
- Croucher, C., Whelan, J. S., Moller, H., & Davies, E. A. (2009). Trends in the incidence and survival of cancer in teenagers and young adults: Regional analysis for South East England 1960–2002. Clinical Oncology, 21, 417–424. https://doi.org/10.1016/j.clon.2009.02.006
- Daniel, L. C., Barakat, L. P., Brumley, L. D., & Schwartz, L. A. (2014). Health-related hindrance of personal goals of adolescents with cancer: The role of the interaction of race/ethnicity and income. Journal of Clinical Psychology in Medical Settings, 21, 155–164. https://doi.org/10.1007/s10880-014-9390-7
- Eden, T. (2006). Keynote comment: Challenges of teenage and young adult oncology. Lancet Oncology, 7, 612–613.
- Enskär, K., Carlsson, M., Golsäter, M., & Hamrin, E. (1997). Symptom distress and life situation in adolescents with cancer. Cancer Nursing, 20, 23–33. https://doi.org/10.1097/00002820-199702000-00004
- Ericsson, K. A., & Simon, H. A. (1980). Verbal reports as data. Psychological Review, 87(3), 215–251. https://doi.org/10.1037/0033-295X.87.3.215
- Erikson, E. H. (1963). Childhood and society, 2nd ed. New York, NY: Norton.
- Hinds, P. S., Gattuso, J. S., Fletcher, A., Baker, E., Coleman, B., Jackson, T., … Pui, C. H. (2004). Quality of life as conveyed by pediatric patients with cancer. Quality of Life Research, 13, 761–772. https://doi.org/10.1023/B:QURE.0000021697.43165.87
- Johnson, C., Aaronson, N., Blazeby, J., Bottomley, A., Fayers, P.,Koller, M., … Young, T. (2011). Guidelines for developing questionnaire modules. Available at http://groups.eortc.be/qol/documentation_manuals.htm
- Johnson, C., Fitzsimmons, D., Gilbert, J., Arrarras, J. I., Hammerlid, E., Bredart, A., … EORTC Quality of Life Group. (2010). Development of the European Organisation for Research and Treatment of Cancer quality of life questionnaire module for older people with cancer: The EORTC QLQ-ELD15. European Journal of Cancer, 46, 2242–2252. https://doi.org/10.1016/j.ejca.2010.04.014
- Keegan, T. H., Ries, L. A., Barr, R. D., Geiger, A. M., Dahlke, D. V., Pollock, B. H., & Bleyer, W. A. (2016). National Cancer Institute Next Steps for Adolescent and Young Adult Oncology Epidemiology Working Group. Comparison of cancer survival trends in the United States of adolescents and young adults with those in children and older adults. Cancer, 122, 1009–1016. https://doi.org/10.1002/cncr.29869
- Lang, M. J., David, V., & Giese-Davis, J. (2015). The Age conundrum: A scoping review of younger age or adolescent and young adult as a risk factor for clinical distress, depression, or anxiety in cancer. Journal of Adolescent and Young Adult Oncology, 4, 157–173. https://doi.org/10.1089/jayao.2015.0005
- Mao, J. J., Armstrong, K., Bowman, M. A., Xie, S. X., Kadakia, R., & Farrar, J. T. (2007). Symptom burden among cancer survivors: Impact of age and comorbidity. The Journal of the American Board of Family Medicine, 20, 434–443. https://doi.org/10.3122/jabfm.2007.05.060225
- Marris, S., Morgan, S., & Stark, D. (2011). “Listening to patients”: What is the value of age-appropriate care to teenagers and young adults with cancer? European Journal of Cancer Care, 20, 145–151.
- Mols, F., Schoormans, D., Smit, J. W. A., Netea-Maier, R. T., Links, T. P., van der Graaf, W. T. A., & Husson, O. (2018). Age-related differences in health-related quality of life among thyroid cancer survivors compared with a normative sample: Results from the PROFILES Registry. Head and Neck, 40(10), 2235–2245. https://doi.org/10.1002/hed.25325
- Momani, T. G., Mandrell, B. N., Gattuso, J. S., West, N. K., Taylor, S. L., & Hinds, P. S. (2015). Children’s perspective on health-related quality of life during active treatment for acute lymphoblastic leukemia. Cancer Nursing, 2015(38), 50–59. https://doi.org/10.1097/NCC.0000000000000174
- Moody, K., Meyer, M., Mancuso, C. A., Charlson, M., & Robbins, L. (2006). Exploring concerns of children with cancer. Supportive Care in Cancer, 14, 960–966. https://doi.org/10.1007/s00520-006-0024-y
- Oerlemans, S., Nijziel, M. R., & van de Poll-Franse, L. V. (2015). Age-related differences in quality of life among patients with diffuse large B-cell lymphoma. Cancer, 121, 2857–2858. https://doi.org/10.1002/cncr.29427
- Oken, M. M., Creech, R. H., Tormey, D. C., Horton, J., Davis, T. E., McFadden, E. T., & Carbone, P. P. (1982). Toxicity and response criteria of the Eastern cooperative oncology group. American Journal of Clinical Oncology, 5, 649–655. https://doi.org/10.1097/00000421-198212000-00014
- Park, E. M., & Rosenstein, D. L. (2015). Depression in adolescents and young adults with cancer. Dialogues in Clinical Neuroscience, 17, 171–180.
- Quinten, C., Coens, C., Ghislain, I., Zikos, E., Sprangers, M. A. G., Ringash, J., … Bottomley, A. (2015). The effects of age on health-related quality of life in cancer populations: A pooled analysis of randomized controlled trials using the European Organisation for Research and Treatment of Cancer (EORTC) QLQ-C30 involving 6024 cancer patients. European Journal of Cancer, 51, 2808–2819. https://doi.org/10.1016/j.ejca.2015.08.027
- Sandeberg, M., Johansson, E., Björk, O., & Wettergren, L. (2008). Health-related quality of life relates to school attendance in children on treatment for cancer. Journal of Pediatric Oncology Nursing, 25, 265–274. https://doi.org/10.1177/1043454208321119
- Sansom-Daly, U. M., & Wakefield, C. (2013). Distress and adjustment among adolescents and young adults with cancer: An empirical and conceptual review. Translational Pediatrics, 2, 167–197.
- Snöbohm, C., & Heiwe, S. (2013). Stressors, coping and coping strategies among young adults, with cancer. World Journal of Psycho-Social Oncology, 3, 15–28.
- Sodergren, S. C., Husson, O., Robinson, J., Rohde, G. E., Tomaszewska, I. M., Vivat, B., … EORTC Quality of Life Group (2017). Systematic Review of the health-related Quality of Life Issues Facing Adolescents and Young Adults with Cancer Quality of Life Research, 26, 1659–1672. https://doi.org/10.1007/s11136-017-1520-x
- Sodergren, S. C., Husson, O., Rohde, G., Tomasewska, I., Vivat, B., Yarom, N., … Darlington, A. S. (2018). A life put on pause: An exploration of the health-related quality of life issues relevant to adolescents and young adults with cancer. Journal of Adolescent and Young Adult Oncology, 7, 453–464. https://doi.org/10.1089/jayao.2017.0110
- Steliarova-Foucher, E., O’Callaghan, M., Ferlay, J., Masuyer, E., Rosso, S., Forman, D., … Comber, H. (2015). The European cancer observatory: A new data resource. European Journal of Cancer, 51, 1131–1143. https://doi.org/10.1016/j.ejca.2014.01.027
- Stiller, C. A., Desandes, E., Danon, S. E., Izarzugaza, I., Ratiu, A., Vassileva-Valerianova, Z., & Steliarova-Foucher, E. (2006). Cancer incidence and survival in European adolescents (1978–1997). Report from the Automated Childhood Cancer Information System project. European Journal of Cancer, 42, 2006–2018. https://doi.org/10.1016/j.ejca.2006.06.002
- Stinson, J., Jibb, L., Greenberg, M., Barrera, M., Luca, S., White, M., & Gupta, A. (2015). A qualitative study of the impact of cancer on romantic relationships, sexual relationships, and fertility: Perspectives of Canadian adolescents and parents during and after treatment. Journal of Adolescent and Young Adult Oncology, 4, 84–90. https://doi.org/10.1089/jayao.2014.0036
- Thomas, D. M., Albritton, K. H., & Ferrari, A. (2010). Adolescent and young adult oncology: An emerging field. Journal of Clinical Oncology, 28, 4781–4782. https://doi.org/10.1200/JCO.2010.30.5128
- Treadgold, C., & Kuperberg, A. (2010). Been there, done that wrote the blog: The choices and challenges of supporting adolescents and young adults with cancer. Journal of Clinical Oncology, 228(32), 4842–4849. https://doi.org/10.1200/JCO.2009.23.0516
- van der Horst, M., Winther, J. F., & Olsen, J. H. (2006). Cancer incidence in the age range 0–34 years: Historical and actual status in Denmark. International Journal of Cancer, 118, 2816–2826. https://doi.org/10.1002/ijc.21566
- Varni, J. W., Burwinkle, T. M., Katz, E. R., Meeske, K., & Dickinson, P. (2002). The PedsQL in pediatric cancer: Reliability and validity of the pediatric quality of life inventory generic core scales, multidimensional fatigue scale, and cancer module. Cancer, 94, 2090–2106. https://doi.org/10.1002/cncr.10428
- Wicks, L., & Mitchell, A. (2010). The adolescent cancer experience: Loss of control and benefit finding. European Journal of Cancer Care, 19, 778–785. https://doi.org/10.1111/j.1365-2354.2009.01139.x
- Zebrack, B. J. (2011). Psychological, social, and behavioral issues for young adults with cancer. Cancer, 117, 2289–2294. https://doi.org/10.1002/cncr.26056
- Zebrack, B. J., Block, R., Hayes-Lattin, B., Embry, L., Aguilar, C., Meeske, K. A., … Cole, S. (2013). Psychosocial service use and unmet need among recently diagnosed adolescent and young adult cancer patients. Cancer, 119, 201–214. https://doi.org/10.1002/cncr.27713
