Needs of adolescents and young adults after cancer treatment: a systematic review
S. Galán MSc
Doctoral student
Unit for the Study and Treatment of Pain – ALGOS, Tarragona, Catalonia, Spain
Department of Psychology, Research Center for Behavior Assessment (CRAMC), Tarragona, Catalonia, Spain
Institut d'Investigació Sanitària Pere Virgili, Universitat Rovira i Virgili, Tarragona, Catalonia, Spain
Search for more papers by this authorR. de la Vega PhD
Postdoctoral fellow
Unit for the Study and Treatment of Pain – ALGOS, Tarragona, Catalonia, Spain
Department of Psychology, Research Center for Behavior Assessment (CRAMC), Tarragona, Catalonia, Spain
Institut d'Investigació Sanitària Pere Virgili, Universitat Rovira i Virgili, Tarragona, Catalonia, Spain
Search for more papers by this authorCorresponding Author
J. Miró PhD
Professor and Director, Chair in Pediatric Pain URV-Fundación Grünenthal
Unit for the Study and Treatment of Pain – ALGOS, Tarragona, Catalonia, Spain
Department of Psychology, Research Center for Behavior Assessment (CRAMC), Tarragona, Catalonia, Spain
Institut d'Investigació Sanitària Pere Virgili, Universitat Rovira i Virgili, Tarragona, Catalonia, Spain
Correspondence
Jordi Miró, Departament de Psicologia, Universitat Rovira i Virgili, Tarragona, Catalonia, Spain.
Email: [email protected]
Search for more papers by this authorS. Galán MSc
Doctoral student
Unit for the Study and Treatment of Pain – ALGOS, Tarragona, Catalonia, Spain
Department of Psychology, Research Center for Behavior Assessment (CRAMC), Tarragona, Catalonia, Spain
Institut d'Investigació Sanitària Pere Virgili, Universitat Rovira i Virgili, Tarragona, Catalonia, Spain
Search for more papers by this authorR. de la Vega PhD
Postdoctoral fellow
Unit for the Study and Treatment of Pain – ALGOS, Tarragona, Catalonia, Spain
Department of Psychology, Research Center for Behavior Assessment (CRAMC), Tarragona, Catalonia, Spain
Institut d'Investigació Sanitària Pere Virgili, Universitat Rovira i Virgili, Tarragona, Catalonia, Spain
Search for more papers by this authorCorresponding Author
J. Miró PhD
Professor and Director, Chair in Pediatric Pain URV-Fundación Grünenthal
Unit for the Study and Treatment of Pain – ALGOS, Tarragona, Catalonia, Spain
Department of Psychology, Research Center for Behavior Assessment (CRAMC), Tarragona, Catalonia, Spain
Institut d'Investigació Sanitària Pere Virgili, Universitat Rovira i Virgili, Tarragona, Catalonia, Spain
Correspondence
Jordi Miró, Departament de Psicologia, Universitat Rovira i Virgili, Tarragona, Catalonia, Spain.
Email: [email protected]
Search for more papers by this authorAbstract
The aim of this study was to conduct a systematic review of the literature on the needs of adolescents and young adults (AYAs) who have survived cancer. PRISMA recommendations for systematic reviews were followed, and the quality of the studies reviewed was also assessed with a specific checklist. The following databases were searched from their inception to May 2016: ERIC, EMBASE, MEDLINE, PILOTS, ProQuest, PsycARTICLES, PsycBOOKS, psycCRITIQUES, PsycINFO, Social Services Abstracts and Sociological Abstracts. Fourteen studies were identified and analysed. The results show that the most common needs for AYA cancer survivors are as follows: “individualised information and advice,” “counselling and psychological support” and “social support, and social relationships.” These results are different from those reported in studies on adults, which shows the importance of specifically addressing the needs of this population. In order to advance in this emerging area of study and facilitate the work of health professionals, it is crucial to reach a consensus on two central issues: how the needs of AYA survivors should be conceptualised and what the most valid and reliable procedure for assessing patient's needs is.
References
- Alderfer, M. A., Navsaria, N., & Kazak, A. E. (2009). Family functioning and posttraumatic stress disorder in adolescent survivors of childhood cancer. Journal of Family Psychology, 23, 717–725.
- Bleyer, M. D. (2007). Adolescent and young adult (AYA) oncology: The first A. Pediatric Hematology and Oncology, 24, 325–336.
- Bleyer, A., Barr, R., Hayes-Lattin, B., Thomas, D., Ellis, C., & Anderson, B., on behalf of the Biology and Clinical Trials Subgroups of the US National Cancer Institute Progress Review Group in Adolescent and Young Adult Oncology (2008). The distinctive biology of cancer in adolescents and young adults. Nature Reviews Cancer, 8, 288–298.
- Compas, B. E., Jaser, S. S., Dunn, M. J., & Rodriguez, E. M. (2012). Coping with chronic illness in childhood and adolescence. Annual Review of Clinical Psychology, 8, 455–480.
- Cox, C. L., Sherrill-Mittleman, D. A., Riley, B. B., Hudson, M. M., Williams, L. J., Leisenring, W. M., … & Robison, L. L. (2013). Development of a comprehensive health-related needs assessment for adult survivors of childhood cancer. Journal of Cancer Survivorship: Research and Practice, 7, 1–19.
- D'Agostino, N. M., & Edelstein, K. (2013). Psychosocial challenges and resource needs of young adult cancer survivors: Implications for program development. Journal of Psychosocial Oncology, 31, 585–600.
- De Angelis, R., Francisci, S., Baili, P., Marchesib, F., Roazzic, P., Belotd, A., … & Capocacciaa, R, the EUROCARE Working Group (2014). Cancer survival in Europe 1999–2007 by country and age: Results of EUROCARE-5—A population-based study. The Lancet Oncology, 15, 23–34.
- Easley, J., Miedema, B., & Robinson, L. (2013). It's the “Good” cancer, so who cares? Perceived lack of support among young thyroid cancer survivors. Oncology Nursing Forum, 40, 596–600.
- Feuerstein, M. (2007). Defining cancer survivorship. Journal of Cancer Survivorship: Research and Practice, 1, 5–7.
- Gatta, G., Zigon, G., Capocaccia, C., Willem Coebergh, J., Desandes, E., Kaatsch, P., … & Stillerh, C.A., the EUROCARE Working Group (2009). Survival of European children and young adults with cancer diagnosed 1995–2002. European Journal of Cancer, 45, 992–1005.
- Geiger, A. M., & Castellino, S. M. (2011). Delineating the age ranges used to define adolescents and young adults. Journal of Clinical Oncology, 29, 492–493.
- Gianinazzi, M. E., Essig, S., Rueegg, C. S., von der Weid, N. X., Brazzola, P., Kuehni, C. E., & Michel, G., for the Swiss Paediatric Oncology Group (SPOG). (2014). Information provision and information needs in adult survivors of childhood cancer. Pediatric Blood and Cancer, 61, 312–318.
- Hoekstra, R. A, Heins, M. J., & Korevaar, J. C. (2014). Health care needs of cancer survivors in general practice: A systematic review. BMC Family Practice, 15, 94.
- Journal of Adolescent and Young Adult Oncology - Editors (2011). What should the age range be for AYA oncology? Journal of Adolescent and Young Adult Oncology, 1, 3–10. doi:10.1089/jayao.2011.1505
- Keegan, T. H. M., Lichtensztajn, D. Y., Kato, I., Kent, E. E., Wu, X.-C., West, M. M., … & Smith, A. W., the AYA HOPE Study Collaborative Group (2012). Unmet adolescent and young adult cancer survivors information and service needs: A population-based cancer registry study. Journal of Cancer Survivorship, 6, 239–250.
- Khan, N. F., Rose, P. W., & Evans, J. (2012). Interpretation and acceptance of the term “cancer survivor”: A United Kingdom-based qualitative study. European Journal of Cancer Care, 21, 177–186.
- Knijnenburg, S. L., Kremer, L. C., van den Bos, C., Braam, K. I., & Jaspers, M. W. M. (2010). Health information needs of childhood cancer survivors and their family. Pediatric Blood and Cancer, 54, 123–127.
- Lewandowski, A. S., Palermo, T. M., Stinson, J., Handley, S., & Chambers, C. T. (2010). Systematic review of family functioning in families of children and adolescents with chronic pain. The Journal of Pain, 11, 1027–1038.
- Ljungman, L., Cervall, M., Grönqvist, H., Ljótsson, B., Ljungman, G., & von Essen, L. (2014). Long-term positive and negative psychological late effects for parents of childhood cancer survivors: A systematic review. PLoS ONE, 9, e103340.
- McClellan, W., Klemp, J. R., Krebill, H., Ryan, R., Nelson, E. L., Panicker, J., … & Stegenga, K. (2013). Understanding the functional late effects and informational needs of adult survivors of childhood cancer. Oncology Nursing Forum, 40, 254–262.
- Miedema, B., Easley, J., & Robinson, L. M. (2013). Do current cancer follow-up care practices meet the needs of young adult cancer survivors in Canada? A qualitative inquiry Current Oncology, 20, 14–22.
- Millar, B., Patterson, P., & Desille, N. (2010). Emerging adulthood and cancer: How unmet needs vary with time-since-treatment. Palliative and Supportive Care, 8, 151–158.
- Miller, K., Merry, B., & Miller, J. (2008). Seasons of survivorship revisited. The Cancer Journal, 14, 369–374.
- Miró, J. (1990). Respuesta al dolor inducido experimentalmente: Determinantes psicológicos. Barcelona: Publicacions de la Universitat Autònoma de Barcelona.
- Miró, J. (1994). Preparació psicològica per a intervencions quirúrgiques. Barcelona: Publicacions de la Universitat Autònoma de Barcelona.
- Moher, D., Liberati, A., Tetzlaff, J., & Altman, D.G., the PRISMA Group (2009). Reprint — preferred reporting meta-analyses: The PRISMA statement. Physical Therapy, 89, 873–880.
- Osborn, R. L., Demoncada, A. C., & Feuerstein, M. (2006). Psychosocial interventions for depression, anxiety, and quality of life in cancer survivors: Meta-analyses. The International Journal of Psychiatry in Medicine, 36, 13–34.
- Rabin, C., Simson, N., Morrow, K., & Pinto, B. (2011). Behavioral and psychosocial program needs of young adult cancer survivors. Qualitative Health Research, 21, 796–806.
- Rabin, C., Simson, N., Morrow, K., & Pinto, B. (2013). Intervention format and delivery preferences among young adult cancer survivors. International Journal of Behavioral Medicine, 20, 304–310.
- Shaitelman, S. F., Cromwell, K. D., Stout, N. L., Armer, J. M., Lasinski, B. B., & Cormier, J. N. (2015). Recent progress in the treatment and prevention of cancer-related lymphedema. CA: A Cancer Journal for Clinicians, 65, 55–81.
- Smith, M. A., Altekruse, S. F., Adamson, P. C., Reaman, G. H., & Seibel, N. L. (2014). Declining childhood and adolescent cancer mortality. Cancer, 120, 2497–2506.
- Steliarova-Foucher, E., Stiller, C., Kaatsch, P., Berrino, F., Coebergh, J. W., Lacour, B., & Parkin, M. (2004). Geographical patterns and time trends of cancer incidence and survival among children and adolescents in Europe since the 1970s (the ACCIS project): An epidemiological study. The Lancet, 364, 2097–2105.
- Sundberg, K. K., Lampic, C., Arvidson, J., & Wettergren, L. (2012). Sense of coherence and need for support among long-term survivors of childhood cancer. Cancer Nursing, 35, E43–E49.
- Tai, E., Buchanan, N., Townsend, J., Fairley, T., Moore, A., & Richardson, L. C. (2012). Health status of adolescent and young adult cancer survivors. Cancer, 118, 4884–4891.
- Tsangaris, E., Johnson, J., Taylor, R., Fern, L., Bryant-Lukosius, D., Barr, R., … & Klassen, A. (2014). Identifying the supportive care needs of adolescent and young adult survivors of cancer: A qualitative analysis and systematic literature review. Supportive Care in Cancer, 22, 947–959.
- Wakefield, C. E., McLoone, J., Goodenough, B., Lenthen, K., Cairns, D. R., & Cohn, R. J. (2010). The psychosocial impact of completing childhood cancer treatment: A systematic review of the literature. Journal of Pediatric Psychology, 35, 262–274.
- Woodward, E., Jessop, M., Glaser, A., & Stark, D. (2011). Late effects in survivors of teenage and young adult cancer: Does age matter? Annals of Oncology, 22, 2561–2568.
- World Health Organization (2002). National cancer control programmes: Policies and managerial guidelines ( 2nd edn). Geneva: Health & Development Networks (HDN).
- Zebrack, B. (2009). Information and service needs for young adult cancer survivors. Supportive Care in Cancer, 17, 349–357.
- Zebrack, B. J., Mills, J., & Weitzman, T. S. (2007). Health and supportive care needs of young adult cancer patients and survivors. Journal of Cancer Survivorship, 1, 137–145.
- Zebrack, B., Bleyer, A., Albritton, K., Medearis, S., & Tang, J. (2006). Assessing the health care needs of adolescent and young adult cancer patients and survivors. Cancer, 107, 2915–2923.
