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Assessing information and service needs of young adults with cancer at a single institution: the importance of information on cancer diagnosis, fertility preservation, diet, and exercise

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Abstract

Background

Young adults (YA) with cancer have unique psychosocial and medical needs. The objective of this study was to identify information and service needs important to YA cancer patients.

Methods

A supportive care needs survey was administered to ambulatory patients (<age 35 years) who were within 5 years of completing therapy at an adult hospital. Participants were asked to rate the importance of 18 sources of information or resources on a scale from 1 to 10. The relationship between gender, type of cancer, current treatment status, and marital status on the importance of these factors was explored using ANOVA.

Results

Median age of 243 respondents was 28 years (range 17–35); 61 % male. The most common diagnoses were: lymphoma (28 %), leukemia (19 %), testis (16 %), CNS (9.5 %), and sarcoma (8.6 %). Forty percent were currently receiving treatment; the majority were single/never married (67 %). Thirty-eight percent of respondents felt it was important or very important to receive care in a dedicated unit with other young people. More than 80 % rated the following items at least 8/10 in importance: information on their specific malignancy (treatment, risk of recurrence), effects of treatment on fertility, information on maintaining a healthy diet, and exercise/physical fitness during cancer treatment. Women were more likely to consider information/service needs more important than men.

Conclusions

YA’s have clear supportive care preferences and needs. Developing programs that incorporate the services identified as important should improve quality of life, psychosocial adjustment, and other outcomes during and after cancer therapy.

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References

  1. Bleyer A (2007) Young adult oncology: the patients and their survival challenges. CA Cancer J Clin 57(4):242–255

    Article  Google Scholar 

  2. Canadian Cancer Society/National Cancer Institute of Canada (2007) Canadian Cancer Society/National Cancer Institute of Canada: Canadian Cancer Statistics 2008 Toronto, Canada; April 2008. ISSN 0835–2976

  3. Bleyer WA (2002) Cancer in older adolescents and young adults: epidemiology, diagnosis, treatment, survival, and importance of clinical trials. Med Pediatr Oncol 38(1):1–10

    Article  Google Scholar 

  4. Enskar K, von Essen L (2007) Prevalence of aspects of distress, coping, support and care among adolescents and young adults undergoing and being off cancer treatment. Eur J Oncol Nurs 11(5):400–408

    Article  Google Scholar 

  5. Corey AL, Haase JE, Azzouz F et al (2008) Social support and symptom distress in adolescents/young adults with cancer. J Pediatr Oncol Nurs 25(5):275–284

    Article  Google Scholar 

  6. Thomas DM, Albritton KH, Ferrari A (2010) Adolescent and young adult oncology: an emerging field. J Clin Oncol 28(32):4781–4782

    Article  Google Scholar 

  7. Fernandez C, Fraser GAM, Freeman C, Grunfeld E, Gupta A, Mery LS, De Pauw S, Schacter B (2011) Principles and recommendations for the provision of healthcare in Canada to adolescent and young adult-aged cancer patients and survivors. J Adolesc Young Adult Oncol 1(1):53–59

    Article  Google Scholar 

  8. Nathan PC, Hayes-Lattin B, Sisler JJ et al (2011) Critical issues in transition and survivorship for adolescents and young adults with cancers. Cancer 117(10 Suppl):2335–2341

    Article  Google Scholar 

  9. Bauld C, Anderson V, Arnold J (1998) Psychosocial aspects of adolescent cancer survival. J Paediatr Child Health 34(2):120–126

    Article  CAS  Google Scholar 

  10. Hokkanen H, Eriksson E, Ahonen O et al (2004) Adolescents with cancer: experience of life and how it could be made easier. Cancer Nurs 27(4):325–335

    Article  Google Scholar 

  11. Zebrack B (2008) Information and service needs for young adult cancer patients. Support Care Cancer 16(12):1353–1360

    Article  Google Scholar 

  12. Zebrack B, Bleyer A, Albritton K et al (2006) Assessing the health care needs of adolescent and young adult cancer patients and survivors. Cancer 107(12):2915–2923

    Article  Google Scholar 

  13. Zebrack BJ, Block R, Hayes-Lattin B et al (2012) Psychosocial service use and unmet need among recently diagnosed adolescent and young adult cancer patients. Cancer 119(1):201–214. doi:10.1002/cncr.27713

    Article  Google Scholar 

  14. Veal GJ, Hartford CM, Stewart CF (2010) Clinical pharmacology in the adolescent oncology patient. J Clin Oncol 28(32):4790–4799

    Article  CAS  Google Scholar 

  15. De P, Ellison LF, Barr RD et al (2011) Canadian adolescents and young adults with cancer: opportunity to improve coordination and level of care. Cmaj 183(3):E187–E194

    Article  Google Scholar 

  16. Whelan J (2003) Where should teenagers with cancer be treated? Eur J Cancer 39(18):2573–2578

    Article  CAS  Google Scholar 

  17. Kelly D, Mullhall A, Pearce S (2003) Adolescent cancer—the need to evaluate current service provision in the UK. Eur J Oncol Nurs 7(1):53–58

    Article  Google Scholar 

  18. Perneger TV (1998) What’s wrong with Bonferroni adjustments. BMJ 316(7139):1236–1238

    Article  CAS  Google Scholar 

  19. Sanders SL, Bantum EO, Owen JE et al (2010) Supportive care needs in patients with lung cancer. Psychooncology 19(5):480–489

    Article  Google Scholar 

  20. Huyghe E, Sui D, Odensky E et al (2009) Needs assessment survey to justify establishing a reproductive health clinic at a comprehensive cancer center. J Sex Med 6(1):149–163

    Article  Google Scholar 

  21. Parsons HM, Harlan LC, Seibel NL et al (2011) Clinical trial participation and time to treatment among adolescents and young adults with cancer: does age at diagnosis or insurance make a difference? J Clin Oncol 29(30):4045–4053

    Article  Google Scholar 

  22. Rowan K (2010) Fertility preservation during treatment is a growing issue for women. J Natl Cancer Inst 102(5):294–296

    Article  Google Scholar 

  23. Armuand GM, Rodriguez-Wallberg KA, Wettergren L et al (2012) Sex differences in fertility-related information received by young adult cancer survivors. J Clin Oncol 30(17):2147–2153

    Article  Google Scholar 

  24. King JW, Davies MC, Roche N et al (2012) Fertility preservation in women undergoing treatment for breast cancer in the U.K.: a questionnaire study. Oncologist 17(7):910–916

    Article  Google Scholar 

  25. Letourneau JM, Ebbel EE, Katz PP et al (2012) Pretreatment fertility counseling and fertility preservation improve quality of life in reproductive age women with cancer. Cancer 118(6):1710–1717

    Article  Google Scholar 

  26. Balthazar U, Deal AM, Fritz MA et al (2012) The current fertility preservation consultation model: are we adequately informing cancer patients of their options? Hum Reprod 27(8):2413–2419

    Article  Google Scholar 

  27. Letourneau JM, Ebbel EE, Katz PP et al (2011) Pretreatment fertility counseling and fertility preservation improve quality of life in reproductive age women with cancer. Cancer. doi:10.1002/cncr.26459

    Article  Google Scholar 

  28. Morey MC, Snyder DC, Sloane R et al (2009) Effects of home-based diet and exercise on functional outcomes among older, overweight long-term cancer survivors: RENEW: a randomized controlled trial. JAMA 301(18):1883–1891

    Article  CAS  Google Scholar 

  29. Demark-Wahnefried W, Morey MC, Sloane R et al (2012) Reach out to enhance wellness home-based diet-exercise intervention promotes reproducible and sustainable long-term improvements in health behaviors, body weight, and physical functioning in older, overweight/obese cancer survivors. J Clin Oncol 30(19):2354–3261. doi:10.1200/JCO.2011.40.0895

    Article  Google Scholar 

  30. Brade AM, Kim SW, Chung C, Wan JF, Southwood B, Chaudary N, Wang L, Milosevic M, Oza AM (2011) Final results: a phase I study of sorafenib and palliative radiation in patients with malignancy in the thorax, abdomen, or pelvis. J Clin Oncol 29(15):e13602

    Article  Google Scholar 

  31. Belanger LJ, Plotnikoff RC, Clark A et al (2012) A survey of physical activity programming and counseling preferences in young-adult cancer survivors. Cancer Nurs 35(1):48–54

    Article  Google Scholar 

  32. McMillan EM, Newhouse IJ (2011) Exercise is an effective treatment modality for reducing cancer-related fatigue and improving physical capacity in cancer patients and survivors: a meta-analysis. Appl Physiol Nutr Metab 36(6):892–903

    Article  Google Scholar 

  33. Barbaric M, Brooks E, Moore L et al (2010) Effects of physical activity on cancer survival: a systematic review. Physiother Can 62(1):25–34

    Article  Google Scholar 

  34. Klein-Geltink J, Shaw AK, Morrison HI et al (2005) Use of paediatric versus adult oncology treatment centres by adolescents 15–19 years old: the Canadian Childhood Cancer Surveillance and Control Program. Eur J Cancer 41(3):404–410

    Article  CAS  Google Scholar 

  35. Tomlinson D, Capra M, Gammon J et al (2006) Parental decision making in pediatric cancer end-of-life care: using focus group methodology as a prephase to seek participant design input. Eur J Oncol Nurs 10(3):198–206

    Article  Google Scholar 

  36. Senior K (2006) Teenagers with cancer: an improving picture. Lancet Oncol 7(5):366

    Article  Google Scholar 

  37. Green DM, Kawashima T, Stovall M et al (2009) Fertility of female survivors of childhood cancer: a report from the childhood cancer survivor study. J Clin Oncol 27(16):2677–2685

    Article  CAS  Google Scholar 

  38. Travis L, Beard C, Allan JM, Dahl A, Feldman DR et al (2010) Testicular cancer survivorship: research strategies and recommendations. J Natl Cancer Inst 102(15):1114–1130

    Article  Google Scholar 

  39. Stinson JN SL, Gupta A, Dettmer E, White ME, Baker N (2013) Perspectives on living with cancer: exploring the information and self-management needs of adolescents with cancer and their parents. J Pediatr Hematol Oncol (in press)

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Acknowledgments

The authors would like to acknowledge Michele Petrovic with her help in administering the surveys and Derek Stephens for his initial statistical consultation. This research was supported in part by the Ontario Ministry of Health and Long Term Care. The views expressed do not necessarily reflect those of the OMOHLTC.

Conflict of interest

There are no financial disclosures.

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Authors and Affiliations

  1. Division of Medical Oncology, Princess Margaret Cancer Center, Toronto, ON, Canada

    Abha A. Gupta

  2. Department of Psychosocial Oncology and Palliative Care, Princess Margaret Cancer Center, Toronto, ON, Canada

    Kim Edelstein & Norma D’Agostino

  3. Ontario Cancer Institute, Princess Margaret Cancer Center, Toronto, ON, Canada

    Kim Edelstein

  4. Department of Pediatrics, University of Toronto, Toronto, ON, Canada

    Abha A. Gupta

  5. Department of Psychiatry, University of Toronto, Toronto, ON, Canada

    Kim Edelstein & Norma D’Agostino

  6. Department of Biostatistics, Princess Margaret Cancer Center, Toronto, ON, Canada

    Alisha Albert-Green

  7. Princess Margaret Cancer Center, 610 University Ave., Toronto, ON, M5G 2M9, Canada

    Abha A. Gupta

Authors
  1. Abha A. Gupta
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  2. Kim Edelstein
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Correspondence to Abha A. Gupta.

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Gupta, A.A., Edelstein, K., Albert-Green, A. et al. Assessing information and service needs of young adults with cancer at a single institution: the importance of information on cancer diagnosis, fertility preservation, diet, and exercise. Support Care Cancer 21, 2477–2484 (2013). https://doi.org/10.1007/s00520-013-1809-4

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  • DOI: https://doi.org/10.1007/s00520-013-1809-4

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