Supportive Care in Cancer

, Volume 25, Issue 7, pp 2229–2239 | Cite as

Unmet need for healthcare services in adolescents and young adults with cancer and their parent carers

  • Susan M. SawyerEmail author
  • Robyn McNeil
  • Maria McCarthy
  • Lisa Orme
  • Kate Thompson
  • Sarah Drew
  • David Dunt
Original Article



Cancer in adolescents in and young adults (AYA) has the potential to disrupt health, well-being and developmental trajectories. This study aimed to describe the healthcare support service needs of AYAs with cancer and parent carers and to explore the association of unmet need and emotional distress.


As part of a national Australian survey of 15–25 year olds with cancer and a nominated parent carer, 196 AYAs reported total and unmet need for 10 clinical services and 204 parents reported on their child’s and their own healthcare service needs. Proportions of total and unmet need for specific clinical services are reported. The association of unmet service needs and distress (measured using the Posttraumatic Stress Disorder Checklist) was also examined.


AYAs and parent carers expressed high total need for clinical services during treatment. Leading AYA unmet needs were for an exercise therapist (37%), genetic counsellor (30%), dietitian (26%), peer support group (26%) and educational and vocational advisor (24%). After treatment, AYAs and parents had fewer total needs. However, 60% of AYA and 38% of parents had two or more unmet needs, similar to during treatment. Female gender and receiving treatment in an adult setting were significantly associated with unmet need for clinical services. After treatment, higher distress levels in AYAs and parents were associated with two or more unmet service needs.


AYAs and parents had high levels of total and unmet service need, which were associated with greater emotional distress. These results highlight opportunities to re-orientate services to better meet AYA and parent needs.


Cancer Adolescent and young adult Unmet needs Emotional distress Psychosocial support 



We wish to acknowledge the generosity of the Australian young people and their families who participated in this study. This project was funded by a grant from Cancer Australia (APP1010977) in association with Beyond Blue and Canteen through the Priority-Driven Collaborative Cancer Research Scheme. Additional funding was gratefully received from Redkite, the Royal Children’s Hospital Foundation, ONTrac Adolescent & Young Adult Cancer Service, Peter MacCallum and the Victorian Department of Health (Cancer Strategy and Planning branch). Dr. McCarthy is funded via a Murdoch Childrens Research Institute Career Development Award. The Murdoch Childrens Research Institute is supported by the Victorian Government’s Operational Infrastructure Support Program.

Compliance with ethical standards

Conflict of interest

The authors declare that they have no conflict of interest.


  1. 1.
    Patton GC, Sawyer SM, Santelli J et al (2016) Our future: a Lancet commission on adolescent health and wellbeing. Lancet. doi: 10.1016/ S0140-6736(16)00579-1 Google Scholar
  2. 2.
    Sawyer SM, Drew S, Yeo M, Britto M (2007) Adolescents with a chronic condition: challenges living, challenges treating. Lancet 369(9571):1481–1489CrossRefPubMedGoogle Scholar
  3. 3.
    Thomas DM, Seymour JF, O’Brien T, Sawyer SM, Ashley DM (2006) Adolescent and young adult cancer: a revolution in evolution? Intern Med J 36:302–307CrossRefPubMedGoogle Scholar
  4. 4.
    Grinyer A (2007) The biographical impact of teenage and adolescent cancer. Chronic Illness 3(4):265–277CrossRefPubMedGoogle Scholar
  5. 5.
    Zebrack B, Isaacson S (2012) Psychosocial care of adolescent and young adult patients with cancer and survivors. J Clin Oncol 30(11):1221–1226CrossRefPubMedGoogle Scholar
  6. 6.
    Sansom-Daly U, Wakefield CE (2013) Distress and adjustment among adolescents and young adults with cancer: an empirical and conceptual review. Translational Pediatrics 2(4):167–197PubMedPubMedCentralGoogle Scholar
  7. 7.
    Morgan S, Davies S, Palmer S, Plaster M (2010) Sex, drugs and rock ‘n’ roll: caring for adolescents and young adults with cancer. J Clin Oncol 28:4825–4830CrossRefPubMedGoogle Scholar
  8. 8.
    Ramphal R, Meyer R, Schacter B, Rogers P, Pinkerton R (2011) Active therapy and models of care for adolescents and young adults with cancer. Cancer 117:2316–2322CrossRefPubMedGoogle Scholar
  9. 9.
    Fern LA, Taylor RM, Whelan J, Pearce S, Grew T, Brooman K, Starkey C, Millington H, Ashton J, Gibson F (2013) The art of age appropriate care: reflecting on the conceptual model of the cancer experience for teenagers and young adults. Cancer Nurs 36:27–E38CrossRefGoogle Scholar
  10. 10.
    Olsson M, Jarfelt M, Pergert P, Enskär K (2015) Experiences of teenagers and young adults treated for cancer in Sweden. Eur J Oncol Nurs 19:575–581CrossRefPubMedGoogle Scholar
  11. 11.
    Gupta AA, Papadakos JK, Jones JM, Amin L, Chang EK, Korenblum C, Mina DS, McCabe L, Mitchell L, Giuliani ME (2016) Reimagining care for adolescent and young adult cancer programs: moving with the times. Cancer 122:1038–1046CrossRefPubMedGoogle Scholar
  12. 12.
    Ambresin AE, Bennett K, Patton GC, Sanci LA, Sawyer SM (2013) Assessment of youth-friendly health care: a systematic review of indicators drawn from young people’s perspectives. J Adolesc Health 52(6):670–681CrossRefPubMedGoogle Scholar
  13. 13.
    Mitchell W, Clarke S, Sloper P (2006) Care and support needs of children and young people with cancer and their parents. Psycho-Oncology 15:805–816CrossRefPubMedGoogle Scholar
  14. 14.
    Smith AW, Parsons HM, Kent EE, Bellizzi K, Zebrack BJ, Keel G, Lynch CF, Rubenstein MB, Keegan THM, AYA HOPE Study Collaborative Group (2013) Frontiers in. Oncology 3(75):1–11Google Scholar
  15. 15.
    Keegan THM, Lichtensztajn DY, Kato I, Kent EE, Wu X-C, West MM, Hamilton AS, Zebrack B, Bellizzi KM, Smith AW, 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 Survival 6(3):239–250CrossRefGoogle Scholar
  16. 16.
    Zebrack B (2008) Information and service needs of young adult cancer patients. Support Care Cancer 16:1353–1360CrossRefPubMedGoogle Scholar
  17. 17.
    Dyson GJ, Thompson K, Palmer S, Thomas DM, Schofield P (2012) The relationship between unmet needs and distress amongst young people with cancer. Support Care Cancer 20:75–85CrossRefPubMedGoogle Scholar
  18. 18.
    Zebrack BJ, Corbett V, Embry L, Aguila V, Meeske KA, Hayes-Lattin B, Block R, Zeman DT, Cole S (2014) Psychological distress and unsatisfied needed for psychosocial support in adolescent and young adult cancer patients during the first year following diagnosis. Psycho-Oncology. doi: 10.1002/pon.3533 PubMedCentralGoogle Scholar
  19. 19.
    Parsons HM, Harlan LC, Lynch CF, Hamilton AS, Wu XC, Kato I, Schwartz SM, Smith AW, Keel G, Keegan TH (2012) Impact of cancer on work and education among adolescent and young adult cancer survivors. J Clin Oncol 30:2393–2400CrossRefPubMedPubMedCentralGoogle Scholar
  20. 20.
    Bibby H, White V, Thompson K, Anazodo A (2016) What are the unmet needs and care experiences of adolescents and young adults with cancer? A systematic review. Journal of AYA Oncology. doi: 10.1089/jayao.2016.0012 Google Scholar
  21. 21.
    Sloper P (2000) Predictors of distress in parents of children with cancer: a prospective study. J Pediatr Psychol 25(2):79–91CrossRefPubMedGoogle Scholar
  22. 22.
    Kazak AE, Boeving CA, Alderfer MA, Hwang WT, Reilly A (2005) Posttraumatic stress symptoms during treatment in parents of children with cancer. J Clin Oncol 23(30):7405–7410CrossRefPubMedGoogle Scholar
  23. 23.
    Vrijmoet-Wiersma JCM, van Klink JMM, Kolk AM, Hendrik M, Koopman HM, Ball LM, Egeler RM (2008) Assessment of parental psychological stress in pediatric cancer: a review. J Pediatr Psychol 33(7):694–706CrossRefPubMedGoogle Scholar
  24. 24.
    Sawyer SM, McCarthy MC, Dunt D, McNeil R, Thompson K, Orme L, Drew SE (2016) Fulfilling the vision of youth-friendly cancer care: a study protocol. Journal of Adolescent and Young Adult Oncology 5(3):267–677CrossRefPubMedGoogle Scholar
  25. 25.
    Carey ML, Clinton-McHarg T, Sanson-Fisher RW, Shakeshaft A (2012) Development of cancer needs questionnaire for parents and carers of adolescents and young adults with cancer. Support Care Cancer 20(5):991–1010CrossRefPubMedGoogle Scholar
  26. 26.
    Weathers FW, Litz BT, Herman DS, Huska JA, Keane TM (1993) The PTSD Checklist (PCL): reliability, validity, and diagnostic utility. Annual Convention of the International Society for Traumatic Stress Studies; International Society for Traumatic Stress Studies San Antonio.Google Scholar
  27. 27.
    Cardove MJ, Andrykowski MA, Redd WH, Kenady DE, McGrath PC, Sloan DA (1995) Frequency and correlates of posttraumatic stress disorder like symptoms after treatment for breast cancer. Journal of Consultative Clinical Psychology 63:981–986CrossRefGoogle Scholar
  28. 28.
    Walker EA, Newman E, Dobie DJ, Ciechanowski P, Katon W (2002) Validation of the PTSD checklist in an HMO sample of women. Gen Hosp Psychiatry 24(6):375–380CrossRefPubMedGoogle Scholar
  29. 29.
    McCarthy MC, McNeil R, Drew S, Dunt D, Kosola S, Orme L, Sawyer SM (in press). Psychological distress and posttraumatic stress symptoms in adolescents and young adults with cancer and their parents. Journal of Adolescent and Young Adult Oncology.Google Scholar
  30. 30.
    Sanson-Fisher R, Girgis A, Boyes A, Bonevski B, Burton L, Cook P (2000) The unmet supportive care needs of patients with cancer. Cancer 88(1):226–237CrossRefPubMedGoogle Scholar
  31. 31.
    Gupta AA, Edelstein K, Albert-Green A, D’Agostino N (2013) 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(9):2477–2484CrossRefPubMedGoogle Scholar
  32. 32.
    Veloso AG, Sperling C, Holm LV, Nicolaisen A, Rottman N, Thayssen S, Christensen RD, Knudsen JL, Hansen DG (2013) Unmet needs in cancer rehabilitation during the early cancer trajectory—a nationwide patent survey. Acta Oncol 52:372–381CrossRefPubMedGoogle Scholar
  33. 33.
    Parker PA, Baile WF, de Moor C, Cohen L (2003) Psychosocial and demographic predictors of quality of life in a large sample of cancer patients. Psycho-Oncology 12:183–193CrossRefPubMedGoogle Scholar
  34. 34.
    Stava CJ, Lopez A, Vassilopoulou-Selli R (2006) Health profiles of younger and older breast cancer survivors. Cancer 107(8):1752–1759CrossRefPubMedGoogle Scholar
  35. 35.
    Costanzo ES, Ryff CD, Singer B (2009) Psychosocial adjustment among cancer survivors: findings from a national survey of health and well-being. Health Psychol 28:147–156CrossRefPubMedPubMedCentralGoogle Scholar
  36. 36.
    Zebrack BJ, Block R, Hayes-Lattin B, Embry L, Aguilar C, Meeske KA, Li Y, Butler M, Cole S (2013) Psychological service use and unmet needs among recently diagnosed adolescent and young adult cancer patients. Cancer 119:201–214CrossRefPubMedGoogle Scholar
  37. 37.
    Geue K, Richter D, Schmidt R, Sender A, Siedentopf F, Brähler E et al (2014) The desire for children and fertility issues among young German cancer survivors. J Adolesc Health 54(5):527–535CrossRefPubMedGoogle Scholar
  38. 38.
    Bonevski B, Sanson-Fisher R, Girgis A, Burton L, Cook P, Boyes A (2000) Evaluation of an instrument to assess the needs of patients with cancer. Cancer 88(1):217–225CrossRefPubMedGoogle Scholar

Copyright information

© Springer-Verlag Berlin Heidelberg 2017

Authors and Affiliations

  • Susan M. Sawyer
    • 1
    • 2
    • 3
    • 4
    Email author
  • Robyn McNeil
    • 1
    • 2
  • Maria McCarthy
    • 2
    • 5
  • Lisa Orme
    • 5
    • 6
  • Kate Thompson
    • 6
  • Sarah Drew
    • 1
    • 3
  • David Dunt
    • 4
  1. 1.Centre for Adolescent HealthRoyal Children’s HospitalParkvilleAustralia
  2. 2.Murdoch Childrens Research InstituteParkvilleAustralia
  3. 3.Department of PaediatricsThe University of MelbourneParkvilleAustralia
  4. 4.School of Population and Global HealthThe University of MelbourneParkvilleAustralia
  5. 5.Children’s Cancer CentreRoyal Children’s HospitalParkvilleAustralia
  6. 6.ONTrac Adolescent & Young Adult Cancer Service, Peter MacCallum Cancer CentreParkvilleAustralia

Personalised recommendations