Supportive Care in Cancer

, Volume 15, Issue 5, pp 515–523 | Cite as

Breast cancer survivors’ supportive care needs 2–10 years after diagnosis

  • Katharine HodgkinsonEmail author
  • Phyllis Butow
  • Glenn E Hunt
  • Susan Pendlebury
  • Kim M Hobbs
  • Gerard Wain
Original Article


Goals of the work

A significant proportion of breast cancer patients experience psychosocial morbidity after treatment, although their longer-term outcomes and supportive care service needs have not been comprehensively documented. The aim of this study was to identify longer-term outcomes and supportive care needs in disease-free breast cancer survivors.

Materials and methods

One hundred seventeen patients who had been diagnosed with breast cancer 2–10 years earlier completed questionnaires to assess psychosocial outcomes including supportive care needs, psychological distress, and quality of life (QoL).

Main results

QoL and depression scores were consistent with community rates although anxiety scores were higher. Approximately two thirds of survivors reported at least one unmet need, most frequently concerning existential survivorship issues, thereby highlighting the unique needs of survivors. Years since diagnosis was not correlated with need levels. Survivors classified as clinically anxious reported over three times as many unmet needs and survivors classified as depressed reported over two and a half times as many unmet needs. Positive outcomes were frequently reported.


The findings have direct clinical relevance: irrespective of years since diagnosis, comprehensive and extended supportive care services are required to identify breast cancer survivors in need of supportive care interventions and remediate high levels of anxiety.


Breast cancer survivors Unmet needs Supportive care Psychosocial outcomes Benefit finding 



This research was supported by a scholarship from the NHMRC No: 358826 and a Training Fellowship in Psychiatric Research from the NSW Institute of Psychiatry, Australia. The research team would like to sincerely thank Ms. Denyse Stephens for her assistance with the data management.


  1. 1.
    Affleck G, Tennen H, Croog S, Levine S (1987) Causal attribution, perceived benefits, and morbidity after a heart attack: an eight year study. J Consult Clin Psychol 55:29–35PubMedCrossRefGoogle Scholar
  2. 2.
    ABS (2003) National health survey: mental health, Australia. Cat. No. 4811.0, Australian Bureau of Statistics, CanberraGoogle Scholar
  3. 3.
    Australian Institute of Health and Welfare (AIHW) and Australasian Association of Cancer Registries (AACR) (2003) Cancer survival in Australia 1992–1997: geographic categories and socioeconomic status. AIHW Cat. No. CAN 17, Cancer series no. 22, Australian Institute of Health and Welfare, CanberraGoogle Scholar
  4. 4.
    Bjelland I, Dahl AA, Haug TT, Neckelmann D (2002) The validity of the Hospital Anxiety and Depression Scale. An updated literature review. J Psychosom Res 52:69–77PubMedCrossRefGoogle Scholar
  5. 5.
    Bonevski B, Sanson-Fisher RR, Girgis A, Burton L, Cook P, Boyes A (2000) Evaluation of an instrument to assess the needs of patients with cancer. Supportive Care Review Group. Cancer 88:217–225PubMedCrossRefGoogle Scholar
  6. 6.
    Bower JE, Meyerowitz BE, Desmond KA, Bernaards CA, Rowland JH, Ganz PA (2005) Perceptions of positive meaning and vulnerability following breast cancer: predictors and outcomes among long-term breast cancer survivors. Ann Behav Med 29:236–245PubMedCrossRefGoogle Scholar
  7. 7.
    Burman B, Margolin G (1992) Analysis of the association between marital relationships and health problems: an interactional perspective. Psychol Bull 112:39–63PubMedCrossRefGoogle Scholar
  8. 8.
    Carr W, Wolfe S (1976) Unmet needs as sociomedical indicators. Int J Health Serv 6:417–430PubMedGoogle Scholar
  9. 9.
    Carver CS, Antoni MH (2004) Finding benefit in breast cancer during the year after diagnosis predicts better adjustment 5 to 8 years after diagnosis. Health Psychol 23:595–598PubMedCrossRefGoogle Scholar
  10. 10.
    Dean C (1987) Psychiatric morbidity following mastectomy: preoperative predictors and types of illness. J Psychosom Res 31:385–392PubMedCrossRefGoogle Scholar
  11. 11.
    Devine EC, Westlake SK (1995) The effects of psychoeducational care provided to adults with cancer: meta-analysis of 116 studies. Oncol Nurs Forum 22:1369–1381PubMedGoogle Scholar
  12. 12.
    Dorval M, Maunsell E, Deschenes L, Brisson J, Masse B (1998) Long-term quality of life after breast cancer: comparison of 8-year survivors with population controls. J Clin Oncol 16:487–494PubMedGoogle Scholar
  13. 13.
    Ell K, Nishimoto R, Morvay T, Mantell J, Hamovitch M (1989) A longitudinal analysis of psychological adaptation among survivors of cancer. Cancer 63:406–413PubMedCrossRefGoogle Scholar
  14. 14.
    Ferrell BR, Dow KH (1997) Quality of life among long-term cancer survivors. Oncology 11:565–571PubMedGoogle Scholar
  15. 15.
    Fitch M (1994) Providing supportive care for individuals living with cancer. Ontario Cancer Treatment and Research Foundation, TorontoGoogle Scholar
  16. 16.
    Gallagher J, Parle M, Cairns D (2002) Appraisal and psychological distress six months after diagnosis of breast cancer. Brit J Health Psychol 7:365–376CrossRefGoogle Scholar
  17. 17.
    Ganz PA, Rowland JH, Desmond K, Meyerowitz BE, Wyatt GE (1998) Life after breast cancer: understanding women’s health-related quality of life and sexual functioning. J Clin Oncol 16:501–514PubMedGoogle Scholar
  18. 18.
    Gill KM, Mishel M, Belyea M, Germino B, Germino LS, Porter L, LaNey IC, Stewart J (2004) Triggers of uncertainty about recurrence and long-term treatment side effects in older African American and Caucasian breast cancer survivors. Oncol Nurs Forum 31:633–639PubMedGoogle Scholar
  19. 19.
    Girgis A, Boyes A, Sanson-Fisher RW, Burrows S (2000) Perceived needs of women diagnosed with breast cancer: rural versus urban location. Aust N Z J Public Health 24:166–173PubMedGoogle Scholar
  20. 20.
    Gotay CC, Muraoka MY (1998) Quality of life in long-term survivors of adult-onset cancers. J Natl Cancer Inst 90:656–667PubMedCrossRefGoogle Scholar
  21. 21.
    Grassi L, Rossi G (1996) Psychosocial morbidity and adjustment to illness among long-term cancer survivors: a six-year follow-up study. Psychosomatics 37:523–532PubMedGoogle Scholar
  22. 22.
    Gray RE, Fitch M, Greenberg M, Hampson A, Doherty M, Labrecque M (1998) The information needs of well, longer-term survivors of breast cancer. Patient Educ Couns 33:245–255PubMedCrossRefGoogle Scholar
  23. 23.
    Greaves-Otte JG, Greaves J, Kruyt PM, van Leeuwen O, van der Wouden JC, van der Does E (1991) Problems at social re-integration of long-term cancer survivors. Eur J Cancer 27:178–181PubMedCrossRefGoogle Scholar
  24. 24.
    Greer S (1991) Psychological response to cancer and survival. Psychol Med 21:43–49PubMedCrossRefGoogle Scholar
  25. 25.
    Harrison J, Maguire P (1994) Predictors of psychiatric morbidity in cancer patients. Br J Psychiatry 165:593–598PubMedCrossRefGoogle Scholar
  26. 26.
    Helgeson VS, Snyder P, Seltman H (2004) Psychological and physical adjustment to breast cancer over 4 years: identifying distinct trajectories of change. Health Psychol 23:3–15PubMedCrossRefGoogle Scholar
  27. 27.
    Hodgkinson K, Butow P, Pendlebury S, Hobbs KM, Lo SK, Hunt GE, Wain G (2006) The development and evaluation of a measure to assess cancer survivors’ unmet supportive care needs: the CaSUN (Cancer Survivors Unmet Needs measure). Psycho-Oncol (in press)Google Scholar
  28. 28.
    Holzner B, Kemmler G, Kopp M, Moschen R, Schweigkofler H, Dunser M, Margreiter R, Fleischhacker WW, Sperner-Unterweger B (2001) Quality of life in breast cancer patients—not enough attention for long-term survivors? Psychosomatics 42:117–123PubMedCrossRefGoogle Scholar
  29. 29.
    Houts PS, Yasko JM, Kahn SB, Schelzel GW, Marconi KM (1986) Unmet psychological, social, and economic needs of persons with cancer in Pennsylvania. Cancer 58:2355–2361PubMedCrossRefGoogle Scholar
  30. 30.
    Irvine D, Brown B, Crooks D, Roberts J, Browne G (1991) Psychosocial adjustment in women with breast cancer. Cancer 67:1097–1117PubMedCrossRefGoogle Scholar
  31. 31.
    Keller M (1998) Psychosocial care of breast cancer patients. Anticancer Res 18:2257–2259PubMedGoogle Scholar
  32. 32.
    Kenny P, King M, Shiell J, Seymour J, Hall A, Langlands A, Boyages J (2005) Early stage breast cancer: costs and quality of life one year after treatment by mastectomy or conservative surgery and radiation therapy. Breast 9:37–44CrossRefGoogle Scholar
  33. 33.
    Kilpatrick MG, Kristjanson LJ, Tataryn DJ (1989) Measuring the information needs of husbands of women with breast cancer: validity and reliability of the Family Inventory of Needs–husbands. Oncol Nurs Forum 25:1347–1351Google Scholar
  34. 34.
    King MT, Kenny P, Shiell A, Hall J, Boyages J (2000) Quality of life three months and one year after first treatment for early stage breast cancer: influence of treatment and patient characteristics. Qual Life Res 9:789–800PubMedCrossRefGoogle Scholar
  35. 35.
    Kissane DW, Grabsch B, Love A, Clarke DM, Bloch S, Smith GC (2004) Psychiatric disorder in women with early stage and advanced breast cancer: a comparative analysis. Aust N Z J Psychiatry 38:320–326PubMedCrossRefGoogle Scholar
  36. 36.
    Kristjanson LJ, Atwood J, Degner LF (1995) Validity and reliability of the Family Inventory of Needs (FIN): measuring the care needs of families of advanced cancer patients. J Nurs Meas 3:109–126PubMedGoogle Scholar
  37. 37.
    Lindrop E, Cannon S (2001) Evaluating the self-assessed support needs of women with breast cancer. J Adv Nurs 34:760–771CrossRefGoogle Scholar
  38. 38.
    Lintz K, Moynihan C, Steginga S, Norman A, Eeles R, Huddart R, Dearnaley D, Watson M (2003) Prostate cancer patients’ support and psychological care needs: survey from a non-surgical oncology clinic. Psychooncology 12:769–783PubMedCrossRefGoogle Scholar
  39. 39.
    Little M, Sayers EJ, Paul K, Jordens CF (2000) On surviving cancer. J R Soc Med 93:501–503PubMedGoogle Scholar
  40. 40.
    Loescher LJ, Clark L, Atwood JR, Leigh S, Lamb G (1990) The impact of the cancer experience on long-term survivors. Oncol Nurs Forum 17:223–229PubMedGoogle Scholar
  41. 41.
    Loescher LJ, Welch-McCaffrey D, Leigh SA, Hoffman B, Meyskens FL Jr (1989) Surviving adult cancers. Part 1: physiologic effects. Ann Intern Med 111:411–432PubMedGoogle Scholar
  42. 42.
    Maunsell E, Brisson J, Deschenes L (1992) Psychological distress after initial treatment of breast cancer. Assessment of potential risk factors. Cancer 70:120–125PubMedCrossRefGoogle Scholar
  43. 43.
    McLachlan S, Allenby A, Matthews J, Wirth A, Kissane D, Bishop M, Beresford J, Zalcberg J (2001) Randomized trial of coordinated psychosocial interventions based on patient self-assessments versus standard care to improve the psychosocial functioning of patients with cancer. J Clin Oncol 19:4117–4125PubMedGoogle Scholar
  44. 44.
    Meyer L, Aspegren K (1989) Long-term psychological sequelae of mastectomy and breast conserving treatment for breast cancer. Acta Oncol 28:13–18PubMedGoogle Scholar
  45. 45.
    Meyer TJ, Mark MM (1995) Effects of psychosocial interventions with adult cancer patients: a meta-analysis of randomized experiments. Health Psychol 14:101–108PubMedCrossRefGoogle Scholar
  46. 46.
    Mullan F (1985) Seasons of survival: reflections of a physician with cancer. N Engl J Med 313:270–273PubMedCrossRefGoogle Scholar
  47. 47.
    National Coalition for Cancer Survivorship (2005) Available from URL: [accessed March 1, 2005]
  48. 48.
    NHMRC National Breast Cancer Centre Psychosocial Working Group (2000) Psychosocial clinical practice guidelines for women with breast cancer. NHMRC, Canberra, AustraliaGoogle Scholar
  49. 49.
    Northouse L, Templin T, Mood D (2001) Couples’ adjustment to breast disease during the first year following diagnosis. J Behav Med 24:115–136PubMedCrossRefGoogle Scholar
  50. 50.
    Omne-Ponten M, Holmberg L, Sjoden PO (1994) Psychosocial adjustment among women with breast cancer stages I and II: six-year follow-up of consecutive patients. J Clin Oncol 12:1778–1782PubMedGoogle Scholar
  51. 51.
    O’Sullivan MB (2001) Self-perceived health status of Irish breast cancer survivors. Ir J Med Sci 170:14–17PubMedCrossRefGoogle Scholar
  52. 52.
    Pendlebury SC, Ivanov O, Renwick S, Stevens GN (2003) Long-term review of a breast conservation series and patterns of care over 18 years. ANZ J Surg 73:577–583PubMedCrossRefGoogle Scholar
  53. 53.
    Polinsky ML (1994) Functional status of long-term breast cancer survivors: demonstrating chronicity. Health Soc Work 3:165–173Google Scholar
  54. 54.
    Rainbird KJ, Perkins JJ, Sanson-Fisher RW (2005) The Needs Assessment for Advanced Cancer Patients (NA-ACP): a measure of the perceived needs of patients with advanced, incurable cancer. A study of validity, reliability and acceptability. Psychooncology 14:297–306PubMedCrossRefGoogle Scholar
  55. 55.
    Soothill K, Morris SM, Harman J, Francis B, Thomas C, McIllmurray MB (2001) The significant unmet needs of cancer patients: probing psychosocial concerns. Support Care Cancer 9:597–605PubMedCrossRefGoogle Scholar
  56. 56.
    Steginga SK, Occhipinti S, Dunn J, Gardiner RA, Heathcote P, Yaxley J (2001) The supportive care needs of men with prostate cancer (2000). Psychooncology 10:66–75PubMedCrossRefGoogle Scholar
  57. 57.
    Surbone A, Peccatori FA (2006) Unmet needs of cancer survivors: supportive care’s new challenge. Support Care Cancer 14:397–399PubMedCrossRefGoogle Scholar
  58. 58.
    Thewes B, Butow P, Girgis A, Pendlebury S (2004) The psychosocial needs of breast cancer survivors: a qualitative study of the shared and unique needs of younger versus older survivors. Psychooncology 13:177–189PubMedCrossRefGoogle Scholar
  59. 59.
    Thewes B, Butow P, Girgis A, Pendlebury S (2004) The assessment of unmet needs among survivors of breast cancer. J Psychosoc Oncol 22:51–73CrossRefGoogle Scholar
  60. 60.
    Thors CL, Broeckel JA, Jacobsen PB (2001) Sexual functioning in breast cancer survivors. Cancer Control 8:442–448PubMedGoogle Scholar
  61. 61.
    Tomich PL, Helgeson VS (2004) Is finding something good in the bad always good? Benefit finding among women with breast cancer. Health Psychol 23:16–23PubMedCrossRefGoogle Scholar
  62. 62.
    Sanson-Fisher R, Girgis A, Boyes A, Bonevski B, Burton L, Cook P (2000) The unmet supportive care needs of patients with cancer. Supportive Care Review Group. Cancer 88:226–237PubMedCrossRefGoogle Scholar
  63. 63.
    Vinokur AD, Threatt BA, Caplan RD, Zimmerman BL (1989) Physical and psychosocial functioning and adjustment to breast cancer. Long-term follow-up of a screening population. Cancer 63:394–405PubMedCrossRefGoogle Scholar
  64. 64.
    Vivar CG, McQueen A (2005) Informational and emotional needs of long-term survivors of breast cancer. J Adv Nurs 51:520–528PubMedCrossRefGoogle Scholar
  65. 65.
    Ware JE Jr, Kosinski M, Keller SD (1996) A 12-item short-form health survey: construction of scales and preliminary tests of reliability and validity. Med Care 34:220–233PubMedCrossRefGoogle Scholar
  66. 66.
    Wyatt G, Kurtz ME, Liken M (1993) Breast cancer survivors: an exploration of quality of life issues. Cancer Nurs 16:440–448PubMedCrossRefGoogle Scholar
  67. 67.
    Zabora J, BrintzenhofeSzoc K, Curbow B, Hooker C, Piantadosi S (2001) The prevalence of psychological distress by cancer site. Psychooncology 10:19–28PubMedCrossRefGoogle Scholar
  68. 68.
    Zigmond AS, Snaith RP (2003) The hospital anxiety and depression scale. Acta Psychiatr Scand 67:361–370Google Scholar

Copyright information

© Springer-Verlag 2006

Authors and Affiliations

  • Katharine Hodgkinson
    • 1
    • 2
    Email author
  • Phyllis Butow
    • 3
  • Glenn E Hunt
    • 2
  • Susan Pendlebury
    • 4
  • Kim M Hobbs
    • 1
  • Gerard Wain
    • 1
  1. 1.Department of Gynecological CancerWestmead HospitalWestmeadAustralia
  2. 2.Department of Psychological MedicineUniversity of SydneySydneyAustralia
  3. 3.Medical Psychology Research Unit, School of Psychology, Brennan/MacCallum Building (A18)University of SydneySydneyAustralia
  4. 4.Department of Radiation Oncology, Royal Prince Alfred HospitalUniversity of SydneySydneyAustralia

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