Objective. To assess and identify patient-reported supportive care needs following definitive treatment in persons with breast cancer (BC) and primary brain tumours (gliomas) (BT) in an Australian community cohort and to assess the commonalities and/or discrepancies of the reported needs in these oncological populations. Methods. A prospective cross-sectional survey of persons with BC ( ) and BT ( ) using questionnaires for supportive care needs, psychological morbidity, and quality of life. Results. BT participants were younger than BC patients (mean ages 51 and 57 years). The median time since diagnosis for both groups was over 2 years. The level of psychological morbidity, mainly depression, was high in both groups: BC (22%) and BT (20%). Participants in both groups reported at least one need (“met” or “unmet”). The BC patients reported higher numbers of “needs” and “unmet” needs compared with BT patients (mean 13.7 versus 11.6 needs; “unmet” needs mean 6.0 versus 4.1). The common “met” and “unmet” needs highlighted by both groups were comparable; the domain for most “met” needs included comprehensive cancer care, while “unmet” needs related to existential survivorship issues. Conclusion. Despite successful treatment many cancer survivors experience unmet supportive care needs in longer term. Understanding the impact of these beyond the acute phase is important as care shifts to community settings. More research in existential survivorship issues is needed. 1. Introduction Cancer is a leading cause of death worldwide [1]. Breast cancer (BC) is the most common malignancy in women [1], comprising up to 16% of all cancers in women [2]. Primary brain tumours (BT), a comparatively rare and diverse group of neoplasms, account for 2% of all cancers [3] and affect 7 per 100,000 population annually worldwide [4]. The overall incidence of BC and BT is on increase worldwide [2]. In Australia, by 2015, 1 in 9 women will develop BC [5]. It is estimated that in 2009, there were 22,070 new cases of BT in United States [6, 7]. In Australia, a similarly high incidence rate is reported, with approximately 1400 new cases and more than 1200 deaths annually [8]. The World Health Organisation (WHO) promotes the integration of prevention, early detection, diagnosis and treatment [9], rehabilitation and palliative care [2] in the management of. BC and BT within the national cancer control programs. With recent therapeutic advances, survival rates of persons with cancers have improved [10–12]. However, recovery and treatment options after BC or BT can be challenging, and
References
[1]
Australian Institute of Health and Welfare (AIHW) and Australasian Association of Cancer Registries (AACR), Cancer in Australia: An Overview, 2012, Cancer Series no. 74. Cat. No. CAN 70, AIHW, Canberra, Australia, 2012.
[2]
World Health Organisation, The Global Burden of Disease: 2004 Update, WHO, Geneva, Switzerland, 2008.
[3]
A. Arber, S. Faithfull, M. Plaskota, et al., “A study of patients with a primary malignant brain tumour and their carers: symptoms and access to services,” International Journal of Palliative Nursing, vol. 16, no. 1, pp. 24–30, 2010.
[4]
D. M. Parkin, S. L. Whelan, and J. Ferlay, Cancer Incidence in Five Continents, vol. 1–8, no. 7 of IARC Cancerbase, Lyon, France, 2005.
[5]
Australian Institute of Health and Welfare (AIHW), Breast Cancer in Australia: An Overview. National Breast and Ovarian Cancer Centre, Cancer Series no 50. Cat no CAN 46, AIHW, Canberra, Australia, 2009.
[6]
A. Flowers, “Brain tumors in the older person,” Cancer Control, vol. 7, no. 6, pp. 523–538, 2000.
[7]
A. Jemal, R. Siegel, E. Ward, Y. Hao, J. Xu, and M. J. Thun, “Cancer statistics, 2009,” CA Cancer Journal for Clinicians, vol. 59, no. 4, pp. 225–249, 2009.
[8]
Brain Foundation, “Brain tumour and brain cancer,” 2011, http://brainfoundation.org.au/medical-info/brain-tumour.
[9]
C.-H. Yip, R. A. Smith, B. O. Anderson et al., “Guideline implementation for breast healthcare in low- and middle-income countries: early detection resource allocation,” Cancer, vol. 113, no. 8, pp. 2244–2256, 2008.
[10]
M. E. Huang, J. E. Wartella, and J. S. Kreutzer, “Functional outcomes and quality of life in patients with brain tumors: a preliminary report,” Archives of Physical Medicine and Rehabilitation, vol. 82, no. 11, pp. 1540–1546, 2001.
[11]
G. Poggi, M. Liscio, V. Pastore et al., “Psychological intervention in young brain tumor survivors: the efficacy of the cognitive behavioural approach,” Disability and Rehabilitation, vol. 31, no. 13, pp. 1066–1073, 2009.
[12]
B. Thewes, P. Butow, A. Girgis, and S. Pendlebury, “The psychosocial needs of breast cancer survivors; a qualitative study of the shared and unique needs of younger versus older survivors,” Psycho-Oncology, vol. 13, no. 3, pp. 177–189, 2004.
[13]
K. L. Campbell, A. L. Pusic, D. S. Zucker et al., “A prospective model of care for breast cancer rehabilitation: function,” Cancer, vol. 118, no. 8, pp. 2300–2311, 2012.
[14]
V. Tang, M. Rathbone, J. Park Dorsay, S. Jiang, and D. Harvey, “Rehabilitation in primary and metastatic brain tumours: impact of functional outcomes on survival,” Journal of Neurology, vol. 255, no. 6, pp. 820–827, 2008.
[15]
D. J. Franklin, “Cancer rehabilitation: challenges, approaches, and new directions,” Physical Medicine and Rehabilitation Clinics of North America, vol. 18, no. 4, pp. 899–924, 2007.
[16]
N. M. Aziz and J. H. Rowland, “Trends and advances in cancer survivorship research: challenge and opportunity,” Seminars in Radiation Oncology, vol. 13, no. 3, pp. 248–266, 2003.
[17]
J. S. Carpenter, M. A. Andrykowski, P. Sloan, et al., “Post mastectomy/post lumpectomy pain in breast cancer survivors,” Journal of Clinical Epidemiology, vol. 51, pp. 1285–1292, 1998.
[18]
T. Ownsworth, A. Hawkes, S. Steginga, D. Walker, and D. Shum, “A biopsychosocial perspective on adjustment and quality of life following brain tumor: a systematic evaluation of the literature,” Disability and Rehabilitation, vol. 31, no. 13, pp. 1038–1055, 2009.
[19]
F. A. Tager, P. S. McKinley, F. R. Schnabel et al., “The cognitive effects of chemotherapy in post-menopausal breast cancer patients: a controlled longitudinal study,” Breast Cancer Research and Treatment, vol. 123, no. 1, pp. 25–34, 2010.
[20]
F. Fehlauer, S. Tribius, A. Mehnert, and D. Rades, “Health-related quality of life in long term breast cancer survivors treated with breast conserving therapy: impact of age at therapy,” Breast Cancer Research and Treatment, vol. 92, no. 3, pp. 217–222, 2005.
[21]
K. K. Ness, E. B. Morris, V. G. Nolan et al., “Physical performance limitations among adult survivors of childhood brain tumors,” Cancer, vol. 116, no. 12, pp. 3034–3044, 2010.
[22]
K. Hodgkinson, P. Butow, G. E. Hunt et al., “The development and evaluation of a measure to assess cancer survivors' unmet supportive care needs: TheCaSUN (Cancer Survivors' Unmet Needs measure),” Psycho-Oncology, vol. 16, no. 9, pp. 796–804, 2007.
[23]
H. S. Campbell, R. Sanson-Fisher, D. Turner, L. Hayward, X. S. Wang, and J. Taylor-Brown, “Psychometric properties of cancer survivors' unmet needs survey,” Supportive Care in Cancer, vol. 19, no. 2, pp. 221–230, 2010.
[24]
S. E. Harrison, E. K. Watson, A. M. Ward et al., “Primary health and supportive care needs of long-term cancer survivors: a questionnaire survey,” Journal of Clinical Oncology, vol. 29, no. 15, pp. 2091–2098, 2011.
[25]
K. Hodgkinson, P. Butow, G. E. Hunt, S. Pendlebury, K. M. Hobbs, and G. Wain, “Breast cancer survivors' supportive care needs 2–10 years after diagnosis,” Supportive Care in Cancer, vol. 15, no. 5, pp. 515–523, 2007.
[26]
K. Hodgkinson, P. Butow, A. Fuchs et al., “Long-term survival from gynecologic cancer: psychosocial outcomes, supportive care needs and positive outcomes,” Gynecologic Oncology, vol. 104, no. 2, pp. 381–389, 2007.
[27]
F. Khan and B. Amatya, “Factors associated with long-term functional outcomes, psychological sequelae and quality of life in persons after primary brain tumour,” Journal of Neuro-Oncology, vol. 111, no. 3, pp. 355–366, 2013.
[28]
F. Khan, B. Amatya, J. F. Pallant, and I. Rajapaksa, “Factors associated with long-term functional outcomes and psychological sequelae in women after breast cancer,” Breast, vol. 21, no. 3, pp. 314–320, 2012.
[29]
F. Khan, B. Amatya, J. F. Pallant, et al., “Multidisciplinary rehabilitation in women following breast cancer treatment: a randomized controlled trial,” Journal of Rehabilitation Medicine, vol. 44, no. 9, pp. 788–794, 2012.
[30]
American Joint Committee on Cancer (AJCC), Breast, in AJCC Cancer Staging Manual, Springer, New York, NY, USA, 2002.
[31]
P. Kleihues, P. C. Burger, and B. W. Scheithauer, “The new WHO classification of brain tumours,” Brain Pathology, vol. 3, no. 3, pp. 255–268, 1993.
[32]
P. A. Ganz, C. A. C. Schag, J. J. Lee, and M.-S. Sim, “The CARES: a generic measure of health-related quality of life for patients with cancer,” Quality of Life Research, vol. 1, no. 1, pp. 19–29, 1992.
[33]
S. H. Lovibond and P. F. Lovibond, Manual for the Depression, Anxiety, Stress Scales, The Psychology Foundation of Australia Inc, Sydney, Australia, 1995.
[34]
C. Clayforth, L. Fritschi, S. P. McEvoy et al., “Five-year survival from breast cancer in Western Australia over a decade,” Breast, vol. 16, no. 4, pp. 375–381, 2007.
[35]
N. Devoogdt, M. Van Kampen, I. Geraerts et al., “Physical activity levels after treatment for breast cancer: one-year follow-up,” Breast Cancer Research and Treatment, vol. 123, no. 2, pp. 417–425, 2010.
[36]
J.-G. Han, Y.-D. Jiang, C.-H. Zhang et al., “Clinicopathologic characteristics and prognosis of young patients with breast cancer,” Breast, vol. 20, no. 4, pp. 370–372, 2011.
[37]
M. E. Huang, D. X. Cifu, and L. Keyser-Marcus, “Functional outcomes in patients with brain tumor after inpatient rehabilitation: comparison with traumatic brain injury,” American Journal of Physical Medicine and Rehabilitation, vol. 79, no. 4, pp. 327–335, 2000.
[38]
M. Bartolo, C. Zucchella, A. Pace et al., “Early rehabilitation after surgery improves functional outcome in inpatients with brain tumours,” Journal of Neuro-Oncology, vol. 107, no. 3, pp. 537–544, 2012.
[39]
F. Khan, B. Amatya, L. Ng, et al., “Multidisciplinary rehabilitation for follow-up of women treated for breast cancer,” Cochrane Database of Systematic Reviews, no. 12, Article ID CD009553, 2012.
[40]
F. Khan, B. Amatya, L. Ng, et al., “Multidisciplinary rehabilitation after primary brain tumour treatment,” Cochrane Database of Systematic Reviews, no. 1, Article ID CD009509, 2013.
[41]
N. A. Hutchison, “Cancer rehabilitation,” Minnesota Medicine, vol. 93, no. 10, pp. 50–52, 2010.
[42]
J. Armes, M. Crowe, L. Colbourne et al., “Patients' supportive care needs beyond the end of cancer treatment: a prospective, longitudinal survey,” Journal of Clinical Oncology, vol. 27, no. 36, pp. 6172–6179, 2009.
[43]
V. Beesley, E. Eakin, S. Steginga, J. Aitken, J. Dunn, and D. Battistutta, “Unmet needs of gynaecological cancer survivors: implications for developing community support services,” Psycho-Oncology, vol. 17, no. 4, pp. 392–400, 2008.
[44]
S. L. Sanders, E. O. Bantum, J. E. Owen, A. A. Thornton, and A. L. Stanton, “Supportive care needs in patients with lung cancer,” Psycho-Oncology, vol. 19, no. 5, pp. 480–489, 2010.
[45]
S. H. Campbell, M. Carey, R. Sanson-Fisher, et al., “Measuring the unmet supportive care needs of cancer support persons: the development of the Support Person's Unmet Needs Survey—short form,” European Journal of Cancer Care, 2013.