Abstract
Purpose
Although costs of lung cancer care have been documented, economic and social changes among lung cancer patients’ family caregivers have yet to be fully examined. In addition, research has not focused on caregivers with greater need for support services. This study examined various economic and social changes among distressed family caregivers of lung cancer patients during the initial months of cancer care in the USA.
Methods
Lung cancer patients’ primary family caregivers with significant anxiety or depressive symptoms were recruited from three medical centers within 12 weeks of the patient’s new oncology visit. Caregivers (N = 83) reported demographic and medical information and caregiving burden at baseline. Seventy-four caregivers reported anxiety and depressive symptoms and economic and social changes 3 months later.
Results
Seventy-four percent of distressed caregivers experienced one or more adverse economic or social changes since the patient’s illness. Common changes included caregivers’ disengagement from most social and leisure activities (56 %) and, among employed caregivers (n = 49), reduced hours of work (45 %). In 18 % of cases, a family member quit work or made another major lifestyle change due to caregiving. Additionally, 28 % of caregivers reported losing the main source of family income, and 18 % reported losing most or all of the family savings. Loss of the main source of family income and disengagement from most social and leisure activities predicted greater caregiver distress.
Conclusions
Findings suggest that distressed caregivers of lung cancer patients experience high rates of adverse economic and social changes that warrant clinical and research attention.
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References
Kim Y, Given BA (2008) Quality of life of family caregivers of cancer survivors: across the trajectory of the illness. Cancer 112:2556–2568
Braun M, Mikulincer M, Rydall A, Walsh A, Rodin G (2007) Hidden morbidity in cancer: spouse caregivers. J Clin Oncol 25:4829–4834
Given BA, Given CW, Kozachik S (2001) Family support in advanced cancer. CA Cancer J Clin 51:213–231
Bailes JS (1997) Health care economics of cancer in the elderly. Cancer 80:1348–1350
Nijboer C, Tempelaar R, Sanderman R, Triemstra M, Spruijt RJ, van den Bos GA (1998) Cancer and caregiving: the impact on the caregiver’s health. Psychooncology 7:3–13
Stajduhar K, Funk L, Toye C, Grande G, Aoun S, Todd C (2010) Part 1: home-based family caregiving at the end of life: a comprehensive review of published quantitative research (1998–2008). Palliat Med 24:573–593
Gaugler JE, Hanna N, Linder J, Given CW, Tolbert V, Kataria R, Regine WF (2005) Cancer caregiving and subjective stress: a multi-site, multi-dimensional analysis. Psychooncology 14:771–785
Molassiotis A, Wilson B, Blair S, Howe T, Cavet J (2011) Unmet supportive care needs, psychological well-being and quality of life in patients living with multiple myeloma and their partners. Psychooncology 20:88–97
Östlund U, Wennman-Larsen A, Persson C, Gustavsson P, Wengström Y (2010) Mental health in significant others of patients dying from lung cancer. Psychooncology 19:29–37
van Ryn M, Sanders S, Kahn K, van Houtven C, Griffin JM, Martin M, Atienza AA, Phelan S, Finstad D, Rowland J (2011) Objective burden, resources, and other stressors among informal cancer caregivers: a hidden quality issue? Psychooncology 20:44–52
Siegel K, Karus DG, Raveis VH, Christ GH, Mesagno FP (1996) Depressive distress among the spouses of terminally ill cancer patients. Cancer Pract 4:25–30
Carmack Taylor CL, Badr H, Lee JH, Fossella F, Pisters K, Gritz ER, Schover L (2008) Lung cancer patients and their spouses: psychological and relationship functioning within 1 month of treatment initiation. Ann Behav Med 36:129–140
Kim Y, Duberstein PR, Sörensen S, Larson MR (2005) Levels of depressive symptoms in spouses of people with lung cancer: effects of personality, social support, and caregiving burden. Psychosomatics 46:123–130
Grunfeld E, Coyle D, Whelan T, Clinch J, Reyno L, Earle CC, Willan A, Viola R, Coristine M, Janz T, Glossop R (2004) Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers. Can Med Assoc J 170:1795–1801
Pitceathly C, Maguire P (2003) The psychological impact of cancer on patients' partners and other key relatives: a review. Eur J Cancer 39:1517–1524
Hanratty B, Holland P, Jacoby A, Whitehead M (2007) Financial stress and strain associated with terminal cancer—a review of the evidence. Palliat Med 21:595–607
Chang S, Long SR, Kutikova L, Bowman L, Finley D, Crown WH, Bennett CL (2004) Estimating the cost of cancer: results on the basis of claims data analyses for cancer patients diagnosed with seven types of cancer during 1999 to 2000. J Clin Oncol 22:3524–3530
Ell K, Xie B, Wells A, Nedjat-Haiem F, Lee PJ, Vourlekis B (2008) Economic stress among low-income women with cancer: effects on quality of life. Cancer 112:616–625
Sharp L, Carsin AE, Timmons A (2012) Associations between cancer-related financial stress and strain and psychological well-being among individuals living with cancer. Psychooncology, in press
Mazanec SR, Daly BJ, Douglas SL, Lipson AR (2011) Work productivity and health of informal caregivers of persons with advanced cancer. Res Nurs Health 34:483–495
Wadhwa D, Burman D, Swami N, Rodin G, Lo C, Zimmermann C (2011) Quality of life and mental health in caregivers of outpatients with advanced cancer. Psychooncology, in press
Yabroff KR, Lamont EB, Mariotto A, Warren JL, Topor M, Meekins A, Brown ML (2008) Cost of care for elderly cancer patients in the United States. J Natl Cancer Inst 100:630–641
Van Houtven CH, Ramsey SD, Hornbrook MC, Atienza AA, van Ryn M (2010) Economic burden for informal caregivers of lung and colorectal cancer patients. Oncologist 15:883–893
Yabroff KR, Kim Y (2009) Time costs associated with informal caregiving for cancer survivors. Cancer 115:4362–4373
Zigmond AS, Snaith RP (1983) The hospital anxiety and depression scale. Acta Psychiatr Scand 67:361–370
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 52:69–77
Charlson ME, Pompei P, Ales KL, MacKenzie CR (1987) A new method of classifying prognostic comorbidity in longitudinal studies: development and validation. J Chronic Dis 40:373–383
Katz JN, Chang LC, Sangha O, Fossel AH, Bates DW (1996) Can comorbidity be measured by questionnaire rather than medical record review? Med Care 34:73–84
Covinsky KE, Goldman L, Cook EF, Oye R, Desbiens N, Reding D, Fulkerson W, Connors AF Jr, Lynn J, Phillips RS (1994) The impact of serious illness on patients' families. SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. JAMA 272:1839–1844
The SUPPORT Principal Investigators (1995) A controlled trial to improve care for seriously ill hospitalized patients. The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT). The SUPPORT Principal Investigators. JAMA 274:1591–1598
Vanderwerker LC, Laff RE, Kadan-Lottick NS, McColl S, Prigerson HG (2005) Psychiatric disorders and mental health service use among caregivers of advanced cancer patients. J Clin Oncol 23:6899–6907
Tucker-Seeley RD, Abel G, Prigerson HG (2012) Racial differences in the impact of financial hardship on the intensity of end-of-life cancer care. Paper presented at the American Society of Clinical Oncology, Chicago
Lawton MP, Brody EM (1969) Assessment of older people: self-maintaining and instrumental activities of daily living. Gerontologist 9:179–186
Cherlin EJ, Barry CL, Prigerson HG, Green DS, Johnson-Hurzeler R, Kasl SV, Bradley EH (2007) Bereavement services for family caregivers: how often used, why, and why not. J Palliat Med 10:148–158
Acknowledgments
This study was supported by Grant No. R03CA139862 from the National Cancer Institute. CM was supported by F32CA130600 from the National Cancer Institute and KL2 RR025760 (A. Shekhar, PI) from the National Center for Research Resources. The authors would like to thank the study participants, the thoracic oncology teams at Memorial Sloan–Kettering Cancer Center, Indiana University Simon Cancer Center, and the Roudebush VA Medical Center, Scarlett Ho, Aigul Amankeldi, Shannon M. Christy, and undergraduate students for their assistance.
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The authors do not have any conflicts of interest to disclose.
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Mosher, C.E., Champion, V.L., Azzoli, C.G. et al. Economic and social changes among distressed family caregivers of lung cancer patients. Support Care Cancer 21, 819–826 (2013). https://doi.org/10.1007/s00520-012-1585-6
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DOI: https://doi.org/10.1007/s00520-012-1585-6