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Originally published as JCO Early Release 10.1200/JCO.2005.96.008 on September 6 2005 © 2005 American Society of Clinical Oncology.
Who's Taking Care of the Caregiver?National Cancer Institute, Bethesda, MD Throughout the last decade, caring for a loved one with a cancer diagnosis has developed both in the sheer numbers of people providing the service and in the complexity of tasks required by cancer patients. Between 1997 and 2005, the number of Americans diagnosed with cancer has grown from 900,000 to 1.3 million, and the number of survivors has grown from 7.4 million to 9 million.1 With cancer care now routinely being delivered on an outpatient basis, informal caregivers' responsibilities have gone far beyond the tasks of transportation, shopping, household chores, and personal care. Administering oral and parenteral medications, performing wound care, and monitoring signs and symptoms are a few of the more demanding, yet routine tasks. The selection of an informal caregiver, like the diagnosis of cancer itself, is a random event, and there are no training programs to prepare individuals to be one. Thus, it comes as no surprise when we read of a new study, once again, highlighting the physical, emotional, and economic burdens that caregiving has placed on families and friends. What have these studies taught us throughout the years? Just as we have learned that cancer is not one disease, but a constellation of many, informal caregiving is not a simple occurrence, as the caring reflects the variability associated with the type and stage of disease, age of the patient, and the treatment modalities. However, these variables that constitute the process of caregiving are only a part of the picture. What about the caregiver? What attributes does she (more than 80% are women) bring to this experience? What impact has the cancer diagnosis had on her and her family? What is the financial situation? These and many more questions have been explored for several decades, and a complex picture of the many variables affecting the caregiver and caregiving process is emerging. One example of this is found in a longitudinal study of 148 newly diagnosed colorectal cancer patients and their partners. Nijboer et al2 proposed a model that incorporated the interplay of patient and caregiver characteristics, as well as environmental resources to predict changes in a caregiver's depression. They found that caregivers who scored low on their perceptions of their mastery of caregiver tasks, low on their level of daily emotional support, and perceived caregiving in a more negative way were identified as more depressed over time. In this issue of the Journal of Clinical Oncology, Vanderwerker et al3 report the results of their interviews with 200 informal caregivers of patients with advanced-stage cancer to determine the prevalence of psychiatric disorders, as well as to gain a better understanding about referrals to and receipt of mental health interventions. The investigators' approach to data collection, using a structured interview and asking caregivers about their use of mental health services before and after the diagnosis of cancer provides us with some interesting perspectives on the emotional health and needs of this growing population. In place of the more common approach to using validated symptom inventories such as the Profile of Moods Scale4 or the Center for Epidemiological Studies Depression Scale5 to ascertain the prevalence of depression, anxiety, and other psychiatric disorders, the investigators used the Structured Clinical Interview for the DSM-IV (SCID) Axis I Modules6 to diagnose current psychiatric disorders among their sample. This approach yielded findings that differed from other studies examining levels of emotional distress among caregivers7,8 in that investigators in the current study found lower rates of depression, but also new problems, most notably panic disorder. Data on caregivers' use of mental health services before and after the diagnosis of cancer revealed that fewer than half of the caregivers with a current DSM-IV disorder had discussed their mental health with a clinician since the patient's cancer diagnosis. Unlike Nijboer's work, these investigators set out to more precisely determine the prevalence of depression, not examine the multiple stressors that may be contributing to its existence. They are not to be faulted for their narrow examination of the problem, but commended for pointing out how many vulnerable individuals slipped through the cracks. Numerous studies have repeatedly shown that caregivers are at risk for poor outcomes if their physical and emotional needs are left unattended.9-11 These data raise important and interesting clinical questions, both from a practice, as well as a research perspective. Where does the responsibility sit for asking cancer caregivers about their emotional well being? Does caring for our oncology patients also include asking simple, but pointed questions about their caregivers' coping and emotional health? How should the data from this study guide the next set of research questions? In their review of the body of literature on caregivers, Thomas and Morris12 conclude that the caregiver is no longer a bystander in cancer care, but is an actual or potential "co-user" or "co-client" of services. If we are to accept this, what then are our explicit responsibilities? Rabow et al13 identify five areas of opportunity for physicians to be of service to family members caring for patients at the end of life. The authors point out that although a physician's legal obligation is to the patient, the physician's role should extend beyond what is required by law to provide the best possible care for the patient. The five areas include recognizing the burdens of family caregiving, communicating well, assisting with decision making, supporting home care, helping with caregiver emotions, and acknowledging bereavement. Simple screening questions such as, "how is the caregiving going for you?" or "how is the family doing" may help prevent some caregivers from slipping through the cracks. Responses to these questions can serve as the starting point for referrals to appropriate resources. Despite our increasing understanding of the world of cancer caregivers, much remains to be explored and answered. For example, a diagnosis of advanced cancer no longer means imminent death, and this holds true in the current study. Despite their diagnosis of advanced cancer, the patients' mean Zubrod score in the study of Vanderwerker et al1 was 1.3. What is the impact on the caregiver with this longer life span? How much more responsibility will the caregiver have to assume in reporting clinical data to health care providers, and how will these added responsibilities impact their day-to-day coping? Can health care providers improve caregiver outcomes by asking the few simple questions posed by Rabow et al,12 and refer appropriately? Studies are sorely needed to identify and test interventions that will prevent or alleviate the stress and distress of caregiving. A recent search of the National Institutes of Health's Computer Retrieval of Information on Scientific Projects revealed more than 30 funded studies in informal cancer caregiving, ranging from testing interventions, to improving caregiver sleep patterns, to exploring informal caregiving in vulnerable and underserved populations.14 Informal caregiving is a fact of life in health care, and it will only become a larger factor in the world of decreasing resources. Meeting the needs of our informal caregivers is not just a medical problem, but a societal one requiring the expertise, creativity, and energies of many disciplines. Author's Disclosures of Potential Conflicts of Interest The author indicated no potential conflicts of interest. REFERENCES 1. American Cancer Society, Facts and Figures, 1997 and 2005. http://www.cancer.org/docroot/STT/stt_0.asp 2. Nijboer C, Tempelaar R, Triemstra M, et al: The role of social and psychologic resources in caregiving of cancer patients. Cancer 91:1029-1039, 2001[CrossRef][Medline]
3. Vanderwerker LC, Laff RE, Kadan-Lottick NS, et al: Psychiatric disorders and mental health service use among caregivers of advanced cancer patients. J Clin Oncol 23:6899-6907, 2005 4. McNair DM, Lorr M, Droppleman LF: Manual for the profile of Mood States. Toronto, Ontario, Canada, Multi-Health Systems Inc, 1992 5. Radloff LS: The CES-D scale: A self-report depression scale for research in the general population. Appl Psychol Meas 1:385-401, 1977[CrossRef]
6. Williams JBW, Gibbon M, First MB, et al: The structured clinical interview for DSM-III-R (SCID): II Multi-test-retest reliability. Arch Gen Psychiatry 49:630-636, 1992 7. Kozachik SL, Given CW, Given BA, et al: Improving depressive symptoms among caregivers of patients with cancer: Results of a randomized clinical trial. Oncol Nurs Forum 28:1149-1157, 2001[Medline] 8. Nijboer C, Triemstra M, Tempelaar R, et al: Determinants of caregiving experiences and mental health of partners of cancer patients. Cancer 86:577-588, 1999[CrossRef][Medline]
9. Navaie-Waliser M, Feldman PH, Gould DA, et al: When the caregiver needs care: The plight of vulnerable caregivers. Am J Public Health 92:409-413, 2002
10. Stein MD, Crystal S, Cunningham WE, et al: Delays in seeking HICV care due to competing caregiver responsibilities. Am J Public Health 92:1305-1311, 2002 11. Cameron JI, Franche RL, Cheung AM, et al: Lifestyle interference and emotional distress in family caregivers of advanced cancer patients. Cancer 94:521-527, 2002[CrossRef][Medline] 12. Thomas C, Morris SM: Informal careers in cancer contexts. Eur J Cancer Care (Engl) 11:178-182, 2002
13. Rabow MW, Hauser JM, Adams J: Supporting family caregivers at the end of life: "They don't know what they don't know." JAMA 291:483-491, 2004 14. Computer Retrieval of Information on Scientific Projects. Accessed June 1, 2005. http://crisp.cit.nih.gov/crisp/crisp_lib.query
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Copyright © 2005 by the American Society of Clinical Oncology, Online ISSN: 1527-7755. Print ISSN: 0732-183X
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