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Article

Caregivers of Multiple Myeloma Survivors

Sandra Kurtin
Kathryn Lilleby
Jacy Spong
CJON 2013, 17(6), 25-32 DOI: 10.1188/13.CJON.S2.25-32

Patients living with multiple myeloma (MM) face complex decisions throughout their journey relative to their diagnosis, options for treatment, and how their disease and treatment choices may affect them physically, emotionally, financially, and spiritually. Patients considering a hematopoietic stem cell transplantation face specific self-management challenges. The availability of a reliable caregiver is a prerequisite to transplantation eligibility. Currently, the majority of clinical management is episodic and provided in the outpatient setting. Therefore, the bulk of care for patients living with MM is provided by the patient together with his or her caregivers. Caregivers face similar challenges to those faced by the patient living with MM. They are required to take in complex information, perform often complicated or technical procedures such as line care or injections, assist the patient with activities of daily living, and attend the myriad of appointments required. Understanding the dynamics of the patient-caregiver relationship, the strengths and weaknesses unique to that relationship, common elements of caregiver stress or strain, and available tools and strategies to promote a sense of control and enhance self-management skills may improve the health-related quality of life for both the patient with MM and his or her caregiver.

References 

Armoogum, J., Richardson, A., & Armes, J. (2013). A survey of the supportive care needs of informal caregivers of adult bone marrow transplant patients. <i>Supportive Care in Cancer, 21</i>, 977-986. doi:10.1007/s00520-012-1615-4

Barry, M. J. (2011). Helping patients make better personal health decisions: The promise of patient-centered outcomes research. <i>JAMA, 306</i>, 1258-1259. doi:10.1001/jama.2011.1363

Bevans, M. F., & Sternberg, E. F. (2012). Caregiving burden, stress, and health effects among family caregivers of adult cancer patients. <i>JAMA, 307</i>, 398-403. doi:10.1001/jama.2012.29

Colosia, A. D., Peltz, G., Pohl, G., Liu, E., Copely-Merriman, K., Khan, S., & Kay, J. A. (2011). A review and characterization of the various perceptions of quality cancer care. <i>Cancer, 117</i>, 884-896. doi:10.1002/cncr.25644

Fagerlin, A., Zikmund-Fisher, B. J., & Ubel, P. A. (2011). Helping patients decide: Ten steps to better risk communication. <i>Journal of the National Cancer Institute, 103</i>, 1436-1443. doi:10.1093/jnci/djr318

Ferrell, B., Hanson, J., & Grant, M. (2013). An overview and evaluation of the oncology family caregiver project: Improving quality of life and quality of care of oncology family caregivers. <i>Psycho-Oncology, 22</i>, 1645-1652. doi:10.1002/pon.3198

Fife, B. L., Monahan, P. O., Abonour, R., Wood, L. L., & Stump, T. E. (2009). Adaptation of family caregivers during the acute phase of adult BMT. <i>Bone Marrow Transplantation, 43</i>, 959-966. doi:10.1038/bmt.2008.405

Kirchohoff, A. C., Leisenring, W., & Syrjala, K. L. (2010). Prospective predictors of return to work in the five years after hematopoietic cell transplantation. <i>Journal of Cancer Survivorship, 4</i>, 33-44. doi:10.1007/s11764-009-0105-2

Kurtin, S. (2012). Primary care of the cancer survivor: A collaborative continuum-based model for care. In J. Payne (Ed.), <i>Current trends in oncology nursing</i> (pp. 191-210). Pittsburgh, PA: Oncology Nursing Society.

Kurtin, S., & Bilotti, E. (2013). Novel agents for the treatment of multiple myeloma: Proteasome inhibitors and immunomodulatory agents. <i>Journal of Advanced Practice Oncology, 4</i>, 307-321.

Kurtin, S. E., & Demakos, E. P. (2010). An update on the treatment of myelodysplastic syndromes [Online exclusive]. <i>Clinical Journal of Oncology Nursing, 14</i>, E29-E44. doi:10.1188/10.CJON.E29-E44

Langer, S. L., Yi, J. C., Storer, B. E., & Syrjala, K. L. (2010). Marital adjustment, satisfaction, and dissolution among hematopoietic stem cell transplant patients and spouses: A prospective, five-year longitudinal investigation. <i>Psycho-Oncology, 19</i>, 190-200. doi:10.1002/pon.1542

Mahjail, N. S., Rizzo, J. D., Hahn, T., Lee, S. J., McCarthy, P. L., Ammi, M., … Pederson, K. (2013). Pilot study of patient and caregiver out-of-pocket costs of allogeneic hematopoietic cell transplantation. <i>Bone Marrow Transplantation, 48</i>, 865-871. doi:10.1038/bmt.2012.248

McCorkle, R., Ercolano, E., Lazenby, M., Schulman-Green, D., Schilling, L. S., Lorig, K., & Wagner, E. H. (2011). Self-management: Enabling and empowering patients living with cancer as a chronic illness. <i>CA: A Cancer Journal for Clinicians, 61</i>, 50-62. doi:10.3322/caac.20093

Meehan, K. R., Fitzmaurice, T., Root, L., Kimtis, E., Patchett, L., & Hill, J. (2006). The financial requirements and time commitments of caregivers for autologous stem cell transplant recipients. <i>Journal of Supportive Oncology, 4</i>, 187-190.

Molassiotis, A., Wilson, B., Blair, S., Howe, T., & Cavet, J. (2011). Living with multiple myeloma: Experiences of patients and their informal caregivers. <i>Supportive Care in Center, 19</i>, 101-111. doi:10.1007/s00520-009-0793-1

Palumbo, A., & Anderson, K. (2011). Multiple myeloma. <i>New England Journal of Medicine, 364</i>, 1046-1060.

Palumbo, A., Bringhen, S., Ludwig, H., Dimopoulos, M. A., Blade, J., Mateos, M. V., … Sonneveld, P. (2011). Personalized therapy in multiple myeloma according to patient age and vulnerability: A report of the European Myeloma Network (EMN). <i>Blood, 118</i>, 4519-4529. doi:10.1056/NEJMra1011442

Palumbo, A., & Cavallo, F. (2012). Have drug combinations supplanted stem cell transplantation in myeloma? <i>Blood, 120</i>, 4692-4698. doi:10.1182/blood-2012-05-423202

Rodin, G., Mackay, J. A., Zimmerman, C., Mayer, C., Howell, D., Katz, M., … Brouwers, M. (2009). Clinician-patient communication: A systematic review. <i>Supportive Care in Cancer, 17</i>, 627-644. doi:10.1007/s00520-009-0601-y

Sherman, A. C., Simonton, S., Latif, U., Plante, T. G., & Anaissie, E. J. (2009). Changes in quality-of-life and psychosocial adjustment among multiple myeloma patients treated with high-dose melphalan and autologous stem cell transplantation. <i>Biology of Blood Marrow Transplantation, 15</i>, 12-20. doi: 10.1016/j.bbmt .2008.09.023

Sherwood, P. R., Donovan, H. S., Given, C. W., Lu, X., Given, B. A., Hricik, A., & Bradley, S. (2008). Predictors of employment and lost hours from work in cancer caregivers. <i>Psycho-Oncology, 17</i>, 598-605. doi:10.1002/pon.1287

Stenberg, U., Ruland, C. M., & Miaskowski, C. (2010). Review of the literature on the effects of caring for a patient with cancer. <i>Psycho-Oncology, 19</i>, 1013-1025. doi:10.1002/pon.1670

van Ryn, M., Sanders, S., Kahn, K., van Houtven, C., Griffin, J. M., Martin, M., … Rowland, J. (2011). Objective burden, resources, and other stressors among informal cancer caregivers: A hidden quality issue? <i>Psycho-Oncology, 20</i>, 44-52. doi:10.1002/pon.1703

Wells, K. J., Booth-Jones, M., & Jacobsen, P. B. (2009). Do coping and social support predict depression and anxiety in patients undergoing hematopoietic stem cell transplantation? <i>Journal of Psychosocial Oncology, 27</i>, 297-315.

Wulff-Burchfield, E. M., Jagasia, M., & Savani, B. N. (2013). Long-term follow-up of informal caregivers after allo-SCT: A systematic review. <i>Bone Marrow Transplantation, 48</i>, 469-473. doi:10.1038/bmt.2012.123