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December 2013, Supplement to Volume 17, Number 6

 

Article

Caregivers of Multiple Myeloma Survivors

Sandra Kurtin, RN, MS, AOCN®, ANP-C, Kathryn Lilleby, RN, and Jacy Spong, RN, BSN, OCN®

 

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.

 

Living with multiple myeloma (MM), either as a patient or as a caregiver, implies a need to adapt to the requirements of the diagnosis, how it affects the individual patient, and what changes are necessary to support the patient, including treatment and supportive care. The patients and caregivers spend the majority of their time at home and receive the bulk of their health care in the outpatient setting. Therefore, assimilating complex information, often very rapidly, and developing skills for self-management of many complex processes is expected. The complexity of self-management skills and behaviors of patients and caregivers varies based on the individual disease attributes, the treatment plan, the general health of the patient, and social and financial situations unique to each patient. The chronic disease trajectory of MM is characterized by variability in survival and time to progression or relapse. Each relapse brings new challenges, and each episode of care creates patient and caregiver vulnerability. Patients considering a hematopoietic stem cell transplantation (HSCT) face specific self-management challenges. The availability of a reliable caregiver is a prerequisite to transplantation eligibility.

 

The diagnosis of MM, as with most cancer diagnoses, is a life-changing event. For the caregiver, whether formal or informal, this includes the uncertainty associated with a complex diagnosis, the fear of losing a loved one, and the often immediate need to provide skilled care, emotional support, and assistance with day-to-day necessities. Caregivers are most often relatives of the patient, but also may be friends, acquaintances, or volunteers. The number of caregivers and how they interact with the patient will vary, and all caregivers will experience some level of stress and feelings of uncertainty. In addition to struggling to find a unique role in supporting the patient, the caregiver also is dealing with his or her own feelings about the patient’s diagnosis with an incurable disease, the often sudden change in day-to-day activities, and the uncertainty about the ability to provide care for the patient. Having unexpected changes in the plan of care based on changes in the patient status is not uncommon, which adds to the stress for both the patient and the caregiver. Understanding the role of the caregiver in patients living with MM (including those undergoing HSCT), the dynamics of the patient-caregiver relationship, and the key elements of caregiver stress are necessary to effectively support both patients with MM and caregivers. The majority of patients with MM are older adults, requiring a working knowledge of the unique needs of the older adult for effective management. For younger patients, considering the change in family dynamics is necessary, as are the common challenges of managing a family with children while managing the care requirements for the patient. Optimal patient outcomes require the development of tools and strategies to support caregivers of MM survivors.

 

Preparing the Patient and Caregiver for Self-Management

 

The overall goal for the treatment of MM remains an early and sustained complete response (CR) with an acceptable level of toxicity and quality of life (QOL) (Palumbo & Cavallo, 2012). Achieving a CR has been identified as a key factor in improved progression-free survival and overall survival (OS); however, achieving a CR does not imply eradication of the malignant clone. The improvement in OS over time is attributed primarily to novel agents, with patients exposed to these agents achieving statistically significant longer survival compared to those who have not (Palumbo & Anderson, 2011). HSCT remains an important treatment option for MM in patients eligible for transplantation. This approach to therapy requires planning and collaboration among multiple healthcare providers, the patients, and their caregivers to allow adequate preparation for treatment, follow-up, and effective management of the expected treatment-emergent adverse events (TEAEs). Proactive and aggressive TEAE management is critical to allowing continuation of each treatment long enough to obtain and maintain an optimal response. Early identification and prompt intervention of common TEAEs will limit the severity of treatment and reduce the probability of patients discontinuing treatment prematurely.

 

With the majority of care provided in the outpatient setting, patients and their caregivers are expected to take a primary role in the self-management of their disease, including early identification and reporting of TEAEs. Some of the key elements of the caregiver role are provided in Figure 1. Many informal caregivers may feel inadequately prepared to assume responsibility for these tasks because of a lack of knowledge, the presence of health problems themselves, or preexisting dynamics between the patient and the caregiver (van Ryn et al., 2011). This may increase caregiver stress and contribute to a sense of loss of control.

 

Patient and family education with consistent information, frequent reinforcement of key concepts, and active participation of the patient and family is critical to optimizing outcomes (Kurtin & Demakos, 2010). Communicating clearly to the patients, and their caregivers, as well as to any collaborating providers, will reduce the anxiety associated with expected TEAEs and encourage consistency in the approach to management. Patients and caregivers should be encouraged to keep a binder that includes important contact information, a patient medical history, medications, supportive care resources, and a log of their treatment plan, blood counts, transfusion history, TEAEs, and how they were treated. This will provide an invaluable tool for not only the patient and caregiver, but also the healthcare team.

 

Individualizing patient and caregiver education also will encourage effective self-management behaviors. The average American reads at an eighth-grade level; however, most patient education materials are written well above that level (Fagerlin, Zikmund-Fisher, & Ubel, 2011). Visits to healthcare professionals often last 15–20 minutes, making it difficult to communicate complex ideas in a way that the patient and family will be able to understand, synthesize, and apply to informed care decisions. Healthcare professionals expect patients, family members, or other designated caregivers to assume a primary role in managing the illnesses (including managing TEAEs), reporting signs and symptoms, communicating among providers, and continuing to take an active role in decision making (Kurtin, 2012). However, patients with multiple health problems may have difficulty understanding the complexity of balancing their cancer treatment with the continued management of existing illnesses.

 

The most common toxicity associated with all active therapies for MM, including a transplantation, is myelosuppression (Kurtin & Bilotti, 2013). Infections, neutropenic fevers, and bleeding are the most common reasons patients seek emergency treatment following transplantation and are a major cause of morbidity and mortality. Although the definition of engraftment suggests adequate bone marrow function for outpatient management, many centers are conducting the majority of care for patients undergoing autologous HSCT (AHSCT) in the outpatient setting. Setting expectations for expected cytopenias and the anticipated time to recovery, providing concrete criteria for monitoring and reporting the signs and symptoms that require immediate attention, and developing standards for interventions will provide reassurance to the patient, promote early identification and treatment of infections, and limit hospitalizations. Each preparative regimen, ongoing treatment, and supportive care plan will carry specific recommendations for frequency of clinic visits, laboratory monitoring, ancillary testing, and supportive care. An individualized plan for monitoring and managing TEAEs should be prepared, discussed, and updated throughout the transplantation process to assist the patient and his or her caregiver in self-management.

 

Impact of Patient Quality of Life on the Caregiver

 

Caregiving intensity will vary throughout the MM disease continuum based on a number of treatment-, disease-, and patient-related factors. Similarly, health-related QOL (HRQOL) for the patient also will vary. Understanding factors that impact HRQOL for the patient with MM is necessary for understanding the variability in caregiver stress and QOL throughout the disease and treatment trajectory, and will provide guidance in developing tools and strategies for support of the caregiver.

 

Patients who receive an AHSCT can generally expect to return to or surpass pretransplantation physical and emotional role function and QOL. Patients with anxiety, depression, and symptom distress prior to transplantation are more likely to experience these same symptoms in the post-transplantation period, and women are more likely to experience post-transplantation depression overall (Wells, Booth-Jones, & Jacobsen, 2009). In addition, women generally return to work later than men and are less likely to return to work overall than men (Kirchohoff, Leisenring, & Syrjala, 2010). Older adult patients are more likely to adapt socially following transplantation (Sherman, Simonton, Latif, Plante, & Anaissie, 2009). Understanding these elements of patient HRQOL is essential to anticipating and evaluating potential caregiver strain and caregiver QOL.

 

Langer, Yi, Storer, and Syrjala (2010) conducted a prospective longitudinal study evaluating marital adjustment, satisfaction, and dissolution among 121 patients undergoing HSCT and 117 spouses at six time points starting with the pretransplantation evaluation period through five years of follow-up. Fifty-nine of the 121 initially married patients with a participating spouse survived to five years with only 7% (n = 4, two male, two female patients) of the marriages ending in dissolution. Interestingly, female spouses reported a higher rate of relationship maladjustment at all time points in the study. The authors suggest that these findings specific to female spouses of male patients may reflect societal norms in which females are expected to be caregivers, the tendency for female caregivers to provide the care without enlisting the help of family and friends, and the fact that women in general are more likely to be affected by the physical and psychological distress of their male partner/patient (Langer et al., 2010). The ability of the caregiver to adapt to the multitude of stressors inherent in the process of HSCT for patients with MM has been shown to affect family relationships important to the post-transplantation adjustment of the patient (Fife, Monahan, Abonour, Wood, & Stump, 2009).

 

Although at least 20 different assessment tools exist for screening adult caregivers of patients undergoing HSCT, the impact of caregiver strain or burnout on patient outcomes is not well researched in the MM and HSCT literature (Wulff-Burchfield, Jagasia, & Savani,  2013). Concepts gleaned from studies in other high-risk populations, including the mentally ill and frail older adults, suggest caregiver stress or burnout may negatively affect mortality, frequency of hospitalizations, and adherence to treatment routines (Wulff-Burchfield et al., 2013). Assessment of caregiver stress should be incorporated throughout the treatment continuum. Common signs of caregiver stress include anxiety, depression, emotional distress, loss of appetite, weight loss, fatigue, sleep disturbance, and loss of physical strength (Bevans & Sternberg, 2012; Wulff-Burchfield et al., 2013) (see Figure 2).

 

Fife et al. (2009) examined factors influencing the adaptation of caregivers of patients undergoing HSCT (N = 192) prior to hospitalization for transplantation (T1), during the hospitalization following the stem cell infusion, about one week prior to planned discharge (T2), and one month after discharge (T3). The patients included varied diagnoses, including MM, with 151 patients undergoing AHSCT (79%) and 41 patients (21%) undergoing allogenic HSCT. The majority of caregivers participating in this study were female (72%), married to the patient (91%), working full time (58%), and Caucasian (93%). Emotional distress increased significantly from T1 to T3, and coping strategies declined in that same time period. Interestingly, the sense of personal control, spirituality, and the caregiver-patient relationship remained stable from T1 to T3. A greater sense of personal control (p < 0.001), spirituality (p < 0.001), and active coping (p < 0.001) were strongly correlated with adaptation and lower levels of distress. Increased patient symptoms (p < 0.0001), financial strain (p = 0.0033), caregiver life changes (p < 0.0236), and avoidance as a coping strategy (p = 0.0079) were correlated with increased levels of distress. Avoidance was associated with negative adaptation. These data emphasize the need to adequately assess the coping strategies, patient-caregiver dynamics and communication patterns, and elements of spirituality (sense of meaning and peace as well as faith) for both the patient and caregiver prior to, during, and following HSCT. Strategies to adequately prepare the patient and caregiver for self-management strategies will promote a sense of personal control.

 

Screening the patient and caregivers, both together and separately, for pretransplantation stressors and existing coping behaviors, with periodic reassessment may reduce caregiver strain by assisting with a tailored support plan. Setting realistic expectations for the patient and caregiver prior to signing the consent for HSCT, in terms of potential physical, emotional, social, and spiritual challenges, with expected duration of these changes, based on the individual patient attributes and type of transplantation, may help in identifying the needed support. Understanding the common patient and caregiver perceptions and associated daily activities will allow development of patient- and caregiver-specific supportive care strategies. All caregivers should be encouraged to outline their available resources including family, friends, volunteers, organizations, and Internet resources. Female caregivers of male patients, in particular, should be encouraged to seek tangible help from family and friends and take breaks from caregiving.

 

Communication strategies between caregivers and patients vary widely. Discordance between caregiver and patient knowledge-seeking behaviors may add burden to the caregiver, particularly in instances where bad news may be shared (Molassiotis, Wilson, Blair, Howe, & Cavet, 2011). The caregiver must prepare for the possibility of an unfavorable outcome, in some cases even death of the patient, but may be conflicted with a need to bolster hope while continuing to help the patient manage the day-to-day tasks of living with MM. Strategies to promote effective patient and caregiver self-management include several key elements: consistent and clear communication that allows the patient to make informed decisions, reinforcement of key messages at each visit, adjustment of visit frequency to the specific phase of survivorship and healthcare needs, integration of community programs and resources, and development of mutually determined goals (Kurtin, 2012; McCorkle et al., 2011). Key qualities of clear communication include adequate description of the disease and prognosis; open, honest, and timely communication; and increased patient participation in decision making with clinician assessment of individual preferences for information (Colosia et al., 2011; Rodin et al., 2009). Communication of risks versus benefits is perhaps one of the most complicated processes necessary for informed decision making and consent for treatment, including HSCT. Healthcare professional descriptions often are complex and not well understood by the patient and family (Fagerlin et al., 2011).

 

Healthcare professionals can provide additional support by allowing patients adequate time to review presented material, if clinically possible; providing written materials in addition to verbal explanations; identifying community-based, national, or international resources for patient support; and incorporating members of the multidisciplinary team in the discussion with patients (Barry, 2011; McCorkle et al., 2011). Selected resources for patients with MM and caregivers are included in Figure 3. Optimally, the multidisciplinary team members will be well informed about the individual patient situation to avoid conflicting or confusing messages. Incorporation of adult learning principles, adaptation for language barriers, and consideration of the spiritual and cultural needs of the patient and caregiver are ideal.

 

Caregiver Self-Care

 

The level of distress experienced by caregivers of patients undergoing HSCT has been shown to exceed that of the patient themselves, and caregivers are less likely to be screened for, seek, and receive support services (Fife et al., 2009; Langer et al., 2010). Factors associated with caregiver distress include avoidance behaviors, financial strain, and life changes for the caregiver. Financial strain is inevitable for patients undergoing an HSCT. Loss of employment and, in many cases, a fear of losing insurance is of major concern. This may present added stress in trying to balance the needs of the patient, the need to maintain employment, manage a household, and care for other members of the family. If the patient is the primary wage earner, the spouse or partner may need to seek additional employment. Patients who are single and have limited or no access to relatives as caregivers present a particular challenge.

 

Out-of-pocket expenses during treatment may be substantial and add to financial strain. A pilot study conducted by Majhail et al. (2013) evaluating out-of-pocket expenses for patients and caregivers (n = 22) in the first three months following HSCT estimated median expenses of $2,440 (range = $199–$13,769), with those requiring temporary relocation to housing near the transplantation center incurring higher expenses than those who do not require relocation (median = $5,247 versus $716). The majority of patients in this pilot study had private insurance through a managed care plan (56%), with Medicaid (20%) and Medicare (18%) being less common (Majhail et al., 2013). Meehan et al. (2006) estimated median out-of-pocket costs for housing for the caregiver during the patient’s inpatient stay to be $560. In addition to housing, copayments for visits and medications, transportation, and food represented the most common sources of out-of-pocket expenses in these studies. Prior authorization for HSCT is a part of the initial screening of patient eligibility. Similar rigor should be applied in discussion of individual financial resources, including anticipated out-of-pocket expenses based on the region and available assistance programs.

 

Sherwood et al. (2008) evaluated 80 caregivers of patients with primary brain tumors. An increased need for assistance with independent ADLs in patients was correlated with lost time from work in this population of caregivers. Measures of ADLs or independent ADLs have been incorporated into measures of vulnerability (performance status, comorbidities, and frailty) and are central to risk-adapted treatment selection for patients being considered for a stem cell transplantation or other more intensive therapies for MM (Palumbo et al., 2011).

 

Caregiver life change is a complex concept with wide variability. Caregiver burden is a result of the responsibilities of caregiving (direct care, indirect care, other care responsibilities) and the changes in normal routines and lifestyle as a result of these responsibilities (Stenberg, Ruland, & Miaskowski, 2010). All caregivers experience some level of caregiver burden and secondary effects on physical, social, and emotional well-being. For those caregivers who continue to work, the added burden of caregiving may affect work life and the ability to maintain employment. Several studies have identified a number of physical, social, emotional, and spiritual elements of caregiver burden or distress. Familiarity with these attributes will assist in assessing caregiver distress, developing individualized support strategies, and promoting caregiver self-care (see Figure 4).

 

Some of the unmet needs identified by caregivers in these studies include managing concerns for cancer recurrence, finding out about financial support and government benefits, strategies to maintain the caregiver’s own physical and emotional health, balancing the needs of the patient with the caregivers own needs, sexuality and sexual health, and dealing with other caregivers and non-caregivers (Armoogum, Richardson, & Armes, 2013; Ferrell, Hanson, & Grant, 2013).

 

Conclusion

 

Caregivers are essential for the optimal outcomes of patients with MM throughout the disease process, in particular during HSCT. Active participation of caregivers, whether formal or informal, is expected to be, yet not always, readily available or feasible for all patients. Familiarity with local, regional, national, and international resources together with development of local network of support will facilitate development of an interdisciplinary and individualized supportive care plan. The vulnerability of the patients and their caregivers in the transplantation process requires careful assessment of potential attributes or dynamics that place them at risk. Similar to the widely accepted approach to risk-adapted treatment selection based on disease and individual clinical attributes, an equally rigorous risk-adapted approach must be applied to assessment and planning for both the patient and the caregiver. Understanding the dynamics of the patient-caregiver relationship, the strengths and weakness unique to that relationship, common elements of caregiver stress or strain, and available tools and strategies to promote a sense of control and enhanced self-management skills may improve the HRQOL for both the patient and the caregiver.

 

The authors gratefully acknowledge Brian G.M. Durie, MD, Robert A. Kyle, MD, Diane P. Moran, RN, MA, EdM, senior vice president of strategic planning, and Robin Tuohy, AS, senior director of support groups at the International Myeloma Foundation, for their critical review of the manuscript.

 

Implications for Practice

 

Ř  Educate caregivers about the stresses and expectations they will face during the patient’s journey with multiple myeloma.

 

Ř  Provide assistance to caregivers of patients with multiple myeloma by suggesting hospital and community resources to help them cope with added responsibility.

 

Ř  Assess caregivers for impaired quality of life caused by the physical and emotional demands of assisting the patient through pre- and post-treatment phases of care.

 

References

 

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

 

Barry, M.J. (2011). Helping patients make better personal health decisions: The promise of patient-centered outcomes research. JAMA, 306, 1258–1259. http://dx.doi.org/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. JAMA, 307, 398–403. http://dx.doi.org/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. Cancer, 117, 884–896. http://dx.doi.org/10.1002/cncr.25644

 

Fagerlin, A., Zikmund-Fisher, B.J., & Ubel, P.A. (2011). Helping patients decide: Ten steps to better risk communication. Journal of the National Cancer Institute, 103, 1436–1443. http://dx.doi.org/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. Psycho-Oncology, 22, 1645–1652. http://dx.doi.org/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. Bone Marrow Transplantation, 43, 959–966. http://dx.doi.org/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. Journal of Cancer Survivorship, 4, 33–44. http://dx.doi.org/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.), Current trends in oncology nursing (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. Journal of Advanced Practice Oncology, 4, 307–321.

 

Kurtin, S.E., & Demakos, E.P. (2010). An update on the treatment of myelodysplastic syndromes [Online exclusive]. Clinical Journal of Oncology Nursing, 14, E29–E44. http://dx.doi.org/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. Psycho-Oncology, 19, 190–200. http://dx.doi.org/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. Bone Marrow Transplantation, 48, 865–871. http://dx.doi.org/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. CA: A Cancer Journal for Clinicians, 61, 50–62. http://dx.doi.org/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. Journal of Supportive Oncology, 4, 187–190.

 

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

 

Palumbo, A., & Anderson, K. (2011). Multiple myeloma. New England Journal of Medicine, 364, 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). Blood, 118, 4519–4529. http://dx.doi.org/10.1056/NEJMra1011442

 

Palumbo, A., & Cavallo, F. (2012). Have drug combinations supplanted stem cell transplantation in myeloma? Blood, 120, 4692–4698. http://dx.doi.org/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. Supportive Care in Cancer, 17, 627–644. http://dx.doi.org/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. Biology of Blood Marrow Transplantation, 15, 12–20. http://dx.doi.org/ 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. Psycho-Oncology, 17, 598–605. http://dx.doi.org/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. Psycho-Oncology, 19, 1013–1025. http://dx.doi.org/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? Psycho-Oncology, 20, 44–52. http://dx.doi.org/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? Journal of Psychosocial Oncology, 27, 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. Bone Marrow Transplantation, 48, 469–473. http://dx.doi.org/10.1038/bmt.2012.123

 

Sandra Kurtin, RN, MS, AOCN®, ANP-C, is a nurse practitioner and clinical assistant professor of medicine in the Hematology/Oncology Division of Arizona Cancer Center in Tucson; Kathryn Lilleby, RN, is a research clinical nurse at the Fred Hutchinson Cancer Research Center in Seattle, WA; and Jacy Spong, RN, BSN, OCN®, is an RN coordinator at the Mayo Clinic in Scottsdale, AZ. The authors received editorial support from Alita Anderson, MD, with Eubio Medical Communications in preparation of this article supported by Sanofi Oncology. The authors are fully responsible for content and editorial decisions about this article. Kurtin serves as a consultant for Celgene Corporation, Novartis Pharmaceuticals, Millennium: The Takeda Oncology Company, and Onyx Pharmaceuticals. Lilleby and Spong have no financial relationships to disclose. The content of this article has been reviewed by independent peer reviewers to ensure that it is balanced, objective, and free from commercial bias. No financial relationships relevant to the content of this article have been disclosed by the independent peer reviewers or editorial staff. Kurtin can be reached at sandra.kurtin@uahealth.com, with copy to editor at CJONEditor@ons.org. (Submitted July 2013. Revision submitted September 2013. Accepted for publication September 12, 2013.) 

 

http://dx.doi.org/10.1188/13.CJON.S2.25-32