It goes without saying that cancer causes a great burden on the patient, but few consider the great burden it causes on the informal caregivers. An informal caregiver, usually a close family member or occasionally a friend, perform a great number of services to the cancer patient. These include practical help, such as driving the patient to the hospital and taking over the family responsibilities such as childcare and household finances. Additional care includes helping with medication and supporting the patient’s comfort and well-being. As informal caregivers serve this critical support role for their loved ones, they often experience a decline in their quality of life that puts them at a higher risk of developing depression. Clearly, the health of the caregiver is important in itself, but declining caregiver health can directly impact the health and wellbeing of the cancer patient. Since the caregiver is often a spouse, their reduced health can have broader effects, particularly if they have children. It is therefore an emerging topic in the healthcare field that the health of the informal caregiver is of great importance to the outcome of a cancer patient.
The Physical and Emotional Toll of HSCT Patient Care
Hematopoietic stem cell transplantation (HSCT) offers a cure for some blood cancer patients. HSCT is an intensive procedure often requiring long hospitalization. After discharge, the patient must still be followed by medical professionals to be sure that the side effects are manageable and the cancer is in remission. In addition, patients are at a much higher risk of infection. For patients whose stem cell donor is not themselves, there is a significant risk of graft versus host disease (GVHD), a condition caused by the donor cells attacking the patient’s healthy cells. Besides the cancer itself, GVHD is the most significant contributor to mortality in HSCT patients. The uncertainty of whether a patient will experience GVHD, as well as whether the cancer will return, weighs heavily on both the patient and the informal caregiver. There is a newer approach to HSCT recovery for some patients that involves earlier discharge to allow for recovery at home. However, while this approach may result in fewer infections and better nutrition for the patient, it may actually increase the burden of the caregiver, given the necessity for them to provide 24-hour care. Therefore, there is a critical need for the caregiver before, during, and after HSCT, and this prolonged period weighs heavily on many caregivers.
New Study Aims to Improve Informal Caregivers’ Quality of Life
Dr. Areej El-Jawahri recently published a study to address the needs of informal caregivers of HSCT patients. Dr. El-Jawahri is an Assistant Professor of Medicine at Massachusetts General Hospital and Harvard Medical School and is a Scholar in Clinical Research of The Leukemia & Lymphoma Society. She is dedicated to a career helping blood cancer patients and their caregivers have a better quality of life.
Dr. El-Jawahri performed a study to address caregiver burden before, during, and after HSCT. This clinical trial used a multi-pronged approach to attempt to reduce some of the burden on the informal caregivers, hopefully leading to an improved quality of life. Since these caregivers already have a high burden, one important question is whether they would perceive participating in this intervention as adding to their burden or, as hoped, a means to potentially reduce their burden. Therefore, the primary goal of this study was to determine the feasibility of caregivers’ participation. A secondary goal of the study was to determine the efficacy of the intervention.
Each participating caregiver met with a qualified medical professional for six sessions (~1 hour/session) to better understand the expectations of HSCT patient needs and care as well as caregiver coping strategies. The caregiver learned practical knowledge, such as medication management and other issues of preparedness. The caregiver also learned how to incorporate cognitive behavioral strategies into daily life. These included mindfulness, coping strategies to address their caregiving burden, and acceptance-based skills to manage the uncertainty associated with a cancer diagnosis followed by HSCT. Other important skills learned are self-care strategies to enhance the caregiver’s physical and mental health.
Caregivers were assessed prior to the patient’s HSCT to provide a baseline of their quality of life, mood and anxiety, and their confidence in providing care for the HSCT patient. These assessments were also done at days 30 and 60.
Almost 75% of caregivers that Dr. El-Jawahri’s team identified as eligible enrolled in the study. This high enrollment rate suggests that most caregivers are interested in participating. A better understanding of the nature of the perceived burden from those who did not participate may provide a means to reduce that burden for future participants. The remaining caregivers were randomized, with half receiving the intervention and half receiving the usual care. For “usual care,” social workers meet with patients and caregivers once prior to transplant and are available for additional support if needed.
Study’s Results Suggest Feasibility and Efficacy
Most of the caregivers were the spouses of the patients (82%). Most attended at least 50% of the intervention sessions (a clinical trial primary endpoint measure) while 69% attended all sessions. These high enrollment and participation rates demonstrate the feasibility of the intervention and show that most caregivers feel that this is worthwhile. Half of the caregivers had their sessions over the phone or via video conferencing. Given the various time constraints on caregivers, it is likely that having the option to participate remotely greatly reduced subjects’ perception that participation in the study would be a burden to them.
Caregivers participating in the intervention sessions had a higher quality of life and reported a lower burden when compared to those caregivers in the “usual care” group. Importantly, they also reported fewer symptoms of anxiety and depression. Perhaps most significantly, caregivers participating in the intervention sessions reported higher self-efficacy in their ability to care for their loved ones as well as higher coping skills. Since self-efficacy and coping skills may affect other aspects of well-being, these improvements may have broader benefits to the caregivers. All of these improvements are significantly higher when comparing caregivers in the intervention with the “usual care” groups.
This study is significant in that an intervention that consists of only six brief sessions provides significant improvements in caregivers. It is becoming increasingly understood that the health and well-being of informal caregivers for HSCT patients is critical to the health and well-being of the patient, and therefore, the success of the HSCT. Providing an intervention that is not a time burden may be an easy and cost-effective way of improving HSCT patient outcomes. In addition, this successful clinical trial used phone or videoconferencing for half of the participants, suggesting that this approach has broad applicability and is not tied to any major cancer center.
Next Steps for Gauging Long-Term Benefit
The success of this small study demonstrates the need to have a larger study at multiple hospitals with a greater diversity of patients. In addition, further follow up with both the informal caregivers and the patients is needed to determine the long-term effects of this intervention. Does the intervention lead to sustained positive effects on the caregiver, or would lasting benefit require additional interventions in the years to follow? What are the outcomes of HSCT patients whose caregivers participated in intervention sessions? If a relatively straightforward intervention improves the caregiver’s capacity to help the HSCT patient and results in improved patient outcomes, this would be of significant benefit to both the caregiver and the patient.
Dr. Areej El-Jawahri is supported by The Leukemia & Lymphoma Society through a Career Development Program Scholar in Clinical Research Award.
El-Jawahri A, Jacobs JM, Nelson AM, et al. Multimodal Psychosocial Intervention for Family Caregivers of Patients Undergoing Hematopoietic Stem Cell Transplantation: A Randomized Clinical Trial. Cancer. Published online January 3, 2020