Examining Distress Levels in Caregivers of Multiple Myeloma Patients

Caregivers of patients with multiple myeloma face similar challenges to those faced by the patients themselves. Multiple myeloma caregivers must assist the patient with daily activities, understand complex information about the chronic disease, attend medical appointments, and even perform complicated and technical procedures. Each relapse presents new challenges, and each episode of care creates patient and caregiver vulnerability. Because of the nature of the disease, the caregivers are often faced with physical, social, emotional, and financial problems. (Clin J Oncol Nurs. 2013;17[suppl]: 25-32).

With the majority of multiple myeloma procedures taking place in the outpatient setting, both caregivers and patients are expected to take the primary role in managing the disease. In order to manage the disease, caregivers must become educated on complex matters and with physician visits lasting around 20 minutes, it is difficult for both the patient and caregiver to understand treatment options and other disease information.

Healthcare professionals expect the patient and the caregiver to remain active in treatment decisions and to identify any treatment-related adverse events.

When a patient decides to undergo hematopoietic stem cell transplantation (HSCT), more stress is involved for both the patient and the caregiver. A prospective longitudinal study evaluated the marital adjustments, satisfaction, and dissolution among 121 patients undergoing HSCT and 117 spouses.¹ The study looked at six timepoints starting with the pretransplantation evaluation period through 5 years of follow-up.

The study found that 59 of the 121 initially married patients with a participating spouse survived to 5 years with only 7% (n = 4, two female, two male patients) of the marriages ending in dissolution. Female spouses reported a higher rate of relationship maladjustment at all timepoints during the course of the study. The authors accounted for this dissatisfaction by suggesting that women feel the need to fill the societal role of the caregiver without help and that women are more likely to be affected by the physical and psychological distress of their male partner/patient.¹

A separate study examined factors influencing the adaptation of caregivers of patients undergoing HSCT (n = 192) prior to hospitalization for transplantation, during the hospitalization following the stem cell infusion, about 1 week prior to planned discharge and 1 month after discharge.2 The patients included varied diagnoses, including multiple myeloma, with 151 patients undergoing autologous HSCT (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%).

This study found that emotional distress increased significantly between time before hospitalization and 1 month after discharge. However, the sense of personal control, spirituality, and the caregiver—patient relationship remained stable during this time.

The level of distress experienced by caregivers of patients undergoing HSCT has been shown to exceed that of the patients themselves.^1,2 Financial strain is inevitable for patients undergoing an HSCT and their caregivers. A pilot study evaluated out-of-pocket expenses for patients and caregivers (n = 22) in the first 3 months following HSCT with estimated median expenses of $2440.³ 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. Housing near the transplantation center, copayments for visits and medications, transportation, and food represented the most common sources of out-of-pocket expenses.^3,4

Numerous studies have identified unmet needs among caregivers of patients with multiple myeloma, particularly during HSCT, and clinicians have an important role to play in assisting them in identifying resources, support networks, and developing an individualized supportive care plan.

References

1. Langer SL, Yi JC, Storer BE, Syrjala KL. Marital adjustment, satisfaction, and dissolution among hematopoietic stem cell transplant patients and spouses: a prospective, five-year longitudinal investigation. Psychooncology. 2010;19(2):190-200.
2. Fife BL, Monahan PO, Abonour R, et al. Adaptation of family caregivers during the acute phase of adult BMT. Bone Marrow Transplant. 2009;43(12):959—966
3. Mahjail NS, Rizzo JD, Hahn T, et al. Pilot study of patient and caregiver out-of-pocket costs of allogeneic hematopoietic cell transplantation. Bone Marrow Transplant. 2013;48(6):865—871.
4. Meehan KR, Fitzmaurice T, Root L, et al. The financial requirements and time commitments of caregivers for autologous stem cell transplant recipients. J Support Oncol. 2006;4(4):187—190.

Nurse Perspective

Melissa Baker, RN, MSN, OCN, APN-C

Similar to the transplant recipient, the caregiver often experiences physical symptoms of fatigue, frustration, social isolation, financial concerns, and role confusion. Caregivers may struggle to meet competing demands or find difficulty in managing multiple competing priorities. The shift in responsibility may cause role strain.

Unlike transplant recipients, caregivers are often not screened for depression or other signs of burnout. As a result of caring for the patient, oftentimes the caregivers’ own health is neglected. Caregiver burden may result in physical, social, financial, or emotional detriments. Predictors of caregiver stress include being a female caregiver, having higher levels of subjective burden, and the presence of patient symptom distress.

The effects of caregiver burnout may negatively impact patient mortality, length of hospitalization, and compliance rates. Female spouses are more likely to report relationship dissatisfaction, and are more likely to have poorer mental health, decreased social function, and sexual difficulties as a result of being a caregiver.

Nurses can decrease caregiver strain by acknowledging the commitment the caregiver is making. Nurses also provide guidance and tailored information to the caregiver, which may reduce stress levels. Establishing an educational framework, identifying available hospital or community resources, utilizing coping support networks, and engaging in role preparedness promote caregiver well-being and reduce caregiver burden.

Research to demonstrate interventions that effectively reduce caregiver burden, thereby better supporting the patient is needed. Additional research is warranted to understand the differences in caregiver experiences and develop interventions to increase caregiver coping and adaptation.