Nov. 17, 2017
In 1999, the Mayo Clinic Psycho-Oncology Program developed a psychosocial intervention designed to improve quality of life (QOL) for patients with advanced cancer. Two randomized, controlled trials conducted by program investigators found the intervention effective for QOL improvement in the lives of patients with advanced cancer.
As they conducted the first of these trials, however, they noted that patients' family caregivers — unpaid individuals who provide physical, practical and emotional care or a combination of these to support patients in the home or other health care setting — also experienced poor QOL.
"Our original studies focused on patients with cancer, however, it became more apparent during our studies that caregivers also had needs that were not being met and were at risk of stress, burnout and anxiety," says Maria I. Lapid, M.D., a psychiatrist at Mayo Clinic in Rochester, Minnesota, and lead study author. "We realized they also could be helped with interventions to improve their QOL."
A study designed to address a need
To meet this need, the Mayo Clinic researchers subsequently included not only the patients with advanced cancer but also their caregivers in the second randomized, controlled trial, in which they evaluated a psychosocial intervention designed to improve QOL.
The study's uniqueness, according to Dr. Lapid, is the psychosocial intervention itself.
"Quality of life is based on a multidimensional concept and defined as state of well-being in five areas of functioning, including the emotional, cognitive, physical, spiritual and social domains," she says. "Many quality-of-life studies focus only on one or few quality-of-life domains; however, the psychosocial intervention developed by our Mayo Clinic Psycho-Oncology Program was designed to specifically address all five quality-of-life domains."
As this form of intervention comprised several QOL domains, it required specialists from multiple disciplines:
- Psychiatrists and psychologists addressed mental and emotional well-being through modules focused on symptom management, self-care, recognition of burnout and stress, and stress management.
- A chaplain led sessions to address spiritual well-being.
- Physiatrists and physical therapists directed structured physical activities, such as light exercise and strength and resistance training, to address physical well-being.
- Social workers guided sessions to address advanced care planning and psychosocial concerns.
The study randomized patients and caregivers as dyads to usual care or the intervention, which involved six 90-minute intervention sessions for patients and caregivers, delivered over the course of four weeks. Leaders conducted the sessions covering the various disciplines in a semistructured style, allowing for more-formal education sessions and discussion. Each session opened with 15 minutes of physical therapy. A psychiatrist or psychologist, along with an expert in the given session content, then facilitated a 30-minute discussion. All sessions ended with 15 minutes of relaxation exercise.
For pairs randomized to the intervention group, the investigators invited the caregivers to participate in four of the six intervention sessions — sessions 1, 3, 4 and 6 — all selected for relevance to caregivers as well as patients:
- Session 1 focused on education related to health behavior changes as well as radiation or chemotherapy side effects and management.
- Session 3 centered on coping and spirituality.
- Session 4 focused on social needs, benefits of physical activity and record keeping, such as symptoms and food intake.
- The last session in which caregivers participated, Session 6, focused on mood management, communication strategies, following healthy practices and finding resources.
Study investigators measured quality of life at baseline, at week four immediately following the intervention, and at follow-up at weeks 27 and 52. Investigators utilized the following questionnaires for this assessment: The Caregiver Quality of Life Index-Cancer scale, the Linear Analogue Self-Assessment and the Profile of Mood States-Brief. After completing all aspects of the intervention, researchers asked the caregivers to rate the sessions they attended on a scale of 1 to 10, in addition to asking open-ended questions.
Researchers found that the psychosocial intervention did not have a significant impact on overall QOL. Caregivers' comments, however, indicated they derived significant benefit from the psychosocial intervention compared with those not participating. In particular, caregivers receiving the intervention indicated higher levels of energy and activity, adaptation, and spiritual well-being. The article detailing this study's results for caregivers appeared in the journal Psycho-Oncology in 2016.
"The fact that caregivers who received the psychosocial intervention experienced improvement in some areas of their QOL is not necessarily unique, but adds to the evidence that caregivers do benefit from interventions designed to meet their needs," notes Dr. Lapid. "We were pleased to see that the intervention helped the caregivers, since they provide the majority of the care for their loved ones but do not receive the attention they need."
Toward meeting caregivers' needs
This study's findings have several implications for psychologists and psychiatrists, according to Dr. Lapid.
"It is important for providers to ask caregivers how they are doing and to recommend resources, as appropriate," she says. "A multidisciplinary approach is essential in order to accommodate the needs of caregivers from multiple QOL domains."
Dr. Lapid suggests that interventions should be designed to meet a caregiver's individualized needs. In order to address a specific caregiver's needs, screening for stress, distress, depression, anxiety and burnout, among other conditions, is critical. Based on the screening results, providers can determine appropriate interventions.
It is also essential to acknowledge that caregivers have different needs depending on patients' cancer stage, according to the investigators. In cases where patients receive a new diagnosis of advanced cancer, caregivers need to balance patients' needs with their own needs as caregivers, as they can experience distress, depression and anxiety.
Overall, Dr. Lapid and colleagues consider caregivers of patients with cancer an underserved, or at least overlooked, population.
"Despite the burdens on caregivers and the negative impact of caregiving on their economic, physical, psychological and social well-being, caregivers do not usually receive the attention they need," according to Dr. Lapid. "More importantly, caregivers do not seek out help because they typically attend to patients' needs and place their own physical, spiritual and emotional needs on hold."
Areas for future study
In order to more fully determine the needs of caregivers, the study's investigators indicate further research is needed. The researchers suggest that investigations of technological interventions are needed to provide access and resources to this group, which often does not have access to resources. Moreover, the authors posit that perhaps a more caregiver-focused intervention — without patients involved — would have more impact on caregivers.
For more information
Lapid MI, et al. Cancer caregiver quality of life: Need for targeted intervention. Psycho-Oncology. 2016;25:1400.