At 3 months, there was a trend toward a significant change in our primary outcome measure [FACIT-Sp], a significant change in the other quality-of-life measure, and a highly significant change in satisfaction with care, all favoring the intervention group.
—Camilla Zimmermann, MD, PhD, FRCPC
A 4-year study1 involving 461 patients with advanced stages of lung, gastrointestinal, genitourinary, breast, and gynecologic cancers has found that providing early outpatient palliative care vs standard oncology care alone improved quality of life and patient satisfaction. The study participants received care at 24 medical oncology clinics at Princess Margaret Cancer Center, University Health Network in Toronto, Canada, and had a clinical prognosis of between 6 and 24 months. The clinics were cluster randomized in a 1:1 ratio using a computer-generated sequence and stratified by clinic size and tumor site to consultation and follow-up by a palliative care team or to standard cancer care.
The aim of the study, said lead investigator Camilla Zimmermann, MD, PhD, FRCPC, was to determine whether the early involvement of a team of palliative care specialists made a difference in the quality of life of patients and their caregivers and improved patient satisfaction with the care they received. Despite recommendations by ASCO2 that palliative care services be integrated into standard oncology practice at the time a person is diagnosed with metastatic or advanced cancer to relieve pain and other physical, psychosocial, and spiritual issues, palliative care is most often introduced at the end of life, if at all, according to Dr. Zimmermann.
“Right now there is a difference between what we say we should be doing and what we actually do regarding palliative care in the advanced cancer setting. We wanted to see if there is any proof that doing what we say we should do has any positive impact on patients’ quality of life—and we found that it does,” she said.
The ASCO Post talked with Dr. Zimmermann, Head of the Palliative Care Program and Rose Family Chair in Supportive Care at the Princess Margaret Cancer Center and University Health Network, about the results of her study and how improving the quality of life of patients also improves the quality of life of their caregivers.
What were the major results of your study?
Patients were assessed monthly for 4 months for quality of life using the Functional Assessment of Chronic Illness Therapy–Spiritual Well-Being (FACIT-Sp) scale and Quality of Life at the End of Life (QUAL-E) scale, symptom severity using the Edmonton Symptom Assessment System (ESAS), satisfaction with care using FAMCARE-P16, and problems with medical interactions using the Cancer Rehabilitation Evaluation System Medical Interaction Subscale (CARES-MIS).
We defined the primary outcome in advance as the change in score on the FACIT-Sp measure from baseline to 3 months. Secondary endpoints included the change in FACIT-Sp score at 4 months and change for the other scales at 3 and 4 months.
We found that at 3 months, there was a trend toward a significant change in our primary outcome measure, a significant change in the other quality-of-life measure, and a highly significant change in satisfaction with care, all favoring the intervention group. At 4 months, almost all the outcomes were significantly positive. The only score that wasn’t positive was the one measuring problems with medical interactions.
Relevance to Early Disease
Can the results of your study also be used to show the benefit of palliative care for patients with early-stage disease, especially to remedy physical symptoms such as fatigue, pain, and sexual dysfunction, and mental health issues such as depression and anxiety?
I would be careful about extrapolating too much from this study, because it was focused on patients with advanced-stage disease and their overall quality of life. There would have to be a specific study for patients with earlier-stage disease to see what benefits might be derived from early palliative care in that setting. However, I think that intervening in these sorts of symptoms in earlier disease makes a lot of sense and would improve patients’ quality of life.
Today, more and more, the whole focus of palliative care is from initial diagnosis and throughout survivorship. During cancer treatment of any kind, patients and their families need support, both physical and psychological, throughout the illness and not just at the end of life. It doesn’t make sense to suddenly become very interested in patients’ symptoms only at the end of life. Palliative care is relevant throughout the course of the illness and survivorship.
Acute Myeloid Leukemia
You are currently investigating the palliative care needs of patients with acute myeloid leukemia. Do these patients have different needs than patients with other types of cancer?
They certainly do. Despite the fact that patients with acute myeloid leukemia have a very poor prognosis, especially those over age 65, traditionally the palliative care needs of these patients have not been adequately addressed.
Overall, the 5-year survival rate is between 20% and 30%, and in patients over age 65, the survival rate is about 15%, so there is a high death rate from this disease right from diagnosis. That said, in some cases the disease can be cured, so the focus is very much on cure and less on quality of life. But from initial diagnosis and throughout the disease trajectory, because the outcome is so variable, acute myeloid leukemia patients have high degrees of stress and anxiety, so they have significant psychosocial issues. They also have physical symptoms from both the leukemia and its treatment side effects.
For that reason, we are investigating whether the early integration of palliative care services at diagnosis can improve traumatic stress symptoms, which are prevalent in this population, as well as achieve physical symptom control. We have just launched a randomized phase II pilot study and will plan a phase III study based on the results of the pilot study.
Early palliative care is relevant in all sorts of cancers, but there probably needs to be slightly different treatment models, with a tailored approach for each disease.
Please talk about what you have found in your research focusing on the effective delivery of palliative care.
The effective delivery of palliative care will vary depending on the health-care system in which it is given and the collaboration among the existing professional caregivers in that field.
In our cancer center setting, which includes a large outpatient population with many physical and psychosocial concerns and care planning issues, we have a palliative care team comprising palliative care physicians and nurses, physical and occupational therapists, spiritual care professionals, and mental health and social work experts to provide support for the patient and family members. The core team in the outpatient palliative care clinic was a palliative care physician and nurse who brought in the other team members when required and also collaborated with the home-care team. We found that this type of multidisciplinary effort was very effective in improving patients’ quality of life and satisfaction with care.
Does introducing palliative care earlier in a patient’s cancer diagnosis also have a cost-saving benefit?
We are investigating cost, and that aspect of the study is ongoing. I don’t have the exact findings yet. But it makes sense that if palliative care specialists are involved in a patient’s care from the beginning, there will probably be more discussions about questions such as: Is this last line of chemotherapy really necessary? Will it improve the patient’s quality of life, or is it being done to avoid confronting the reality of the situation (ie, that the patient is dying)?
Sometimes when we give palliative chemotherapy very late in the course of illness, it can result in a worse survival outcome. When that is the case, there is no cost-effectiveness benefit. Providing palliation that allows the patient to remain at home and avoids admission to the hospital (and even travel to and from the cancer center to treat symptoms) will also reduce medical costs.
What did your study show regarding how palliative care support for the patient can also benefit the caregiver?
Although we didn’t recruit enough caregivers in our study to give it sufficient power to determine conclusive results, one thing we have seen is that the quality of life of caregivers is very closely associated with the quality of life of patients. So if you improve patient quality of life, you can likely also improve caregiver quality of life.
One reason for this might be that the caregivers’ ability to engage in activities outside of their caregiving duties—for example, continuing to work, going to exercise class, or meeting with friends—is directly affected by the patient’s quality of life. Also, there will be increased caregiver distress if the patient being cared for has uncontrolled pain or other symptoms. Therefore, it makes sense that if we improve the patient’s quality of life, we improve the caregiver’s quality of life as well. ■
Disclosure: Dr. Zimmermann reported no potential conflicts of interest.
1. Zimmermann C, Swami N, Krzyzanowska M, et al: Early palliative care for patients with advanced cancer: A cluster-randomized controlled trial. Lancet 383:1721-1730, 2014.
2. Smith TJ, Temin S, Alesi ER, et al: American Society of Clinical Oncology Provisional Clinical Opinion: The Integration of Palliative Care Into Standard Oncology Care. J Clin Oncol 30:880-887, 2012.