In the JournalsPerspective

Outpatient palliative care improves quality of life in Parkinson’s disease

Patients with Parkinson’s disease experienced improved quality of life and reduced symptoms when they received outpatient palliative care provided by a team of providers vs. standard care from a single provider, according to the results of a randomized clinical trial published in JAMA Neurology.

In the study, Benzi M. Kluger, MD, chief and founder of the palliative care section at the University of Colorado, and colleagues randomly assigned patients with Parkinson’s disease to one of two cohorts.

In the first cohort, 104 patients (mean age, 70.7 years; 70 men; 93 white) received standard care by a primary care physician and/or a neurologist. In the second cohort, 106 patients (mean age, 69.5 years; 65 men; 100 white) participated in an outpatient palliative care intervention — either in person or via telehealth. The intervention added a trained palliative neurologist, nurse, social worker, chaplain and a board-certified palliative medicine physician to the treatment plan. These professionals and the patient met for about 2 to 2.5 hours to discuss nonmotor symptoms of Parkinson’s disease, symptom management, goals of care, anticipatory guidance, difficult emotions and caregiver support. Patients in the intervention group also received after-visit summaries and their PCP and neurologist received clinic notes and care suggestions.

At 6 months, compared with patients who received standard care, patients in the palliative care intervention group had better quality of life, with a mean improvement of 0.66 on the Quality of Life in Alzheimer Disease scale vs. a mean worsening of symptoms of 0.84 (treatment effect estimate = 1.87; 95% CI, 0.47-3.27).

 

“We hypothesize that this improvement reflected our systematic approach to the detection of nonmotor symptoms using checklists, as nonmotor symptoms are not frequently mentioned by patients or detected by neurologists,” the researchers wrote.

At 12 months, trial endpoints such as the completion of advance directives, motor symptom severity, nonmotor symptom burden, caregiver burden and caregiver anxiety significantly favored the intervention cohort, researchers said.

Kluger and colleagues encouraged future researchers to find ways to reduce the time and cost needed to implement their intervention.

In a related editorial, Bastiaan R. Bloem, MD, PhD, FRCPE, of the Center of Expertise for Parkinson & Movement Disorders in the Netherlands, and colleagues said study was “timely and practical.”

“It turns the call for palliative care into practice by introducing a dedicated and multidisciplinary palliative care team that operates on an outpatient basis,” they wrote. “The study is also noteworthy for being the largest published clinical trial to date that assesses the utility of palliative care for people with parkinsonism. Another laudable element was that 30% of participants had a clinical diagnosis of dementia, for whom palliative care may be particularly appropriate.” – by Janel Miller

References:

Bloem BR, et al. JAMA Neurol. 2020;doi:10.1001/jamaneurol.2019.4697.

Kluger BM, et al. JAMA Neurol. 2020;doi:10.1001/jamaneurol.2019.4992.

Willis AW, et al. Neurology. 2011;doi:10.1212/WNL.0b013e31822c9123.

Disclosures:

Bloem reports being part of a collaborative project financed by the Ministry of Economic Affairs and Climate Policy in the Netherlands by means of the public-private partnerships allowance made available by Top Sector Life Sciences & Health to stimulate public-private partnerships. Kluger reports receiving grants from the Patient-Centered Outcomes Research Institute during the conduct of the study. Please see the study and editorial for all other authors’ relevant financial disclosures.

Patients with Parkinson’s disease experienced improved quality of life and reduced symptoms when they received outpatient palliative care provided by a team of providers vs. standard care from a single provider, according to the results of a randomized clinical trial published in JAMA Neurology.

In the study, Benzi M. Kluger, MD, chief and founder of the palliative care section at the University of Colorado, and colleagues randomly assigned patients with Parkinson’s disease to one of two cohorts.

In the first cohort, 104 patients (mean age, 70.7 years; 70 men; 93 white) received standard care by a primary care physician and/or a neurologist. In the second cohort, 106 patients (mean age, 69.5 years; 65 men; 100 white) participated in an outpatient palliative care intervention — either in person or via telehealth. The intervention added a trained palliative neurologist, nurse, social worker, chaplain and a board-certified palliative medicine physician to the treatment plan. These professionals and the patient met for about 2 to 2.5 hours to discuss nonmotor symptoms of Parkinson’s disease, symptom management, goals of care, anticipatory guidance, difficult emotions and caregiver support. Patients in the intervention group also received after-visit summaries and their PCP and neurologist received clinic notes and care suggestions.

At 6 months, compared with patients who received standard care, patients in the palliative care intervention group had better quality of life, with a mean improvement of 0.66 on the Quality of Life in Alzheimer Disease scale vs. a mean worsening of symptoms of 0.84 (treatment effect estimate = 1.87; 95% CI, 0.47-3.27).

 

“We hypothesize that this improvement reflected our systematic approach to the detection of nonmotor symptoms using checklists, as nonmotor symptoms are not frequently mentioned by patients or detected by neurologists,” the researchers wrote.

At 12 months, trial endpoints such as the completion of advance directives, motor symptom severity, nonmotor symptom burden, caregiver burden and caregiver anxiety significantly favored the intervention cohort, researchers said.

Kluger and colleagues encouraged future researchers to find ways to reduce the time and cost needed to implement their intervention.

In a related editorial, Bastiaan R. Bloem, MD, PhD, FRCPE, of the Center of Expertise for Parkinson & Movement Disorders in the Netherlands, and colleagues said study was “timely and practical.”

“It turns the call for palliative care into practice by introducing a dedicated and multidisciplinary palliative care team that operates on an outpatient basis,” they wrote. “The study is also noteworthy for being the largest published clinical trial to date that assesses the utility of palliative care for people with parkinsonism. Another laudable element was that 30% of participants had a clinical diagnosis of dementia, for whom palliative care may be particularly appropriate.” – by Janel Miller

References:

Bloem BR, et al. JAMA Neurol. 2020;doi:10.1001/jamaneurol.2019.4697.

Kluger BM, et al. JAMA Neurol. 2020;doi:10.1001/jamaneurol.2019.4992.

Willis AW, et al. Neurology. 2011;doi:10.1212/WNL.0b013e31822c9123.

Disclosures:

Bloem reports being part of a collaborative project financed by the Ministry of Economic Affairs and Climate Policy in the Netherlands by means of the public-private partnerships allowance made available by Top Sector Life Sciences & Health to stimulate public-private partnerships. Kluger reports receiving grants from the Patient-Centered Outcomes Research Institute during the conduct of the study. Please see the study and editorial for all other authors’ relevant financial disclosures.

    Perspective

    I spend about 80% of my work time with patients who have advanced Parkinson’s disease, including consulting them in various stages of treatment and therapy.   

    The collaboration described by Kluger and colleagues between a neurologist, social worker, chaplain and nurse as much as I would like to see happen, is often hard to accomplish. It can be very impractical to get all these professionals in the same room at the same time.

    Therefore, physicians need to take the lead in discussing palliative care with their patients. These discussions should occur if the patient is frequently falling, having problems swallowing and/or experiencing recurrent bouts of pneumonia, since these are usually indicators that the patient’s overall health is failing. While any discussion surrounding Parkinson’s and its related disease can be difficult, asking patients and their families whether they prioritize “quantity of life” vs. “quality of life” is necessary; these wishes are rarely the same from one patient to the next.

    These discussions should start by the physicians asking the patient what are the specific activities that he or she wants to engage in and what he or she is willing to do to reach them. Physicians should also determine what activities the patient wants to do, but currently cannot, and see what can be done to perhaps let them engage in these activities (eg, the musician who can no longer play an instrument but would still enjoy the activity, or the reader who is having vision problems and still wants to read books). Physicians may find it helpful to do as I do break these discussions into several visits so that the patient and the family have time to discuss without being overwhelmed. Published research suggests planting the seed of the discussion in one visit, then ascertaining the patient and their family’s wishes in the next. Explain to the patient and their family that if they don’t make these decisions, the medical staff may do things that you don’t want done (eg, provide a feeding tube after losing the ability to swallow).

    One limitation to published research involving neurological disorders like Parkinson’s is that the study cohort is usually white, lives in or near an academic medical center and/or has at least a college degree. With a huge shortage of neurologists and palliative care specialists in rural areas, some patients and/or their family members have to drive up to 10 hours to see a specialist. Because of this, I am concerned that some patients with Parkinson’s may not be having comfortable end-of-life transitions. We need to make sure that everyone affected by Parkinson’s, not just the white urban populations with more than a high school degree, have ways to put a proxy plan in place.

    • Ankur Ajit Butala, MD
    • Neuropsychiatrist, Johns Hopkins Medicine
      Assistant professor of neurology, Johns Hopkins School of Medicine

    Disclosures: Butala reports working with some of the authors of the Kluger study on a previous project.