Palliative Care Leads to Better Quality of Life than Standard Care for PDRD Patients, Study Finds

Palliative care

Palliative care — focusing on physical, psychosocial and spiritual treatment — for people with Parkinson’s disease and related disorders (PDRD) led to a significantly better quality of life (QoL) than standard care alone, a study finds.

Easing of both non-motor and motor symptom severity was linked to palliative care intervention — and those with the greatest needs benefited the most, the researchers said.

The study, “Comparison of Integrated Outpatient Palliative Care With Standard Care in Patients With Parkinson Disease and Related Disorders,” was published in the Journal of the American Medical Association, Neurology

Parkinson’s disease and related disorders (PDRD) are a group of disorders that share core features of Parkinson’s but have additional symptoms. People with PDRD do not respond well to standard Parkinson’s medications and have a poor prognosis. 

Given the additional needs of patients with PDRD, an increasing number of medical centers are providing palliative care for these patients. 

While such care is typically associated with hospice and cancer, “recognition of the potential relevance of [palliative care] in other contexts has expanded substantially over the past decade to include earlier deployment, delivery to noncancer populations, delivery in outpatient settings, and delivery by persons not specializing in palliative medicine,” the researchers said.

Palliative care, known as PC, aims to improve quality of life (QoL) and reduce suffering by addressing medical symptoms, psychosocial issues, and care planning. 

Despite the recent advances in patient care, few studies are available that support the effectiveness of palliative care in the PDRD population.

Thus, a team of investigators from the University of Colorado (UC), the University of California, San Francisco (UCSF), and the University of Alberta (UA) in Canada, designed a study (NCT02533921) to examine the effects of this care approach. The team compared outpatient palliative care with standard care alone to assess any differences in participants’ QoL, the burden on the caregiver, and other patient-related outcomes. 

A total of 210 PDRD patients with moderate-to-high care needs were enrolled in the study, with participants randomly divided into a standard care group and a palliative care group. Of those selected, 104 patients and 88 caregivers were part of the standard care group, while 106 patients and 87 caregivers were assigned to the palliative care intervention group.

Standard care was provided by the patient’s primary care physician and a neurologist. 

Outpatient palliative care included standard care plus visits every three months either in person or by telemedicine — two-way videoconferencing and advanced information communication technologies. The PC team consisted of a specialized neurologist with palliative care workshop training, a nurse, a social worker, a chaplain experienced with Parkinson’s patients, and a physician specializing in this type of care. 

The primary outcomes were defined as differences in patient QoL after six months, measured using the Quality of Life in Alzheimer’s Disease (QoL-AD) scale, and by determining caregiver burden, using the 12-item Zarit Burden Interview (ZBI-12). 

Additional patient outcomes also were assessed, including symptom burden and health-related QoL. Patient and caregiver mood, grief, spiritual well-being, and overall impression of change also were reported. The outcomes for both patients and caregivers were recorded at the beginning of the study, and every three months for 12 months.

The results showed that, after six months, those receiving outpatient palliative care had significantly better QoL compared with those receiving standard care. When QoL assessments of patients and caregivers were combined, the impact was even greater. 

While the ZBI-12 difference in caregiver burden at six months was not significant, reassessment at 12 months showed a statistically significant difference. 

The greatest benefit from palliative care intervention was seen among the patients who were assessed, at the beginning of the study, as having greater needs. After 12 months, palliative care had a greater effect on women compared with men. 

In comparison with the standard care group, the PC group had a greater number of patients who experienced a clinically significant benefit in QoL-AD, and a lower number of those who scored worse.

Factors such as age, mood, symptom burden, disease severity, and cognition were not significantly different. However, improvements in non-motor symptoms, motor symptoms severity, and caregiver anxiety were linked to palliative care. 

Standard care alone was not favored for any outcome, the results showed. 

“Outpatient PC is associated with benefits among patients with PDRD compared with standard care alone,” the researchers concluded. “This study supports efforts to integrate [palliative care] into PDRD care.”

The researchers said such efforts are particularly needed for people with more severe symptoms.

“The integration of [palliative care] into PDRD care holds the potential to improve outcomes, particularly for persons who are underserved by current models of care (eg, patients with advanced illness and dementia),” the investigators said.

“Because the PC intervention is time-intensive and resource-intensive, future studies should optimize triage tools and consider alternative models of care delivery, such as telemedicine or care navigators, to provide key aspects of the intervention at lower cost,” they recommended. 

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Group Therapeutic Singing via Telemedicine Improved Respiratory Function of Parkinson’s Patients in Rural Iowa, Study Finds

singing, telemedicine

Parkinson’s disease patients living in rural areas in Iowa show improved respiratory function with group therapeutic singing delivered via telemedicine, according to a pilot study.

The study, “The Feasibility of Group Therapeutic Singing Telehealth for Persons with Parkinson’s Disease in Rural Iowa,” was published in the journal Telemedicine and e-Health.

Voice impairment affects most patients with Parkinson’s, but only a small minority undergo speech therapy. That is why new approaches to help improve voice and respiratory impairments in Parkinson’s patients are needed, especially for those living in rural areas where access to care is limited.

Telemedicine may be an effective answer, as it has led to positive results in the treatment of depression in Parkinson’s patients, as well as in group therapy, and education and support sessions.

Previous studies have suggested that singing may ease voice and respiratory impairments in people with Parkinson’s. In particular, researchers at Iowa State University have shown that group therapeutic singing effectively maintains the voice and significantly improves respiratory control in these  patients. However, whether it can be delivered through telemedicine — and whether it would lead to similar results as in-person group therapeutic singing — remains to be determined.

Aiming to address this topic, researchers tested an eight-week prerecorded group therapeutic singing program in nine idiopathic (of unknown cause) Parkinson’s patients (eight men, age 67-82) living in the rural Iowa towns of Rockwell City and Storm Lake.

All participants were on a stable regimen of antiparkinsonian medications for 30 days, did not smoke, and had received no speech therapy within the past two years. None had significant cognitive impairment, major psychiatric disorders, history of head or neck cancer, asthma, chronic obstructive pulmonary disease, or untreated hypertension.

The group therapeutic singing program was filmed before recruitment, with Parkinson’s patients who attended weekly in-person sessions. Each session included vocal exercises followed by group singing of familiar songs. The intervention targeted breath support, vocal intensity, and frequency range.

The assessments were made one week prior and one week after the intervention at the same time of day to avoid fluctuations in medication. Voice outcome measures included phonation (vocalization) duration and range, and vocal intensity, each tested in three trials.

Specifically, phonation duration was assessed as the total time a participant sustained the vowel sounds ‘‘ah’’ and ‘‘ee.’’ To determine phonation range, the team recorded the lowest and highest pitch with an iPad app, then calculated the difference. The loudest sound produced on a sustained ‘‘ah’’ indicated vocal intensity.

Respiratory outcome measures included maximal inspiratory and expiratory pressures (breathing in or out as forcefully as possible for two seconds)   recorded with a portable respiratory pressure meter.

One participant dropped out at week three. Five attended all eight sessions, two completed seven sessions, and one participant attended six sessions. The overall compliance was 93.75%.

Analysis of the eight patients completing all sessions revealed that the changes in phonation range and vocal intensity were not statistically significant. However, both respiratory outcome measures improved significantly.

The results were in line with those of in-person sessions, suggesting similar effectiveness with the two approaches, the team noted. The different results seen in phonation duration — an increase with in-person, but a slight decrease with the pre-recorded program — may have been due to the small number of participants in the study using telemedicine, the team noted.

“This study has established that using a prerecorded GTS [group therapeutic singing] program is feasible and effective for persons with [Parkinson’s] in rural areas,” researchers wrote. “Thus, this pilot work suggests that the use of prerecorded GTS may be a viable treatment option for those with limited access to care,” they added.

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Advantages and Difficulties of Telemedicine in Parkinson’s Analyzed in Review Study


Telemedicine has the potential to become a critical component of healthcare in people with Parkinson’s disease, but larger studies are required to determine its role, a review study contends.

The study, “Current perspectives on the role of telemedicine in the management of Parkinson’s disease,” was published in the journal Smart Homecare Technology and TeleHealth.

While it has been established that Parkinson’s patients benefit significantly from specialty care, the number of patients who receive this type of care is still limited, and people in rural areas or in developing countries face even greater challenges to access it.

Telemedicine offers advanced clinical resources and expertise to patients who otherwise would not have access to specialized care. It allows healthcare professionals to evaluate, diagnose, treat, and follow patients at a distance using telecommunications technology.

While it may not be the most appropriate method to make an initial diagnosis of Parkinson’s disease, several studies have suggested that telemedicine is as effective as — and more convenient and economically advantageous than — in-person follow-up visits, for both patients and healthcare providers.

Researchers now have evaluated the advantages and constraints of telemedicine in Parkinson’s disease management in the U.S. after the establishment of a patient-provider relationship and a definitive diagnosis through an in-person appointment.

After an extensive search of published studies, researchers identified and further analyzed 13 suitable studies (conducted between 2006 and 2017) that focused on video conference, also known as virtual visits, as a form of telemedicine.

The team found that telemedicine has several advantages in Parkinson’s management, both in an at-home and nursing home setting.

Telemedicine has elevated feasibility — more than 90 percent of telemedicine visits were found to be completed as scheduled — saves time and money, and shows high satisfaction among Parkinson’s patients and healthcare providers (more than 85 percent of those participating were satisfied).

Also, patient satisfaction increased over time, suggesting that as technology advances, less technical problems are occurring in virtual visits.

The researchers noted that a modified version of the Unified Parkinson’s Disease Rating Scale (UPDRS) — a valid measure of disease severity — was developed to simplify virtual assessment of disease status, and to exclude the need of hands-on assessment, which may improve virtual assessment.

Notably, patients followed-up with telemedicine showed similar clinical improvements to those followed-up with in-person appointments, suggesting that “treatment outcomes for telemedicine, based on improvement in motor functioning, are objectively as good as they are for in-person care,” researchers said.

However, they noted that current published studies have some limitations, and that there is an urgent need for larger and long-term studies involving patients of all races and educational status, and with more severe disability.

The widespread use of telemedicine is limited by technological barriers, as patients with no access to high-speed internet or who live too far from centers with that technology, are unable to get this type of care. Also, some studies have suggested that current video conferencing quality may not allow clinicians to effectively access subtle motor dysfunctions.

“It remains unclear whether the home assessment is more accurate because it reflects a patient’s natural environment, or if an office assessment is more accurate because clinicians can see the patients more clearly,” the team wrote.

Bureaucracy- and legal-related issues, such as difficulties in negotiating reimbursement for virtual visits with insurance companies and in medical licensing throughout the U.S., also are two major barriers for telemedicine visits.

The authors believe that an ideal telemedicine program should be based on the development of a remote clinic with the resources to have reliable video conferencing.

Although telemedicine will not replace the traditional “hands-on” examination, “we are closer than ever to making virtual visit assessment as good as in-person examination with wider access to care, increased convenience for patients, and seamless communication between members of the treatment team,” they concluded.

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Source: Parkinson's News Today