Multiple System Atrophy Caregivers' Experience: A Mixed Methods Study.

BACKGROUND: Multiple system atrophy (MSA) is a rare Parkinson-plus syndrome with rapid progression and a high symptom burden. The experience of caregivers of people with MSA has not been closely examined. We therefore sought to document the impact of MSA on caregivers using a mixed methods approach. METHODS: Patients and caregivers were recruited from a movement disorders program in Edmonton, Canada. Participants completed the following survey instruments based on their own or their loved one's symptoms: 36-Item Short-Form Health Survey (SF-36), Multiple System Atrophy health-related Quality of Life scale (MSA-QoL), and Hospital Anxiety and Depression Scale (HADS). Caregivers also completed the Zarit Burden Interview and HADS based on their own experience. Qualitative data were obtained through semi-structured interviews. RESULTS: Nine people with MSA (PwMSA) (age range: 48-78 years) and 11 caregivers (49-76 years) participated. All completed surveys; 7 PwMSA and 10 caregivers were interviewed. Eight PwMSA had the parkinsonian type of MSA (MSA-P) and one a mixed type. Caregivers had on average mild-moderate caregiver burden and mild anxiety. Caregiver burden and anxiety were correlated. Qualitative subthemes under the caregiving theme included keeping the patient safe, caregivers' own health, and communication symptoms cause frustration. The rapid progression of illness was bewildering to caregivers and increased their workload. Public home care services were invaluable to caregivers' maintaining their loved ones at home. Caregivers were inventive in finding sources of hope and quality of life for their loved ones. CONCLUSION: Publicly funded home care was essential for caregivers of PwMSA in this study. Caregiver support is needed to provide this unrecognized workforce with information and resources to face this challenging condition.

Parkinson's disease advanced therapies - A systematic review: More unanswered questions than guidance.

In advanced Parkinson's disease (PD), therapeutic interventions include device-aided therapies such as continuous subcutaneous apomorphine infusion (CSAI), levodopa-carbidopa intestinal gel (LCIG) infusion, and deep brain stimulation (DBS). We reappraised the evidence guiding the decision of appropriate device-aided therapies in advanced PD, and systematically reviewed the literature (including ongoing clinical trials) comparing CSAI, LCIG, DBS in terms of efficacy and cost-effectiveness, with particular consideration to possible conflicts of interests. Of 14,980 documents screened, sixteen were included (4 and 13 studies examining efficacy and cost-effectiveness, respectively). LCIG and DBS showed higher efficacy compared to best medical therapy (BMT). DBS was more expensive than BMT and LCIG. Lifetime costs of CSAI were lower of those of DBS, and DBS lifetime costs were lower than those of LCIG. The majority of studies (11 out of 16) showed direct or indirect sponsorship from pharmaceutical or device companies. Only one ongoing clinical trial comparing LCIG with DBS was found. Device-aided therapies address unmet needs in advanced PD. LCIG and DBS are superior to BMT in head-to-head studies; however, initial and lifetime costs should be considered when choosing those therapies. Guidelines to assist clinicians and patients to choose device-aided therapies, free from conflict of interests, are required.

Patient and caregiver characteristics associated with caregiver burden in Parkinson's disease: a palliative care approach.

BACKGROUND: Parkinson's disease (PD) is a neurodegenerative disorder associated with caregiver burden. Higher rates of burden are associated with adverse outcomes for caregivers and patients. Our aim was to understand patient and caregiver predictors of caregiver burden in PD from a palliative care approach. METHODS: We conducted a cross-sectional analysis of baseline data from PD patients and caregivers in a randomized trial of outpatient palliative care at three study sites: University of Colorado, University of Alberta, and University of California San Francisco. The primary outcome measure of caregiver burden, the Zarit Burden Interview (ZBI), was compared against the following patient and caregiver variables: site of care, age, disease/caretaking duration, presence of atypical parkinsonism, race, income, education level, deep brain stimulation status, the Unified Parkinson's Disease Rating Scale (UPDRS) and Edmonton Symptom Assessment System Revised: Parkinson Disease (ESAS) for symptom severity and burden, the Montreal Cognitive Assessment (MoCA) for cognitive function, Quality of Life in Alzheimer's Disease (QOL-AD) scale for patient and caregiver perspectives on patient general quality of life, Parkinson's Disease Questionnaire 39 (PDQ-39) scale for health-related quality of life, Hospital Anxiety and Depression Scale (HADS) for patient and caregiver mood, Prolonged Grief Questionnaire, Functional Assessment of Chronic Illness Therapy- Spiritual Well-Being (FACIT-SP) of patient and caregiver, and Palliative Performance Scale for functional status. A stepwise multivariate linear regression model was used to determine associations with ZBI. RESULTS: A total of 175 patients (70.9% male; average age 70.7±8.1 years; average disease duration 117.2±82.6 months), and 175 caregivers (73.1% female; average age 66.1±11.1 years) were included. Patient spiritual well-being (FACIT-SP Faith subscale, r2=0.024, P=0.0380), patient health-related quality of life (PDQ-39, r2=0.161, P<0.0001), caregiver depression (HADS Depression, r2=0.062, P=0.0014), caregiver anxiety (HADS Anxiety, r2=0.077, P=0.0002), and caregiver perspective on patient quality of life (QOL-AD Caregiver Perspective, r2=0.088, P<0.0001) were significant contributors to ZBI scores. CONCLUSIONS: Patient and caregiver factors contribute to caregiver burden in persons living with PD. These results suggest targets for future interventions to improve caregiver support.

Treatment gaps in Parkinson's disease care in the Philippines.

Neurological services and resources are scarce in low-income and developing countries, such as the Philippines. We looked into the treatment gaps in Parkinson's disease (PD) care in the Philippines in the following areas: epidemiology, healthcare, financial coverage, pharmacotherapy, surgical treatment and manpower. We collected relevant data on the above-mentioned areas. There is no available Philippine data on PD prevalence. Philippine healthcare is paid through user fees at the point of service. The average consultation fee in Manila ranges from US$10.57-31.74. The average minimum daily wage is US$9.39-10.17. Philippine healthcare is devolved to the local government units. Deep brain stimulation surgery is only available in Manila. Most PD medications are available in the Philippines. There are only nine movement disorder specialists for a population of 100.98 million. Gaps and challenges in PD care in the Philippines still exist.

What are the issues facing Parkinson's disease patients at ten years of disease and beyond? Data from the NPF-QII study.

BACKGROUND: Parkinson's disease (PD) is the second most common neurodegenerative syndrome, classically characterized by levodopa-responsive motor features accompanied by non-motor mood, cognitive, sensory and autonomic issues. Over time, disease burden slowly accumulates resulting in diminished health status. Many clinicians consider the 10 year disease duration mark as significant, however the clinical status and health-related quality of life of patients reaching this milestone have not been well documented. METHODS: A cross-sectional study was performed on PD patients with ≥ 10 years disease duration (PD-10) (n = 1835) included in the multicenter National Parkinson's Foundation Quality Improvement Initiative (NPF-QII). Demographic, clinical and health-related quality of life data was analyzed. RESULTS: PD-10 patients (62.2% male) had a mean age of 67.8 years (± 9.5) with a mean age of PD onset of 52.7 years (± 10.6), and median disease duration 14.3 years (interquartile range 11.5-18.1). Many were minimally disabled with Hoehn and Yahr stage 1 or 2 (44.0%) or experiencing postural instability (HY stage 3, 40.3%). Most (88.2%) were able to stand unaided, but falls were common (54.8%). Almost all were living at home (93.1%) with a family member as a regular caregiver (83.8%). PD-10 patients had an average of 1.9 (± 1.4) co-morbidities, with arthritis (48.9%) and heart problems (31.7%) most commonly encountered. The majority (86.7%) took at least 2 medications: levodopa (95.7%), dopamine agonists (45.6%) and antidepressants (37.3%) were most commonly recorded. Most PD-10 patients were not currently utilizing physical, occupational or speech therapy, although two-thirds reported engaging in physical activity. Deep brain stimulation was documented in 22.4%. Overall the mean health-related quality of life and caregiver burden was impaired in all domains. CONCLUSIONS: Our data on PD patients with at least 10 years disease duration confirmed the younger age of onset of PD, but not the higher proportion of females or rest tremor, or the lower proportion of Caucasians seen in other aged PD cohorts. PD-10 patients had increased disease burden, increased caregiver burden, and impaired health-related quality of life. Although subjects mostly remained independently mobile, balance could be impaired with frequent falls identified. The prevalence of PD-10 patients living at home (93%) was very high in our sample which was drawn from specialty clinics, compared to prior studies reporting up to 27% PD patients institutionalized at 10 years duration. Thus policies to improve in-home support and caregiver support will be crucial in efforts aimed at maintaining patients in a home setting.

Evidence Report: The efficacy and safety of mitoxantrone (Novantrone) in the treatment of multiple sclerosis: Report of the Therapeutics and Technology Assessment Subcommittee of the American Academy of Neurology.

OBJECTIVE: The chemotherapeutic agent mitoxantrone was approved for use in multiple sclerosis (MS) in 2000. After a review of all the available evidence, the original report of the Therapeutics and Technology Assessment Subcommittee in 2003 concluded that mitoxantrone probably reduced clinical attack rates, MRI activity, and disease progression. Subsequent reports of decreased systolic function, heart failure, and leukemia prompted the US Food and Drug Administration to institute a "black box" warning in 2005. This review was undertaken to examine the available literature on the efficacy and safety of mitoxantrone use in patients with MS since the initial report. METHODS: Relevant articles were obtained through a review of the medical literature and the strength of the available evidence was graded according to the American Academy of Neurology evidence classification scheme. RESULTS: The accumulated Class III and IV evidence suggests an increased incidence of systolic dysfunction and therapy-related acute leukemia (TRAL) with mitoxantrone therapy. Systolic dysfunction occurs in approximately 12% of patients with MS treated with mitoxantrone, congestive heart failure occurs in approximately 0.4%, and leukemia occurs in approximately 0.8%. The number needed to harm is 8 for systolic dysfunction and 123 for TRAL. There is no new efficacy evidence that would change the recommendation from the previous report. CONCLUSIONS: The risk of systolic dysfunction and leukemia in patients treated with mitoxantrone is higher than suggested at the time of the previous report, although comprehensive postmarketing surveillance data are lacking.