Impaired Quality of Life and Need for Palliative Care in a German Cohort of Advanced Parkinson's Disease Patients

Abstract

Background: Parkinson's disease (PD) is the second most frequent neurodegenerative disease of the elderly. Patients suffer from various motor and non-motor symptoms leading to reduced health-related quality of life (HRQOL) and an increased mortality. Their loss of autonomy due to dementia, psychosis, depression, motor impairments, falls, and swallowing deficits defines a phase when palliative care interventions might help to sustain or even improve quality of life.

Objective: The aim of this study was to investigate the current status of palliative care implementation and quality of life in a local cohort of advanced PD patients in order to frame and improve future care.

Methods: 76 geriatric patients with advanced idiopathic PD meeting the inclusion criteria for palliative care interventions were clinically evaluated by neurological examination using Movement Disorders Society Unified Parkinson's Disease Rating Scale, Barthel Index, Montreal Cognitive Assessment Test, and a structured interview concerning palliative care implementation.

Results: HRQOL is severely reduced in our cohort of geriatric advanced PD patients. We found motor deficits, impairment of activities of daily living, depression, and cognitive decline as most relevant factors determining decreased HRQOL. Only 2.6% of our patients reported present implementation of palliative care. By contrast, 72% of the patients indicated an unmet need for palliative care.

Conclusion: Quality of life is dramatically affected in advanced PD patients. However, we found palliative care to be implemented extremely rare in their treatment concept. Therefore, geriatric patients suffering from advanced PD should be enrolled for palliative care to provide adequate and holistic treatment which may improve or sustain their quality of life.

Keywords: advanced Parkinson’s disease; end-of-life care; non-motor symptoms; palliative care; quality of life.

Figure 1

Significant correlations of health-related quality of life (HRQOL) with different scales und symptoms. (A) Negative correlation of HRQOL and Barthel Index (p < 0.0001; r = −0.6946; r² = 0.4825). (B) Correlation of HRQOL with Movement Disorders Unified Parkinson’s Disease Rating Scale (MDS-UPDRS) part II (p < 0.0001; r = 0.6586; r² = 0.4338) and (C) MDS-UPDRS part III (p < 0.0001; r = 0.4562; r² = 0.2081). (D) Negative correlation of HRQOL and Montreal Cognitive Assessment test (MoCA) (p = 0.0002; r = −0.4136; r² = 0.1711). (E) Correlations of HRQOL with MDS-UPDRS part I item “depressed mood” (p < 0.0001; r = 0.4862; r² = 0.2364) and (F) MDS-UPDRS part I item hallucinations and psychosis (p = 0.0018; r = 0.4841; r² = 0.2344) and (G) MDS-UPDRS item “anxious mood” (p = 0.0431; r = 0.2689; r² = 0.0723). (H) Non-significant correlation of HRQOL and levodopa equivalence dosage (LED) (p = 0.5035; r = 0.0825; r² = 0.0068).

Figure 2

Patients’ wishes in regard to palliative care concerning communication partner and place of death. N = 76 Parkinson’s disease patients.

Figure 3

Concept for palliative care in Parkinson’s disease (PD). PD is not curable these days, so therapy is symptomatic. Despite a limited palliative aspect in the beginning of the disease course, patients should be encouraged to write an advance directive or health care by proxy. Informed consent should be guaranteed concerning potential invasive therapies in the future. Local patient groups can help to stabilize the patient in many ways. Physicians should focus on the need for psycho-social and financial support and matters of pension. If patients reach Hoehn and Yahr stage 3 or more, they often lose their autonomy and become dependent on others help. In this phase, palliative care interventions should be initiated. These interventions may be the implementation of outpatient services, an interdisciplinary management of complex symptoms, clinical interventions (e.g., i.v. antibiotics for infections, feeding tubes, airway management, palliative sedation), and discharge to a hospice. Even in the palliative intervention phase, the end-of-life care (EoLC) represents only a small proportion of palliative therapies.