Sexuality and intimacy are poorly researched in both people living with Parkinson's and in older people. Triggers for discussion usually centre on sexual dysfunction and hypersexuality in relation to Parkinson's. However, there are many more factors that impact on physical and emotional connectedness. Despite highlighting this unmet need there are limited tools or comprehensive assessments available to help improve quality of life. Further research is required within this field, with emphasis on health professionals' education and on highlighting to patients that they have permission for this topic to be discussed and actioned.
Hospice documentation is an integral part of patient care as it not only paints the picture of hospice eligibility, but also tells the final chapter of a patient’s life. Increasingly, hospices are under scrutiny by regulators to clearly define the admission and ongoing eligibility of the hospice patient. There is a lack of national standardization of documentation. The World Health Organization, in an effort to develop a common language among providers, developed the International Classification of Functioning, Disability and Health (ICF). Utilizing the ICF can assist with the documentation that establishes the eligibility of the hospice patient. Concepts from the ICF are applied to a case study of a patient with Parkinson’s disease. The ICF has barriers and limitations for documentation of the eligibility of the hospice patient, but overall, its use is recommended by the hospice interdisciplinary team.
Objectives: Palliative care addresses the suffering of patients and families affected by progressive illness through the management of medical symptoms, psychosocial issues, and spiritual concerns. Although there is an emerging interest in applying palliative care to Parkinson's disease (PD), potential palliative care needs have not been systematically investigated in PD patients. Our primary objective was to determine the prevalence of clinically significant symptomatic, psychosocial, and spiritual issues in PD and understand their impact on health-related quality of life (HRQOL). Secondary objectives included comparing the level of palliative care needs of PD patients to advanced cancer patients and assessing preferences for advance care planning.
Methods: Ninety PD patients and 47 patients with advanced cancer were surveyed regarding potential palliative care needs, including symptom burden, mood, anticipatory grief, and spiritual well-being. PD patients completed additional scales regarding HRQOL, motor symptoms, cognitive impairment, and preferences regarding advance care planning.
Results: Potential palliative care needs, including high symptom burden and grief, were common in PD patients and contributed to HRQOL even when controlling for depression and motor severity. In all domains investigated, PD patients had similar or higher levels of palliative care needs as patients with advanced cancer. PD patients expressed a desire to complete advance directives early in the disease course and with a physician.
Conclusions: Palliative care needs contribute to HRQOL in PD and are of similar severity as cancer patients. This study supports and helps focus efforts to integrate palliative care principles in PD care across the spectrum of the disease.
Nonmotor symptoms likely affect overall quality of life in Parkinson's disease (PD) as much as motor symptoms. Fast Fact #361 discussed the natural trajectory of PD. This Fast Fact will focus on management stratégies of common nonmotor symptoms in PD patients.
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INTRODUCTION: The utilization of advance directives in individuals with Parkinson's disease (PD) and atypical parkinsonian disorders (APD) and their caregivers requires further investigation. This study determined the utilization rates of four forms of advance directives: living will, durable power of attorney, durable power of attorney for healthcare, and medical orders in these individuals. We hypothesized that having a neurodegenerative parkinsonian disorder or exposure to these disorders would increase the likelihood of having advance directives.
METHODS: 50 PD participants, 49 APD participants, 50 caregivers and 50 non-caregiver controls were surveyed regarding advance directives.
RESULTS: The median number of advance directives was 1 in controls, 2 in caregivers and PD participants and 3 in APD participants. Patients with PD were 4.08 times more likely to have durable power of attorney (p < 0.001) and 2.08 times more likely to have durable power of attorney for healthcare (p = 0.011) than controls. Patients with APD were 1.66 times more likely to have a living will (p = 0.006), 4.81 times more likely to have a durable power of attorney (p < 0.001) and 2.47 times more likely to have a durable power of attorney for healthcare (p = 0.003) than controls. Caregivers were1.58 times more likely to have a living will (p = 0.012) and 2.21 times more likely to have a durable power of attorney for healthcare than controls.
CONCLUSION: Having or being exposed to parkinsonian disorders significantly increases the likelihood of utilizing advance directives. Additionally, exposure to a parkinsonian disorder as a caregiver increases advance directive use.
Patients with neurologic illnesses are commonly encountered by palliative care (PC) clinicians though many clinicians feel uncomfortable caring for these patients. Understanding how to diagnose, treat, communicate with, and prognosticate for neurology patients will improve the confidence and competence of PC providers in the neurology setting. This article offers PC providers 10 useful tips that neurologists with PC training think all PC providers should know to improve care for patients with neurologic illness.
Patients with Parkinson's disease and related disorders (PDRD) and their families have considerable unmet needs including non-motor symptom management, caregiver support, spiritual wellbeing, advance care planning, and end-of-life care. There is increasing interest in applying palliative care (PC) models to better meet these needs. While PC has been shown to improve care and quality of life (QOL) for people with cancer and heart failure, few studies have evaluated the role of PC for people with PDRD. Well-designed clinical trials are needed to optimize the PC approach for PDRD and to influence policy and implementation efforts. We initiated a randomized multicenter comparative effectiveness trial of team-based outpatient PC versus usual care for people with PDRD and their caregivers. The primary aims of this study are to determine the effects of PC on patient QOL and caregiver burden. Qualitative interviews will be utilized to gain additional insights into the impact of PC on participants, the outcomes that matter most to this population, and to find opportunities to refine future interventions and trials. As a novel application of PC, challenges involved in the design of this study include choosing appropriate inclusion criteria, standardizing the intervention, defining usual care, and choosing outcome measures suitable to our research questions. Challenges involved in implementation include participant recruitment, retention, and management of participant burden. We anticipate the results of this trial will have relevance for both clinical care and future clinical research trial design in evaluating models of PC for people with PDRD and other serious illnesses.
Background: Chronic progressive neurological diseases like high grade glioma (HGG), Parkinson's disease (PD), and multiple sclerosis (MS) are incurable, and associated with increasing disability including cognitive impairment, and reduced life expectancy. Patients with these diseases have complex care needs. Therefore, timely advance care planning (ACP) is required. Our aim was to investigate timing and content of discussions on treatment restrictions, i.e., to initiate, withhold, or withdraw treatment in patients with HGG, PD, and MS, from the neurologists' perspective. Methods: We performed a national online survey amongst consultants in neurology and residents in The Netherlands. The questionnaire focused on their daily practice concerning timing and content of discussions on treatment restrictions with patients suffering from HGG, PD or MS. We also inquired about education and training in discussing these issues. Results: A total of 125 respondents [89 neurologists (71%), 62% male, with a median age of 44 years, and 36 residents (29%), 31% male with a median age of 29 years] responded. Initial discussions on treatment restrictions were said to take place during the first year after diagnosis in 28% of patients with HGG, and commonly no earlier than in the terminal phase in patients with PD and MS. In all conditions, significant cognitive decline was the most important trigger to advance discussions, followed by physical decline, and initiation of the terminal phase. Most discussed issues included ventilation, resuscitation, and admission to the intensive care unit. More than half of the consultants in neurology and residents felt that they needed (more) education and training in having discussions on treatment restrictions.
Conclusion: In patients with HGG discussions on treatment restrictions are initiated earlier than in patients with PD or MS. However, in all three diseases these discussions usually take place when significant physical and cognitive decline has become apparent and commonly mark the initiation of end-of-life care. More than half of the responding consultants in neurology and residents feel the need for improvement of their skills in performing these discussions.
Background: The use of specific triggers has been suggested to help identify patients with progressive neurological disease who would benefit from palliative care.
Aim: This study aimed to improve the evidence base for the use of triggers for patients with progressive neurological disease.
Design: An evaluation of palliative care services was undertaken using a retrospective case note review of the timing and presence of triggers in the last 2 years of life.
Setting/Participants: A total of 12 specialist palliative care units across the United Kingdom provided data from 300 patients: mean patient age 70 years, 50% male, diagnoses included motor neurone disease 58%, Parkinson's disease 17% and Parkinson's Plus syndromes 12%.
Results: There was a high burden of triggers - 17 in the last 2 years of life and 10 in the last 6 months of life. The most frequent triggers were deteriorating physical function, complex symptoms and dysphagia. Four factors were found to explain 64% of the total variance: Factor 1 - Deterioration in physical function, dysphagia, significant complex symptoms and pain; Factor 2 - Weight loss and respiratory symptoms; Factor 3 - Recurrent infections and cognitive decline; Factor 4 - Aspiration pneumonia. Cox regression analyses found different triggers were associated with survival from diagnosis versus survival from referral to palliative care. Different triggers were also associated with survival for different neurological conditions.
Conclusion: This study demonstrates that there is a high burden of triggers in the last months and years of life and that these could potentially be reduced to fewer components. Prospective studies assessing which triggers are useful for different conditions are now required.
Our interdisciplinary mixed-methods exploratory study was aimed at gaining empirical data on the medical and nursing demands of residents who are in a late stage of Parkinson Disease (PD) and are cared for in residential homes in Salzburg (Austria). In earlier studies it has been concluded that symptom burden of late stage PD patients is similar to or even higher compared with oncological patients. However, although all nine residents who took part in our study had severe limitations in performing their daily activities and experienced enormous restrictions in their mobility, they were quite content with their present living situations and did not show significant symptom burden. From the ethnographic family interviews that we conducted the following features emerged: a strong closeness in the family, an improved quality of life when the patients lived in the nursing home and fears about the future. Therefore, we concluded that living in a nursing home that provides for the needs of these patients is the best option for PD patients in the final stages of their disease as well as for their relatives.
Parkinson's disease (PD) affects 1%-2% of individuals older than 60 years and is the 14th leading cause of death in the United States. People with PD, across all stages of the disease, suffer from a significant symptom burden that includes many nonmotor symptoms (such as depression, fatigue, pain, and dementia), and most will ultimately die from complications of this degenerative and incurable illness. Even at diagnosis, a palliative care (PC) approach can help the patient adjust to his or her diagnosis and maintain an optimal quality of life. We brought together a team of PD and PC experts to assemble practical tips for the care of people with PD. The "Top 10" format emphasizes the most relevant issues to enable PC clinicians to provide optimal care for those suffering with this complex neurodegenerative disease.
BACKGROUND: There is increasing interest in applying palliative care approaches for patients with Parkinson's disease. Methodological studies are needed to validate palliative care outcome measures for Parkinson's disease to build this evidence base. As many patients with Parkinson's disease have cognitive and/or communication issues, proxy outcome measures may improve the inclusivity and relevance of research.
AIM: To assess the validity of proxy caregiver reports for several potential palliative care outcome measures.
DESIGN: A cross-sectional study of Parkinson's disease patients and caregivers completed a battery of outcome measures relevant to palliative care including the Memorial Symptom Assessment Scale, Hospital Anxiety and Depression Scale, Prolonged Grief Questionnaire 12, Parkinson Disease Questionnaire 39, Functional Assessment of Chronic Illness Therapy-Spiritual Wellbeing, and Schwab and England. Intraclass correlation coefficients were used to assess agreement.
SETTING/PARTICIPANTS: A total of 50 Parkinson's disease patient and caregiver dyads recruited at an academic medical center, Veterans Affairs Medical Center, and community support groups.
RESULTS: There was moderate to good agreement for Schwab and England, Parkinson Disease Questionnaire 39 total, and majority of Parkinson Disease Questionnaire 39 subscales; moderate to good agreement for the Hospital Anxiety and Depression Scale, Functional Assessment of Chronic Illness Therapy-Spiritual Wellbeing, Prolonged Grief Questionnaire 12, and Memorial Symptom Assessment Scale; and poor to moderate agreement for the Parkinson Disease Questionnaire 39 stigma, social support, and bodily pain subscales. Caregivers tended to attribute higher symptom severity than patients. We did not detect differences in intraclass correlation coefficient based on cognitive status but patients with advanced illness had significantly lower intraclass correlation coefficients for several outcomes.
CONCLUSIONS: Caution is indicated when considering caregiver proxy reporting for most outcomes assessed, particularly in Parkinson's disease patients with advanced disease.
Background: Palliative care in Parkinson's Disease (PD) patients considerably differs from palliative care in oncology patients. Integrated care models are a concept to support patients and improve management of PD symptoms. However, it is not known if the access to PD patients at the end of life can be achieved through integrated care models.
Aim: To analyze an integrated model of care for PD patients with the aim to identify if this integrated model of care has access to PD patients at the end of life.
Material and Methods: The Cologne Parkinson's network was designed as a randomized, controlled prospective clinical trial in order to increase quality of life of PD patients. This innovative model of care integrated a neurologist in private practice, a movement disorder specialist of the University Hospital and a PD nurse. Mortality rates of PD patients during the study period of 6 months were registered and compared with mortality rates of the general population of Germany according to the Federal Statistical Office of Germany. The retrospective post-hoc analysis was conducted after completion of the initial study at the University Hospital and neurologists' practices in the greater area of Cologne, Germany. Eligible patients had a diagnosis of idiopathic PD and were aged 25-85 years.
Results: Parkinson's Disease patients in this trial had an even slightly lower mortality rate as the general population (1.66 v. 2.1%). These results are contradictory and speak for a substantial proportion of late-stage disease patients, who have not been adequately included in this study or have been better treated within this trial. The mean disease duration of patients in this study was around 6 years which resembles the lower range of the mean disease duration at death of PD patients in general.
Conclusions: The results of our post-hoc analysis show, that accessing PD patients in the last phase of their disease is extremely difficult and nearly fails in spite of an integrated care approach. Reasons for poor access and loss of follow-up at the end of life have to be identified and care models for PD patients until the end of life should be developed urgently.
Parkinson's disease (PD) is the second-most common age-related neurodegenerative disorder. Despite recommendations for a palliative approach, little is known about what palliative needs are unmet by standard care. This study aims to (a) identify palliative needs of PD patients, (b) determine the relationship between palliative needs and health-related quality of life (HRQoL), and (c) probe into factors affecting HRQoL. PD patients and neurologists were recruited for a survey on palliative need; a subset of patients was interviewed. Significant differences between physicians and patients were found in Physical, Psychological, Social, Financial, and Spiritual domains. Physical and Psychological needs predicted HRQoL. Primary themes across interviews included (a) lack of healthcare education and (b) need for care coordination. Secondary themes included (a) the importance of support groups, (b) the role of spirituality/religion, and (c) the narrow perceived role of the neurologist. Findings highlight the importance of coordinated individualized care.
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.
In 2002, the World Health Organization (WHO) defined palliative care as an approach that aims to improve the quality of life (QoL) of patients and their
families who are facing problems associated with lifethreatening illness through the prevention and relief of suffering by early identification, careful assessment, and tailored treatment of physical, psychosocial, and
spiritual problems. Palliative care interventions are not only those provided by a service, in which all health care professionals have advanced training in
palliative care modern principles. In the great majority of the cases, especially in the early stages of the disease, palliative care interventions are the operationalization of palliative care principles, which should be
known and offered by any health care professional. They comprise a holistic approach to the patient, including life experiences and current situation, the aim of maintaining and promoting patients’ and family caregivers’ quality of life, the optimization of symptomatic management, and the establishment of an open communication with the patient, family, and
the interdisciplinary team. On the other hand, specialized palliative care services act as a resource for other health care fields. They provide support and advice for patients with more complex and demanding care
needs and train the rest of the team in palliative care principles.
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OBJECTIVES: UK guidelines recommend palliative care access for people with Parkinson's disease; however, this remains sporadic, and it is unknown whether specialist palliative care helps patients and carers cope with this distressing condition. This study aimed to explore whether, and how, access to specialist palliative care services affected patients' and carers' coping with Parkinson's disease.
METHODS: Semistructured interviews were conducted, audio-recorded and verbatim transcribed. Data were analysed using interpretative phenomenological analysis. Participants were patients with advanced idiopathic Parkinson's disease (n=3), and carers of people with Parkinson's disease (n=5, however, one diagnosis was reviewed) receiving care from an integrated specialist palliative care and Parkinson's disease service in North East England.
RESULTS: Access to specialist palliative care helped participants cope with some aspects of advanced Parkinson's disease. Three superordinate themes were developed:' managing uncertainty', 'impacts on the self' and 'specialist palliative care maintaining a positive outlook'.
CONCLUSIONS: Specialist palliative care helped patients and carers cope with advanced Parkinson's disease. Specialist palliative care is a complex intervention that acknowledges the complex and holistic nature of Parkinson's disease, enabling health in some domains despite continued presence of pathology. These exploratory findings support the utility of this approach for people living with Parkinson's disease.
Parkinson's disease (PD) is a slowly progressive multi-system neurodegenerative disorder, with no available disease-modifying treatment. The disease is associated with motor and non-motor symptoms leading to impaired quality of life, disability and significant caregiver distress. Patients with PD benefit from palliative care which provides a holistic approach to meet their multi-faceted needs, including symptom control, communication needs and caregiver support. This article would review on recent articles addressing palliative care for PD.