Increasing evidence demonstrates the benefits of palliative care among individuals with Parkinson's disease and related disorders (PDRD), but the critical components that contribute to therapeutic effects are not well understood.
To determine the specific items most responsive to a palliative care intervention in PDRD and identify key correlates of improvement in patient and care partner outcomes.
The main trial was a pragmatic comparative effectiveness trial of outpatient integrated palliative care compared to standard care among participants with PDRD (NCT02533921), showing significantly higher patient QOL at six months and lower care partner burden at 12 months. We used longitudinal regression models to analyze changes in subdomains of patient QOL and care partner burden and Spearman correlations to evaluate key correlates of change scores in patient and care partner outcomes. We performed a secondary analysis of data from 210 patients and 175 care partners.
Compared to controls, patients in the intervention reported greater improvement in perceptions of the “self as a whole” at six months (coeff = 0.22, P < 0.05) and care partners reported greater reduction in stress, anger, and loss of control at 12 months (coeff = -.40, -0.25, -0.31, P < 0.05). Positive change in numerous patient non-motor symptoms and grief correlated with improved patient QOL, reduced patient anxiety, and increased care partner spirituality. Alleviation of care partner anxiety and depression correlated with reduced care partner burden.
Specific benefits of an integrated palliative approach in PDRD include improvement in patient holistic self-impressions, care partner self-efficacy, and non-motor symptoms.
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- Early palliative care for patients with metastatic non-small-cell lung cancer.N Engl J Med. 2010; 363: 733-742
- Phase II study of an outpatient palliative care intervention in patients with metastatic cancer.J Clin Oncol. 2009; 27: 206-213
- Specialist palliative care improves the quality of life in advanced neurodegenerative disorders: NE-PAL, a pilot randomised controlled study.BMJ Support Palliat Care. 2017; 7: 164-172
- Comparison of integrated outpatient palliative care with standard care in patients with parkinson disease and related disorders: a randomized clinical trial.JAMA Neurol. 2020; 77: 551-560
- The imPaCT study: a randomised controlled trial to evaluate a hospital palliative care team.Br J Cancer. 2002; 87: 733-739
- Emergency department-initiated palliative care in advanced cancer: a randomized clinical trial.JAMA Oncol. 2016; 2: 591-598
- The impact of a home-based palliative care program in an accountable care organization.J Palliat Med. 2017; 20: 23-28
- Nonmotor manifestations in Parkinson disease.Neurologist. 2012; 18: 1-16
- Non-recognition of depression and other non-motor symptoms in Parkinson's disease.Parkinsonism Relat Disord. 2002; 8: 193-197
- Palliative care for advanced Parkinson disease: an interdisciplinary clinic and new scale, the ESAS-PD.Parkinsonism Relat Disord. 2012; 18: S6-S9
- Defining palliative care needs in Parkinson's disease.Mov Disord Clin Pract. 2019; 6: 125-131
- Parkinson disease patients' perspectives on palliative care needs: What are they telling us?.Neurol Clin Pract. 2016; 6: 209-219
- Palliative care and Parkinson's disease: caregiver perspectives.J Palliat Med. 2017; 20: 930-938
- Needs and experiences of caregivers for family members dying with Parkinson disease.J Palliat Care. 2008; 24: 69-75
- Palliative care and Parkinson's disease: managing the chronic-palliative interface.Chronic Illn. 2009; 5: 46-55
- Association of receipt of palliative care interventions with health care use, quality of life, and symptom burden among adults with chronic noncancer illness: a systematic review and meta-analysis.Jama. 2020; 324: 1439-1450
- Palliative care for chronic illness: driving change.Cmaj. 2016; 188: E493-E4e8
- Quality of life, health status and caregiver burden in Parkinson's disease: relationship to executive functioning.Int J Geriatr Psych. 2014; 29: 68-76
- Caregiver burden in Parkinson's disease.Movement Disord. 2007; 22: 924-931
- Neuropsychiatric symptoms and caregiver's burden in Parkinson's disease.Parkinsonism Relat D. 2015; 21: 629-634
- Does outpatient palliative care improve patient-centered outcomes in Parkinson's disease: Rationale, design, and implementation of a pragmatic comparative effectiveness trial.Contemp Clin Trials. 2019; 79: 28-36
- Development of the palliative care needs assessment tool (PC-NAT) for use by multi-disciplinary health professionals.Palliat Med. 2008; 22: 956-964
- Whose quality of life is it anyway? The validity and reliability of the quality of life-Alzheimer's disease (QoL-AD) scale.Alzheimer Dis Assoc Disord. 2003; 17: 201-208
- Assessing quality of life in older adults with cognitive impairment.Psychosom Med. 2002; 64: 510-519
- Effects of galantamine and galantamine combined with nimodipine on cognitive speed and quality of life in mixed dementia: a 24-week, randomized, placebo-controlled exploratory trial (the REMIX study).Arq Neuropsiquiatr. 2014; 72: 411-417
- The Zarit Burden Interview: a new short version and screening version.Gerontologist. 2001; 41: 652-657
- Assessment of burden among family caregivers of people with Parkinson's disease using the zarit burden interview.J Pain Symptom Manage. 2017; 53: 272-278
- Understanding the burden on caregivers of people with Parkinson's: a scoping review of the literature.Rehabil Res Pract. 2014; 2014718527
- Caregiver burden in Parkinson disease: a critical review of recent literature.J Geriatr Psychiatry Neurol. 2017; 30: 235-252
- The Edmonton symptom assessment system (ESAS): a simple method for the assessment of palliative care patients.J Palliat Care. 1991; 7: 6-9
- A 3-factor model for the FACIT-Sp.Psychooncology. 2008; 17: 908-916
- Validity of the FACIT-Sp to assess spiritual well-being in elderly patients.Psychology. 2015; 06: 1311-1322
Prigerson HGM, P.K. Prolonged Grief Disorder Inventory (PG–12). Unpublished instrument. 2008.
- The hospital anxiety and depression scale.Acta Psychiatr Scand. 1983; 67: 361-370
- Quality of life in Alzheimer's disease: patient and caregiver reports.J Mental Health Aging. 1999; 5: 21-32
Organization W.H. WHO definition of palliative care. : world health organization website., 2020, Available from: https://www.who.int/cancer/palliative/definition/en/.
- Correlation between depression and quality of life in patients with Parkinson's disease.Clin Neurol Neurosurg. 2021; 202106523
- Factors affecting the quality of life of patients with idiopathic Parkinson's disease–a cross-sectional study in an outpatient clinic attendees.Parkinsonism Relat Disord. 2005; 11: 465-468
- Predictors of general and health-related quality of life in Parkinson's disease and related disorders including caregiver perspectives.Parkinsonism Relat Disord. 2020; 77: 5-10
- Latent growth-curve analysis reveals that worsening Parkinson's disease quality of life is driven by depression.Neuropsychology. 2015; 29: 603-609
- Burden, perceived health status, and mood among caregivers of Parkinson's disease patients.Mov Disord. 2008; 23: 1673-1680
- Predictors of burden for caregivers of patients with Parkinson's disease.J Neurosci Nurs. 2002; 34: 184-190
- Caregiver-burden in Parkinson's disease is closely associated with psychiatric symptoms, falls, and disability.Parkinsonism Relat Disord. 2006; 12: 35-41
- End-of-life experiences in dementia with Lewy bodies: Qualitative interviews with former caregivers.PLoS One. 2019; 14e0217039
- Non-motor symptoms in Parkinson's disease.Parkinsonism Relat Disord. 2016; 22 (:S119-22)
- Spirituality, religion and palliative care.Ann Palliat Med. 2014; 3: 150-159
- Measuring spiritual well-being in people with cancer: the functional assessment of chronic illness therapy–Spiritual Well-being Scale (FACIT-Sp).Ann Behav Med. 2002; 24: 49-58
Published online: January 30, 2022
Accepted: January 22, 2022
© 2022 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.