The impact of COVID-19 on palliative care for people with Parkinson’s and response to future pandemics

References

• Kluger BM, Miyasaki J, Katz M, et al. 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(5):551–560.
   PubMed Web of Science ®Google Scholar
• Prizer LP, Gay JL, Wilson MG, et al. A mixed-methods approach to understanding the palliative needs of Parkinson’s patients. J Appl Gerontol. 2020;39(8):834–845.
   PubMed Web of Science ®Google Scholar
• Martinez-Martin P, Rodriguez-Blazquez C, Kurtis MM, et al. The impact of non-motor symptoms on health-related quality of life of patients with Parkinson’s disease. Mov Dis. 2011;26(3):399–406.
   PubMed Web of Science ®Google Scholar
• Antonini A, Leta V, Teo J, et al. Outcome of Parkinson’s disease patients affected by COVID-19. Mov Disord. 2020;35(6):905–908.
   PubMed Web of Science ®Google Scholar
• Cilia R, Bonvegna S, Straccia G, et al. Effects of COVID-19 on Parkinson’s disease clinical features: a community-based case-control study. Mov Disord. 2020;35(8):1287–1292.
   PubMed Web of Science ®Google Scholar
• Fasano A, Cereda E, Barichella M, et al. COVID-19 in Parkinson’s disease patients Living in Lombardy, Italy. Mov Disord. 2020 July;35(7):1089–1093.
   PubMed Web of Science ®Google Scholar
• Sulzer D, Antonini A, Leta V, et al. COVID-19 and possible links with Parkinson’s disease and parkinsonism: from bench to bedside. NPJ Parkinson’s Dis. 6(1):18. 2020.
   PubMed Web of Science ®Google Scholar
• Hocker S, Kenney DL, Ramar K. Parkinsonism-hyperpyrexia syndrome: broadening our differential diagnosis in the ICU. Neurol Clin Pract. 2013;3(6):535–538.
   PubMedGoogle Scholar
• Zazzara MB, Penfold RS, Roberts AL, et al. Probable delirium is a presenting symptom of COVID-19 in frail, older adults: a cohort study of 322 hospitalised and 535 community-based older adults. Age Ageing. 2021;50(1):40–48.
   PubMed Web of Science ®Google Scholar
• Syed S, Couse M, Ojha R. Management challenges in patients with comorbid COVID-19 associated delirium and serious mental illness - A case series. Int J Psychiatry Med. 2021;91217420985979. 10.1177/0091217420985979
   PubMed Web of Science ®Google Scholar
• Radhakrishnan NS, Mufti M, Ortiz D, et al. Implementing Delirium prevention in the Era of COVID-19. JAD. 2021;79(1):31–36.
   Web of Science ®Google Scholar
• Guo D, Han B, Lu Y, et al. Influence of the COVID-19 pandemic on quality of life of patients with Parkinson’s Disease. Parkinsons Dis. 2020;2020:1216568.
   PubMed Web of Science ®Google Scholar
• Brown EG, Chahine LM, Goldman SM, et al. The effect of the COVID-19 pandemic on people with Parkinson’s Disease. J Parkinsons Dis. 2020;10(4):1365–1377.
   PubMedGoogle Scholar
• Helmich RC, Bloem BR. The impact of the COVID-19 pandemic on Parkinson’s Disease: hidden sorrows and emerging opportunities. J Parkinsons Dis. 2020;10(2):351–354.
   PubMedGoogle Scholar
• Van Der Heide A, Meinders MJ, Bloem BR, et al. The impact of the COVID-19 pandemic on psychological distress, physical activity, and symptom severity in Parkinson’s Disease. J Parkinsons Dis. 2020;10(4):1355–1364.
   PubMedGoogle Scholar
• Seppi K, Ray Chaudhuri K, Coelho M, et al. Update on treatments for nonmotor symptoms of Parkinson’s disease-an evidence-based medicine review. Mov Disord. 2019;34(2):180–198.
   PubMed Web of Science ®Google Scholar
• Rukavina K, Batzu L, Boogers A, et al. Non-motor complications in late stage Parkinson’s disease: recognition, management and unmet needs. Expert Rev Neurother. 2021;21(3):335–352.
   PubMed Web of Science ®Google Scholar
• Chaudhuri KR, Martinez-Martin P, Schapira AH, et al. International multicenter pilot study of the first comprehensive self-completed nonmotor symptoms questionnaire for Parkinson’s disease: the NMSQuest study. Mov Disord. 2006;21(7):916–923.
   PubMed Web of Science ®Google Scholar
• Van Wamelen DJ, Martinez-Martin P, Weintraub D, et al. The non-motor symptoms scale in Parkinson’s disease: validation and use. Acta Neurol Scand. 2021 January;143(1):3–12.
   PubMed Web of Science ®Google Scholar
• Chaudhuri KR, Sauerbier A, Rojo JM, et al. The burden of non-motor symptoms in Parkinson’s disease using a self-completed non-motor questionnaire: a simple grading system. Parkinsonism Relat Disord. 2015;21(3):287–291.
   PubMed Web of Science ®Google Scholar
• Nasreddine ZS, Phillips NA, Bedirian V, et al. The montreal cognitive assessment, MoCA: a brief screening tool for mild cognitive impairment. J Am Geriatr Soc. 2005;53(4):695–699.
   PubMed Web of Science ®Google Scholar
• Williams FMK, Muirhead N, Pariante C. Covid-19 and chronic fatigue. BMJ. 2020;370:m2922.
   PubMed Web of Science ®Google Scholar
• Lazcano-Ocampo C, Wan YM, Van Wamelen DJ, et al. Identifying and responding to fatigue and apathy in Parkinson’s disease: a review of current practice. Expert Rev Neurother. 2020;20(5):477–495.
   PubMed Web of Science ®Google Scholar
• Salari M, Zali A, Ashrafi F, et al. Incidence of anxiety in Parkinson’s disease during the coronavirus disease (COVID-19) Pandemic. Mov Disord. 2020 July;35(7):1095–1096.
   PubMed Web of Science ®Google Scholar
• Xia Y, Kou L, Zhang G, et al. Investigation on sleep and mental health of patients with Parkinson’s disease during the coronavirus disease 2019 pandemic. Sleep Med. 2020;75:428–433.
   PubMed Web of Science ®Google Scholar
• Farrar JT, Young JP Jr., LaMoreaux L, et al. Clinical importance of changes in chronic pain intensity measured on an 11-point numerical pain rating scale. Pain. 2001;94(2):149–158.
   PubMed Web of Science ®Google Scholar
• Hoehn MM, Yahr MD. Parkinsonism: onset, progression, and mortality. Neurology. 1967;17(5):427–442.
   PubMed Web of Science ®Google Scholar
• Kumar N, Gupta R, Kumar H, et al. Impact of home confinement during COVID-19 pandemic on sleep parameters in Parkinson’s disease. Sleep Med. 2021;77:15–22.
   PubMed Web of Science ®Google Scholar
• Palermo G, Tommasini L, Baldacci F, et al. Impact of coronavirus disease 2019 pandemic on cognition in Parkinson’s disease. Mov Disord. 2020;35(10):1717–1718.
   PubMed Web of Science ®Google Scholar
• https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/892376/COVID_stakeholder_engagement_synthesis_beyond_the_data.pdf
   Google Scholar
• Otu A, Ahinkorah BO, Ameyaw EK, et al. One country, two crises: what Covid-19 reveals about health inequalities among BAME communities in the United Kingdom and the sustainability of its health system? Int J Equity Health. 2020;19(1):189.
   PubMed Web of Science ®Google Scholar
• Hearn J, Higginson IJ. Development and validation of a core outcome measure for palliative care: the palliative care outcome scale. Palliative care core audit project advisory group. Quality in health care: QHC. 1999;8(4):219–227.
   PubMedGoogle Scholar
• Gao W, Crosby V, Wilcock A, et al. Psychometric properties of a generic, patient-centred palliative care outcome measure of symptom burden for people with progressive long term neurological conditions. PloS One. 2016;11(10):e0165379.
   PubMed Web of Science ®Google Scholar
• Best M, Leget C, Goodhead A, et al. EAPC white paper on multi-disciplinary education for spiritual care in palliative care. BMC Palliat Care. 2020;19(1):9.
   PubMed Web of Science ®Google Scholar
• Frick E. Spiritual Care – how does it work? Spiritual Care. 2017;6(2):223–224.
   Google Scholar
• Paal P, Lorenzl S. Patients with Parkinson’s disease need spiritual care. Ann Palliat Med. 2020 March;9(2):144–148.
   PubMed Web of Science ®Google Scholar
• Gijsberts M-JHE, Liefbroer AI, Otten R, et al. Spiritual care in Palliative care: a Systematic review of the recent European Literature. Med Sci. 2019;7(2):25.
   Google Scholar
• Boersma I, Jones J, Coughlan C, et al. Palliative care and Parkinson’s disease: Caregiver perspectives. J Palliat Med. 2017;20(9):930–938.
   PubMed Web of Science ®Google Scholar
• Subramanian I, Christina LV. Hoping for the best, planning for the worst: palliative care approach to Parkinson disease during the COVID-19 pandemic. In: Parkinsonism & related disorders. 2020;80:203-205.
   Google Scholar
• Artusi CA, Romagnolo A, Imbalzano G et al. COVID-19 in Parkinson’s disease: report on prevalence and outcome. Parkinsonism & related disorders. 2020;80:7–9
   Google Scholar
• Fasano A, Elia AE, Dallocchio C, et al. Predictors of COVID-19 outcome in Parkinson’s disease. Parkinsonism Relat Disord. 2020;78:134–137.
   PubMed Web of Science ®Google Scholar
• Sainz-Amo R, Baena-Alvarez B, Parees I, et al. COVID-19 in Parkinson’s disease: what holds the key? J Neurol. 2020;24:1–5.
   Google Scholar
• Del Prete E, Francesconi A, Palermo G, et al. Prevalence and impact of COVID-19 in Parkinson’s disease: evidence from a multi-center survey in Tuscany region. J Neurol. 2021 April;268(4):1179–1187.
   PubMed Web of Science ®Google Scholar
• Miyasaki JM, Long J, Mancini D, et al. Palliative care for advanced Parkinson disease: an interdisciplinary clinic and new scale, the ESAS-PD. Parkinsonism Relat Disord. 2012;18(Suppl 3):S6–9.
   PubMedGoogle Scholar
• Kobylecki C, Jones T, Lim CK, et al. Phenomenology and outcomes of in-patients with Parkinson’s disease during the Coronavirus disease 2019 pandemic. Mov Dis. 2020;35(8):1295–1296.
   PubMed Web of Science ®Google Scholar
• Klietz M, Schnur T, Drexel S, et al. Association of motor and cognitive symptoms with health-related quality of life and Caregiver burden in a German Cohort of advanced Parkinson’s disease patients. Parkinsons Dis. 2020;2020:5184084.
   PubMed Web of Science ®Google Scholar
• Prizer LP, Kluger BM, Sillau S, et al. The presence of a caregiver is associated with patient outcomes in patients with Parkinson’s disease and atypical parkinsonisms. Parkinsonism Relat Disord. 2020;78:61–65.
   PubMed Web of Science ®Google Scholar
• Macchi ZA, Koljack CE, Miyasaki JM, et al. Patient and caregiver characteristics associated with caregiver burden in Parkinson’s disease: a palliative care approach. Ann Palliat Med. 2020;9(Suppl 1):S24–S33.
   PubMed Web of Science ®Google Scholar
• Schmotz C, Richinger C, Lorenzl S. High burden and depression among late-stage idiopathic Parkinson disease and progressive supranuclear palsy caregivers. J Geriatr Psychiatry Neurol. 2017;30(5):267–272.
   PubMed Web of Science ®Google Scholar
• Reyes S, Ramsay M, Ladhani S, et al. Protecting people with multiple sclerosis through vaccination. Pract Neurol. 2020;20(6):435–445.
   PubMedGoogle Scholar
• https://nice.org.uk/guidance/ng188
   Google Scholar
• Tancheva L, Petralia MC, Miteva S, et al. Emerging neurological and psychobiological aspects of COVID-19 infection. Brain Sci. 2020;10(11):11.
   Web of Science ®Google Scholar
• Leta V, Rodríguez-Violante M, Abundes A et al. Parkinson's Disease and Post-COVID-19 Syndrome: The Parkinson's Long-COVID Spectrum. Mov Disord. 2021 Apr 22. doi:10.1002/mds.28622. Epub ahead of print. PMID: 33890344.
   Google Scholar
• Chaudhuri KR, Pal S, DiMarco A, et al. The Parkinson’s disease sleep scale: a new instrument for assessing sleep and nocturnal disability in Parkinson’s disease. J Neurol Neurosurg Psychiatry. 2002;73(6):629–635.
   PubMed Web of Science ®Google Scholar
• Jenkinson C, Fitzpatrick R, Peto V, et al. The Parkinson’s disease questionnaire (PDQ-39): development and validation of a Parkinson’s disease summary index score. Age Ageing. 1997;26(5):353–357.
   PubMed Web of Science ®Google Scholar