{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,17]],"date-time":"2026-09-17T21:33:51Z","timestamp":1789680831650,"version":"4.0.1"},"reference-count":70,"publisher":"Springer Science and Business Media LLC","issue":"4","license":[{"start":{"date-parts":[[2023,1,12]],"date-time":"2023-01-12T00:00:00Z","timestamp":1673481600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2023,1,12]],"date-time":"2023-01-12T00:00:00Z","timestamp":1673481600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"DOI":"10.13039\/100006483","name":"AbbVie","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100006483","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["J Neurol"],"published-print":{"date-parts":[[2023,4]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec>\n                <jats:title>Background<\/jats:title>\n                <jats:p>Caring for a partner or family member with Parkinson\u2019s disease (PD) negatively affects the caregiver\u2019s own physical and emotional well-being, especially those caring for people with advanced PD (APD). This study was designed to examine the impact of APD on caregiver perceived burden, quality of life (QoL), and health status.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Methods<\/jats:title>\n                <jats:p>Dyads of people with PD and their primary caregivers were identified from the Adelphi Parkinson\u2019s Disease Specific Program (DSP\u2122) using real-world data from the United States, Japan and five European countries. Questionnaires were used to capture measures of clinical burden (people with PD) and caregiver burden (caregivers).<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Results<\/jats:title>\n                <jats:p>Data from 721 patient-caregiver dyads in seven countries were captured. Caregivers had a mean age 62.6\u00a0years, 71.6% were female, and 70.4% were a spouse. Caregivers for people with APD had a greater perceived burden, were more likely to take medication and had lower caregiver treatment satisfaction than those caring for people with early or intermediate PD; similar findings were observed for caregivers of people with intermediate versus early PD. Caregivers for people with intermediate PD were also less likely to be employed than those with early PD (25.3% vs 42.4%) and spent more time caring (6.6 vs 3.2\u00a0h\/day).<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Conclusions<\/jats:title>\n                <jats:p>This real-world study demonstrates that caregivers of people with APD experience a greater burden than those caring for people with early PD. This highlights the importance of including caregiver-centric measures in future studies, and emphasizes the need for implementing treatments that reduce caregiver burden in APD.<\/jats:p>\n                <jats:p><jats:bold>Trial registration:<\/jats:bold> N\/A.<\/jats:p>\n              <\/jats:sec>","DOI":"10.1007\/s00415-022-11546-5","type":"journal-article","created":{"date-parts":[[2023,1,12]],"date-time":"2023-01-12T12:08:32Z","timestamp":1673525312000},"page":"2162-2173","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":45,"title":["Impact of advanced Parkinson\u2019s disease on caregivers: an international real-world study"],"prefix":"10.1007","volume":"270","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-0837-5280","authenticated-orcid":false,"given":"Pablo","family":"Martinez-Martin","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5497-8715","authenticated-orcid":false,"given":"Matej","family":"Skorvanek","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5171-1166","authenticated-orcid":false,"given":"Tove","family":"Henriksen","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Susanna","family":"Lindvall","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9390-6183","authenticated-orcid":false,"given":"Josefa","family":"Domingos","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0720-7894","authenticated-orcid":false,"given":"Ali","family":"Alobaidi","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3702-4343","authenticated-orcid":false,"given":"Prasanna L.","family":"Kandukuri","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5286-9213","authenticated-orcid":false,"given":"Vivek S.","family":"Chaudhari","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8948-6785","authenticated-orcid":false,"given":"Apeksha B.","family":"Patel","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5613-6121","authenticated-orcid":false,"given":"Juan Carlos","family":"Parra","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4208-2871","authenticated-orcid":false,"given":"James","family":"Pike","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1040-2807","authenticated-orcid":false,"given":"Angelo","family":"Antonini","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2023,1,12]]},"reference":[{"key":"11546_CR1","volume-title":"Parkinson disease. StatPearls. StatPearls Publishing Copyright \u00a9 2021","author":"S Zafar","year":"2021","unstructured":"Zafar S, Yaddanapudi SS (2021) Parkinson disease. StatPearls. StatPearls Publishing Copyright \u00a9 2021. StatPearls Publishing LLC., Treasure Island, FL"},{"issue":"3\u20134","key":"11546_CR2","doi-asserted-by":"publisher","first-page":"131","DOI":"10.1159\/000479031","volume":"48","author":"K Rajiah","year":"2017","unstructured":"Rajiah K, Maharajan MK, Yeen SJ, Lew S (2017) Quality of Life and caregivers\u2019 burden of Parkinson\u2019s disease. Neuroepidemiology 48(3\u20134):131\u2013137. https:\/\/doi.org\/10.1159\/000479031","journal-title":"Neuroepidemiology"},{"key":"11546_CR3","doi-asserted-by":"publisher","first-page":"173","DOI":"10.1016\/j.jns.2016.12.060","volume":"373","author":"R Balestrino","year":"2017","unstructured":"Balestrino R, Martinez-Martin P (2017) Neuropsychiatric symptoms, behavioural disorders, and quality of life in Parkinson\u2019s disease. J Neurol Sci 373:173\u2013178. https:\/\/doi.org\/10.1016\/j.jns.2016.12.060","journal-title":"J Neurol Sci"},{"key":"11546_CR4","doi-asserted-by":"publisher","first-page":"86","DOI":"10.1016\/j.parkreldis.2019.05.009","volume":"65","author":"GD Kuhlman","year":"2019","unstructured":"Kuhlman GD, Flanigan JL, Sperling SA, Barrett MJ (2019) Predictors of health-related quality of life in Parkinson\u2019s disease. Parkinsonism Relat Disord 65:86\u201390. https:\/\/doi.org\/10.1016\/j.parkreldis.2019.05.009","journal-title":"Parkinsonism Relat Disord"},{"issue":"1","key":"11546_CR5","doi-asserted-by":"publisher","first-page":"198","DOI":"10.3390\/ijerph18010198","volume":"18","author":"P Crispino","year":"2020","unstructured":"Crispino P, Gino M, Barbagelata E, Ciarambino T, Politi C, Ambrosino I et al (2020) Gender differences and quality of life in Parkinson\u2019s disease. Int J Environ Res Public Health 18(1):198. https:\/\/doi.org\/10.3390\/ijerph18010198","journal-title":"Int J Environ Res Public Health"},{"issue":"1","key":"11546_CR6","doi-asserted-by":"publisher","first-page":"17","DOI":"10.1111\/ane.13095","volume":"140","author":"Y Balash","year":"2019","unstructured":"Balash Y, Korczyn AD, Migirov AA, Gurevich T (2019) Quality of life in Parkinson\u2019s disease: a gender-specific perspective. Acta Neurol Scand 140(1):17\u201322. https:\/\/doi.org\/10.1111\/ane.13095","journal-title":"Acta Neurol Scand"},{"issue":"8","key":"11546_CR7","doi-asserted-by":"publisher","first-page":"493","DOI":"10.1590\/0004-282x20170114","volume":"75","author":"JCP Limongi","year":"2017","unstructured":"Limongi JCP (2017) Quality of life in Parkinson\u2019s disease. Arq Neuropsiquiatr 75(8):493\u2013494. https:\/\/doi.org\/10.1590\/0004-282x20170114","journal-title":"Arq Neuropsiquiatr"},{"key":"11546_CR8","doi-asserted-by":"publisher","first-page":"113","DOI":"10.1016\/j.jocn.2019.08.058","volume":"70","author":"R Palmeri","year":"2019","unstructured":"Palmeri R, Lo Buono V, Bonanno L, Sorbera C, Cimino V, Bramanti P et al (2019) Potential predictors of quality of life in Parkinson\u2019s disease: sleep and mood disorders. J Clin Neurosci 70:113\u2013117. https:\/\/doi.org\/10.1016\/j.jocn.2019.08.058","journal-title":"J Clin Neurosci"},{"issue":"3","key":"11546_CR9","doi-asserted-by":"publisher","first-page":"122","DOI":"10.1097\/rnj.0000000000000179","volume":"45","author":"JYY Kwok","year":"2020","unstructured":"Kwok JYY, Auyeung M, Chan HYL (2020) Examining factors related to health-related quality of life in people with Parkinson\u2019s disease. Rehabil Nurs. 45(3):122\u2013130. https:\/\/doi.org\/10.1097\/rnj.0000000000000179","journal-title":"Rehabil Nurs."},{"issue":"1","key":"11546_CR10","doi-asserted-by":"publisher","first-page":"42","DOI":"10.14802\/jmd.20079","volume":"14","author":"M Lubomski","year":"2021","unstructured":"Lubomski M, Davis RL, Sue CM (2021) Health-Related Quality of life for Parkinson\u2019s disease patients and their caregivers. J Mov Disord 14(1):42\u201352. https:\/\/doi.org\/10.14802\/jmd.20079","journal-title":"J Mov Disord"},{"key":"11546_CR11","doi-asserted-by":"publisher","first-page":"4598651","DOI":"10.1155\/2018\/4598651","volume":"2018","author":"C Sj\u00f6dahl Hammarlund","year":"2018","unstructured":"Sj\u00f6dahl Hammarlund C, Westergren A, \u00c5str\u00f6m I, Edberg A-K, Hagell P (2018) The impact of living with Parkinson\u2019s disease: balancing within a web of needs and demands. Parkinson\u2019s Dis 2018:4598651. https:\/\/doi.org\/10.1155\/2018\/4598651","journal-title":"Parkinson\u2019s Dis"},{"issue":"3","key":"11546_CR12","doi-asserted-by":"publisher","first-page":"270","DOI":"10.1111\/cns.13549","volume":"27","author":"N Zhao","year":"2021","unstructured":"Zhao N, Yang Y, Zhang L, Zhang Q, Balbuena L, Ungvari GS et al (2021) Quality of life in Parkinson\u2019s disease: a systematic review and meta-analysis of comparative studies. CNS Neurosci Ther 27(3):270\u2013279. https:\/\/doi.org\/10.1111\/cns.13549","journal-title":"CNS Neurosci Ther"},{"issue":"1","key":"11546_CR13","doi-asserted-by":"publisher","first-page":"1","DOI":"10.1016\/j.cger.2019.08.002","volume":"36","author":"DK Simon","year":"2020","unstructured":"Simon DK, Tanner CM, Brundin P (2020) Parkinson disease epidemiology, pathology, genetics, and pathophysiology. Clin Geriatr Med. 36(1):1\u201312. https:\/\/doi.org\/10.1016\/j.cger.2019.08.002","journal-title":"Clin Geriatr Med."},{"issue":"1","key":"11546_CR14","doi-asserted-by":"publisher","first-page":"19","DOI":"10.1002\/mds.10305","volume":"18","author":"D Twelves","year":"2003","unstructured":"Twelves D, Perkins KS, Counsell C (2003) Systematic review of incidence studies of Parkinson\u2019s disease. Mov Disord 18(1):19\u201331. https:\/\/doi.org\/10.1002\/mds.10305","journal-title":"Mov Disord"},{"key":"11546_CR15","doi-asserted-by":"publisher","first-page":"21","DOI":"10.1038\/s41531-018-0058-0","volume":"4","author":"C Marras","year":"2018","unstructured":"Marras C, Beck JC, Bower JH, Roberts E, Ritz B, Ross GW et al (2018) Prevalence of Parkinson\u2019s disease across North America. NPJ Parkinsons Dis 4:21. https:\/\/doi.org\/10.1038\/s41531-018-0058-0","journal-title":"NPJ Parkinsons Dis"},{"issue":"s1","key":"11546_CR16","doi-asserted-by":"publisher","first-page":"S3","DOI":"10.3233\/JPD-181474","volume":"8","author":"ER Dorsey","year":"2018","unstructured":"Dorsey ER, Sherer T, Okun MS, Bloem BR (2018) The emerging evidence of the Parkinson pandemic. J Parkinsons Dis 8(s1):S3\u2013S8. https:\/\/doi.org\/10.3233\/JPD-181474","journal-title":"J Parkinsons Dis"},{"key":"11546_CR17","doi-asserted-by":"publisher","first-page":"15","DOI":"10.1038\/s41531-020-0117-1","volume":"6","author":"W Yang","year":"2020","unstructured":"Yang W, Hamilton JL, Kopil C, Beck JC, Tanner CM, Albin RL et al (2020) Current and projected future economic burden of Parkinson\u2019s disease in the US. NPJ Parkinsons Dis 6:15. https:\/\/doi.org\/10.1038\/s41531-020-0117-1","journal-title":"NPJ Parkinsons Dis"},{"issue":"2","key":"11546_CR18","doi-asserted-by":"publisher","first-page":"221","DOI":"10.1586\/erp.11.106","volume":"12","author":"P Martinez-Martin","year":"2012","unstructured":"Martinez-Martin P, Rodriguez-Blazquez C, Forjaz MJ (2012) Quality of life and burden in caregivers for patients with Parkinson\u2019s disease: concepts, assessment and related factors. Expert Rev Pharmacoecon Outcomes Res 12(2):221\u2013230. https:\/\/doi.org\/10.1586\/erp.11.106","journal-title":"Expert Rev Pharmacoecon Outcomes Res"},{"issue":"9","key":"11546_CR19","doi-asserted-by":"publisher","first-page":"930","DOI":"10.1089\/jpm.2016.0325","volume":"20","author":"I Boersma","year":"2017","unstructured":"Boersma I, Jones J, Coughlan C, Carter J, Bekelman D, Miyasaki J et al (2017) Palliative care and Parkinson\u2019s disease: caregiver perspectives. J Palliat Med 20(9):930\u2013938. https:\/\/doi.org\/10.1089\/jpm.2016.0325","journal-title":"J Palliat Med"},{"issue":"6","key":"11546_CR20","doi-asserted-by":"publisher","first-page":"338","DOI":"10.1097\/rnj.0000000000000158","volume":"44","author":"J Lee","year":"2019","unstructured":"Lee J, Kim SH, Kim Y, Kim YL, Sohn Y (2019) Quality of life of caregivers of individuals with Parkinson\u2019s disease. Rehabil Nurs 44(6):338\u2013348. https:\/\/doi.org\/10.1097\/rnj.0000000000000158","journal-title":"Rehabil Nurs"},{"issue":"9\u201310","key":"11546_CR21","doi-asserted-by":"publisher","first-page":"343","DOI":"10.18071\/isz.71.0343","volume":"71","author":"B Yuksel","year":"2018","unstructured":"Yuksel B, Ak PD, Sen A, Sariahmetoglu H, Uslu SC, Atakli D (2018) Caregiver burden and quality of life in early stages of idiopathic Parkinson\u2019s disease. Ideggyogy Sz 71(9\u201310):343\u2013350","journal-title":"Ideggyogy Sz"},{"key":"11546_CR22","doi-asserted-by":"publisher","first-page":"455","DOI":"10.3389\/fneur.2020.00455","volume":"11","author":"SB Tan","year":"2020","unstructured":"Tan SB, Williams AF, Tan EK, Clark RB, Morris ME (2020) Parkinson\u2019s disease caregiver strain in Singapore. Front Neurol 11:455. https:\/\/doi.org\/10.3389\/fneur.2020.00455","journal-title":"Front Neurol"},{"key":"11546_CR23","doi-asserted-by":"publisher","DOI":"10.1007\/s00455-021-10299-z","author":"SE Perry","year":"2021","unstructured":"Perry SE, Borders JC, Dakin AE, Troche MS (2021) Characterizing quality of life in caregivers of people with Parkinson\u2019s disease and dysphagia. Dysphagia. https:\/\/doi.org\/10.1007\/s00455-021-10299-z","journal-title":"Dysphagia"},{"key":"11546_CR24","doi-asserted-by":"publisher","first-page":"2899","DOI":"10.2147\/ndt.S256217","volume":"16","author":"N Modugno","year":"2020","unstructured":"Modugno N, Antonini A, Tessitore A, Marano P, Pontieri FE, Tambasco N et al (2020) Impact of supporting people with advanced Parkinson\u2019s disease on career\u2019s quality of life and burden. Neuropsychiatr Dis Treat 16:2899\u20132912. https:\/\/doi.org\/10.2147\/ndt.S256217","journal-title":"Neuropsychiatr Dis Treat"},{"issue":"5","key":"11546_CR25","doi-asserted-by":"publisher","first-page":"1124","DOI":"10.1007\/s00415-018-8816-9","volume":"265","author":"A Tessitore","year":"2018","unstructured":"Tessitore A, Marano P, Modugno N, Pontieri FE, Tambasco N, Canesi M et al (2018) Caregiver burden and its related factors in advanced Parkinson\u2019s disease: data from the PREDICT study. J Neurol 265(5):1124\u20131137. https:\/\/doi.org\/10.1007\/s00415-018-8816-9","journal-title":"J Neurol"},{"issue":"5","key":"11546_CR26","doi-asserted-by":"publisher","first-page":"371","DOI":"10.1007\/bf03324464","volume":"14","author":"M Caap-Ahlgren","year":"2002","unstructured":"Caap-Ahlgren M, Dehlin O (2002) Factors of importance to the caregiver burden experienced by family caregivers of Parkinson\u2019s disease patients. Aging Clin Exp Res 14(5):371\u2013377. https:\/\/doi.org\/10.1007\/bf03324464","journal-title":"Aging Clin Exp Res"},{"issue":"2","key":"11546_CR27","doi-asserted-by":"publisher","first-page":"137","DOI":"10.1037\/rep0000313","volume":"65","author":"RS Henry","year":"2020","unstructured":"Henry RS, Lageman SK, Perrin PB (2020) The relationship between Parkinson\u2019s disease symptoms and caregiver quality of life. Rehabil Psychol. 65(2):137\u2013144. https:\/\/doi.org\/10.1037\/rep0000313","journal-title":"Rehabil Psychol."},{"issue":"9","key":"11546_CR28","doi-asserted-by":"publisher","DOI":"10.1002\/brb3.787","volume":"7","author":"M Gultekin","year":"2017","unstructured":"Gultekin M, Ekinci A, Erturk G, Mirza M (2017) Female Parkinson\u2019s disease caregivers have much anxiety and depressive symptom. Brain Behav 7(9):e00787. https:\/\/doi.org\/10.1002\/brb3.787","journal-title":"Brain Behav"},{"issue":"6","key":"11546_CR29","doi-asserted-by":"publisher","DOI":"10.5001\/omj.2020.91","volume":"35","author":"P Saadat","year":"2020","unstructured":"Saadat P, Faramarzi M, Salimkhani F, Khafri S (2020) Psychiatric symptoms in patients and caregivers with Parkinson\u2019s disease. Oman Med J 35(6):e205. https:\/\/doi.org\/10.5001\/omj.2020.91","journal-title":"Oman Med J"},{"issue":"7","key":"11546_CR30","doi-asserted-by":"publisher","first-page":"924","DOI":"10.1002\/mds.21355","volume":"22","author":"P Mart\u00ednez-Mart\u00edn","year":"2007","unstructured":"Mart\u00ednez-Mart\u00edn P, Forjaz MJ, Frades-Payo B, Rusi\u00f1ol AB, Fern\u00e1ndez-Garc\u00eda JM, Benito-Le\u00f3n J et al (2007) Caregiver burden in Parkinson\u2019s disease. Mov Disord 22(7):924\u2013931. https:\/\/doi.org\/10.1002\/mds.21355","journal-title":"Mov Disord"},{"issue":"1","key":"11546_CR31","doi-asserted-by":"publisher","first-page":"35","DOI":"10.1016\/j.parkreldis.2005.06.011","volume":"12","author":"A Schrag","year":"2006","unstructured":"Schrag A, Hovris A, Morley D, Quinn N, Jahanshahi M (2006) Caregiver-burden in Parkinson\u2019s disease is closely associated with psychiatric symptoms, falls, and disability. Parkinsonism Relat Disord 12(1):35\u201341. https:\/\/doi.org\/10.1016\/j.parkreldis.2005.06.011","journal-title":"Parkinsonism Relat Disord"},{"issue":"1","key":"11546_CR32","doi-asserted-by":"publisher","first-page":"26","DOI":"10.14802\/jmd.14019","volume":"8","author":"YS Oh","year":"2015","unstructured":"Oh YS, Lee JE, Lee PH, Kim JS (2015) Neuropsychiatric symptoms in Parkinson\u2019s disease dementia are associated with increased caregiver burden. J Mov Disord 8(1):26\u201332. https:\/\/doi.org\/10.14802\/jmd.14019","journal-title":"J Mov Disord"},{"key":"11546_CR33","doi-asserted-by":"publisher","first-page":"90","DOI":"10.1016\/j.parkreldis.2017.02.020","volume":"38","author":"M Sensi","year":"2017","unstructured":"Sensi M, Cossu G, Mancini F, Pilleri M, Zibetti M, Modugno N et al (2017) Which patients discontinue? Issues on Levodopa\/carbidopa intestinal gel treatment: Italian multicentre survey of 905 patients with long-term follow-up. Parkinsonism Relat Disord 38:90\u201392. https:\/\/doi.org\/10.1016\/j.parkreldis.2017.02.020","journal-title":"Parkinsonism Relat Disord"},{"issue":"2","key":"11546_CR34","doi-asserted-by":"publisher","first-page":"236","DOI":"10.1002\/mds.27579","volume":"34","author":"P Martinez-Martin","year":"2019","unstructured":"Martinez-Martin P, Macaulay D, Jalundhwala YJ, Mu F, Ohashi E, Marshall T et al (2019) The long-term direct and indirect economic burden among Parkinson\u2019s disease caregivers in the United States. Mov Disord 34(2):236\u2013245. https:\/\/doi.org\/10.1002\/mds.27579","journal-title":"Mov Disord"},{"issue":"1","key":"11546_CR35","doi-asserted-by":"publisher","first-page":"41","DOI":"10.4415\/ann_19_01_08","volume":"55","author":"M Petrini","year":"2019","unstructured":"Petrini M, Cirulli F, D\u2019Amore A, Masella R, Venerosi A, Car\u00e8 A (2019) Health issues and informal caregiving in Europe and Italy. Ann Ist Super Sanita 55(1):41\u201350. https:\/\/doi.org\/10.4415\/ann_19_01_08","journal-title":"Ann Ist Super Sanita"},{"issue":"11","key":"11546_CR36","doi-asserted-by":"publisher","first-page":"3063","DOI":"10.1185\/03007990802457040","volume":"24","author":"P Anderson","year":"2008","unstructured":"Anderson P, Benford M, Harris N, Karavali M, Piercy J (2008) Real-world physician and patient behaviour across countries: disease-specific programmes\u2014a means to understand. Curr Med Res Opin 24(11):3063\u20133072. https:\/\/doi.org\/10.1185\/03007990802457040","journal-title":"Curr Med Res Opin"},{"issue":"5","key":"11546_CR37","doi-asserted-by":"publisher","first-page":"373","DOI":"10.1016\/0021-9681(87)90171-8","volume":"40","author":"ME Charlson","year":"1987","unstructured":"Charlson ME, Pompei P, Ales KL, MacKenzie CR (1987) A new method of classifying prognostic comorbidity in longitudinal studies: development and validation. J Chronic Dis 40(5):373\u2013383. https:\/\/doi.org\/10.1016\/0021-9681(87)90171-8","journal-title":"J Chronic Dis"},{"issue":"5","key":"11546_CR38","doi-asserted-by":"publisher","first-page":"427","DOI":"10.1212\/wnl.17.5.427","volume":"17","author":"MM Hoehn","year":"1967","unstructured":"Hoehn MM, Yahr MD (1967) Parkinsonism: onset, progression and mortality. Neurology 17(5):427\u2013442. https:\/\/doi.org\/10.1212\/wnl.17.5.427","journal-title":"Neurology"},{"key":"11546_CR39","unstructured":"Fahn S, Elton RL, UPDRS program members (1987) Unified Parkinsons Disease Rating Scale. In: Fahn S, Marsden CD, Goldstein M, Calne DB (Eds) Recent developments in Parkinsons disease, vol 2. Macmillan Healthcare Information, Florham Park, NJ, pp 153\u2013163"},{"issue":"3","key":"11546_CR40","doi-asserted-by":"publisher","first-page":"189","DOI":"10.1016\/0022-3956(75)90026-6","volume":"12","author":"MF Folstein","year":"1975","unstructured":"Folstein MF, Folstein SE, McHugh PR (1975) \"Mini-mental state\". A practical method for grading the cognitive state of patients for the clinician. J Psychiatr Res 12(3):189\u2013198. https:\/\/doi.org\/10.1016\/0022-3956(75)90026-6","journal-title":"J Psychiatr Res"},{"issue":"2","key":"11546_CR41","doi-asserted-by":"publisher","first-page":"127","DOI":"10.1007\/s40258-017-0310-5","volume":"15","author":"NJ Devlin","year":"2017","unstructured":"Devlin NJ, Brooks R (2017) EQ-5D and the EuroQol group: past, present and future. Appl Health Econ Health Policy 15(2):127\u2013137. https:\/\/doi.org\/10.1007\/s40258-017-0310-5","journal-title":"Appl Health Econ Health Policy"},{"issue":"6","key":"11546_CR42","doi-asserted-by":"publisher","first-page":"649","DOI":"10.1093\/geront\/20.6.649","volume":"20","author":"SH Zarit","year":"1980","unstructured":"Zarit SH, Reever KE, Bach-Peterson J (1980) Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist 20(6):649\u2013655. https:\/\/doi.org\/10.1093\/geront\/20.6.649","journal-title":"Gerontologist"},{"issue":"4","key":"11546_CR43","doi-asserted-by":"publisher","first-page":"494","DOI":"10.1017\/S0714980800012484","volume":"19","author":"R H\u00e9bert","year":"2000","unstructured":"H\u00e9bert R, Bravo G, Pr\u00e9ville M (2000) Reliability, validity and reference values of the Zarit Burden interview for assessing informal caregivers of community-dwelling older persons with dementia. Can J Aging La Rev Can Vieilliss 19(4):494\u2013507. https:\/\/doi.org\/10.1017\/S0714980800012484","journal-title":"Can J Aging La Rev Can Vieilliss"},{"issue":"24","key":"11546_CR44","doi-asserted-by":"publisher","first-page":"9531","DOI":"10.3390\/ijerph17249531","volume":"17","author":"A Tur-Sinai","year":"2020","unstructured":"Tur-Sinai A, Teti A, Rommel A, Hlebec V, Lamura G (2020) How many older informal caregivers are there in Europe? Comparison of estimates of their prevalence from three European surveys. Int J Environ Res Public Health 17(24):9531. https:\/\/doi.org\/10.3390\/ijerph17249531","journal-title":"Int J Environ Res Public Health"},{"issue":"4","key":"11546_CR45","doi-asserted-by":"publisher","first-page":"436","DOI":"10.1177\/1403494817726197","volume":"46","author":"E Verbakel","year":"2018","unstructured":"Verbakel E (2018) How to understand informal caregiving patterns in Europe? The role of formal long-term care provisions and family care norms. Scand J Public Health. 46(4):436\u2013447. https:\/\/doi.org\/10.1177\/1403494817726197","journal-title":"Scand J Public Health."},{"issue":"Suppl 1","key":"11546_CR46","doi-asserted-by":"publisher","first-page":"S24","DOI":"10.21037\/apm.2019.10.01","volume":"9","author":"ZA Macchi","year":"2020","unstructured":"Macchi ZA, Koljack CE, Miyasaki JM, Katz M, Galifianakis N, Prizer LP et al (2020) Patient and caregiver characteristics associated with caregiver burden in Parkinson\u2019s disease: a palliative care approach. Ann Palliat Med 9(Suppl 1):S24\u2013S33","journal-title":"Ann Palliat Med"},{"issue":"5","key":"11546_CR47","doi-asserted-by":"publisher","first-page":"235","DOI":"10.1177\/0891988717720302","volume":"30","author":"PE Mosley","year":"2017","unstructured":"Mosley PE, Moodie R, Dissanayaka N (2017) Caregiver burden in parkinson disease: a critical review of recent literature. J Geriatr Psychiatry Neurol 30(5):235\u2013252. https:\/\/doi.org\/10.1177\/0891988717720302","journal-title":"J Geriatr Psychiatry Neurol"},{"key":"11546_CR48","unstructured":"European Observatory on Health Systems and Policies (2021) Caring for people with chronic conditions. A health system perspective 2008. Available from https:\/\/www.euro.who.int\/__data\/assets\/pdf_file\/0006\/96468\/E91878.pdf. Accessed May 2021"},{"key":"11546_CR49","doi-asserted-by":"publisher","first-page":"17","DOI":"10.1186\/s40035-017-0085-5","volume":"6","author":"AJ Jones","year":"2017","unstructured":"Jones AJ, Kuijer RG, Livingston L, Myall D, Horne K, MacAskill M et al (2017) Caregiver burden is increased in Parkinson\u2019s disease with mild cognitive impairment (PD-MCI). Transl Neurodegener 6:17. https:\/\/doi.org\/10.1186\/s40035-017-0085-5","journal-title":"Transl Neurodegener"},{"key":"11546_CR50","doi-asserted-by":"publisher","DOI":"10.3233\/jpd-212611","author":"E Tolosa","year":"2021","unstructured":"Tolosa E, Ebersbach G, Ferreira JJ, Rascol O, Antonini A, Foltynie T et al (2021) The Parkinson\u2019s Real-World Impact Assessment (PRISM) Study: a European survey of the burden of Parkinson\u2019s disease in patients and their careers. J Parkinsons Dis. https:\/\/doi.org\/10.3233\/jpd-212611","journal-title":"J Parkinsons Dis"},{"issue":"11","key":"11546_CR51","doi-asserted-by":"publisher","first-page":"943","DOI":"10.1016\/j.parkreldis.2013.06.005","volume":"19","author":"FJ Carod-Artal","year":"2013","unstructured":"Carod-Artal FJ, Mesquita HM, Ziomkowski S, Martinez-Martin P (2013) Burden and health-related quality of life among caregivers of Brazilian Parkinson\u2019s disease patients. Parkinsonism Relat Disord 19(11):943\u2013948. https:\/\/doi.org\/10.1016\/j.parkreldis.2013.06.005","journal-title":"Parkinsonism Relat Disord"},{"issue":"7","key":"11546_CR52","doi-asserted-by":"publisher","first-page":"626","DOI":"10.1016\/j.jamda.2016.03.004","volume":"17","author":"D Gr\u00fcn","year":"2016","unstructured":"Gr\u00fcn D, Pieri V, Vaillant M, Diederich NJ (2016) Contributory factors to caregiver burden in Parkinson disease. J Am Med Dir Assoc 17(7):626\u2013632. https:\/\/doi.org\/10.1016\/j.jamda.2016.03.004","journal-title":"J Am Med Dir Assoc"},{"key":"11546_CR53","doi-asserted-by":"publisher","first-page":"561","DOI":"10.3389\/fneur.2019.00561","volume":"10","author":"MMJ Tan","year":"2019","unstructured":"Tan MMJ, Lim EC, Nadkarni NV, Lye WK, Tan EK, Prakash KM (2019) The characteristics of patients associated with high caregiver burden in Parkinson\u2019s disease in Singapore. Front Neurol 10:561. https:\/\/doi.org\/10.3389\/fneur.2019.00561","journal-title":"Front Neurol"},{"issue":"10","key":"11546_CR54","doi-asserted-by":"publisher","first-page":"711","DOI":"10.1016\/j.neurol.2018.01.372","volume":"174","author":"F Torny","year":"2018","unstructured":"Torny F, Videaud H, Chatainier P, Tarrade C, Meissner WG, Couratier P (2018) Factors associated with spousal burden in Parkinson\u2019s disease. Rev Neurol (Paris) 174(10):711\u2013715. https:\/\/doi.org\/10.1016\/j.neurol.2018.01.372","journal-title":"Rev Neurol (Paris)"},{"key":"11546_CR55","doi-asserted-by":"publisher","first-page":"479","DOI":"10.1016\/bs.irn.2017.05.035","volume":"133","author":"JP Hiseman","year":"2017","unstructured":"Hiseman JP, Fackrell R (2017) Caregiver burden and the nonmotor symptoms of Parkinson\u2019s Disease. Int Rev Neurobiol 133:479\u2013497. https:\/\/doi.org\/10.1016\/bs.irn.2017.05.035","journal-title":"Int Rev Neurobiol"},{"issue":"9","key":"11546_CR56","doi-asserted-by":"publisher","first-page":"1211","DOI":"10.1002\/mds.21686","volume":"23","author":"JH Carter","year":"2008","unstructured":"Carter JH, Stewart BJ, Lyons KS, Archbold PG (2008) Do motor and nonmotor symptoms in PD patients predict caregiver strain and depression? Mov Disord 23(9):1211\u20131216. https:\/\/doi.org\/10.1002\/mds.21686","journal-title":"Mov Disord"},{"key":"11546_CR57","doi-asserted-by":"publisher","first-page":"1396572","DOI":"10.1155\/2019\/1396572","volume":"2019","author":"ER Smith","year":"2019","unstructured":"Smith ER, Perrin PB, Tyler CM, Lageman SK, Villase\u00f1or T (2019) Parkinson\u2019s symptoms and caregiver burden and mental health: a cross-cultural mediational model. Behav Neurol 2019:1396572. https:\/\/doi.org\/10.1155\/2019\/1396572","journal-title":"Behav Neurol"},{"key":"11546_CR58","doi-asserted-by":"publisher","first-page":"21","DOI":"10.1016\/j.parkreldis.2020.07.001","volume":"78","author":"M Fabbri","year":"2020","unstructured":"Fabbri M, Caldas AC, Ramos JB, Sanchez-Ferro \u00c1, Antonini A, R\u016f\u017ei\u010dka E et al (2020) Moving towards home-based community-centred integrated care in Parkinson\u2019s disease. Parkinsonism Relat Disord 78:21\u201326. https:\/\/doi.org\/10.1016\/j.parkreldis.2020.07.001","journal-title":"Parkinsonism Relat Disord"},{"issue":"suppl 6","key":"11546_CR59","doi-asserted-by":"publisher","first-page":"2628","DOI":"10.1590\/0034-7167-2017-0008","volume":"71","author":"C Padovani","year":"2018","unstructured":"Padovani C, Lopes MCL, Higahashi IH, Pelloso SM, Paiano M, Christophoro R (2018) Being caregiver of people with Parkinson\u2019s disease: experienced situations. Rev Bras Enferm 71(suppl 6):2628\u20132634. https:\/\/doi.org\/10.1590\/0034-7167-2017-0008","journal-title":"Rev Bras Enferm"},{"issue":"3","key":"11546_CR60","doi-asserted-by":"publisher","first-page":"197","DOI":"10.1016\/j.gerinurse.2015.01.002","volume":"36","author":"SK Lageman","year":"2015","unstructured":"Lageman SK, Mickens MN, Cash TV (2015) Caregiver-identified needs and barriers to care in Parkinson\u2019s disease. Geriatr Nurs 36(3):197\u2013201. https:\/\/doi.org\/10.1016\/j.gerinurse.2015.01.002","journal-title":"Geriatr Nurs"},{"key":"11546_CR61","doi-asserted-by":"publisher","first-page":"38","DOI":"10.1016\/j.prrv.2020.06.009","volume":"35","author":"NR Wijesooriya","year":"2020","unstructured":"Wijesooriya NR, Mishra V, Brand PLP, Rubin BK (2020) COVID-19 and telehealth, education, and research adaptations. Paediatr Respir Rev. 35:38\u201342. https:\/\/doi.org\/10.1016\/j.prrv.2020.06.009","journal-title":"Paediatr Respir Rev."},{"issue":"6","key":"11546_CR62","doi-asserted-by":"publisher","first-page":"957","DOI":"10.1093\/jamia\/ocaa067","volume":"27","author":"J Wosik","year":"2020","unstructured":"Wosik J, Fudim M, Cameron B, Gellad ZF, Cho A, Phinney D et al (2020) Telehealth transformation: COVID-19 and the rise of virtual care. J Am Med Inform Assoc 27(6):957\u2013962. https:\/\/doi.org\/10.1093\/jamia\/ocaa067","journal-title":"J Am Med Inform Assoc"},{"issue":"9s","key":"11546_CR63","doi-asserted-by":"publisher","first-page":"S66","DOI":"10.1016\/j.mayocp.2020.06.052","volume":"95","author":"ZM Temesgen","year":"2020","unstructured":"Temesgen ZM, DeSimone DC, Mahmood M, Libertin CR, VaratharajPalraj BR, Berbari EF (2020) Health care after the COVID-19 pandemic and the influence of telemedicine. Mayo Clin Proc 95(9s):S66\u2013S68. https:\/\/doi.org\/10.1016\/j.mayocp.2020.06.052","journal-title":"Mayo Clin Proc"},{"issue":"Suppl 1","key":"11546_CR64","doi-asserted-by":"publisher","first-page":"S7","DOI":"10.1016\/j.parkreldis.2020.09.024","volume":"80","author":"PA LeWitt","year":"2020","unstructured":"LeWitt PA, Chaudhuri KR (2020) Unmet needs in Parkinson disease: motor and non-motor. Parkinsonism Relat Disord 80(Suppl 1):S7\u2013S12. https:\/\/doi.org\/10.1016\/j.parkreldis.2020.09.024","journal-title":"Parkinsonism Relat Disord"},{"key":"11546_CR65","doi-asserted-by":"publisher","DOI":"10.3233\/jpd-219006","author":"K McFarthing","year":"2021","unstructured":"McFarthing K, Rafaloff G, Baptista M, Wyse RK, Stott SRW (2021) Clinical Trial Highlights\u2014Parkinson\u2019s disease drug therapies in the clinical trial pipeline: 2021 update. J Parkinsons Dis. https:\/\/doi.org\/10.3233\/jpd-219006","journal-title":"J Parkinsons Dis"},{"issue":"4","key":"11546_CR66","doi-asserted-by":"publisher","first-page":"204","DOI":"10.1038\/s41582-019-0155-7","volume":"15","author":"A Elkouzi","year":"2019","unstructured":"Elkouzi A, Vedam-Mai V, Eisinger RS, Okun MS (2019) Emerging therapies in Parkinson disease\u2014repurposed drugs and new approaches. Nat Rev Neurol 15(4):204\u2013223. https:\/\/doi.org\/10.1038\/s41582-019-0155-7","journal-title":"Nat Rev Neurol"},{"issue":"9","key":"11546_CR67","doi-asserted-by":"publisher","first-page":"1261","DOI":"10.1111\/j.1468-1331.2011.03630.x","volume":"19","author":"D Santos-Garc\u00eda","year":"2012","unstructured":"Santos-Garc\u00eda D, A\u00f1\u00f3n MJ, Fuster-Sanjurjo L, de la Fuente-Fern\u00e1ndez R (2012) Duodenal levodopa\/carbidopa infusion therapy in patients with advanced Parkinson\u2019s disease leads to improvement in caregivers\u2019 stress and burden. Eur J Neurol 19(9):1261\u20131265. https:\/\/doi.org\/10.1111\/j.1468-1331.2011.03630.x","journal-title":"Eur J Neurol"},{"issue":"9","key":"11546_CR68","doi-asserted-by":"publisher","first-page":"2005","DOI":"10.1007\/s00415-018-8951-3","volume":"265","author":"R Ciurleo","year":"2018","unstructured":"Ciurleo R, Corallo F, Bonanno L, Lo Buono V, Di Lorenzo G, Versaci R et al (2018) Assessment of Duodopa(\u00ae) effects on quality of life of patients with advanced Parkinson\u2019s disease and their caregivers. J Neurol 265(9):2005\u20132014. https:\/\/doi.org\/10.1007\/s00415-018-8951-3","journal-title":"J Neurol"},{"key":"11546_CR69","doi-asserted-by":"publisher","first-page":"1061","DOI":"10.1002\/mdc3.13239","volume":"8","author":"DG Standaert","year":"2021","unstructured":"Standaert DG, Aldred J, Anca-Herschkovitsch M, Bourgeois P, Cubo E, Davis TL et al (2021) DUOGLOBE: one-year outcomes in a real-world study of levodopa carbidopa intestinal gel for Parkinson\u2019s disease. Mov Disord Clin Pract 8:1061\u20131074. https:\/\/doi.org\/10.1002\/mdc3.13239","journal-title":"Mov Disord Clin Pract"},{"key":"11546_CR70","doi-asserted-by":"publisher","first-page":"20","DOI":"10.1016\/j.parkreldis.2020.09.038","volume":"81","author":"MM van Hienen","year":"2020","unstructured":"van Hienen MM, Contarino MF, Middelkoop HAM, van Hilten JJ, Geraedts VJ (2020) Effect of deep brain stimulation on caregivers of patients with Parkinson\u2019s disease: a systematic review. Parkinsonism Relat Disord. 81:20\u201327. https:\/\/doi.org\/10.1016\/j.parkreldis.2020.09.038","journal-title":"Parkinsonism Relat Disord."}],"container-title":["Journal of Neurology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s00415-022-11546-5.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1007\/s00415-022-11546-5\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s00415-022-11546-5.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,3,27]],"date-time":"2023-03-27T01:53:03Z","timestamp":1679881983000},"score":1,"resource":{"primary":{"URL":"https:\/\/link.springer.com\/10.1007\/s00415-022-11546-5"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,1,12]]},"references-count":70,"journal-issue":{"issue":"4","published-print":{"date-parts":[[2023,4]]}},"alternative-id":["11546"],"URL":"https:\/\/doi.org\/10.1007\/s00415-022-11546-5","relation":{},"ISSN":["0340-5354","1432-1459"],"issn-type":[{"value":"0340-5354","type":"print"},{"value":"1432-1459","type":"electronic"}],"subject":[],"published":{"date-parts":[[2023,1,12]]},"assertion":[{"value":"18 May 2022","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"25 November 2022","order":2,"name":"revised","label":"Revised","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"22 December 2022","order":3,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"12 January 2023","order":4,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"PMM has received honoraria from National School of Public Health (ISCIII), and Editorial Viguera for lecturing in courses; from Bial for advice in a clinical-epidemiological study; and from the International Parkinson and Movement Disorder Society (IPMDS) for management of the Program on Rating Scales. He received grant support from International Parkinson and Movement Disorder Society, for development and validation of the MDS-NMS. MS received speakers\u2019 honoraria and\/or consultation fees from AbbVie, Biogen, Boston Scientific, Ever Pharma, Krka, Medtronic and Sandoz, he received grant support from the IBM, from Slovak grant agencies under contracts APVV-18-0547 and VEGA 1\/0596\/19 and the Operational Program Integrated Infrastructure, funded by the ERDF under No. ITMS2014\u2009+\u2009:313011V455. TH has received honorary for speaker related activities for Lundbeck, Lobsor, Zambon, Britannia, EVER Pharma, and AbbVie. AA has received compensation for consultancy and speaker related activities from UCB, Boehringer\u2013Ingelheim, Britannia, AbbVie, Kyowa Kirin, Zambon, Bial, Neuroderm, Theravance Biopharma, Roche; he receives research support from Chiesi Pharmaceuticals, Lundbeck, Horizon 2020\u2014Grant 825785, Horizon2020 Grant 101016902, Ministry of Education University and Research (MIUR) Grant ARS01_01081, Cariparo Foundation. He serves as consultant for Boehringer\u2013Ingelheim for legal cases on pathological gambling. AA, PLK, ABP, and JCP are employees of AbbVie and may own stocks\/shares in the company. VSC is a former employee of AbbVie Inc., currently employed by EMD Serono, Inc. and may hold AbbVie stock. JP is an employee of Adelphi Real World, a consulting company that was hired by AbbVie to perform analyses on the Adelphi Disease Specific Program database. SL and JD declare that they have no relevant or material financial interests that relate to the research described in this paper.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Conflict of interest"}},{"value":"Respondents provided informed consent for use of their data; all data were aggregated and de-identified before receipt. Surveys were conducted in full accordance with the US Health Insurance Portability and Accountability Act of 1996. The study protocol was approved by the Western Institutional Review Board (Puyallup, Washington, US) on 3 July 2019. All data were collected according to the requirements of ethics committee approval, including obtaining participants\u2019 informed consent.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval and consent to participate"}},{"value":"Consent to publish was provided by all authors.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}}]}}