Integrated and patient-centred management of Parkinson's disease: a network model for reshaping chronic neurological care

Bastiaan R Bloem, Emily J Henderson, E Ray Dorsey, Michael S Okun, Njideka Okubadejo, Piu Chan, John Andrejack, Sirwan K L Darweesh, Marten Munneke, Bastiaan R Bloem, Emily J Henderson, E Ray Dorsey, Michael S Okun, Njideka Okubadejo, Piu Chan, John Andrejack, Sirwan K L Darweesh, Marten Munneke

Abstract

Chronic neurological diseases are the leading cause of disability globally. Yet, our health-care systems are not designed to meet the needs of many patients with chronic neurological conditions. Care is fragmented with poor interdisciplinary collaboration and lack of timely access to services and therapies. Furthermore, care is typically reactive, and complex problems are managed inadequately because of a scarcity of disease-specific expertise and insufficient use of non-pharmacological interventions. Treatment plans tend to focus on the disease rather than the individual living with it, and patients are often not involved in clinical decision making. By use of Parkinson's disease as a model condition, we show an integrated care concept with a patient-centred perspective that includes evidence-based solutions to improve health-care delivery for people with chronic neurological conditions. We anticipate that this integrated care model will improve the quality of life for patients, create a positive working environment for health-care professionals, and be affordable.

Copyright © 2020 Elsevier Ltd. All rights reserved.

Figures

Figure 1
Figure 1
Challenges and strategies for achieving the Quadruple Aim The central goal of health care is to reach the Quadruple Aim (central circle). Six important challenges must be addressed in order to reach this goal (second circle). We also identify four main strategies that can help to address this series of challenges (outer circle). The interplay between these four strategies and six challenges in reaching the Quadruple Aim is complex and multifaceted. For example, patient empowerment helps to achieve a more personalised care delivery, facilitates care delivery close to home, and makes care timelier with an improved patient experience, improved health outcomes, and reduced costs as important results. Similarly, professional empowerment ascertains that patients receive appropriate care, but well-trained clinicians are probably also better able to deploy precision medicine approaches. Each of the four strategies is facilitated by modern technological solutions (appendix p 2).
Figure 2
Figure 2
The home-hub-and-spoke model (A) Illustration of how a centre of expertise (the hub; services shown in light blue) can be coupled to a single spoke (services shown in red), consisting of a neighbouring community hospital (where regional care is delivered by specialist Parkinson's disease doctors), a Parkinson's disease nurse (acting as a personal care manager), and regional community-based professionals. (B) One centre of expertise can support many surrounding community hospitals (multiple spokes). The Parkinson's disease nurses working in the various spokes could collectively form a virtual service desk to provide easy access for patients with Parkinson's disease. The multicoloured circles represent individual patients, and the variations in colours are illustrative for their unique individual presentation and personal needs.

References

    1. GBD 2016 Neurology Colloborators Global, regional, and national burden of neurological disorders, 1990–2016: a systematic analysis for the Global Burden of Disease Study 2016. Lancet Neurol. 2019;18:459–480.
    1. Berwick DM, Nolan TW, Whittington J. The triple aim: care, health, and cost. Health Aff. 2008;27:759–769.
    1. Bodenheimer T, Sinsky C. From triple to quadruple aim: care of the patient requires care of the provider. Annals Fam Med. 2014;12:573–576.
    1. Vlaanderen FP, Rompen L, Munneke M, Stoffer M, Bloem BR, Faber MJ. The voice of the Parkinson customer. J Parkinsons Dis. 2019;9:197–201.
    1. Levin KH, Shanafelt TD, Keran CM, et al. Burnout, career satisfaction, and well-being among US neurology residents and fellows in 2016. Neurology. 2017;89:492–501.
    1. WHO A69/39: framework on integrated, people-centred health services. April 15, 2016.
    1. Dorsey ER, Bloem BR. The Parkinson pandemic—a call to action. JAMA Neurol. 2018;75:9–10.
    1. MacNeil Vroomen J, Bosmans JE, Eekhout I, et al. The cost-effectiveness of two forms of case management compared to a control group for persons with dementia and their informal caregivers from a societal perspective. PLoS One. 2016;11
    1. Richters A, Nieuwboer MS, Olde Rikkert MGM, Melis RJF, Perry M, van der Marck MA. Longitudinal multiple case study on effectiveness of network-based dementia care towards more integration, quality of care, and collaboration in primary care. PLoS One. 2018;13
    1. Silva de Lima AL, Smits T, Darweesh SK, et al. Home-based monitoring of falls using wearable sensors in Parkinson's disease. Mov Disord. 2020;35:109–115.
    1. Silva de Lima AL, Hahn T, Evers LJW, et al. Feasibility of large-scale deployment of multiple wearable sensors in Parkinson's disease. PLoS One. 2017;12
    1. Matarazzo M, Arroyo-Gallego T, Montero P, et al. Remote monitoring of treatment response in Parkinson's disease: the habit of typing on a computer. Mov Disord. 2019;34:1488–1495.
    1. Espay AJ, Hausdorff JM, Sánchez-Ferro A, et al. A roadmap for implementation of patient-centered digital outcome measures in Parkinson's disease obtained using mobile health technologies. Mov Disord. 2019;34:657–663.
    1. Lipsmeier F, Taylor KI, Kilchenmann T, et al. Evaluation of smartphone-based testing to generate exploratory outcome measures in a phase 1 Parkinson's disease clinical trial. Mov Disord. 2018;33:1287–1297.
    1. Zhan A, Mohan S, Tarolli C, et al. Using smartphones and machine learning to quantify Parkinson disease severity: the mobile Parkinson disease score. JAMA Neurol. 2018;75:876–880.
    1. Klucken J, Krüger R, Schmidt P, Bloem BR. Management of Parkinson's disease 20 years from now: towards digital health pathways. J Parkinsons Dis. 2018;8:S85–S94.
    1. Visser LM, Bleijenbergh IL, Benschop YW, Van Riel AC, Bloem BR. Do online communities change power processes in healthcare? Using case studies to examine the use of online health communities by patients with Parkinson's disease. BMJ Open. 2016;6
    1. Beck CA, Beran DB, Biglan KM, et al. National randomised controlled trial of virtual house calls for Parkinson disease. Neurology. 2017;89:1152–1161.
    1. Fleisher J, Barbosa W, Sweeney MM, et al. Interdisciplinary home visits for individuals with advanced Parkinson's disease and related disorders. J Am Geriatr Soc. 2018;66:1226–1232.
    1. Eggers C, Dano R, Schill J, Fink GR, Hellmich M, Timmermann L. Patient-centered integrated healthcare improves quality of life in Parkinson's disease patients: a randomised controlled trial. J Neurol. 2018;265:764–773.
    1. Dorsey ER, Glidden AM, Holloway MR, Birbeck GL, Schwamm LH. Teleneurology and mobile technologies: the future of neurological care. Nat Rev Neurol. 2018;14:285–297.
    1. Huber M, Knottnerus JA, Green L, et al. How should we define health? BMJ. 2011;343
    1. Hellqvist C, Dizdar N, Hagell P, Berterö C, Sund-Levander M. Improving self-management for persons with Parkinson's disease through education focusing on management of daily life: patients' and relatives' experience of the Swedish National Parkinson School. J Clin Nurs. 2018;27:3719–3728.
    1. Barichella M, Cereda E, Pinelli G, et al. Muscle-targeted nutritional support for rehabilitation in patients with parkinsonian syndrome. Neurology. 2019;93:e485–e496.
    1. Mirelman A, Rochester L, Maidan I, et al. Addition of a non-immersive virtual reality component to treadmill training to reduce fall risk in older adults (V-TIME): a randomised controlled trial. Lancet. 2016;388:1170–1182.
    1. Schenkman M, Moore CG, Kohrt WM, et al. Effect of high-intensity treadmill exercise on motor symptoms in patients with de novo Parkinson disease: a phase 2 randomised clinical trial. JAMA Neurol. 2018;75:219–226.
    1. van der Kolk NM, de Vries NM, Kessels RPC, et al. Effectiveness of home-based and remotely supervised aerobic exercise in Parkinson's disease: a double-blind, randomised controlled trial. Lancet Neurol. 2019;18:998–1008.
    1. Koerts J, König M, Tucha L, Tucha O. Working capacity of patients with Parkinson's disease—a systematic review. Parkinsonism Relat Disord. 2016;27:9–24.
    1. Nijhuis FAP, Elwyn G, Bloem BR, Post B, Faber MJ. Improving shared decision-making in advanced Parkinson's disease: protocol of a mixed methods feasibility study. Pilot Feasibility Stud. 2018;4:94.
    1. Van der Marck M. GOUDMantel-Parkinson. 2017.
    1. Hariz GM, Lindberg M, Hariz MI, Bergenheim AT. Gender differences in disability and health-related quality of life in patients with Parkinson's disease treated with stereotactic surgery. Acta Neurol Scand. 2003;108:28–37.
    1. Haaxma C, Bloem B, Borm G, et al. Gender differences in Parkinson's disease. J Neurol Neurosurg Psychiatry. 2007;78:819–824.
    1. Georgiev D, Hamberg K, Hariz M, Forsgren L, Hariz GM. Gender differences in Parkinson's disease: a clinical perspective. Acta Neurol Scand. 2017;136:570–584.
    1. Saadi A, Himmelstein DU, Woolhandler S, Mejia NI. Racial disparities in neurologic health care access and utilisation in the United States. Neurology. 2017;88:2268–2275.
    1. Willis AW, Schootman M, Evanoff BA, Perlmutter JS, Racette BA. Neurologist care in Parkinson disease: a utilisation, outcomes, and survival study. Neurology. 2011;77:851–857.
    1. Fullard ME, Thibault DP, Hill A, et al. Utilisation of rehabilitation therapy services in Parkinson disease in the United States. Neurology. 2017;89:1162–1169.
    1. Mantri S, Fullard ME, Beck J, Willis AW. State-level prevalence, health service use, and spending vary widely among Medicare beneficiaries with Parkinson disease. NPJ Parkinsons Dis. 2019;5:1.
    1. Okubadejo NU, Ojo OO, Wahab KW, et al. A nationwide survey of Parkinson's disease medicines availability and affordability in Nigeria. Mov Disord Clin Pract. 2019;6:27–33.
    1. Tran Ngoc C, Bigirimana N, Muneene D, et al. Conclusions of the digital health hub of the Transform Africa Summit (2018): strong government leadership and public-private-partnerships are key prerequisites for sustainable scale up of digital health in Africa. BMC Proc. 2018;12:17.
    1. Beam AL, Kohane IS. Big data and machine learning in health care. JAMA. 2018;319:1317–1318.
    1. He J, Baxter SL, Xu J, Xu J, Zhou X, Zhang K. The practical implementation of artificial intelligence technologies in medicine. Nat Med. 2019;25:30–36.
    1. Okun MS. Management of Parkinson disease in 2017: personalised approaches for patient-specific needs. JAMA. 2017;318:791–792.
    1. Munneke M, Nijkrake MJ, Keus SH, et al. Efficacy of community-based physiotherapy networks for patients with Parkinson's disease: a cluster-randomised trial. Lancet Neurol. 2010;9:46–54.
    1. Bloem BR, Munneke M. Revolutionising management of chronic disease: the ParkinsonNet approach. BMJ. 2014;348
    1. Ypinga JHL, de Vries NM, Boonen L, et al. Effectiveness and costs of specialised physiotherapy given via ParkinsonNet: a retrospective analysis of medical claims data. Lancet Neurol. 2018;17:153–161.
    1. Cohen EV, Hagestuen R, Gonzalez-Ramos G, et al. Interprofessional education increases knowledge, promotes team building, and changes practice in the care of Parkinson's disease. Parkinsonism Relat Disord. 2016;22:21–27.
    1. Sturkenboom IH, Graff MJ, Hendriks JC, et al. Efficacy of occupational therapy for patients with Parkinson's disease: a randomised controlled trial. Lancet Neurol. 2014;13:557–566.
    1. Ramig L, Halpern A, Spielman J, Fox C, Freeman K. Speech treatment in Parkinson's disease: randomized controlled trial (RCT) Mov Disord. 2018;33:1777–1791.
    1. Radder DLM, de Vries NM, Riksen NP, et al. Multidisciplinary care for people with Parkinson's disease: the new kids on the block! Expert Rev Neurother. 2019;19:145–157.
    1. Boersma I, Miyasaki J, Kutner J, Kluger B. Palliative care and neurology: time for a paradigm shift. Neurology. 2014;83:561–567.
    1. Bouça-Machado R, Lennaerts-Kats H, Bloem BR, Ferreira J. Why palliative care applies to Parkinson's disease. Mov Disord. 2018;33:750–753.
    1. Rogers G, Davies D, Pink J, Cooper P. Parkinson's disease: summary of updated NICE guidance. BMJ. 2017;358
    1. Plouvier AOA, Olde Hartman TC, Verhulst CEM, Bloem BR, van Weel C, Lagro-Janssen ALM. Parkinson's disease: patient and general practitioner perspectives on the role of primary care. Fam Pract. 2017;34:227–233.
    1. Meyer BC, Raman R, Hemmen T, et al. Efficacy of site-independent telemedicine in the STRokE DOC trial: a randomised, blinded, prospective study. Lancet Neurol. 2008;7:787–795.
    1. Draper B, Low LF, Brodaty H. Integrated care for adults with dementia and other cognitive disorders. Int Rev Psychiatry. 2018;30:272–291.
    1. Damery S, Flanagan S, Combes G. Does integrated care reduce hospital activity for patients with chronic diseases? An umbrella review of systematic reviews. BMJ Open. 2016;6
    1. Dorsey ER, Vlaanderen FP, Engelen LJ, et al. Moving Parkinson care to the home. Mov Disord. 2016;31:1258–1262.
    1. Home care: the next frontier in healthcare innovation. Feb 1, 2019.
    1. van der Eijk M, Faber MJ, Post B, et al. Capturing patients' experiences to change Parkinson's disease care delivery: a multicenter study. J Neurol. 2015;262:2528–2538.
    1. Damman OC, Verbiest MEA, Vonk SI, et al. Using PROMs during routine medical consultations: the perspectives of people with Parkinson's disease and their health professionals. Health Expect. 2019;22:939–951.
    1. Domecq JP, Prutsky G, Elraiyah T, et al. Patient engagement in research: a systematic review. BMC Health Serv Res. 2014;14:89.
    1. Bloem BR, Stocchi F. Move for change part III: a European survey evaluating the impact of the EPDA Charter for People with Parkinson's Disease. Eur J Neurol. 2015;22:133–141.
    1. Martinez-Martin P, Arroyo S, Rojo-Abuin JM, et al. Burden, perceived health status, and mood among caregivers of Parkinson's disease patients. Mov Disord. 2008;23:1673–1680.
    1. Nielsen M, Hansen J, Ritz B, et al. Cause-specific mortality among spouses of Parkinson disease patients. Epidemiology. 2014;25:225–232.
    1. Hasson F, Kernohan WG, McLaughlin M, et al. An exploration into the palliative and end-of-life experiences of carers of people with Parkinson's disease. Pallia Med. 2010;24:731–736.
    1. Gerlach OHH, Winogrodzka A, Weber WEJ. Clinical problems in the hospitalised Parkinson's disease patient: systematic review. Mov Disord. 2011;26:197–208.
    1. Hassan A, Wu SS, Schmidt P, et al. High rates and the risk factors for emergency room visits and hospitalisation in Parkinson's disease. Parkinsonism Relat Disord. 2013;19:949–954.
    1. Farag I, Sherrington C, Hayes A, et al. Economic evaluation of a falls prevention exercise program among people With Parkinson's disease. Mov Disord. 2016;31:53–61.
    1. van der Marck MA, Klok MP, Okun MS, et al. Consensus-based clinical practice recommendations for the examination and management of falls in patients with Parkinson's disease. Parkinsonism Relat Disord. 2014;20:360–369.
    1. Low V, Ben-Shlomo Y, Coward E, Fletcher S, Walker R, Clarke CE. Measuring the burden and mortality of hospitalisation in Parkinson's disease: a cross-sectional analysis of the English Hospital Episodes statistics database 2009–2013. Parkinsonism Relat Disord. 2015;21:449–454.
    1. Chou KL, Zamudio J, Schmidt P, et al. Hospitalisation in Parkinson disease: a survey of National Parkinson Foundation Centers. Parkinsonism Related Disord. 2011;17:440–445.
    1. Oguh O, Videnovic A. Inpatient management of Parkinson disease: current challenges and future directions. Neurohospitalist. 2012;2:28–35.
    1. McMurdo ME, Roberts H, Parker S, et al. Improving recruitment of older people to research through good practice. Age Ageing. 2011;40:659–665.
    1. Tosserams A, Araujo R, Pringsheim T, et al. Underrepresentation of women in Parkinson's disease trials. Mov Disord. 2018;33:1825–1826.
    1. Valmarska A, Miljkovic D, Konitsiotis S, Gatsios D, Lavrac N, Robnik-Sikonja M. Symptoms and medications change patterns for Parkinson's disease patients stratification. Artif Intell Med. 2018;91:82–95.
    1. Evers LJW, Krijthe JH, Meinders MJ, Bloem BR, Heskes TM. Measuring Parkinson's disease over time: the real-world within-subject reliability of the MDS-UPDRS. Mov Disord. 2019;34:1480–1487.
    1. Kelly MJ, Lawton MA, Baig F, et al. Predictors of motor complications in early Parkinson's disease: a prospective cohort study. Mov Disord. 2019;34:1174–1183.
    1. Schrag A, Siddiqui UF, Anastasiou Z, Weintraub D, Schott JM. Clinical variables and biomarkers in prediction of cognitive impairment in patients with newly diagnosed Parkinson's disease: a cohort study. Lancet Neurol. 2017;16:66–75.
    1. Latourelle JC, Beste MT, Hadzi TC, et al. Large-scale identification of clinical and genetic predictors of motor progression in patients with newly diagnosed Parkinson's disease: a longitudinal cohort study and validation. Lancet Neurol. 2017;16:908–916.
    1. Liu G, Locascio JJ, Corvol JC, et al. Prediction of cognition in Parkinson's disease with a clinical-genetic score: a longitudinal analysis of nine cohorts. Lancet Neurol. 2017;16:620–629.
    1. van den Heuvel L, Dorsey RR, Prainsack B, et al. Quadruple decision making for Parkinson's disease patients: combining expert opinion, patient preferences, scientific evidence, and big data approaches to reach precision medicine. J Parkinsons Dis. 2019;10:223–231.
    1. Munneke M, Nijkrake MJ, Keus SH, et al. Efficacy of community-based physiotherapy networks for patients with Parkinson's disease: a cluster-randomised trial. Lancet Neurol. 2010;9:46–54.
    1. Kimmel AD, Martin EG, Galadima H, et al. Clinical outcomes of HIV care delivery models in the US: a systematic review. AIDS Care. 2016;28:1215–1222.
    1. Lange JF, Meyer VM, Voropai DA, et al. The role of surgical expertise with regard to chronic postoperative inguinal pain (CPIP) after Lichtenstein correction of inguinal hernia: a systematic review. Hernia. 2016;20:349–356.
    1. Weerkamp NJ, Zuidema SU, Tissingh G, et al. Motor profile and drug treatment of nursing home residents with Parkinson's disease. J Am Geriatr Soc. 2012;60:2277–2282.
    1. Saleem TZ, Higginson IJ, Chaudhuri KR, Martin A, Burman R, Leigh PN. Symptom prevalence, severity and palliative care needs assessment using the Palliative Outcome Scale: a cross-sectional study of patients with Parkinson's disease and related neurological conditions. Palliat Med. 2013;27:722–731.
    1. Kluger BM, Miyasaki J, Katz M, et al. Integrated outpatient palliative care for persons affected by Parkinson's disease and related disorders: a pragmatic randomised comparative effectiveness trial. JAMA Neurol. 2020 doi: 10.1001/jamaneurol.2019.4992. published online Feb 10.
    1. Bloem BR, Darweesh SKL, Meinders MJ. Palliative programs for persons with parkinsonism—the next frontier. JAMA Neurol. 2020 doi: 10.1001/jamaneurol.2019.4697. published online Feb 10.
    1. Canoy M, Faber MJ, Munneke M, Oortwijn W, Nijkrake MJ, Bloem BR. Hidden treasures and secret pitfalls: application of the capability approach to ParkinsonNet. J Parkinson's Dis. 2015;5:575–580.
    1. GBD 2016 Parkinson's Disease Colloborators Global, regional, and national burden of Parkinson's disease, 1990–2016: a systematic analysis for the Global Burden of Disease Study 2016. Lancet Neurol. 2018;17:939–953.
    1. Jha AK. Population health management: saving lives and saving money? JAMA. 2019;322:390–391.
    1. Rizzo G, Copetti M, Arcuti S, Martino D, Fontana A, Logroscino G. Accuracy of clinical diagnosis of Parkinson disease: a systematic review and meta-analysis. Neurology. 2016;86:566–576.
    1. Bloem BR, Rompen L, Vries NM, Klink A, Munneke M, Jeurissen P. ParkinsonNet: a low-cost health care innovation with a systems approach from the Netherlands. Health Aff. 2017;36:1987–1996.
    1. Rompen L, de Vries NM, Munneke M, et al. Introduction of network-based healthcare at Kaiser Permanente. J Parkinsons Dis. 2020;10:207–212.
    1. Thornicroft G, Ahuja S, Barber S, et al. Integrated care for people with long-term mental and physical health conditions in low-income and middle-income countries. Lancet Psychiatry. 2019;6:174–186.
    1. Cubo E, Doumbe J, Mapoure Njankouo Y, et al. The burden of movement disorders in Cameroon: a rural and urban-based inpatient/outpatient study. Mov Disord Clin Pract. 2017;4:568–573.
    1. Lim SY, Tan AH, Ahmad-Annuar A, et al. Parkinson's disease in the western Pacific region. Lancet Neurol. 2019;18:865–879.
    1. Bloem BR, Ypinga JHL, Willis A, et al. Using medical claims analyses to understand interventions for Parkinson patients. J Parkinsons Dis. 2018;8:45–58.
    1. Poushter J, Bishop C, Chwe H. Social media use continues to rise in developing countries but plateaus across developed ones. June 19, 2018.
    1. Isaacson SH, Boroojerdi B, Waln O, et al. Effect of using a wearable device on clinical decision-making and motor symptoms in patients with Parkinson's disease starting transdermal rotigotine patch: a pilot study. Parkinsonism Relat Disord. 2019;64:132–137.
    1. Farzanehfar P, Woodrow H, Braybrook M, et al. Objective measurement in routine care of people with Parkinson's disease improves outcomes. NPJ Parkinsons Dis. 2018;4:10.
    1. Ginis P, Nieuwboer A, Dorfman M, et al. Feasibility and effects of home-based smartphone-delivered automated feedback training for gait in people with Parkinson's disease: a pilot randomised controlled trial. Parkinsonism Relat Disord. 2016;22:28–34.

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