Evidence map›Paper›PMID 42057103›Full record

ArticleBMC health services research2026

Barriers and facilitators to advance care planning implementation for patients with neurodegenerative diseases among Indian physicians: a mixed-methods analysis.

Pavit Singh, K N Parvathy, Deepa Dash, Nishkarsh Gupta, Usha Ramanathan, Teneille E Gofton, Claudia Chou, Soaham Desai, Pramod Kumar Pal, Roopkumar Gursahani and 17 more

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Article in BMC health services research, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

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1 · What the graph read from it

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2 · The registry

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4 · The record

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5 · Who and what money

Authors and funding

27 authors.

Pavit SinghAll India Institute of Medical Sciences, New Delhi, India.
K N ParvathyAll India Institute of Medical Sciences, New Delhi, India.
Deepa DashDepartment of Clinical Neurological Sciences, University of Western Ontario, London, Canada.
Nishkarsh GuptaDepartment of Onco-anaesthesia and Palliative Medicine, All India Institute of Medical Sciences, New Delhi, India.
Usha RamanathanDivision of Neurology, Department of Medicine, University of Toronto, Toronto, Canada.
Teneille E GoftonDepartment of Clinical Neurological Sciences, University of Western Ontario, London, Canada.
Claudia ChouDivision of Community Internal Medicine, Geriatrics, and Palliative Care, Mayo Clinic, Rochester, MN, USA.
Soaham DesaiZydus Hospital, Anand, Gujarat, India.
Pramod Kumar PalDepartment of Neurology, National Institute of Mental Health and Neurosciences (NIMHANS), Bengaluru, India.
Roopkumar GursahaniDepartment of Neurology, PD Hinduja Hospitals, Mumbai, India.
Baikuntha PanigrahiDepartment of Neurology, All India Institute of Medical Sciences, Deoghar, India.
Banusri VelpandianLaw, Research and Networking, NITI Aayog, New Delhi, India.
Prasun ChatterjeeDepartment of Geriatric Medicine, All India Institute of Medical Sciences, New Delhi, India.
Avinash ChakrawartyDepartment of Geriatric Medicine, All India Institute of Medical Sciences, New Delhi, India.
Anup SinghDepartment of Geriatric Medicine, Institute of Medical Sciences, Banaras Hindu University, Varanasi, India.
Suman KushwahaDepartment of Neurology, Institute of Human Behaviour and Allied Sciences, New Delhi, India.
K P DivyaDepartment of Neurology, Sree Chitra Tirunal Institute of Medical Sciences and Technology, Thiruvananthapuram, India.
Lakshmi Narasimhan RanganathanDepartment of Neurology, Madras Medical College, Chennai, India.
Manjari TripathiDepartment of Neurology, All India Institute of Medical Sciences (AIIMS), New Delhi, India.
Deepti VibhaDepartment of Neurology, All India Institute of Medical Sciences (AIIMS), New Delhi, India.
Rajesh Kumar SinghDepartment of Neurology, All India Institute of Medical Sciences (AIIMS), New Delhi, India.
Animesh DasDepartment of Neurology, All India Institute of Medical Sciences (AIIMS), New Delhi, India.
Jasmine PariharDepartment of Neurology, All India Institute of Medical Sciences (AIIMS), New Delhi, India.
Sumit MalhotraCentre for Community Medicine, All India Institute of Medical Sciences, New Delhi, India.
Ashish Dutt UpadhyayClinical Research Unit (CRU), All India Institute of Medical Sciences, New Delhi, India.
Abhishek PathakDepartment of Neurology, Institute of Medical Sciences, Banaras Hindu University, Banaras, India.
Arunmozhimaran ElavarasiDepartment of Neurology, All India Institute of Medical Sciences (AIIMS), New Delhi, India. arun_ela@yahoo.com.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundAdvance care planning (ACP) is a process that enables individuals to define and communicate their goals and preferences for future medical care, especially in chronic, progressive illnesses such as Parkinson's disease (PD) and other neurodegenerative disorders. Despite its recognized benefits in improving patient autonomy and end-of-life care outcomes, ACP remains underutilized in India. This study aimed to assess the attitudes and practices of Indian neurologists and geriatricians regarding ACP, identify perceived barriers, and suggest strategies to improve uptake.

methodsA mixed-methods approach was employed in this study. In the first phase, a structured online survey was distributed to physicians across India who cared for patients with PD and neurodegenerative disorders. The survey collected demographic information and ACP-related practices, attitudes, and perceived barriers. In the second phase, in-depth qualitative interviews were conducted with a purposively sampled subset of respondents, and inductive thematic analysis was performed to gain deeper insights.

resultsA total of 140 physicians participated in this survey. Although 93.6% acknowledged the necessity of ACP, only 25% felt they had sufficient time, and 20% felt they had adequate resources for meaningful discussions. Lack of legal clarity (52.1%), training (16.4%), and institutional support (65.7%) were commonly cited as barriers. Qualitative interviews with 15 respondents revealed additional challenges, such as concerns about provoking hopelessness and denial from patients and families. The interviews also revealed that physicians confused ACP with advanced treatment strategies or treatment of advanced disease. Nevertheless, some physicians shared positive experiences, noting that early personalized discussions improved trust and communication, which could facilitate uptake of ACP.

conclusionsWe identified several systemic, professional, and physician-perceived sociocultural barriers that hinder ACP implementation. To bridge this gap, legal reforms, structured ACP training, and public awareness initiatives are necessary. Tailored culturally sensitive models involving multidisciplinary teams may improve ACP adoption within the Indian context. Future research could explore whether alternative terminology, such as 'future care planning', may improve clarity and acceptance in this context and avoid confusion with advanced therapies or treatment of advanced disease.

Indexed as

Advance Care PlanningAttitude of Health PersonnelNeurodegenerative DiseasesPhysiciansAdultFemaleHumansIndiaInterviews as TopicMaleMiddle AgedParkinson DiseaseQualitative ResearchSurveys and QuestionnairesAdvance care planning (ACP)End-of-life careHealth equityParkinson’s disease

Identifiers

PMID42057103
PMCPMC13234964

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LicenceCC BY-NC-ND
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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.