Profile, benefits, and barriers in disability certificate for Parkinson’s disease (PD): Insights from a tertiary care center

Dear Editor, Parkinson’s disease (PD), the second most prevalent neurodegenerative disorder, presents with a combination of motor and non-motor symptoms. Studies indicate that the prevalence rate is estimated at 1 to 2 cases per 1000 individuals, with a prevalence of approximately 1% in those aged 60 years or older.[1] It is characteristically chronic, and the progression of symptoms leads to multiple disabilities as the disease advances.[2] Disability may increase due to the later onset of illness and motor and non-motor symptoms. A disability certificate is mandatory for accessing benefits such as pension and insurance enrolment.[3,4] A recent study found that chronic neurological conditions, including all neurological disabilities, formed only 5.1% of the overall disability certification in a tertiary care center.[5] This study aims to analyze the clinical and sociodemographic characteristics of PD patients with disability certificates from a tertiary care center in south India. Most cases were referred by the neurologist from the follow-up OPD to the Psychiatric Social Worker, who facilitates and provides information about the disability certificate and makes referrals to stakeholders. The clinical, sociodemographic, and Unified Parkinson’s Disease Rating Scale (UPDRS) scores were the major variables, and a semi-structured interview guide was used to understand certain aspects of disability certificates, such as the barriers to receiving disability certificates and available benefits. From the period of January 2023 to January 2024, a total of 22 patients with a diagnosis of PD were referred to obtain a disability certificate. After assessments, 16 patients received disability certificates, and the remaining 6 encountered various obstacles, resulting in their failure to obtain the certificate. Sociodemographic profile of participants Most applicants were male (77.3%), belonged to the Hindu religion, and had an education level of SSLC (54.5%). Unemployment affects nearly half (45.5%), and most (86.4%) live below the poverty line (BPL). While 77.3% are married, urban and rural residents were equally divided. Most applicants (77.3%) hail from Karnataka. Clinical profile of beneficiaries The age of the participants ranged from 25 (minimum) to 73 (maximum), with a median of 49.05 years. The duration of illness varied between 3 and 23 years, with a median of 8.9 years. The duration of treatment also ranges from 2 to 21 years, with a median of 8.4 years. UPDRS off scores, available only for 16 participants, ranged from 0 to 58, with a median of 35.4. Finally, the age of onset of the condition ranged from 21 to 67 years, with a median of 40.1 years. Challenges, barriers, benefits, and suggestions The study analyzed data from semi-structured interviews to identify challenges faced by patients with PD in obtaining disability certificates and welfare benefits. Participants found that the disability certification process is time-consuming and cumbersome. Some barriers included scheduling appointments with stakeholders, obtaining signatures from various departments, and obtaining the certificate. In addition, awareness among patients about disability certificates and accessibility due to functionality as well as the distance are problems for the number of beneficiaries. Patients who availed of disability certificates received monthly pensions, while others received railway and bus concessions. Some patients did not apply for any of the benefits [Figure 1]. Some suggestions include improving awareness about disability certificates and their benefits and implementing policy-level changes to reduce waiting times. Future studies should focus on these challenges from a multi-centric perspective, especially among PD patients.Figure 1: Purpose of applying for disability certificate and sources of informationAcknowledgments We thank all the participants who contributed to the article. Author contribution Research project: Conception: AM,PT Organization: AM,PT Execution: AM,PT Statistical analysis: Design: AM,PT Execution: AM Review and Critique: PT,GK,NK Manuscript preparation: Writing of the first draft: AM Review and Critique: NK,VH,RY,PKP. Ethical compliance statement The authors certify that our work aligns with the Journal’s ethical publishing requirements. Financial support and sponsorship No funding support received for this study. This work is part of a PhD research supported by University Grant Commission received by the first author. Conflicts of interest There are no conflicts of interest.