Objective: To explore the experiences of patients with Parkinson’s disease (PD) regarding pharmacological treatment in three Peruvian regions with diverse geographic and cultural contexts.

Background: Access to neurological care and PD medications in Peru varies significantly between coastal, jungle, and highland regions. Understanding patients’ lived experiences is essential to identifying barriers and proposing equity-oriented health policies.

Method: A qualitative study following COREQ guidelines was conducted. Home-based assessments within the Parkys study were performed in three cities: Chiclayo (coast), Tarapoto (jungle), and Cusco (highlands). Semi-structured interviews (average 30 minutes) were audio-recorded with informed consent and analyzed through grounded theory and semantic networks.

Results:

Thirteen patients with PD were interviewed, revealing marked disparities in access to neurological care and quality of follow-up. In Chiclayo, patients generally accessed neurologists every three months, though obtaining appointments required significant effort, motor evaluation was typically present, and satisfaction was mixed. In Tarapoto, delays were longer, reaching up to five months, with complex administrative procedures described as cumbersome; motor assessment was limited or absent, leading patients to develop high self-management strategies including medication adjustments, yoga, and meditation. In Cusco, the situation was critical, with patients waiting over two years without in-person neurological consultation; teleconsultations with Lima-based physicians were used solely for prescription renewal, with no motor evaluation performed, generating a profound sense of abandonment. Four phenomenological clades emerged from the analysis: accompanied patients with regular follow-up and satisfaction, obstructed navigators who accessed care with great effort but faced brief consultations, forced self-managers who developed sophisticated coping strategies due to minimal access, and system-abandoned patients with no clinical follow-up and uncontrolled disease progression.

Conclusion: Marked regional inequities exist in PD pharmacological care in Peru. While medication access is maintained, clinical follow-up and motor evaluation are severely lacking, especially in the highlands. Patients develop adaptive strategies, but these cannot replace proper neurological supervision.

References: Rutten, S., Van Den Heuvel, O., De Kruif, A., Schoonmade, L., Schumacher, E., Vermunt, K., Hagen, R., Van Wegen, E., & Rutten, K. (2020). The Subjective Experience of Living with Parkinson’s Disease: A Meta-Ethnography of Qualitative Literature. Journal of Parkinson’s Disease, 11, 139 – 151. https://doi.org/10.3233/jpd-202299

Armbruster, A., Matthiesen, S., Jensen-Dahm, C., Møller, M., Finnerup, N., & Vase, L. (2025). “There is generally no focus on my pain from the healthcare staff”: A qualitative study exploring the perspective of patients with Parkinson’s disease. Scandinavian Journal of Pain, 25. https://doi.org/10.1515/sjpain-2024-0068

Carmody, T., Park, R., Bennett, E., Kuret, E., Klein, B., Costa, À., Messner, S., & Hursey, A. (2024). An Ethnographic Study of Patient Life Experience in Early-Stage Parkinson’s Disease in the United States and Germany. Neurology and Therapy, 13, 1219 – 1235. https://doi.org/10.1007/s40120-024-00632-7

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MDS Abstracts - https://www.mdsabstracts.org/abstract/experiences-of-patients-with-parkinsons-disease-regarding-pharmacological-treatment-in-three-peruvian-regions/