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Patient Reported Outcomes of Using a Chaplain Service in a Huntington’s Disease Clinic

C. Marshall, W. Aamodt, J. Klapper, P. Cinicola, N. Kleinberg, A. Lasker (Philadelphia, USA)

Meeting: 2024 International Congress

Abstract Number: 625

Keywords: Chorea (also see specific diagnoses, Huntingtons disease, etc): Treatment, Familial neurodegenerative diseases, Neurobehavioral disorders

Category: Palliative Care

Objective: To better understand and describe the impact of providing spiritual care, in the form of a chaplain service, to patients being seen in a Huntington’s disease (HD) multidisciplinary clinic.

Background: Though there is literature about the relationship between spirituality and Parkinson’s disease, literature describing the relationship between spirituality and other neurodegenerative diseases, like HD, is lacking.  The passing of HD from one generation to the next and pervasive nature of the symptoms make dealing with HD uniquely emotional. Within the realm of available psychological support, spiritual care emerges as a significant component. Spiritual care has been shown to be beneficial, particularly in improving quality of life and resilience, in other chronic conditions like COPD, cancer, cardiovascular disease, and end-stage renal disease [1,2]. We used a modified version of a previously validated patient reported outcomes measure (PROM) to gather information about the impact of using a chaplain service in a Huntington’s disease clinic.

Method: Patients with HD who were ≥ 18 years-old and utilized the chaplain service provided through an HD clinic were asked to participate in this study. Eligible participants completed a post-intervention patient reported outcome measurement with prompts related to their feelings while receiving spiritual care and the status of their psychospiritual well-being. Descriptive statistics were used to understand the general characteristics of patient responses, such as overall satisfaction levels or the prevalence of specific emotional or spiritual needs.

Results: Participating patients seen by a chaplain reported positive experiences and improvement in multiple aspects of their psychospiritual well-being after meeting with the chaplain.

Conclusion: Through patient reported outcome measures, we gathered evidence to support the use of a chaplain service to provide spiritual, and therefore more comprehensive, care to patients with HD.

References: 1. Gergianaki I, Kampouraki M, Williams S, Tsiligianni I. Assessing spirituality: is there a beneficial role in the management of COPD? NPJ Prim Care Respir Med. 2019 May 28;29(1):23. doi: 10.1038/s41533-019-0134-x. PMID: 31138810; PMCID: PMC6538715

2. Movahedimoghadam F, Naderi N, Shabani F, Fathollahi MS. Effect of Spiritual Care Program on Resilience in Patients with Heart Failure: A Randomized Controlled Clinical Trial. Iran J Nurs Midwifery Res. 2022;27(4):266-273. Published 2022 Aug 9. doi:10.4103/ijnmr.ijnmr_61_21

To cite this abstract in AMA style:

C. Marshall, W. Aamodt, J. Klapper, P. Cinicola, N. Kleinberg, A. Lasker. Patient Reported Outcomes of Using a Chaplain Service in a Huntington’s Disease Clinic [abstract]. Mov Disord. 2024; 39 (suppl 1). https://www.mdsabstracts.org/abstract/patient-reported-outcomes-of-using-a-chaplain-service-in-a-huntingtons-disease-clinic/. Accessed June 15, 2025.
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