Objective: To investigate the association of self-perception of dysphagia in individuals with Parkinson disease (IwPD) with their caregivers’ perceptions at early, mid and late stages of PD using the patient reported outcome measures (PROMS) the Dysphagia Handicap Index (DHI) and the Dysphagia Handicap Index-Companion (DHI-C).

Background: Parkinson disease (PD) is one of the most common neurodegenerative diseases worldwide with dysphagia being a common sequela of PD.  Individuals with PD (IwPD) may experience repetitive and dysfunctional tongue rocking while attempting to propel a bolus posteriorly through the oral cavity, a delayed swallowing response, impaired pharyngeal stripping which may result in the collection of food or liquid within the valleculae or pyriform sinuses or silent aspiration into the lungs which may be a risk factor for pneumonia. Dysphagia may have a negative impact on anxiety in IwPD and may predict cognitive decline.  Dysphagia also appears to be associated with general health related quality of life (HRQOL) decline compared to healthy controls including depression. Assessing how IwPD and their caregivers perceive dysphagia has the potential to contribute to clinical knowledge of the health status of IwPD, broaden insight into swallowing therapy progress, influence swallowing treatment recommendations and improve long term swallowing outcomes for IwPD.

Method: Ninety-eight pairs of IwPD and their caregivers completed the DHI and DHI-C. Subjects were divided into three levels of time since PD diagnosis: 0-4 years, 5-9 years and 10 or more years. Spearman’s correlations coefficients were computed to assess the associations between the DHI and DHI-C scores (subscales, total score, and perceived severity scores).

Results: There were significant positive associations between the two groups on all subscales and the perceived severity level at almost all time points.

Conclusion: IwPD and their caregivers appear to perceive adverse effects of dysphagia similarly at various stages of PD. Use of the DHI and DHI-C may provide helpful information about management of dysphagia in IwPD with disease progression. 

This research study was partially presented at the American Speech-Language-Hearing Association Annual Convention in Washington, D.C., November 21, 2025.

References: [1] Dorsey ER, Constantinescu R, Thompson J, Biglan KM, Holloway RG, Kieburtz K, Marshall FJ, Ravina BM, Schifitto G, Siderwowf A, Tanner CM (2007) Projected number of people with Parkinson’s disease in the most populous nations, 2005-2030. Neurology, 68:384-386.
[2] Donner MW, Silbiger ML (1966) Cinefluorographic analysis of pharyngeal swallowing in neuromuscular disorders. Am J Med Sci, 251:600-616.
[3] Robbins J, Logemann JA, Kirshner HS (1988) Swallowing and speech production in Parkinson’s disease. Ann Neurol, 19:283-287.
[4] Silbergleit AK, LeWitt P, Junn F, Schultz LR, Collins D, Beardsley T, Hubert M, Trosch R, Schwalb JM (2012) Comparison of dysphagia before and after deep brain stimulation in Parkinson’s disease. Mov Dis, 27(14):1763-1768.
[5] Neinstedt JC, Bihler M, Niessen A, Plaetke R, Potter-Nergu M, Gerloff C, Buhmann C, Pflug C (2019) Predictive clinical factors for penetration and aspiration in Parkinson’s disease. Neurogastro Motility, 31:e13524.
[6] Watts CR, Zhang Y (2022) Progression of self-perceived speech and swallowing impairment in early stage Parkinson’s disease: longitudinal analysis of the Unified Parkinson’s Disease Rating Scale. J Sp Lang Hrng Res, 65:146-158.
[7] Silbergleit AK, Schultz LR, Hamilton K, LeWitt PA, Sidiropoulos C (2021) Self-perception of voice and swallowing handicap in Parkinson’s disease. J Parkinson Dis, 11(4):2027-2034.
[8] Lewis GN, Byblow WD (2002) Altered sensorimotor integration in Parkinson’s disease. Brain, 125:2089-2099.
[9] Hammer MJ, Murphy CA, Abrams TM (2013) Airway somatosensory deficits and dysphagia in Parkinson’s disease. J Parkinsons Dis, 3(1):39-44.
[10]Chen X, Zhu X, Wang EQ, Chen L, Weifend L, Zhaocong C, Hanjun L (2013) Sensorimotor control of vocal pitch production in Parkinson’s disease. Brain Research, 1527:99-107.
[11] Hegland KW, Troche M, Brandimore A (2019) Relationship between respiratory sensory perception, speech, and swallow in Parkinson’s disease. Mov Dis Clin Practice, 6(3):243-249.
[12] Troche MS, Brandimore AE, Okun MS, Davenport PW, Hegland KW (2014) Decreased cough sensitivity and aspiration in Parkinson disease. Chest, 146(5):1294-1299.
[13] Silbergleit AK, Konnai R, Schultz LR (2024) Development and validation of the dysphagia handicap index-companion (DHI-C). Dysphagia. https://doi.org/10.1007/s00455-024-10716-z.
[14] Balash Y, Korczyn AD, Knaani J, Migirov AA, Gurevich T (2017) Quality of life perception by Parkinson’s disease patients and caregivers. Acta Neurol Scand, 151-154.
[15] Silbergleit AK, Schultz L, Jacobson BH, Beardsley T, Johnson AJ (2012) The dysphagia handicap index: development and validation. Dysphagia, 27:46-52.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/assessing-agreement-of-self-perception-of-dysphagia-in-individuals-with-parkinson-disease-and-their-caregivers/