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. 2022;12(5):1677-1691.
doi: 10.3233/JPD-213121.

Experienced Respiratory Symptoms and the Impact on Daily Life from the Perspective of People with Parkinson's Disease: A Grounded Theory

Veerle A van de Wetering-van Dongen  1 , Maarten J Nijkrake  1 , Niek Koenders  2 , Philip J van der Wees  3 , Bastiaan R Bloem  4 , Johanna G Kalf  1
Affiliations

Experienced Respiratory Symptoms and the Impact on Daily Life from the Perspective of People with Parkinson's Disease: A Grounded Theory

Veerle A van de Wetering-van Dongen et al. J Parkinsons Dis. 2022.

Abstract

Background: Abnormal respiratory function tests can be observed early in the course of Parkinson's disease (PD). A better understanding of the impact of respiratory dysfunction on daily life in PD is needed to prevent later occurring complications as a (aspiration) pneumonia.

Objective: To explain which respiratory symptoms people with PD or a form of atypical parkinsonism experience and how these symptoms impact on their daily lives.

Methods: This qualitative study used a grounded theory approach. A purposeful sample strategy was used to capture information-rich cases. Data were collected in semi-structured interviews with participants diagnosed with either PD (n = 11) or atypical parkinsonism (n = 3), all of whom had confirmed respiratory symptoms. Data were analyzed using grounded theory analysis by creating codes, categories, theoretical themes, and, ultimately, a conceptual model.

Results: Four respiratory profiles emerged, describing different types of respiratory dysfunction, with various positive and negative influencing factors. First, a loss of breathing automatism was experienced. Second, episodes of breathlessness or a rapid, shallow breathing pattern were triggered by either physical exertion, fatigue, or postural deformities. Third, stress and anxiety also triggered episodes of breathlessness. Fourth, a decreased cough strength and frequent coughing. Based on these findings, we constructed a conceptual model that visualizes the relations between these four types of respiratory dysfunction and their impact on daily life, with 'discomfort' and 'avoidance of social activities' as crucial elements.

Conclusion: A tailored approach for each profile of respiratory dysfunction is recommended to improve respiratory dysfunction and to reduce its social impact in people with PD.

Keywords: Parkinson’s disease; Respiratory function; multidisciplinary; qualitative research; respiratory symptoms.

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Conflict of interest statement

The authors have no financial conflicts of interest related to this publication.

Prof. Bloem currently serves as co-Editor in Chief for the Journal of Parkinson’s disease, serves on the editorial of Practical Neurology and Digital Biomarkers, has received honoraria from serving on the scientific advisory board for Abbvie, Biogen and UCB, has received fees for speaking at conferences from AbbVie, Zambon, Roche, GE Healthcare and Bial, and has received research support from the Netherlands Organization for Scientific Research, the Michael J Fox Foundation, UCB, Abbvie, the Stichting Parkinson Fonds, the Hersenstichting Nederland, the Parkinson’s Foundation, Verily Life Sciences, Horizon 2020 and the Parkinson Vereniging. The Center of Expertise for Parkinson & Movement Disorders was supported by a center of excellence grant by the Parkinson Foundation.

Dr. Kalf has received research funding from the Michael J. Fox Foundation, and the Dutch Association of Logopedics and Phoniatrics.

Figures

Fig. 1
Fig. 1
Conceptual model visualizing the causes, consequences, and relationships between the four respiratory profiles and their impact on daily life. The inward-facing arrows visualizes the causes of respiratory symptoms and the outward-facing arrows visualize the consequences of respiratory symptoms.
See this image and copyright information in PMC

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