Dataset Information

Experiences of Living With the Nonmotor Symptoms of Parkinson's Disease: A Photovoice Study.

ABSTRACT:

Background

Nonmotor symptoms (NMSs) are frequently experienced by people with Parkinson's disease (PD) and are often perceived as their most bothersome symptoms. However, these remain poorly understood with suboptimal clinical management. These unmet needs are an important determinant of health-related quality of life (QoL) in PD.

Objective

The aim of this study was to gain insights into the experience of living with the NMS of PD in real-time using participatory action methodology.

Method

Using the photovoice method, 14 people with PD took photographs to document their experiences of living with the NMS of PD. They composed corresponding written narratives to capture the impact of NMS on their daily activities and QoL. In total, 152 photographs and corresponding narratives were analysed using thematic analysis with an inductive approach.

Results

Four interrelated themes were identified. Emotional well-being and sense of self encompassed a process of adjustment to living with PD. Engaging in valued activities, adopting a positive mindset and utilising coping strategies were thought to enhance confidence and self-esteem. Social support and societal awareness highlighted the importance of supportive relationships and socialising to aid participation and avoid isolation. Barriers to social engagement included the unpredictability of NMS and nonvisible NMS being neglected or misunderstood.

Conclusion

Findings demonstrated the far-reaching impact of nonmotor aspects of PD on emotional, occupational and social dimensions. These needs could be addressed through person-centred and comprehensive approaches to care.

Patient or public contribution

This study utilised a participatory research approach allowing participants to choose the subjects that mattered to them and how to present their results. Additionally, a group workshop was held with people with PD, their family members and healthcare professionals to guide theme development.

SUBMITTER: Smith LJ

PROVIDER: S-EPMC11199325 | biostudies-literature | 2024 Jun

REPOSITORIES: biostudies-literature

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Publications

Experiences of Living With the Nonmotor Symptoms of Parkinson's Disease: A Photovoice Study.

Smith Laura J LJ Callis Jerri J Bridger-Smart Shannon S Guilfoyle Olivia O

Health expectations : an international journal of public participation in health care and health policy 20240601 3

<h4>Background</h4>Nonmotor symptoms (NMSs) are frequently experienced by people with Parkinson's disease (PD) and are often perceived as their most bothersome symptoms. However, these remain poorly understood with suboptimal clinical management. These unmet needs are an important determinant of health-related quality of life (QoL) in PD.<h4>Objective</h4>The aim of this study was to gain insights into the experience of living with the NMS of PD in real-time using participatory action methodolog ...[more]

PMID: 38924637

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Project description:Background:Frequently used nonmotor scales do not cover all aspects of dysautonomia in Parkinson's disease (PD). This study explores the association between autonomic symptoms and sicca symptoms with other nonmotor symptoms and health-related quality of life (QoL) in PD. Methods:Autonomic symptoms (Survey of Autonomic Symptoms, SASs), motor function (Movement Disorder Society-sponsored revision of the Unified Parkinson's Disease Rating Scale III, MDS-UPDRS III), nonmotor symptoms (nonmotor symptoms questionnaire, NMS-Quest), and QoL (PD Questionnaire-39, PDQ-39) were analysed in 93 PD patients without dementia. Multivariable and multivariate analyses were performed to study the association between clinical parameters and PDQ-39 domains. Results:Among the autonomic symptoms, sicca symptoms (xerostomia and dry eyes) were the most commonly reported (69%), followed by sexual dysfunction in men, leaking of urine, vasomotor dysfunction, constipation, sudomotor dysfunction, and orthostatic symptoms. The autonomic symptom burden (SAS total) correlated with the NMS-Quest and Hoehn and Yahr stage, but not with age, levodopa equivalent daily dose, disease duration, and the MDS-UPDRS III. The SAS total score was an independent predictor of the PDQ-39 summary index and mainly affected the PDQ-39 cognition and emotional well-being domains. Sicca symptoms were not associated with age, MDS-UPDRS III, disease duration, Hoehn and Yahr stage, and levodopa equivalent daily dose but aggravated the PDQ-39 domains: cognition, emotional well-being, bodily discomfort, and mobility. Sicca symptoms frequently occur together with other nonmotor symptoms, namely, urine urgency, orthostatic problems, and concentration problems. Overall, 75% of the subjects took at least one drug that can cause sicca symptoms (anti-PD medication, antidepressant drugs, antihypertensive drugs, antipsychotic drugs, antimuscarinic drugs, and analgesic drugs). Conclusion:Sicca symptoms are common in PD and negatively influence QoL. The observed association between sicca symptoms and other nonmotor symptoms provides further preliminary evidence for the growing recognition of different nonmotor clusters in PD.

Project description:Lewy body diseases, such as Parkinson's disease (PD), dementia with Lewy bodies (DLB), and multiple system atrophy (MSA), are associated with a wide range of nonmotor symptoms (NMS), including cognitive impairment, depression and anxiety, sleep disorders, gastrointestinal symptoms, and autonomic failure. The reason why such diverse and disabling NMS have not been weeded out but have persisted across evolution is unknown. As such, one possibility would be that the NMS might be somehow beneficial during development and/or reproductive stages, a possibility consistent with our recent view as to the evolvability of amyloidogenic proteins (APs) such as ?-synuclein (?S) and amyloid-? (A?) in the brain. Based on the heterogeneity of protofibrillar AP forms in terms of structure and cytotoxicity, we recently proposed that APs might act as vehicles to deliver information regarding diverse internal and environmental stressors. Also, we defined evolvability to be an epigenetic phenomenon whereby APs are transgenerationally transmitted from parents to offspring to cope with future brain stressors in the offspring, likely benefitting the offspring. In this context, the main objective is to discuss whether NMS might be relevant to evolvability. According to this view, information regarding NMS may be transgenerationally transmitted by heterogeneous APs to offspring, preventing or attenuating the stresses related to such symptoms. On the other hand, NMS associated with Lewy body pathology might manifest through an aging-associated antagonistic pleiotropy mechanism. Given that NMS are not only specific to Lewy body diseases but also displayed in other disorders, including amyotrophic lateral sclerosis (ALS) and Huntington's disease (HD), these conditions might share common mechanisms related to evolvability. This might give insight into novel therapy strategies based on antagonistic pleiotropy rather than on individual NMS from which to develop disease-modifying therapies.

Dataset Information

Experiences of Living With the Nonmotor Symptoms of Parkinson's Disease: A Photovoice Study.

Background

Objective

Method

Results

Conclusion

Patient or public contribution

Publications

Experiences of Living With the Nonmotor Symptoms of Parkinson's Disease: A Photovoice Study.

Similar Datasets

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