Stigma as a key determinant of health-related quality of life in Parkinson’s disease

Abstract

Purpose People with Parkinson's disease (PD) may experience stigma due to their visible features of movement and communication difficulties. This paper aimed to examine the role of experienced stigma in health-related quality of life (QOL), after controlling for personal and clinical characteristics. Methods This is a preliminary analysis of a subset of baseline data from the Social Self-Management of Parkinson's Disease Study (SocM-PD), an ongoing 3-year prospective cohort study. 73 people with PD (Mage = 65.72, 29 women) participated in this study. Hierarchical multiple regression analyses were used to determine the role of stigma in QOL, after controlling for gender, disease severity, depression, and motor difficulties of daily living. Results Significant correlations were found between QOL with gender (r = .26), disease severity (r = .38), depression (r = .65), motor difficulties of daily living (r = .71), and stigma (r = .83). After controlling for the significant covariates, stigma made a significant and unique contribution to the explanation of QOL by 13.7 % (p < 0.001). A final hierarchical multiple regression with stigma and the 4 covariates revealed an overall model that explained 77.8% of the total variance of QOL (F [5, 63] = 48.79, p < 0.001). Conclusions Experienced stigma appears to be a key determinant of QOL in people with PD. The results suggest the importance of further understanding stigma in PD to develop possible intervention strategies. Future work is also needed to verify the results with a larger and longitudinal dataset of the SocM-PD.

Difficulties in activities of daily living are associated with stigma in patients with Parkinson’s disease who are candidates for deep brain stimulation

“…Although causality cannot be determined from crosssectional studies, the results suggest that when patients perceive greater difficulty in their daily activities, selfdepreciation could increase. Such a relationship was also found by Ma et al 32 We found no association between stigma and scoring on the MDS-UPDRS III scale, which evaluates motor difficulties objectively using a third evaluator, which demonstrates the importance of patient self-perception. Thus, although motor symptoms, which had been objectively assessed by a neurologist, were not associated with patient self-stigma, patient perception of difficulties with daily activities was associated with selfstigma, independently of depressive symptoms or other characteristics of the disease.…”

“…Another study showed that stigma was a determinant of depression, which was a predictor of the quality of life. 31 Ma et al, 32 in a study of PD patients, found that those with more depressive symptoms reported more stigma, especially self-stigma, which appears to be of greater and more direct importance in quality of life than social stigma. Our sample likely diverged from these results due to its relatively low level of depressive symptoms, since approximately 70% of the patients scored up to nine on the HADS depression subscale, whose suggested cut-off for a major depressive episode is 10/ 11.…”

The Importance of Connection to Others in QoL in MSA and PSP

“…PD patients in a review of a number of studies experienced impact on the quality of their interactions with others, producing a retreat from the social sphere [38]. Stigma has been found to predict negatively for QoL in PD [39]. When it is considered that speech problems in MSA and PSP are more severe and have an earlier onset and the conditions are overall less responsive to medication, these factors are especially important to consider in AP [40].…”

Validation and Reliability Study of the Turkish Version of the Neuroquality of Life (Neuro-QoL) - Stigma Scale in Neurological Disorders

“…Patients who cannot cope with social life due to their symptoms and who withdraw from society will have to live alone in their private world. Studies showed that higher stigma scores were related to more severe PD symptoms (35). Nowinski et al showed that the stigma T-score was 48.39 ± 6.62 in PD cases (36).…”