Quality of life in people with Parkinson’s disease: the relevance of social relationships and communication

Abstract

[Purpose] Maintaining high quality of life is crucial for the rehabilitation of patients with Parkinson’s disease. The quality of life scales currently in use do not assess all quality of life domains or their importance for each individual. Therefore, a new quality of life measure, the Schedule for the Evaluation of Individual Quality of Life-Direct Weighting, was used to investigate quality of life in people with Parkinson’s disease. [Subjects and Methods] Fifteen people with idiopathic Parkinson’s disaese (average age = 80.0 years, standard deviation = 10.3 years, Hoehn & Yahr stages 1–4) were interviewed using the Schedule for the Evaluation of Individual Quality of Life-Direct Weighting. Its quality of life constructs were tested by comparing them against disease-specific quality of life (39-items Parkinson’s Disease Questionnaire), motor functioning (Unified Parkinson’s Disease Rating Scale Part III), and activities of daily living (Barthel Index). [Results] Social connections such as “family” and “friends” were revealed as important constructs of life satisfaction. The Schedule for the Evaluation of Individual Quality of Life-Direct Weighting was not significantly correlated with the 39-items Parkinson’s Disease Questionnaire, Unified Parkinson’s Disease Rating Scale Part III, or Barthel Index but was significantly correlated with the “communication” dimension of the 39-items Parkinson’s Disease Questionnaire. [Conclusion] The Schedule for the Evaluation of Individual Quality of Life-Direct Weighting detected various domains of quality of life, especially social relationships with family and friends. “Being heard” was also revealed as an essential component of life satisfaction, as it provides patients with a feeling of acceptance and assurance, possibly resulting in better quality of life.

Subjective Self-Rated Speech Intelligibility and Quality of Life in Patients with Parkinson’s Disease in a Malaysian Sample

“…In PD, speech impairment often leads to communication difficulties and affect participation in life, and quality of life [7]. This was supported by our finding that individuals with PD struggle with more communication issues than the control group.…”

“…Apart from resting tremor, slowness of movement, stiffness in muscle tone, and imbalance of body posture, PD is frequently accompanied by depression, dementia, swallowing difficulty, and speech and voice disorders [3 -5]. Hypokinetic dysarthria, a speech disorder that commonly presents in patients with PD, often results in limitation in their social interactions [6,7]. PD affects many aspects of patients' lives and since this disease is progressive, it is important to maintain functional abilities related to independent living when providing rehabilitation services [8 -10] in order to maintain their quality of life [11,12] and reduce the burden on caregivers [13].…”

“…Using the PDQ-39, PD patients reported higher scores (indicates poorer experience) in the mobility dimension. This indicates that PD is severely affecting the patients' mobility, and the rank is followed by activities of daily living dimension or bodily discomfort [7,19,20]. When comparing quality of life between people with PD and the general population, Schrag and colleagues (2000) found that individuals with PD showed greatest impairment in the areas related to physical and social functioning.…”

The Influence of Digestive Dysfunctions on Quality of Life in Parkinson Disease

“…Early detection and effective interventions on these conditions can help prevent the serious consequences in quality of life [10].…”

Self-Management Program Participation and Social Support in Parkinson's Disease: Mixed Methods Evaluation

“…The stress-buffering hypothesis, which postulates that good social support can protect one’s well-being against the negative effects of stress (Cohen & McKay, 1984), describes a psychosocial mechanism through which this may be achieved. Indeed, existing literature suggests good social support is associated with multiple psychological benefits for individuals with PD, including decreased stigma (McComb & Tickle-Degnen, 2006), depression, and anxiety (Saeedian et al, 2014; Simpson, Haines, Lekwuwa, Wardle, & Crawford, 2006) as well as increased assistance in activities of daily living, emotional well-being, communication (McComb & Tickle-Degnen, 2006), life satisfaction (Takahashi, Kamide, Suzuki, & Fukuda, 2016), and positive affect (MacCarthy & Brown, 1989; Simpson et al, 2006). Likewise, good social support from caregivers may ensure effective implementation of PD-specific management strategies (Lyons, 2004), and good support for caregivers may be associated with reduced caregiver burden (Schrag et al, 2006; Shin et al, 2012).…”