scholarly journals Off Time Independently Affects Quality of Life in Advanced Parkinson’s Disease (APD) Patients but Not in Non-APD Patients: Results from the Self-Reported Japanese Quality-of-Life Survey of Parkinson’s Disease (JAQPAD) Study

2021 ◽  
Vol 2021 ◽  
pp. 1-9
Author(s):  
Yuka Hayashi ◽  
Ryoko Nakagawa ◽  
Miwako Ishido ◽  
Yoko Yoshinaga ◽  
Jun Watanabe ◽  
...  

Introduction. Parkinson’s disease (PD) is characterized by a triad of motor symptoms and several nonmotor symptoms (NMS). Identifying the most appropriate treatment is essential for improving patient quality of life (QoL). However, it is still not known which PD symptoms more commonly affect patients with advanced PD (APD) versus non-APD. This study examined the factors that most affected the QoL of patients with APD (defined using the 5-2-1 criteria: ≥5 oral levodopa doses a day, off time ≥2 hours a day, or troublesome dyskinesia ≥1 hour a day) versus non-APD in a large Japanese population using the Japanese Quality-of-Life Survey of Parkinson’s Disease (JAQPAD) study. Methods. Participants in this self-reported survey-based study included all members of the Japan Parkinson’s Disease Association. Questionnaires assessing NMS and QoL (e.g., the 8-item PD Questionnaire [PDQ-8]) were included. Univariate and multivariate regression analyses were conducted to identify clinical factors impacting QoL using the PDQ-8 Summary Index (PDQ-8 SI). Results. Of the 3022 eligible patients, 864 were classified as having non-APD and 1599 as having APD. QoL as assessed by the PDQ-8 SI was notably worse in patients with APD versus non-APD (39.2 vs. 26.9, p < 0.0001 ). Although off time affected QoL only in patients with APD, PD duration and the NMS Questionnaire score significantly contributed to the QoL in both patients with APD and non-APD. Conclusions. This study identified the factors more commonly associated with worse QoL in patients with APD versus non-APD. Our findings offer new insights for providing optimal treatment and improving treatment satisfaction in patients with PD.

BMC Neurology ◽  
2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Guiying He ◽  
Chun-Feng Liu ◽  
Qinyong Ye ◽  
Zhenguo Liu ◽  
Miao Jin ◽  
...  

Abstract Background The impact of nocturnal disturbance (ND) in Parkinson’s disease on quality of life of patients in Western Countries is increasingly understood. Our study aimed to investigate ND prevalence and its quality of life impact in patients with advanced Parkinson’s disease in China. Methods In a multicenter, tertiary-care hospital, outpatient-based, cross-sectional study, patients with advanced Parkinson’s disease (Modified Hoehn & Yahr [H&Y] Stage II–IV with ≥3 h awake “off” time/day) from 10 tertiary hospitals throughout China completed the Parkinson’s Disease Sleep Scale-2 (PDSS-2) and Parkinson’s Disease Questionnaire-39 (PDQ-39). The primary endpoint was the percentage of patients with significant ND (PDSS-2 total score ≥ 15). Additional endpoints were demographic and clinical characteristics, PDSS-2 and PDQ-39 total and subscale scores, correlation between PDSS-2 and PDQ-39, and risk factors for ND and higher PDSS-2 or PDQ-39 scores. Results Of 448 patients analyzed (mean age 63.5 years, 47.3% female), 70.92% (95% confidence interval: 66.71, 75.13) had significant ND. Presence of ND and higher PDSS-2 scores were associated with longer disease duration and higher H&Y stage. Presence of ND was also associated with more awake “off” time/day and female sex. PDQ-39 scores were significantly worse for patients with ND versus those without ND; worse scores were associated with more awake “off” time/day, female sex, and higher H&Y stage. PDSS-2 and PDQ-39 total scores were associated: Pearson correlation coefficient 0.62 (p < 0.001). Conclusions In China, ND was highly prevalent in patients with advanced Parkinson’s disease and adversely impacted quality of life. This study highlights the importance of early diagnosis and optimized management of ND in patients with Parkinson’s disease in China.


2012 ◽  
Vol 15 (7) ◽  
pp. A556
Author(s):  
C. Jenkinson ◽  
S. Dummett ◽  
J. Dawson ◽  
R. Fitzpatrick ◽  
L. Kelly ◽  
...  

2020 ◽  
Vol 41 (10) ◽  
pp. 2929-2937 ◽  
Author(s):  
Angelo Antonini ◽  
Pietro Marano ◽  
Graziano Gusmaroli ◽  
Nicola Modugno ◽  
Claudio Pacchetti ◽  
...  

Abstract Introduction The GLORIA registry included 375 advanced Parkinson’s disease (PD) patients and evaluated the efficacy and safety of a 24-month levodopa-carbidopa intestinal gel (LCIG) treatment in routine medical care. This analysis focuses on the Italian population, 60 patients treated with LCIG in 7 specialised PD care centres. Methods Hours of “Off” and “On” time were assessed with a modified version of the Unified Parkinson’s Disease Rating Scale (UPDRS) part IV items 39 and 32. Motor fluctuations, dyskinesia, non-motor symptoms, quality of life and safety were evaluated. Results Overall, 42 (70%) out of 60 patients completed the registry. LCIG treatment reduced “Off” time (− 3.3 ± 2.7 h at month 24 (M24), P < 0.0001), increased “On” time with dyskinesia (− 2.6 ± 5.2 h at M12, P = 0.0160), and improved UPDRS II and UPDRS III total scores at M24 (− 4.5 ± 10.6, P = 0.0333 and − 4.9 ± 11.7, P = 0.0229, respectively), Non-Motor Symptom Scale (NMSS) total score (− 21.8 ± 28.5, P < 0.0001) and Parkinson’s Disease Questionnaire-8 item (PDQ-8) total score (− 12.5 ± 23.9, P = 0.0173) versus previous oral therapy. Adverse drug reactions (ADR) possibly or probably related to treatment were reported in 16 (28.6%) patients. Decreased weight (7.1%), polyneuropathy (7.1%) and abdominal pain (5.4%) were the most frequent ADRs while device malfunction (5.4%) and medical device change (5.4%) were the most reported device complaints. Conclusions LCIG improved motor fluctuations, non-motor symptoms and quality of life over 24 months while tolerability was consistent with the established safety profile.


2021 ◽  
pp. 089198872098890
Author(s):  
Rebecca Gilbert ◽  
Pravin Khemani

Advanced Parkinson’s disease (PD) often brings a set of motor and non-motor features that are particularly challenging to manage. Medication options can be limited by side-effects and quality of life can be severely affected by an accumulating burden of nonmotor symptoms. Here, we reviewed the literature and our clinical experience with the aim of providing a practical approach to the management of advanced PD. We provide guidelines for treatment of physical and neurobehavioral concerns, that occur in advanced PD.


2014 ◽  
Vol 13 (5) ◽  
pp. 1363-1372 ◽  
Author(s):  
Carolyn Murdock ◽  
Wendy Cousins ◽  
W. George Kernohan

AbstractObjective:Parkinson's disease (PD) is a progressive neurodegenerative condition often resulting in significant disability and impacting on one's ability to participate in an occupation. The present study aimed to explore how people with advanced Parkinson's disease experience the phenomenon of occupation in their daily lives in order to inform the practice of occupational therapy in palliative care.Method:Using a phenomenological approach, in-depth interviews were undertaken with a purposive sample of 10 people in the advanced stages of Parkinson's disease. These interviews were audiotaped, transcribed verbatim, and subsequently analyzed using a thematic content analysis approach. The study received approval from the relevant university ethics committee, as well as the research network of Parkinson's UK.Results:The experience of occupation emerged as being physical, psychological, social, and spiritual with related subthemes. Within each of these themes, participants described their experience of occupation that they valued and that were important to their daily lives. They also identified the strategies they employed to continue participating in certain occupations and described others they were no longer able to engage in and the impact of that loss.Significance of Results:Participants' experiences crossed the domains of palliative care and suggest that adopting a palliative care approach would enhance an enhanced quality of life, experienced in terms of meaningful and valuable occupation. Disruption to participation in occupation caused them distress and frustration, suggesting that access to occupation-focused therapy would significantly improve quality of life for people with PD. As there is a strong link between the ethos of occupational therapy and palliative care, it is proposed that there is a valuable role for occupational therapy intervention to play within palliative care.


2013 ◽  
Vol 16 (7) ◽  
pp. A625
Author(s):  
C Kerr ◽  
C.E Howard ◽  
K Johnston ◽  
H.T. Smith ◽  
E Lloyd ◽  
...  

2007 ◽  
Vol 14 (10) ◽  
pp. 1030
Author(s):  
Julian P. Rodrigues ◽  
Susan E. Walters ◽  
Rick Stell ◽  
Peter Watson ◽  
Frank L. Mastaglia

2021 ◽  
pp. 1-9
Author(s):  
Noa Cohen ◽  
Yael Manor ◽  
Yitzhak Green ◽  
Gail Tahel ◽  
Inbal Badichi ◽  
...  

BACKGROUND: Intensive, multi-disciplinary, rehabilitation programs for patients with Parkinson’s disease (PWPs) have shown to be effective. However, most programs are based on in-patient service, which is expensive. OBJECTIVE: To demonstrate the feasibility of a multidisciplinary, intensive, outpatient rehabilitation program (MIOR) for moderate to advanced Parkinson’s Disease (H&Y≥2). METHOD: The MIOR program takes place at a community rehabilitation center (‘Ezra Le’Marpe’), 3 times a week, 5 hours, 8 weeks, and includes 20 PWPs in each cycle. The multi-disciplinary team includes physical, occupational, speech and hydro therapists. Additional activities include, social work groups, boxing, dancing and bridge. RESULTS: Data was collected retroactively for the first two years. Data analysis includes 158 patient files who completed the program (mean disease duration 10.1±6 and mean H&Y stage 2.8±0.67). Assessments were performed at the beginning and end of the intervention. Positive results were collected: improvement in number of falls (p <  0.0001), Functional Independence Measure (p <  0.0001), quality of life (p <  0.01), balance (p <  0.0001), upper limb function (p <  0.0001) and paragraph reading vocal intensity (p <  0.01). CONCLUSIONS: MIOR is a feasible program, showing positive results in moderate to advanced PWP’s, improving quality of life, daily function, and motor performance. The current outcomes demonstrate feasibility of MIOR in addition to medical treatment.


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