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Objectives Support care is rarely assessed and offered to people with long-term neurologic conditions, particularly Parkinson's disease. This study aimed to assess the symptom burden and unmet support care needs in people with mild to severe Parkinson's disease. Design Cross-sectional study. Setting and Participants Patients with Parkinson's disease were recruited from neurologic outpatient clinics from 3 East and Southeast Asian regions, including Hong Kong, Taiwan, and Thailand. Methods A standardized set of questionnaires assessing unmet care needs [Palliative care Outcome Scale (POS)], disease-specific symptom burden (POS–Symptoms–Parkinson's Disease), generic health-related quality of life (HRQOL) (EQ-5D-3L), and sociodemographic and clinical background. Results Completed questionnaires (n = 186) were collected from 64 Hong Kong Chinese, 64 Taiwanese, and 58 Thai patients. Their mean age was 67.23 ± 8.07, 54% were female, and 80% had mild-to-moderate disease. Their mean POS score was 10.48 ± 6.38, indicating moderate unmet support needs. Two-thirds of the participants rated constipation, fatigue, leg problem, and daytime somnolence as the most prevalent and burdensome symptoms. Patients from Hong Kong and Taiwan prioritized psychosocial and spiritual support, whereas Thai patients prioritized physical needs and emotional concerns. Multivariate adjustment for demographics and clinical characteristics showed that high psychological, spiritual, and practical burdens are associated with young age, male gender, and advanced disease stages. Conclusions and Implications Patients experience significant symptom burden and moderate unmet support needs at the early to middle stage of Parkinson's disease. Routine assessment of changes in symptom burden should start early. The timely referral of support care services should provide appropriate psychospiritual and practical support in addition to motor training. Planning for support care services should consider cultural and health service contexts.

Background and Purpose: The coronavirus disease 2019 (COVID-19) outbreak has led to disruptions in health care service delivery worldwide, inevitably affecting stroke survivors requiring ongoing rehabilitation and chronic illness management. To date, no published research has been found on stroke caregiving during the COVID-19 pandemic. This study aimed to explore Hong Kong stroke caregivers’ caregiving experiences in the midst of this difficult time. Methods: Individual semistructured interviews were conducted with 25 Chinese adult primary stroke caregivers from May to June 2020 via telephone. Interviews were transcribed verbatim and analyzed using an interpretive description approach and constant comparison strategy. Results: Five themes of the stroke caregiving experience during the COVID-19 pandemic emerged: care service adversities, additional caregiving workload and strain, threatened relationship between caregiver and stroke survivors, threats to caregivers’ physical and psychological well-being, and needs for continuing caregiving roles. Our findings suggested that caregivers have worsened physical and psychological well-being because of increases in care burden with simultaneously reduced formal and informal support. The relationship between caregiver and stroke survivor was subsequently affected, placing some survivors at heightened risk of abuse. Conclusions: Our study provides valuable findings about stroke caregiving experiences and needs during the pandemic. Delivery of psychological support, telemedicine, and household hygiene resources would be useful to mitigate caregivers’ psychological distress during the COVID-19 pandemic.

Parkinson's disease (PD) is a chronic condition that results in not only physical deterioration but also a spectrum of psychosocial outcomes that demand continuous adjustment and coping. Previous qualitative research into the illness experiences has been conducted mainly in Western populations, yet little is known about Chinese PD patients' adjustment. The aims of this qualitative description study were to (a) understand the illness and adjustment experiences, (b) explore the reasons for psychological distress and (c) discern the adjustment strategies adopted along the course of illness, from the perspective of Hong Kong Chinese PD patients. Individual semi-structured interviews were conducted with 14 patients from January to June, 2016. Data were analysed using thematic analysis. Two themes emerged from the interviews: confronting the changes caused by Parkinson's disease and adjusting to living with Parkinson's disease. Participants reported experiencing turmoil due to progressive loss of functions and abilities, changes in role and identity and unattended emotional needs in the course of their illness. Considering the chronic and fluctuating nature of PD, rehabilitation programs should be applied to address not only the physical symptoms but also the psychological needs of PD patients. Behavioral strategies facilitating active health behaviours and accommodative psychological adjustment are salient to facilitate the holistic well-being of PD patients.

Background Even though the negative impacts of nocturia on sleep quality and health-related quality of life (HRQOL) have been documented in previous research, their interrelationship has been poorly studied. This study aimed to explore whether nocturia would affect sleep quality, which in turn affects HRQOL. Methods Participants aged 40 and above were randomly recruited from a Hong Kong public primary care clinic. Participants were asked to report the average number of nocturia (waking up at night to void) pisodes per night over a 1-month period. The Pittsburgh Sleep Quality Index (PSQI) and the 12-Item Short Form Health Survey version 2 (SF-12 v2) were administered. The mediation analysis was tested using multistage regression approach and bootstrap method. Results Of the 500 subjects who completed the survey, 31.2% reported symptomatic nocturia (having ≥2 nocturia episodes per night), and 60.4% experienced poor sleep quality (a PSQI global score > 5). Respondents with symptomatic nocturia had a poorer HRQOL in the domains of physical functioning (PF), role physical (RP) and social functioning (SF), general health (GH), vitality (VT) and physical component summary (PCS) of the SF-12 v2 than those without. Compared with the respondents without poor sleep quality, those with poor sleep quality had poorer HRQOL across all domains and summaries of the SF-12 v2. Mediation analysis found that sleep quality fully mediated the association between nocturia and the PF, RP and SF domains of the SF-12 v2, respectively, and partially mediated the association between nocturia and the GH, VT and PCS domains of the SF-12 v2, respectively. Conclusions We found that sleep quality mediated the association between nocturia and HRQOL. To enhance the HRQOL of patients with nocturia, clinicians should not only focus on nocturia symptoms, but also on their sleep quality.

The COVID-19 pandemic itself and related public health measurements have had substantial impacts on individual social lives and psychological and mental health, all to the detriment of health-related quality of life (HRQoL). There have been extensive studies investigating the mental health of people in different populations during the COVID-19 pandemic. However, few studies have explored the impact of COVID-19 and its association with HRQoL. To fill this research gap and provide further empirical evidence, this study examined the impact of COVID-19 on Hong Kong people and evaluated its association with HRQoL. A total of 500 participants were randomly recruited to complete an online questionnaire on their concerns related to COVID-19. This entailed responding to the World Health Organization Quality of Life-BREF instrument. Data were collected between 24 April and 3 May 2020. Independent t-tests and multiple linear regressions were used to examine the association between the impact of COVID-19 and HRQoL. Overall, 69.6% of participants were worried about contracting COVID-19, and 41.4% frequently suspected themselves of being infected. Furthermore, 29.0% were concerned by the lack of disinfectants. All of these findings were associated with poorer HRQoL in the physical and psychological health, social relationships, and environment domains. On the other hand, 47.4% of participants were concerned that they may lose their job because of the pandemic, while 39.4% were bothered by the insufficient supply of surgical masks. These two factors were associated with poorer HRQoL in the physical and psychological health and environment domains. The adverse impact of COVID-19 on individuals is multifactorial, affecting all aspects of HRQoL. In addition to enhancing anti-epidemic efforts, it is equally important to implement public health and social welfare measures, thereby diminishing the adverse impact of COVID-19 on overall well-being.

Health-related quality of life (HRQOL) is an increasingly critical outcome of chronic illness care. However, its disease-independent attributes, particularly its spiritual resilient indicators, for people with Parkinson’s disease (PD) have not been explicitly examined. This study aimed to (i) assess the associations between psychological distress, spiritual resilience and HRQOL, and (ii) examine the mediating effects of spiritual resilience on psychological distress and HRQOL amongst individuals with PD. This is a secondary data analysis of the baseline data of a clinical trial that involved 138 individuals with PD. The subjects completed a structured questionnaire assessing psychological distress in terms of anxiety and depression, spiritual resilience in terms of perceived affliction and perceived equanimity, severity of motor symptoms and disease-specific HRQOL. Analysis by independent t test suggested that distressed individuals with PD demonstrated less spiritual resilience and presented poorer HRQOL than non-distressed individuals with PD. Multiple linear regression models revealed that high emotional distress was associated with low spiritual resilience and poor HRQOL. The mediation analysis found that after simultaneously controlling for the degree of perceived affliction and perceived equanimity, a significant reduction was observed in the direct effect between psychological distress and HRQOL. This result indicated the partially mediating roles of perceived affliction and equanimity in the pathways between psychological distress and HRQOL. In order to enhance HRQOL, PD interventions should address the spiritual resilience of patients in addition to providing psychological care and physical relief of symptoms.

Purpose Parkinson's disease (PD) results in a range of dysfunctions and disabilities as it progresses to later stages. All these not only affect a patient's physical well-being but also emotional, social, and spiritual well-being. To tailor interventions that can address these concerns, this study aimed to examine the impacts of PD on their health-related quality of life (HRQOL). Design A cross-sectional study with 123 PD patients. Methods Measures included the following: Hospital Anxiety and Depression Scale, Unified PD Rating Scale-Motor Examination, Hoehn and Yahr Stage, PD Questionnaire-8. Associating factors of HRQOL was examined using stepwise linear regression. Findings Psychological distress and functional impairment are significantly associated with the HRQOL of the PD population. Psychological distress is associated most to the variance of HRQOL (42.4%). Conclusion Considering that PD is chronic, rehabilitation programs should be applied to address not just functional but also psychosocial needs of PD patients. Clinical relevance Early recognition and management of psychological distress in PD patients is indispensable to promote their HRQOL.

The effects of mind-body exercises on individuals with chronic illnesses have attracted increasing attention. However, little effort had been made to systematically review the effects of these mind-body exercises on individuals with Parkinson's disease (PD). This review aimed to appraise the current evidence of the effects of mind-body exercises on the physiological and psychological outcomes for the PD population.Systematic review and meta-analysis of randomized controlled trials.Four English databases, namely, the EMBASE, Ovid Medline, Psych Info, and Cochrane Library, were searched on January 2016.Studies involving participants with idiopathic PD were included if mind-body exercises were applied and compared with a non-exercise control to improve physiological and psychosocial well-being. The Effective Public Health Practice Project quality assessment tool was used for quality appraisal. RevMan 5.3 was employed to perform this meta-analysis. A subgroup analysis regarding the types and the dose of intervention was conducted to explore the sources of heterogeneity.Ten studies met the inclusion criteria for quality appraisal. The overall methodological rating of these studies indicated that one study was strong; five studies were moderate; and four studies were weak. Nine articles comprising five Tai Chi, two yoga, and two dance studies were included in the meta-analysis. The results of this review showed that mind-body exercises had a large, significant beneficial effect in motor symptoms in terms of UPDRS III for people with mild to moderate PD [SMD=-0.91, 95% CI (-1.37, -0.45), p0.05]. Significant subgroup differences were found among various types of mind-body exercises (p=0.001). Yoga demonstrated the largest and most significant beneficial effect in reducing UPDRS III scores [SMD=-2.35, 95% CI (-3.21, -1.50), p0.01]. The pooled meta-analysis results showed that mind-body exercises had a large, significant effect in improving postural instability in terms of the Berg Balance Scale [SMD=1.48, 95% CI (0.91, 2.06), p0.01] and Timed Up and Go test [SMD=-0.97, 95% CI (-1.46, -0.47), p0.01] and moderate, significant effect in improving functional mobility in terms of the Six-minute Walk test [SMD=0.78, 95% CI (0.35, 1.21), p0.05].This review found that mind-body exercises demonstrated immediate moderate to large beneficial effects on motor symptoms, postural instability, and functional mobility among individuals with mild to moderate PD. However, the effects of mind-body exercises on psychosocial well-being had not been amply investigated, especially for yoga intervention. Future research should address the psychosocial effects of mind-body exercises on the PD population.

Summary Exercise has promising effects on sleep disturbances and quality of life among cancer patients. Aerobic exercises (AE) and mind-body exercises (MBE) have different mechanisms for improving sleep, but whether they are effective remains unclear. This systematic review and meta-analysis is the first to examine the effectiveness of AE and MBE on sleep outcomes, specifically among cancer patients with sleep disturbances. A systematic search of several databases, from inception to January 2018, was conducted. The pooled effect sizes suggested that both AE (standardized mean difference (SMD) = 0.33, 95% confidence intervals (CI): 0.11, 0.54) and MBE (SMD = 0.18, 95% CI: 0.06, 0.30), improved sleep outcomes in cancer patients with poor sleep quality post-intervention. The effects remained significant after 3–6 months for AE, but not MBE. Due to the heterogeneity in AE, future studies should establish the optimal AE prescription. For MBE, future research should study essential components that make the intervention effect sustainable.

Background Psychological distress is prevalent among people with Parkinson’s disease (PD) and aggravates their motor symptoms, thereby leading to increased disability, high healthcare costs, and poor health-related quality of life (HRQoL). The under-recognition and adverse effects of the pharmacological management of anxiety and depression among the PD population are considerable. Thus, adopting a Complementary and Alternative Management (CAM) approach to address this problem is important. Yoga, one of the most common “mind-body” CAM therapies, can improve the psychological wellbeing of people with chronic illnesses. However, limited research on the effects of yoga in people with PD has been conducted. This study will determine the effects of yoga on the psychological wellbeing of people with mild-to-moderate PD and will compare these effects with those of stretching and resistance training exercises. Methods A community-based, single-blind, randomized trial will be conducted. A total of 126 subjects will be recruited and randomly divided into yoga (n = 63) or stretching and resistance exercise (n = 63) groups. For 8 weeks, the yoga group will receive a weekly 90-min session of yoga, and the control group will receive a weekly 60-min session of stretching and resistance exercises. The primary outcome will be the level of psychological distress measured using the Hospital Anxiety and Depression Scale. The secondary outcomes will include the severity of motor symptoms measured by the Movement Disorders Society – Unified Parkinson’s Disease Scale − Part III Motor Examination; mobility, balance, and fall risk measured by the Timed Up and Go test; spiritual wellbeing measured by the Holistic Wellbeing Scale; and HRQoL measured by the Parkinson’s Disease Questionnaire-8. Assessment will be conducted at baseline, 8th, and 20th weeks of follow-ups. Discussion This study will be the first randomized trial to compare the effect of yoga versus stretching and resistance training exercises in a PD population. Results will contribute to the value of yoga as a therapeutic option for managing psychological distress in PD patients. Multiple outcomes including psychological, physiological, and spiritual and HRQoL will also be measured to elucidate the potential mechanisms of yoga. The effect of yoga on people with chronic illnesses will further be elucidated. This information should contribute to future research, practice, and policy related to PD management. Trial registration WHO Primary Registry – Chinese Clinical Trials Registry (ChiCTR): CUHK_CCRB00522 Registered on 8 October 2016; date of approval 19 August 2016. Electronic supplementary material The online version of this article (doi:10.1186/s13063-017-2223-x) contains supplementary material, which is available to authorized users.

IMPORTANCE: Clinical practice guidelines support exercise for patients with Parkinson disease (PD), but to our knowledge, no randomized clinical trials have tested whether yoga is superior to conventional physical exercises for stress and symptom management. OBJECTIVE: To compare the effects of a mindfulness yoga program vs stretching and resistance training exercise (SRTE) on psychological distress, physical health, spiritual well-being, and health-related quality of life (HRQOL) in patients with mild-to-moderate PD. DESIGN, SETTING, AND PARTICIPANTS: An assessor-masked, randomized clinical trial using the intention-to-treat principle was conducted at 4 community rehabilitation centers in Hong Kong between December 1, 2016, and May 31, 2017. A total of 187 adults (aged ≥18 years) with a clinical diagnosis of idiopathic PD who were able to stand unaided and walk with or without an assistive device were enrolled via convenience sampling. Eligible participants were randomized 1:1 to mindfulness yoga or SRTE. INTERVENTIONS: Mindfulness yoga was delivered in 90-minute groups and SRTE were delivered in 60-minute groups for 8 weeks. MAIN OUTCOMES AND MEASURES: Primary outcomes included anxiety and depressive symptoms assessed using the Hospital Anxiety and Depression Scale. Secondary outcomes included severity of motor symptoms (Movement Disorder Society Unified Parkinson’s Disease Rating Scale [MDS-UPDRS], Part III motor score), mobility, spiritual well-being in terms of perceived hardship and equanimity, and HRQOL. Assessments were done at baseline, 8 weeks (T1), and 20 weeks (T2). RESULTS: The 138 participants included 65 men (47.1%) with a mean (SD) age of 63.7 (8.7) years and a mean (SD) MDS-UPDRS score of 33.3 (15.3). Generalized estimating equation analyses revealed that the yoga group had significantly better improvement in outcomes than the SRTE group, particularly for anxiety (time-by-group interaction, T1: β, −1.79 [95% CI, −2.85 to −0.69; P = .001]; T2: β, −2.05 [95% CI, −3.02 to −1.08; P