Self-care and its assessment in the patient–caregiver dyad in Parkinson’s disease: a mixed-method study protocol

BackgroundFamily caregivers of patients with advanced cancer often have poor quality of life (QOL) and mental health. We examined the effectiveness of interventions offering support for caregivers of patients with advanced cancer on caregiver QOL and mental health outcomes.MethodsWe searched Ovid MEDLINE, EMBASE, Cochrane CENTRAL, and Cumulative Index to Nursing and Allied Health Literature databases from inception through June 2021. Eligible studies reported on randomized controlled trials for adult caregivers of adult patients with advanced cancer. Meta-analysis was conducted for primary outcomes of QOL, physical well-being, mental well-being, anxiety, and depression, from baseline to follow-up of 1-3 months; secondary endpoints were these outcomes at 4-6 months and additional caregiver burden, self-efficacy, family functioning, and bereavement outcomes. Random effects models were used to generate summary standardized mean differences (SMD).ResultsOf 12 193 references identified, 56 articles reporting on 49 trials involving 8554 caregivers were eligible for analysis; 16 (33%) targeted caregivers, 19 (39%) patient–caregiver dyads, and 14 (29%) patients and their families. At 1- to 3-month follow-up, interventions had a statistically significant effect on overall QOL (SMD = 0.24, 95% confidence interval [CI] = 0.10 to 0.39); I2 = 52.0%), mental well-being (SMD = 0.14, 95% CI = 0.02 to 0.25; I2 = 0.0%), anxiety (SMD = 0.27, 95% CI = 0.06 to 0.49; I2 = 74.0%), and depression (SMD = 0.34, 95% CI = 0.16 to 0.52; I2 = 64.4) compared with standard care. In narrative synthesis, interventions demonstrated improvements in caregiver self-efficacy and grief.ConclusionsInterventions targeting caregivers, dyads, or patients and families led to improvements in caregiver QOL and mental health. These data support the routine provision of interventions to improve well-being in caregivers of patients with advanced cancer.

Background: Heart failure (HF) dramatically affects the lives of both patients and their caregivers, yet limited research exists examining the relationship between emotional well-being of HF patients and their caregivers. Therefore, we conducted a study to (1) describe and compare the emotional well-being of HF patients and their caregivers, (2) determine if gender differences exist in emotional well-being of patients and caregivers, and (3) identify factors associated with emotional well-being of HF patients. Methods: The emotional well-being of 103 patient-caregiver dyads was assessed using the mental health subscale of the SF-12. Results: Patients were 57.6 ± 12.1 years, predominantly Caucasian (76.7%) and male (67.0%). Caregivers were 59.5 ± 17.6 years, predominantly females (70.9%) and spouses of patients with HF (82.6%). Patients had significantly lower (poorer) emotional well-being scores than caregivers. Both gender and age were associated with patients' emotional well-being; male and younger participants had higher (better) scores than female and older patients (P <.05). In a multivariate model, patient's age, gender, and caregivers' emotional well-being accounted for 54% of the variance in patients' emotional well-being. Conclusion: We found that the emotional well-being of caregivers is associated with the emotional well-being of HF patients. Our findings suggest the need to focus on supporting caregivers and providing them with the strategies they need to support their loved ones with HF.

12026 Background: More than one in ten adults in the US are family caregivers, with cancer among the most common diagnoses of care recipients. Family caregivers of patients with advanced cancer often have poor quality of life (QOL) and mental health. We examined the effectiveness of interventions offering support for caregivers of patients with advanced cancer on caregiver QOL and mental health outcomes. Methods: We searched Ovid MEDLINE, EMBASE, Cochrane CENTRAL, and CINAHL databases from inception through 6/2021. Eligible studies reported on randomized controlled trials for adult caregivers of adult patients with advanced cancer. Meta-analysis was conducted for primary outcomes of QOL, physical well-being, mental well-being, anxiety, and depression, from baseline to follow-up of 1-3 months; secondary endpoints were these outcomes at 4-6 months and additional caregiver burden, self-efficacy, family functioning and bereavement outcomes. Random effects models were used to generate summary standardized mean differences (SMD). Meta-regression was conducted for primary outcomes that were significant for the intervention, assessing for mediation effect modification by caregiver sex and age of patient and caregiver. Type I error was 0.05. PROSPERO Registration: CRD42019136321. Results: Of 12,193 references identified, 56 articles reporting on 49 trials involving 8,554 caregivers were eligible for analysis; 16 (33%) targeted caregivers (mostly psychoeducational or problem-solving interventions), 19 (39%) patient-caregiver dyads (mostly counseling/therapy), and 14 (29%) patients and their families (mostly palliative care teams). At 1-3 month follow-up, interventions had a significant effect on overall QOL (SMD 0.24 (0.10 to 0.39), I2 = 52.0%), mental well-being (SMD 0.14 (0.02 to 0.25), I2 = 0.0%), anxiety (SMD 0.27 (0.06 to 0.49), I2 = 74.0%), and depression (SMD 0.34 (0.16 to 0.52), I2 = 64.4%), compared to standard care. At 1-3-month follow-up, a larger age difference (older patient and younger caregiver) was associated with a greater positive effect on QOL (p = 0.04) and depression (p = 0.02). In narrative synthesis, interventions demonstrated improvements in caregiver self-efficacy and grief. Conclusions: Interventions targeting caregivers, dyads, or patients and families led to improvements in caregiver QOL and mental health outcomes. These data support the routine provision of available interventions to support caregivers of patients with advanced cancer.

Background/Aims Rheumatoid arthritis (RA) is a systemic chronic autoimmune disease. It presents as an inflammatory arthritis with varying severity and symptoms like joint pain, joint stiffness, fatigue, sleep disturbances, dryness, etc reducing the quality of life (QoL).1 Patients with RA experience impairment in all aspects of QoL (limitation of physical function, disability and pain) and mental health (anxiety and depression etc). Depression is two times more common in RA patients and intriguingly a bi-directional relationship with RA has been shown in cross-sectional studies.2 Patients with RA are more likely to suffer from anxiety, depression and low self-esteem, with high levels of associated mortality and suicide.3 There is an imperative need to improve the QoL and emotional wellbeing for these patients. Digitalization plays an incredibly significant role in health care, not only in monitoring but also in self-management of disease and symptoms. The aim of the study is to assess the impact of a digital health program on the emotional wellbeing and QoL of patients suffering from RA. Methods An intervention trial with a patient support program was delivered using Wellthy Care digital platform over a period of 16 weeks. Recruitment of 30 patients was done using a convenient sampling method. Patients who were diagnosed with RA were included in the trial. Patients who were under 18, pregnant/lactating, and with hearing disability were excluded. The program included interventions such as physiotherapy sessions, CBT (cognitive behavioural therapy) counselling, nutrition counselling, health and lifestyle coaching, symptom monitoring, disease awareness and self-management training. WHO-5 wellbeing score4, a widely used questionnaire for assessing subjective psychological well-being was administered along with a proprietary questionnaire for QoL by Wellthy. Results The Mean emotional wellbeing score of patients at baseline was 10.13 and at endline was 18.13. The program positively impacted the emotional wellbeing and quality of life by 78.97% and 41.18 % respectively. The mean Qol score of the patients at baseline was 12.82 and at endline was 18.1. The Paired T-test witnessed significant improvement in emotional wellbeing scores, Qol scores following RA patient support program from 10.13±4.65 to 18.13±3.04, an improvement of 8.0±1.61(p &amp;lt; 0.01), from 12.82±2.87 to 18.1±1.5, an improvement of 5.28±1.37 (p &amp;lt; 0.01), respectively. Conclusion The RA support program delivered by Wellthy therapeutics proved to be highly effective in improving emotional wellbeing and QoL for RA patients. This health program had a great impact on several dimensions of patient-reported outcomes for emotional wellbeing and QoL. Digital health technology has the potential to bridge the gap in current care delivery of chronic and debilitating conditions such as RA. Disclosure S. Bhalla: None. A. Shah: None. B. Sinha: None. S. Damse: None. P. Thiyagarajah: None. K. Soulat: None.

Recent data have shown that patients with epilepsy experience reduced quality of life and poor sleep quality, which are also closely related to heart rate variability. For the first time, we investigated the relationship between heart rate variability and quality of life and sleep in patients with epilepsy. Twenty-seven patients with medically controlled epilepsy, 23 patients with drug-resistant epilepsy, and 36 healthy subjects were included in this cross-sectional prospective study. Heart rate variability analysis was conducted using a 24-h rhythm Holter device in all cases. The quality of life in epilepsy-31 questionnaire and Pittsburgh Sleep Quality Index questionnaire were used for patients with epilepsy. Compared to the control group, patients with epilepsy had lower heart rate variability parameters, including standard deviation of normal-to-normal, standard deviation of normal-to-normal index, standard deviation of the averages of the normal-to-normal, root mean square of successive differences, and percentage of NN Intervals >50 ms (pNN50) values (p<0.001). Heart rate variability parameters and sleep scores were similar between the drug-resistant epilepsy and medically controlled epilepsy subgroups (p>0.05). In addition, quality of life in epilepsy-31 subscores were significantly lower in drug-resistant epilepsy than in medically controlled epilepsy in the subdomains of seizure worry (p=0.001), overall quality of life (p=0.004), emotional well-being (p=0.005), and cognitive functioning (p=0.007). There was a significant positive correlation between standard deviation of the averages of the normal-to-normal and cognition (r=0.335; p=0.017); maximum QT and emotional well-being (r=0.286; p=0.046); and maximum QTc and emotional well-being (r=0.292; p=0.042) in patients with epilepsy. We found that low heart rate variability was more common in patients with epilepsy. Quality of life was also highly impaired in drug-resistant epilepsy, and low heart rate variability correlated with low cognition and emotional well-being in patients with epilepsy.

Parkinson's disease (PD) is a chronic and progressive neurodegenerative condition due to the degeneration of nigral dopaminergic cells. Both motor and non-motor symptoms (NMS) of PD produce a marked impairment in PD patients' quality of life (QoL), but contrary to motor features, NMS do not improve with dopamine replacement. Novel therapeutic interventions for PD have successfully controlled most motor manifestations of PD, but the management of NMS is still challenging. Since NMS have a negative impact on the QoL of PD patients, researchers are currently looking for drugs that can modulate the activity of neurotransmitter systems other than dopamine in the hope that can alleviate NMS in PD. Among the recently approved drugs for patients experiencing fluctuations in motor symptoms, safinamide stands out as an effective add-on therapy to levodopa. Safinamide is a monoamine oxidase type-B inhibitor (MAOB-I), with proven efficacy in reducing motor fluctuations. Its distinctive mechanism of action impacts dopaminergic pathways via MAOB inhibition and glutamatergic pathways by blocking sodium and calcium channels. Findings from Phase III clinical trials, meta-analysis, post-hoc analysis, and real-life experiences indicate that safinamide benefits motor symptoms such as tremor, bradykinesia, rigidity, and gait. Additionally, it shows promise for improving NMS like fatigue, pain, mood, and sleep disturbances in patients with PD. In this article, the authors explore the impact of safinamide on patient-reported outcomes in PD. A thorough search was conducted on PubMed focusing on studies published between 2018 and 2023 in English. The inclusion criteria encompassed clinical trials, randomized controlled trials, systematic reviews, meta-analyses, and reviews. The search strategy revolved around the implementation of MeSH terms related to safinamide and its impact on the quality of life in PD. Our data strongly support the improving effect on QoL, reducing the disabling NMS reported in patients with PD.

Non-motor symptoms are prevalent, disabling, and difficult to treat at all stages of Parkinson's disease (PD). Whereas current deep brain stimulation (DBS) for PD targets motor symptoms, quality of life improvement, or lack thereof, is often largely determined by non-motor symptoms. So far, the effect of DBS on non-motor PD symptoms is insufficient, and neuromodulation targeted specifically at improving non-motor PD symptoms has been largely unaddressed. In this review, we provide a comprehensive overview of the effect of DBS on non-motor PD symptoms and discuss DBS-induced non-motor side effects including apathy and hypomania. We highlight the distinct neuroanatomical and temporal dynamics of these non-motor PD aspects. With the recent emergence of sensing-enabled DBS devices, we propose that research into responsive neuromodulation targeted specifically at non-motor symptoms is now feasible and timely. We outline potential non-motor adaptive DBS (aDBS) strategies that could be tested with currently available hardware. We conclude by highlighting important challenges that would need to be addressed for implementing aDBS for non-motor symptoms in PD. These include physiomarker validation, optimization of aDBS algorithms and control policies, the need for technological innovations, and incorporating ethical considerations. This review aims to provide a roadmap for clinicians and researchers to accelerate the development of non-motor aDBS in PD. © 2025 International Parkinson and Movement Disorder Society.

Administration of botulinum neurotoxin A (BONT/A) is a common and effective treatment of blepharospasm. There is, however, no information regarding the emotional and social well-being of patients with blepharospasm and patient acceptance of BONT/A therapy. The purpose of this study was to investigate aspects of quality of life of patients with blepharospasm and level of patient satisfaction with treatment. Fifty-one patients with blepharospasm who had been treated with BONT/A for years completed a questionnaire providing information about quality of life. Results revealed reductions in social and emotional well-being of patients but, nonetheless, good acceptance of BONT/A therapy. The positive effects of BONT/A therapy were, however, accompanied by fear of a decreasing effect of BONT/A injections. Although the objective findings following BONT/A injections in the treatment of blepharospasm are appreciated by the patients, their well-being is affected by fears and depression.

Purpose: The aim of this study was to investigate the relationship between neutrophil-to-lymphocyte ratio (NLR), an inflammation marker, and nonmotor symptoms, such as fatigue, sleep disturbances, and overall quality of life, in Parkinson’s disease (PD). Materials and Methods: This study included 60 patients diagnosed with PD (17 female and 43 male). Fatigue was assessed using the Parkinson’s Disease Fatigue Scale (PFS-16), sleep quality using the Parkinson’s Disease Sleep Scale (PDSS), and quality of life using the Parkinson’s Disease Questionnaire-8 (PDQ-8). Neutrophil and lymphocyte counts were extracted from the complete blood count results, and the NLR was calculated. Results: A moderate, negative correlation was observed between fatigue and sleep quality; a moderate, positive correlation was observed between quality of life, motor rating, and disease staging; a moderate, negative correlation was observed between sleep quality and quality of life; a weak, negative correlation was observed between sleep quality, motor rating, and disease staging; and a weak, positive correlation was found between quality of life, motor rating, and disease staging. No significant relationship was observed between NLR and nonmotor symptoms in PD. Conclusion: Further prospective studies with larger samples or case–control designs are warranted to explore the potential clinical utility of a simple, cost-effective biomarker, such as NLR, in assessing PD symptoms and disease progression.

BackgroundCancer and its treatment can result in psychological distress in both adults with cancer and in their family caregivers. This psychological distress acts as a significant adverse factor in patient-caregiver dyads. The study purposes included: (i) to assess anxiety and depression in adults with cancer and their family caregivers, and examine the dyadic relationship of anxiety and depression in patient-caregiver dyads; (ii) to investigate factors that may modify these relationships; and (iii) to explore the impact of anxiety and depression on patient-caregiver dyad quality of life (QOL).MethodsThis was a secondary analysis of a cross-sectional study. Participants consisted of 641 patient-caregiver dyads. Participants completed a survey assessing adults with cancer-related, family caregiver-related, and family-related variables using a demographic/clinical information sheet. In addition, anxiety/depression and QOL were assessed by using the Chinese version of the Hospital Anxiety and Depression Scale and SF-12 respectively. Data were analyzed by using descriptive statistics, Pearson correlations, subgroup analysis, and the Actor-Partner Interdependence Model.ResultsNearly one-third of participants had experienced anxiety and depression. Adults with cancer and family caregivers experienced a similar degree of anxiety and depression. Correlations (r) of anxiety and depression between patient-caregiver dyads ranged from 0.25 to 0.32. Various factors influencing the anxiety and depression relationship between patient-caregiver dyads were identified, including adults with cancer-related (e.g., age, gender, marital status, level of being informed about the disease, different types of cancer and treatment), family caregiver-related (e.g., being the spouse of a patient, duration in their role as a family caregiver, and amount of time spent on caregiving each day), and family-related (family relationship pre- and post-cancer, financial burden on the family due to cancer treatment) variables. To some extent, both actor and partner effects were identified for anxiety and depression on the QOL of patient-caregiver dyads.ConclusionsStudy findings call attention to anxiety and depression, as well as related factors, in patient-caregiver dyads. The underlined essential components and focus of intervention, which will be developed to decrease psychological distress and improve QOL in patient-caregiver dyads, included individual characteristics of patient-caregiver dyads, family relationship, and anxiety and depression in their counterparts.

BackgroundThe majority of persons with dementia (PWD) are mainly cared for by their family members in the home. Evidence is however scarce on family caregivers’ psychosocial burden and quality of life in Asian countries including Malaysia. This study describes the baseline data of a telephone-delivered psychoeducational intervention study and examines the determinants of outcome measures (caregiver burden, depressive and anxiety symptoms, quality of life and caregiving self-efficacy) among Malaysian family caregivers to PWD.MethodsThis was a cross-sectional study originated from the baseline survey of a randomized control trial of 121 family caregivers recruited from lists of PWD who were registered at memory and psychiatry clinics in three tertiary care hospitals in Malaysia. The participants were assessed for caregiver burden by the Zarit Burden Interview, depressive and anxiety symptoms by the Hospital Anxiety and Depression Scale, quality of life by the Control, Autonomy, Self-Realization, and Pleasure Scale, and caregiving self-efficacy by the Revised Scale for Caregiving Self-Efficacy.ResultsPrevalence of caregiver burden was 69.4%, depressive symptoms 32.2% and anxiety symptoms 32.2%. Family caregivers to PWD having perceived peer support e.g., social/family/friend/significant other supports were less likely to report caregiver burden, depressive and anxiety symptoms, and more likely to report higher levels of quality of life and caregiving self-efficacy. Being married and PWD’s ability to self-care were associated with lesser likelihood of experiencing caregiver burden, depressive and anxiety symptoms. The other determinants of greater probability of reporting better quality of life were caregivers’ employment and having Islamic faith. Marital status (married), PWD’s ability to self-care, spousal relationship with PWD and shared caregiving process were associated with higher likelihood of reporting caregiving self-efficacy.ConclusionCaregiver burden, depressive and anxiety symptoms are prevalent in family caregivers to PWD in Malaysia. Social support and caregiving related factors influence family caregivers’ quality of life and caregiving self-efficacy. Implementing psychoeducational intervention and support in the psychiatry and memory clinics may help improve the psychosocial burden, quality of life and caregiving self-efficacy in family caregivers of PWD.Trial registrationISRCTN14565552 (retrospectively registered).

BackgroundMany critically ill patients experience moderate to severe acute pain that is frequently undetected and/or undertreated. Acute pain in this patient cohort not only derives from their injury and/or illness, but also as a consequence of delivering care whilst stabilising the patient. Emergency nurses are increasingly responsible for the safety and wellbeing of critically ill patients, which includes assessing, monitoring and managing acute pain. How emergency nurses manage acute pain in critically ill adult patients is unknown. The objective of this study is to explore how emergency nurses manage acute pain in critically ill patients in the Emergency Department.MethodsIn this paper, we provide a detailed description of the methods and protocol for a multiphase sequential mixed methods study, exploring how emergency nurses assess, monitor and manage acute pain in critically ill adult patients. The objective, method, data collection and analysis of each phase are explained. Justification of each method and data integration is described.DiscussionSynthesis of findings will generate a comprehensive picture of how emergency nurses’ perceive and manage acute pain in critically ill adult patients. The results of this study will form a knowledge base to expand theory and inform research and practice.

BackgroundParkinson’s disease (PD) is a neurodegenerative disease with motor and non-motor symptoms affecting the quality of life. This study aimed to investigate the effects of the Lee Silverman Voice Therapy (LSVT)-BIG rehabilitation program via telerehabilitation on quality of life, motor and non-motor symptoms in people with Parkinson’s disease (PwPD), and their correlation with each other.MethodsFifteen patients with mild-to-moderate PD (Hoehn and Yahr stages 1–3) were included in the LSVT-BIG exercise program with remote access for 16 sessions over four weeks. Motor and non-motor experiences before and after the program were evaluated with MDS-UPDRS parts 1, 2, and 3 and quality of life with PDQ-39. The correlation between MDS-UPDRS parts and PDQ-39 subgroups was examined.ResultsFollowing the application of the LSVT-BIG rehabilitation program with remote access, MDS-UPDRS parts 1, 2, and 3 scores and PDQ-39 summary index (PDQ-39 SI) and subgroup scores (excluding social support) were improved. A moderate–strong correlation was determined between MDS-UPDRS parts 1 and 2 and the PDQ-39 parameters of the patients.ConclusionBoth motor and non-motor symptoms may be associated with the quality of life in PD. We have concluded that LSVT-BIG treatment via telerehabilitation can improve motor and non-motor symptoms along with the quality of life in PwPD.

Purpose. To describe the level of caregiver strain and factors associated with caregiver self-efficacy and quality of life (QoL) in a community cohort with multiple sclerosis (MS).Method. A cross-sectional survey of 62 informal caregivers and 101 participants with confirmed MS and quantified physical and cognitive disability recruited from a tertiary hospital MS database. Structured interviews conducted at home using standardized assessments to measure: (i) Caregiver strain and subjective burden of care; (ii) participant with MS and caregiver QoL and self-efficacy; and (iii) participant with MS level of depression, anxiety and stress.Results. The mean caregiver age was 54 years (range 37 – 62). The mean caregiver strain score was 5.63 (SD 3.63). Twenty-six of 62 (42%) caregivers reported strain for items such as emotional adjustments, demands on time, change in personal plan and disrupted sleep. Caregiver burden was higher in those caring for the more severely affected persons with MS, especially those with higher depression, anxiety and stress levels. The caregiver strain correlated with a lower QoL in both the person with MS and their caregiver, but not with their self-efficacy scores.Conclusion. Caregivers of persons with MS reporting high levels of caregiver strain experienced a lower QoL and were caring for persons with MS with a lower QoL and higher levels of depression and anxiety. Interventions to reduce caregiver strain and burden in those at risk are necessary to reduce poor outcomes among both caregivers and care recipients with MS.

Few studies have explored the inter-relationships of sources of social support and caregiving self-efficacy with caregiver burden and patient’s quality of life among patients with palliative care needs and their caregivers. This study tested the associations of two sources of social support (family and friends) and the mediating role of caregiving self-efficacy on caregiver burden and patient’s quality of life. A convenience sample of 225 patient–caregiver dyads recruited between September 2016 and May 2017 from three hospitals in Hong Kong was included in the current analysis. Results showed that the final model provided a satisfactory fit (SRMR = 0.070, R-RMSEA = 0.055 and R-CFI = 0.926) with the data, as good as the hypothesized model did (p = 0.326). Significant associations were detected. Family support had a significant negative indirect effect on caregiver burden and a significant positive indirect effect on patient’s quality of life through caregiving self-efficacy, whereas friend support had a significant positive direct effect on caregiver burden but a minimal effect, if any, on patient’s quality of life. These findings emphasized (1) the importance of caregiving self-efficacy in improving caregiver burden and patient’s quality of life and that (2) sources of social support may be an important dimension moderating the associations of caregiving self-efficacy with caregiver burden and patient’s quality of life.