Quality Of Life For People Research Articles

E-Health Interventions for Managing Spine Pain—Benefits for Pain, Quality of Life, Catastrophizing and Fear Avoidance Beliefs: An Overview of Systematic Reviews With Meta-Analysis

OBJECTIVE: To summarize the effectiveness of eHealth interventions for improving pain, physical disability, psychological factors, and the quality of life for people with spine pain. DESIGN: Overview of systematic reviews. LITERATURE SEARCH: CINAHL, Embase, PubMed, and SPORTDiscus e-databases were searched. STUDY SELECTION CRITERIA: Systematic reviews with meta-analysis of randomized clinical trials evaluating any type of eHealth were included. DATA SYNTHESIS: AMSTAR 2 was used to assess the methodological quality of included reviews. The degree of overlap between reviews was calculated. RESULTS: Sixteen systematic reviews were included. Of them, thirteen reviews were exclusively focused on back pain or low back pain. Exercise and psychological interventions were the primary contents of eHealth interventions. In general, eHealth interventions based on physical exercise may improve the quality of life of people with low back pain. eHealth interventions based on cognitive behavioral therapy may reduce pain catastrophizing and fear-avoidance beliefs for physical activity for people with low back pain. eHealth interventions based on multidisciplinary approaches including physical exercise may reduce low back pain. Few systematic reviews used the GRADE system to evaluate the certainty of evidence, and few specified the content of eHealth interventions. CONCLUSION: eHealth interventions may improve the quality of life, pain catastrophizing, fear-avoidance beliefs, for people with low back pain. It is unclear, based on available systematic reviews, how clinicians should deliver eHealth interventions for people with spine pain (e.g., neck pain or low back pain).

Quality of life in people with multiple sclerosis vs general population: differences increase by age

Abstract Background To enhance health care for chronically ill people, it is crucial to understand the impact of their disease on health-related quality of life (HRQoL). More than 240,000 people in Germany live with multiple sclerosis (PwMS), the most common immune-mediated neurodegenerative disease of the central nervous system. Little is known about HRQoL in PwMS in comparison to the general population and by subgroups. Methods In 2021, 6,928 statutorily-insured PwMS aged ≥18 years and living in the federal state of Lower Saxony, Germany, were invited to take part in an online survey. The German EQ-5D-5L value set was used to analyse HRQoL by index values. Descriptive subgroup analyses were conducted (age, sex) and compared to a general German reference population (Grochtdreis et al. 2019, DOI: 10.1007/s10198-019-01054-1). Mann-Whitney-U- or Kruskal-Wallis-tests were performed as appropriate. Results Of 1,935 respondents (response rate 27.9%), 1,916 PwMS were included in the current preliminary complete case analysis. HRQoL is reduced in PwMS compared to the general population: Mean (M) 0.67 vs. M 0.88, respectively. While no significant differences by sex were found in PwMS (male: M 0.66 vs. female: M 0.68, p = 0.1), HRQoL decreased with increasing age (p < 0.001). The reduction in HRQoL is more pronounced in PwMS than in the general population (difference between means 0.53 in 18-24 years old to ≥ 75 years old PwMS vs. 0.14 in the reference population, respectively). Conclusions PwMS report an overall lower level of HRQoL compared to the general population. Increasing age correlates with a substantial decrease of HRQoL in PwMS. Targeted research is needed to improve HRQoL of this vulnerable population. Key messages • The decline in HRQoL with increasing age is more pronounced in PwMS than in the general population in Germany. • Further research should focus particularly on the extent to which MS-related factors are solely attributable for the considerable decline of HRQoL in PwMS.

Marco Deiana.

"My biggest inspiration is to contribute, even in a small way through my research, to improving the quality of life for people suffering from illnesses… I'm always in a good mood when I go fishing-it is the perfect way to relax and recharge…" Find out more about Marco Deiana in his Introducing… Profile.

Quality of life in people with sickle cell disease treated with automated red blood cell exchange.

This review aims to explore the impact of sickle cell disease (SCD) on patients' quality of life (QoL) and the effectiveness of different transfusion modalities, particularly automated red blood cell exchange (aRBCX), in managing the factors that impact QoL. A systematic search was performed in PubMed to retrieve articles with data on QoL in SCD patients treated with aRBCX during the last 20 years. A targeted search for medical guidelines and a free search were added. When assessing the impact of the transfusion modality on the QoL of patients with SCD, some studies indicated an improvement in health-related QoL when using aRBCX while others reported no differences. The benefits of aRBCX include a decrease in length of hospital stay, pain-related hospitalizations and procedure time. The drawbacks of aRBCX were also identified, including an increased number of procedure-related complications (despite the overall number of complications showing no significant differences) and a more complex vascular access. Chronic red blood cell exchange favours psychosocial factors such as anxiety and social functioning, but the impact of using aRBCX in these parameters is not determined yet. aRBCX, known to be an efficient procedure to manage SCD, appears to be promising in improving patients' QoL. However, more comprehensive studies incorporating patient-reported outcomes are needed to fully understand the impact of different transfusion modalities on QoL in SCD patients. An integrated care approach, including psychological support and pain management, may further enhance QoL.

Phytocannabinoids restore seizure-induced alterations in emotional behaviour in male rats.

Epilepsy often presents with severe emotional comorbidities including anxiety and abnormal fear responses which impose a significant burden on, and reduce, quality of life in people living with the disease. Our lab has recently shown that kindled seizures lead to changes in emotional processing resulting from the downregulation of anandamide signalling within the amygdala. Phytocannabinoids derived from the Cannabis sativa plant have attracted a lot of interest as a new class of drugs with potential anticonvulsant effects. Among the wide number of compounds occurring in Cannabis sativa, Δ9- tetrahydrocannabinol (THC), the one responsible for its main psychoactive effects, and the nonpsychoactive cannabidiol (CBD) have been extensively examined under pre-clinical and clinical contexts to control seizures, however, neither have been assessed in the context of the management of emotional comorbidities associated with seizure activity. We used two behavioural procedures to assess anxiety- and fear-like responding in adult male Long-Evans rats: elevated plus maze and auditory fear conditioning. In agreement with previous reports, we found seizure-induced increases in anxiety- and fear-like responding. These effects were reversed by either CBD (vaporized) or THC (oral). We also found that antagonism of serotonin 1 A receptors prior to CBD exposure prevented its protective effects. Phytocannabinoids offer a novel and reliable opportunity to treat seizure induced comorbid emotional alterations.

Men with HIV have increased alveolar bone loss

BackgroundPeriodontal health in men with HIV remains understudied, despite suggestions of associations between HIV infection and gingival pocketing, periodontal attachment loss, and gingival inflammation. As antiretroviral therapy (ART) has improved the quality of life for people living with HIV (PLWH), aging-related risk factors and comorbidities, including periodontitis, have emerged. This study aims to assess alveolar bone height, gingival crevicular fluid (GCF) cytokines, and periodontal disease activity in men with and without HIV.MethodsNinety-three men (50 HIV+, 43 HIV-) aged 35–70 years were recruited from Columbia University Irving Medical Center clinics. Periodontal examination, GCF collection, and intraoral radiographs were collected. Statistical analysis was conducted with t-tests for continuous variables and chi-squared tests for categorical variables.ResultsWhile no significant differences were observed in bleeding on probing, clinical attachment loss and pocket depths, men with HIV exhibited significantly greater alveolar crestal height on radiographs compared to men without HIV (HIV + 3.41+/-1.35 mm, HIV- 2.64+/-1.01 mm; p = 0.004), reflecting greater alveolar bone loss.ConclusionsMen living with HIV demonstrate increased alveolar bone loss compared to those without HIV, possibly mediated by elevated IL6 levels. These results underscore the importance of comprehensive oral health management in PLWH and highlight the need for further research understanding the mechanisms linking HIV infection, cytokine dysregulation, and periodontal health.

Exploring the Impact of Game Elements and Technological Platforms on Dementia Rehabilitation: A Scoping Review

One effective strategy to improve the quality of life for people with dementia (PWD) is rehabilitation, though patients often show reluctance due to the disease’s effects. A trending motivational approach is gamification. However, most research in this field has focused on the medical or technical aspects of system development, with less attention given to the role of game elements in the patient experience. In this study, a scoping review based on the PRISMA method was conducted on gamified rehabilitation systems, focusing on gamification elements, and interaction with technological platforms. By reviewing 46 studies, we extracted game elements based on the gamification pyramid, technological platforms, and rehabilitation methods, and compared them with previous studies on PWD interactions. This analysis identified opportunities and challenges for future research. Additionally, nine factors to improve user experience in the design of gamification systems for dementia rehabilitation were presented based on the review results.

Stigma, support, and messaging for people recently diagnosed with HIV: a qualitative study.

Background Despite advances in antiretroviral treatment and the message of undetectable equals untransmittable (U=U), there remain challenges related to stigma and quality of life for people living with HIV. This study aimed to understand the experiences of people recently diagnosed with HIV at a clinical service, to guide insights into how to improve care and support in the contemporary treatment era. Methods This qualitative study involved semi-structured interviews with individuals diagnosed with HIV between 2016 and 2021 at RPA Sexual Health service (a sexual health clinic in Sydney, Australia), or who were referred to the clinic directly after diagnosis. Participants were recruited through a short survey questionnaire between May 2022 and May 2023, and interviews were transcribed and analysed thematically. Results Fourteen participants were interviewed for the study, eight of whom were born outside of Australian or Aotearoa New Zealand. We found that diagnosis was still a shocking event requiring careful support; that there was ongoing stigma, shame, and reduced sexual confidence following diagnosis; and that beyond initial diagnosis, some people would benefit from ongoing support and education about key concepts regarding HIV treatment. Conclusion Our study suggests that HIV diagnosis remains disruptive, and sexual stigma is a key issue negatively impacting quality of life. Health providers can mitigate these issues by supporting the ongoing psychosocial needs of people with HIV in the early period of adjusting to HIV diagnosis, and referring to peer-based and other services. Initiating conversations about sex and dating and checking understandings of key health messages over time may promote improved care.

At home e-based physical exercise programs in patients with multiple sclerosis: a scoping review.

Physical exercise (PE) improves symptoms and quality of life in people with multiple sclerosis (pwMS). However, incorporating PE into daily lives of pwMS pose difficulties. As an alternative to in-person PE, e-based PE has been proposed because of its advantages in terms of accessibility and convenience. To synthesize existing evidence on e-based PE at home in adults MS and discuss study designs, rehabilitation programs, intervention effects and possible knowledge gaps. In this scoping review, a systematic search in electronic databases including Embase, Medline, CINAHL and Cochrane Library was conducted following the PRISMA guidelines. Peer-reviewed articles in English on e-based PE interventional studies at home involving adult pwMS, published from 2008 until April 2023, were identified and exported to Covidence. Data from the included studies were extracted and synthesized. This scoping review identified different types of e-based PE interventions used in pwMS across different study designs, but when evaluating intervention effects, this review focused solely on randomized controlled trials (RCTs). A total of 3,006 studies were retrieved and 179 studies were screened in full text, resulting in the inclusion of 54 studies with a total of 2,359 pwMS. Of those, 33 were RCTs and three were qualitative studies. The studies reported on various e-based interventions including video-based programs, telerehabilitation, and web-based programs. The interventions evaluated muscle strength, cardiorespiratory fitness, walking speed, endurance, balance, and fatigue, as well as symptoms of depression and cognitive dysfunction. E-based PE interventions at home in RCTs demonstrated improvement of depressive symptoms and anxiety, while inconsistent results were reported for fatigue, walking speed and balance. No significant benefits were observed regarding dexterity. Results were generally heterogeneous and were limited by small sample sizes. Several limitations were identified, such as lack of physical activity assessment prior to the intervention and poor reporting of duration, intensity, frequency and adherence to e-based PE interventions. E-based PE interventions in pwMS may improve MS-related symptoms, but the study quality is generally low, and findings are often inconsistent. Several important limitations of the existing literature have been identified in the present review, which can guide future research.

Adapting behavioral activation for patients receiving medications for opioid use disorder in primary care: a pilot study.

Effective adjunctive therapeutic treatments for patients with opioid use disorder (OUD) on medication for OUD (MOUD) in primary care settings are needed to address high rates of mental illness and stress. Behavioral activation (BA) is a brief, evidence-based therapy that has potential to improve quality of life in people with OUD. The purpose of this pilot study was to evaluate the feasibility and acceptability of values-based BA (VBA) as an adjunct treatment for patients receiving MOUD in primary care. Participants were recruited for a single-arm pilot trial of BA in a primary care setting. VBA was adapted for people with OUD and included 4-6 sessions delivered over 12 weeks with a behavioral health consultant, either in-person or virtually. Feasibility was assessed as recruitment percent and pace and retention percent. Acceptability was assessed with the Client Satisfaction Questionnaire-8 (CSQ-8). Participants completed self-report measures of well-being, depression, substance use, and psychological processes of change at baseline, mid-intervention (6-weeks), and post-intervention (12-weeks). Participants engaged in a brief interview about their experiences at the end of the intervention. Twenty-one participants enrolled in the intervention (66.7% female, M age = 44.0 years, 19% of those invited). Participants completed an average of 5.1 BA sessions (SD = 1.6) and most (90%) were retained through 12 weeks. Participants rated the intervention as highly acceptable on the CSQ-8 (M = 30.4/32.0, SD = 1.6). In qualitative interviews, participants reported that working with the therapist and setting values-based goals were helpful, while also recommending more tailoring to patients' needs and offering the program early in MOUD treatment. Preliminary efficacy data suggest the program was associated with small to moderate improvements in life satisfaction (Cohen's d = 0.25) and positive affect (d = 0.62), whereas there were no changes in depression (d = 0.09) or negative affect (d = -0.07) in a group with low depression at baseline. VBA adapted for patients on MOUD in primary care was feasible to deliver and acceptable to participants. Minor modifications to the target population and treatment manual could increase the program's impact. Future studies will test the efficacy of the intervention in improving quality of life and OUD treatment outcomes. https://clinicaltrials.gov/study/NCT05262725, Unique ID: NCT05262725.

Multiplexed Piezoelectric Electronic Skin with Haptic Feedback for Upper Limb Prosthesis

AbstractUpper limb amputation severely impairs tactile perception, limiting daily activities. Developing a near‐natural replacement with prosthetic devices requires improving user sensory experiences during object interactions. The ideal upper limb prosthesis should provide real‐time sensory feedback, mirroring natural experiences. Current prostheses struggle with providing adequate tactile feedback due to sensory limitations. Inspired by the sensory properties of skin, we present a micro‐fabricated, multiplexed electronic skin (e‐skin) with actuators for sensory feedback in upper limb amputation. The piezoelectric‐capacitive sensor array detects static pressure, temperature, vibration, and texture, with integrated actuators stimulating the skin to provide real‐time feedback. The sensors integrate with actuators via readout electronics, making the system standalone and easy to use. The flexible, compact sensor array design (two pixels within a 1 cm² footprint) detects a wide range of pressure (0.5–10 kPa), temperature (22–60 °C), vibration (35–100 Hz), and texture (2.5–45 Hz), suitable for daily use. The e‐skin, attached to a prosthetic finger, is tested for feasibility on human volunteers with wrist‐mounted actuators. Statistics are used to quantitatively assess system performance. The integration of multiplexed sensors and actuators enhances tactile feedback, improving the quality of life for people with upper limb amputations.

Impact of LEGO® Based Therapy on Skills Development and Quality of Life in People with Neurodevelopmental Disorders.

This research sets out to evaluate the impact of LEGO® Based Therapy on the development of skills and quality of life for people with neurodevelopmental disorders, as well as for those close to them. Widely used in the United States and the United Kingdom for almost 20 years, LEGO® Based Therapy was developed by Daniel Le Goff, psychologist licensed in Florida and New Jersey who has practiced for over 20 years with children, adolescents and adults with developmental disabilities, including autism, Asperger's syndrome and congenital disabilities, as well as acquired and traumatic brain injuries. Daniel Le Goff has extensive experience as a consultant and expert witness, as well as in direct clinical services, including applied behaviour analysis, cognitive behaviour therapy and cognitive rehabilitation. In 2008, Gina Gómez de la Cuesta completed her PhD at the Centre for Autism Research at the University of Cambridge, where she led and evaluated LEGO®® Based Therapy under the supervision of Daniel LEGO®ff, Simon Baron-Cohen and Ayla Humphrey. She is a teacher and psychologist by training and has worked at the National Autistic Society as Head of Action Research. She founded Play Included in 2018, with support from the Cambridge Social Ventures incubator programme, University of Cambridge to support children's development through play and promote LEGO®Therapy. Initially designed to improve the social skills of people with autism spectrum disorders but no intellectual disabilities, its effectiveness has been demonstrated by studies targeting this specific population. However, no research has yet been carried out in France on its application to a wider population, including various forms of neurodevelopmental disorder. Furthermore, existing studies have not considered the impact on the quality of life of beneficiaries and their families, which this thesis sets out to examine.

8205 Within day Symptoms Of Adrenal Insufficiency Predict Reduced Quality Of Life And Adrenal Crises In 712 MyAI Registry Participants

Abstract Disclosure: J.G. Kallet: None. W. Hover: None. A. Krein: None. M. Lowe: None. M.F. Slovick: None. G. Kinney: None. S. Majka: None. K. Warren: None. S. Watts: None. M.T. McDermott: None. E.A. Regan: None. Multiple studies have shown reduced quality of life in people with adrenal insufficiency based on 1- 4 week recall of symptoms. However, “within-day” symptoms are commonly reported to treating physicians, and there is no clear understanding of what these symptoms represent for quality of life or adequate disease management. Lack of adequate cortisol has been postulated as a factor for both persistent symptoms and reduced quality of life but dose adjustment is not typically prescribed. Within-day symptoms are similar to those reported prior to treatment, and include lack of energy, nausea, vomiting, anorexia, headache, dizziness, shakiness, muscle cramps, and cognitive impairments. Addressing the relationship between “within-day” symptoms and replacement dosing could improve disease management. Further, understanding the association of within-day symptoms to outcomes (quality of life and adrenal crises) provides an impetus to change the standard of care. Individuals enrolled in the MyAI registry provided information about “within-day” symptoms. These included energy to accomplish tasks, cognitive symptoms, and overall symptoms. The questions were scored with increased values representing greater and more frequent symptoms and were summed to create a severity score. Patients also reported adrenal crisis within the past year and completed the AddiQoL as quality of life over the past 4 weeks.Responses were obtained from 712 adult registry participants - 84% female, age range 23-89, mean 51.2 (15.2) years - and 47% reported an adrenal crisis within the past year. Within-day symptom score range was 3-15 points with mean 7.9 and SD of 2.96. Higher “within-day” symptom scores were associated with stepwise reductions in the AddiQoL (worse quality of life). Individuals who reported an adrenal crisis within the past year had significantly increased symptom scores [8.8 (2.9) vs 6.7 (2.5), p<0.0001]. Regression model for the AddiQoL total score (R2 = 0.8) found after adjusting for group, age and sex, that BMI (p = 0.0002) and symptom score (p<0.0001) were highly significant predictors of worse AddiQoL score. ConclusionAdrenal crisis is reported frequently by patients who are being treated for adrenal insufficiency. We found a strong association of “within-day” symptoms to both risk of adrenal crisis and reduced quality of life. Addressing persistent disease-related symptoms in adrenal insufficiency would be an appropriate disease management response to improve care. The initial choice of replacement dosing based on body surface area or other metric may be a starting point for care but should be informed by studies that show large variation in absorption and metabolism between individuals. Adjusting doses of replacement hormones and careful management of adrenal insufficiency symptoms could improve outcomes. Presentation: 6/1/2024

5183 Tirzepatide Improved Health-Related Quality of Life in People with Obesity or Overweight: Results from SURMOUNT-4 Phase 3 Trial

Abstract Disclosure: T.M. Gibble: Employee; Self; Employment and stockholder, Eli Lilly and Company. D. Cao: Employee; Self; Employment and stockholder, Eli Lilly and Company. M. Murphy: Employee; Self; Employment and stockholder, Eli Lilly and Company. I. Jouravskaya: Employee; Self; Employment and stockholder, Eli Lilly and Company. B. Liao: Employee; Self; Employment and stockholder, Eli Lilly and Company. Background: Tirzepatide is approved in the U.S. for treatment of type 2 diabetes (T2D) and obesity. In the phase 3 SURMOUNT-4 trial with randomized withdrawal of tirzepatide maximum tolerated dose (MTD) after the first 36 weeks, continuing tirzepatide for 88 weeks led to a mean weight reduction of 25.3% from baseline compared to 9.9% for those who switched to placebo (PBO).1 This analysis evaluated the effects of tirzepatide versus PBO on health-related quality of life (HRQoL) outcomes using the SURMOUNT-4 trial data. Methods: Adults (n=783) with body mass index ≥30 or ≥27 kg/m2 and ≥1 obesity-related complication (excluding T2D) were enrolled in an open-label lead-in period to receive tirzepatide once weekly for 36 weeks, escalated to MTD (10 mg or 15 mg). At week (W) 36, 670 participants were randomized 1:1 to continue tirzepatide MTD (n=335) or were switched to PBO (n=335) for 52 weeks. HRQoL was evaluated using Short Form-36 Version 2 Health Survey (SF-36 v2) acute form and Impact of Weight on Quality of Life-Lite-Clinical Trials Version (IWQOL-Lite-CT), where last observation before discontinuation was carried forward. Higher scores reflected better levels of functioning. Least square means (LSM) and estimated treatment differences (ETD) between tirzepatide versus PBO were calculated using an analysis of covariance model. Proportion of people achieving clinically meaningful improvement (CMI) in SF-36v2 physical functioning score (change from baseline ≥5.76) was also assessed. Results: LSM changes in SF-36 v2 and IWQOL-Lite-CT scores were comparable during lead-in (W0 to W36) between people randomized to tirzepatide and PBO. Significant improvements were observed from W36 to W88 in SF-36v2 Physical Component Score (PCS), Mental Component Score (MCS), and all domains for tirzepatide versus PBO, with LSM (ETD) as follows: PCS, 54.9, 53.1 (1.8); MCS, 54.6, 52.9 (1.7); physical functioning, 54.2, 51.6 (2.6); role-physical, 54.3, 53.3 (1.1); bodily pain, 54.7, 53.1 (1.6); general health, 56.7, 54.1 (2.6); vitality, 57.0, 55.4 (1.6); social functioning, 54.2, 52.9 (1.3); role-emotional, 53.0, 51.1 (1.9), and mental health, 55.4, 52.9 (2.4), respectively; all p<0.05. Proportion of people achieving CMI (%) in SF-36v2 physical functioning from W0 to W88 was higher for tirzepatide than those who switched to PBO (≥ 5.76, 52.0 and 36.2). Tirzepatide showed significant improvements in IWQOL-Lite-CT scores versus PBO from W36 to W88, with LSM scores (ETD) as follows: total, 86.4, 75.3 (11.1); psychosocial, 87.7, 75.6 (12.1); physical function, 85.7, 76.2 (9.4); and physical, 83.8, 74.7 (9.1), respectively; all p<0.001. Conclusion: In SURMOUNT-4 trial, adults with overweight or obesity continuing on tirzepatide showed significant and sustained improvements in HRQoL versus those switching to PBO. 1Sattar N. 59th Annual Meeting European Association for the Study of Diabetes; Oct 2023; Germany. Presentation: 6/3/2024

The Effect of 8 Weeks of Dynamic Neuromuscular Stabilization Training on Pain, Electromyography Activity of Lumbar Muscles, and Quality of Life in People with Chronic Low Back Pain

Objectives: To evaluate the effects of an 8-week DNS training program on pain, EMG activity, and quality of life in individuals with CLBP. Design: Semi-experimental study. Participants: Thirty male participants with non-specific CLBP, divided into DNS (n=15) and control (n=15) groups. Main Outcome Measures: Pain levels (Quebec Back Pain Disability Scale), lumbar muscle EMG activity (MegaWin EMG device), and quality of life (SF-36 questionnaire). Results: The DNS group showed significant pain reduction (P=0.00), increased EMG activity in rectus abdominis (P=0.000), erector spinae (P=0.002), and gluteus maximus (P=0.002), and improved quality of life (P=0.02). Conclusions: DNS exercises significantly reduce pain, enhance muscle activity, and improve quality of life in CLBP patients

Quality of Life in People with HIV at the End of Life: Preliminary Results from the Last Gift Observational Cohort Study.

As people living with HIV (PWH) age, they face new challenges that can have a negative impact on their quality of life (QOL) and mental health. This study enrolled PWH at the end of life (EOL) who were actively engaged in cure-related research in Southern California, United States. EOL was defined as having a prognosis of six months or less to live. We examined the relationship between QOL, mental health, and research participation. Structured assessments were used to collect comprehensive data on QOL and mental health. From 2017 to 2023, 35 PWH in their final stages of life who were actively engaged in cure-related research were enrolled. Their median age was 62.7 years, and most were White or otherwise non-Hispanic/non-Latino (90.6%), and male (86.7%). Changes in QOL and the presence of neurologic and psychiatric conditions, with a focus on depression and anxiety, were the primary outcomes assessed in this study. Participants had stable QOL scores throughout the study. There was an inverse relationship between QOL and BDI scores, with higher mean QOL scores being associated with lower mean BDI scores (p < 0.001). QOL remained stable among PWH who participate in cure-related research at EOL. The inverse relationship between QOL and depressive symptoms suggests that participation in cure-related research may improve QOL or reduce depressive symptoms in this population. Future interventions should look into ways to improve the well-being of PWH at EOL through research and customized mental health interventions.

Technological interventions in European dementia care: a systematic review of acceptance and attitudes among people living with dementia, caregivers, and healthcare workers.

Alzheimer's and other neurodegenerative forms of dementia affect 8 million Europeans. Assistive technologies are suggested to reduce the burden of care and improve the quality of life of person living with dementia. Nonetheless, the acceptance and attitudes toward technological interventions pose challenges not only for people living with dementia and caregivers but also for healthcare workers. This review specifically aims to investigate how these key groups perceive and accept technology in European dementia care settings. This systematic review was conducted to identify studies, published between 2013 and 2023, that examined the acceptance and attitude of assistive technologies in Alzheimer's and other dementia European settings, following the PRISMA guidelines. Rayyan AI was used for data extraction, and bias was assessed using the Mixed Methods Appraisal Tool. Among the 1,202 identified articles, 13 met the inclusion criteria, revealing a prevailing positivity toward technological interventions in dementia care. Nonetheless, several barriers to adoption, including technological unfamiliarity, and specific dementia-related symptoms that complicate usage were identified. They also unveiled varying attitudes, influenced by factors such as familiarity with technologies, perceived usefulness, and the broader context of the COVID-19 pandemic which accelerated telemedicine and digital solution acceptance during restricted mobility and social distancing. Understanding attitudes toward technology in dementia care is crucial as it influences the adoption and utilization of tech-based interventions, impacting symptom management and quality of life. Addressing these attitudes through tailored interventions and education can enhance well-being and quality of life for people living with dementia, caregivers, and healthcare professionals.

Bleeding and quality of life in people with Glanzmann thrombasthenia—insights from the Glanzmann’s 360 study

BackgroundGlanzmann thrombasthenia (GT) is a rare platelet function disorder that results in severe bleeding. We assessed clinical symptoms and psychological parameters to identify the unmet needs associated with GT. ObjectivesGlanzmann’s 360 is a mixed-methods study designed to give a contemporary snapshot of the impact of living with GT. MethodsThe study comprised a self-completion online survey complemented by interviews conducted with affected individuals and carers recruited via social media and hemophilia treatment centers. ResultsThe survey was completed by 88 people with GT and 29 carers of children/young people with GT aged <16 years. The population ranged in age from <2 years to >70 years; 56% were female. Although 47% had been diagnosed with GT under the age of 2 years, 12% were diagnosed after 20 years of age. For 82%, a bleeding phenotype was apparent by the age of 5 years. Most respondents (88%) had experienced at least one bleed in the past week. Bleeding disproportionally affected women. Bleeds resulted in frequent hospital contact and considerable psychological distress: 26% of the population had scores suggestive of low self-esteem, while 30% met criteria suggestive of symptomatic depression. Exploratory analyses suggest that bleed experiences are associated with impaired health-related quality of life. ConclusionThe Glanzmann’s 360 study reveals the significant physical, psychosocial, and quality-of-life impairments that are likely to be linked to the frequent bleeds experienced by those with GT. Clinicians treating people with GT should promote access to multidisciplinary comprehensive care, including psychosocial support.

Clinical and Cost-Effectiveness of a 6-Month Digital Health Intervention to Improve Physical Activity and Mental Health-Related Quality of Life in People with CKD (Kidney BEAM)

Clinical and Cost-Effectiveness of a 6-Month Digital Health Intervention to Improve Physical Activity and Mental Health-Related Quality of Life in People with CKD (Kidney BEAM)

The Relationship Between Physical Activity And Quality Of Life In People With Metabolic Syndrome

The Relationship Between Physical Activity And Quality Of Life In People With Metabolic Syndrome