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Frontiers in Immunology 2024Psoriasis is a common, life-long skin disease with a significant negative health and societal impact. Data on rates of disease control and treatment strategies are... (Observational Study)
Observational Study
Disease severity, treatment patterns, and quality of life in patients with moderate-to-severe psoriasis routinely managed with systemic treatment: results of the CRYSTAL observational study in Central and Eastern European countries.
Psoriasis is a common, life-long skin disease with a significant negative health and societal impact. Data on rates of disease control and treatment strategies are lacking in Central and Eastern European countries. We aimed to describe the real-world disease severity, control, and treatment strategies for psoriasis in patients from Central and Eastern European countries. CRYSTAL (EUPAS36459) was a cross-sectional, retrospective study in adults (18-75 years) from Bulgaria, Estonia, Hungary, Latvia, Lithuania, Romania, and Russia. We enrolled patients with moderate-to-severe psoriasis receiving continuous systemic treatment for ≥24 weeks. We used the Psoriasis Area and Severity Index (PASI) to describe disease severity and the Dermatology Life Quality Index (DLQI) to assess quality of life (QoL) and collected other outcomes [psoriasis work productivity and activity impairment (WPAI-PSO), patient satisfaction] at enrollment. Analyses were descriptive. A total of 690 patients were included in the analyses. Median disease duration was 11.8 years. Current treatment was monotherapy for most patients (95.8%) with either biological (BIO group; 88.4%) or conventional (NON-BIO group; 7.4%) agents. Mean (± standard deviation) absolute PASI scores were 3.5 ± 5.7, 3.1 ± 5.3, and 6.6 ± 7.4 in the overall population, the BIO group, and the NON-BIO group, respectively. Among patients treated with monotherapy, absolute PASI scores ≤1, ≤3, and ≤5 were observed for 44.1%, 72.0%, and 82.6% of BIO patients and 21.6%, 33.3%, and 49.0% of NON-BIO patients. Mean DLQI total score was 3.3 ± 5.1; higher scores were noted for higher absolute PASI. The most impacted WPAI-PSO domain was presenteeism; for all domains, impact increased with increased absolute PASI. A total of 91.8% of BIO patients and 74.5% of NON-BIO patients were satisfied with the current treatment. We observed a better disease control in BIO than NON-BIO patients. However, around half of BIO patients did not reach clear skin status and reported an impact on QoL. An improvement in treatment strategies is still needed in Central and Eastern European countries to optimize outcomes of moderate-to-severe psoriasis.
Topics: Humans; Psoriasis; Quality of Life; Middle Aged; Male; Female; Adult; Severity of Illness Index; Cross-Sectional Studies; Aged; Retrospective Studies; Europe, Eastern; Young Adult; Adolescent; Treatment Outcome; Europe; Dermatologic Agents; Patient Satisfaction
PubMed: 38846952
DOI: 10.3389/fimmu.2024.1410540 -
Sleep Science (Sao Paulo, Brazil) Jun 2024About 65% of adult Americans report playing video games. Despite potential impacts to functioning, there is limited research on the relationship between video game...
About 65% of adult Americans report playing video games. Despite potential impacts to functioning, there is limited research on the relationship between video game use and sleep, specifically among adults. The present study expands upon the literature by describing demographic, video game, and sleep characteristics of an international adult sample of gamers. The participants were 3,481 adults aged 18 to 74 who responded to an online questionnaire about video game use (i.e., quantity of play, most common game type), general sleep characteristics (i.e., sleep onset latency [SOL]; duration, sleep timing, and sleep quality), and gaming-specific sleep disruptors (i.e., game-related night awakenings and sleep delays). Most identified as cisgender male (79.8%) and white (77%). Participants reported an average SOL of 24.63 minutes, and most (64.5%) had a sleep duration from 7 to 9 hours with an overall average of 8.42 hours. Most (58.7%) reported that their sleep quality was to . Bed and wake times were generally delayed, with 51% reporting a late evening or early morning bedtime and an average wake time of 8:28 am. A majority (81.2%) indicated that their bedtime was delayed due to game-related activities, but game-related night awakenings were less common. Although many report a sufficient amount of sleep, adult gamers tend to report sleep disruptions in other domains, particularly regarding a delayed sleep schedule and poor sleep quality. This may be attributable to game-related bedtime delays or other game-specific factors (e.g., game type) that should be evaluated in the future.
PubMed: 38846584
DOI: 10.1055/s-0043-1776751 -
The Australian and New Zealand Journal... Jun 2024Harmonized tools are essential for reliable data sharing and accurate identification of relevant factors in mental health research. The primary objective of this study... (Review)
Review
OBJECTIVE
Harmonized tools are essential for reliable data sharing and accurate identification of relevant factors in mental health research. The primary objective of this study was to create a harmonized questionnaire to collect demographic, clinical and behavioral data in diverse clinical trials in adult psychiatry.
METHODS
We conducted a literature review and examined 24 questionnaires used in previously published randomized controlled trials in psychiatry, identifying a total of 27 domains previously explored. Using a Delphi-method process, a task force team comprising experts in psychiatry, epidemiology and statistics selected 15 essential domains for inclusion in the final questionnaire.
RESULTS
The final selection resulted in a concise set of 22 questions. These questions cover factors such as age, sex, gender, ancestry, education, living arrangement, employment status, home location, relationship status, and history of medical and mental illness. Behavioral factors like physical activity, diet, smoking, alcohol and illicit drug use were also included, along with one question addressing family history of mental illness. Income was excluded due to high confounding and redundancy, while language was included as a measure of migration status.
CONCLUSION
The recommendation and adoption of this harmonized tool for the assessment of demographic, clinical and behavioral data in mental health research can enhance data consistency and enable comparability across clinical trials.
PubMed: 38845137
DOI: 10.1177/00048674241253452 -
Digital Health 2024To assess the experience of virtual care among both patients and physicians across a range of clinical scenarios during the COVID-19 pandemic.
OBJECTIVE
To assess the experience of virtual care among both patients and physicians across a range of clinical scenarios during the COVID-19 pandemic.
METHODS
A web-based survey was disseminated to patients and physicians through a variety of media and healthcare communications from May 2020 to July 2021. Demographic details and attitudes across a range of virtual care domains were collected. Quantitative responses were analyzed descriptively. Open-text responses were gathered to contrast when a virtual visit was superior or inferior to an in-person one, and a thematic content analysis was used.
RESULTS
There were 197 patients and 93 physician respondents, representing a range of demographic and practice characteristics. Patients noted several benefits of virtual care and felt it should continue to be available. Physicians felt they could do a lot of their care virtually. Common themes related to the superiority of virtual care were for "quick" visits, reviewing test results, chronic disease monitoring, and medication needs. Virtual care was less ideal when a physical exam was needed, and was not perceived as a good fit for an individual's cultural, language, or emotional needs. Certain conditions were identified as both ideal and non-ideal for the virtual format (e.g. mental healthcare).
DISCUSSION
Certain situations are more amenable to virtual care with personal preferences among both patients and physicians. Future priorities should ensure that virtual care is effective across the range of clinical situations in which it may be used and that both virtual and in-person options are equally available to those who want them.
PubMed: 38840659
DOI: 10.1177/20552076241258390 -
BMC Geriatrics Jun 2024Intrinsic capacity (IC) is proposed by the World Health Organization (WHO) to promote healthy aging. Although some studies have examined the factors influencing IC, few...
BACKGROUND
Intrinsic capacity (IC) is proposed by the World Health Organization (WHO) to promote healthy aging. Although some studies have examined the factors influencing IC, few studies have comprehensively confirmed lifestyle factors on IC, especially IC impairment patterns. The present study aimed to identify the patterns of IC impairment and explore the lifestyle and other factors associated with different patterns of IC impairment.
METHODS
This cross-sectional study was conducted in a Chinese geriatric hospital. IC was evaluated in five domains according to the recommendations of WHO: cognition, locomotion, vitality, sensory and psychological domains. The sociodemographic and health-related characteristics of participants were assessed.The health promoting lifestyle was evaluated using the Health-Promoting Lifestyle Profile-II scale, including nutrition, health responsibility, interpersonal relationships, physical activity, spiritual growth and stress management. We applied latent class analysis to identify IC impairment patterns and compared basic activities of daily living, instrumental activities of daily living, frailty, quality of life and falls among different IC impairment patterns. Multinomial logistic regression analysis was conducted to identify factors influencing the IC impairment patterns.
RESULTS
Among 237 participants included, the latent class analysis identified three patterns of IC impairment: 44.7% high IC (Class 1), 31.2% intermediate IC mainly locomotor impairment (Class 2) and 24.1% low IC mainly cognitive impairment (Class 3). Older adults in class 1 had the best function ability and quality of life, while class 3 had the highest levels of disability and frailty, the poorest quality of life and a higher prevalence of falls. Compared with class 1, older adults with advanced age (OR = 22.046, 95%CI:1.735-280.149), osteoporosis (OR = 3.377, 95%CI:1.161-9.825), and lower scores in physical activity (OR = 0.842, 95%CI:0.749-0.945), stress management (OR = 0.762, 95%CI:0.585-0.993) and social support (OR = 0.897, 95%CI:0.833-0.965) were more likely to belong to the class 2. Simultaneously, compared with class 1, older adults with advanced age (OR = 104.435, 95%CI:6.038-1806.410), stroke (OR = 3.877, 95%CI:1.172-12.823) and lower scores in physical activity (OR = 0.784, 95%CI:0.667-0.922) and social support (OR = 0.909, 95%CI:0.828-0.998) were more likely to be class 3. In addition, compared with class 2, older adults with a lower score in nutrition (OR = 0.764, 95%CI:0.615-0.950) were more likely to belong to the class 3.
CONCLUSIONS
This study provides evidence that there are heterogeneous IC impairment patterns in older adults and identifies various associated factors in each pattern, including age, stroke, osteoporosis, social support and lifestyle behaviors such as nutrition, physical activity and stress management. It informs stakeholders on which modifiable factors should be targeted through public health policy or early intervention to promote IC and healthy aging in older adults.
Topics: Humans; Male; Female; Cross-Sectional Studies; Latent Class Analysis; Aged; Activities of Daily Living; Aged, 80 and over; Geriatric Assessment; Hospitalization; China; Quality of Life; Life Style; Frailty
PubMed: 38840051
DOI: 10.1186/s12877-024-05093-z -
BMJ Open Jun 2024Little is known about the impact of an ecological dynamics (ED) intervention (EDI) on primary school children's physical literacy and well-being in the Hong Kong... (Randomized Controlled Trial)
Randomized Controlled Trial
BACKGROUND
Little is known about the impact of an ecological dynamics (ED) intervention (EDI) on primary school children's physical literacy and well-being in the Hong Kong context. The aim of this project is to introduce a physical literacy and well-being framework through an EDI that allows primary school children to develop good physical activity (PA) and daily behavioural habits.
METHODS AND ANALYSIS
A four-arm (cluster) randomised controlled trial will be conducted to examine the effect of EDI on physical literacy and well-being in primary schools located in each of the 18 administrative districts of Hong Kong. Four classes in senior primary students (grade 4) at each school will be randomly assigned to the four different conditions. These participating schools will be equipped with sit-stand desks, PA recess facility and equipment, and sleep pillows. The research team will adopt both objective measures (aerobic fitness, fundamental movement skills, daily behaviour-physical activity and cognitive function) and self-reported measures (perceived physical literacy, quality of life, sleep quality) covering the elements and domains of physical literacy and well-being to examine the effects of EDIs at four time points, including baseline assessment, 3 months after intervention, postintervention and 3-month follow-up assessment. One-way analyses of variance (ANOVAs) will be used to test for differences in the baseline characteristics of participants between groups. Repeated measure ANOVAs and MANCOVA, with time (baseline, after intervention and follow-up) as within-subjects factor, and intervention group as between-subjects factors, will be used to evaluate the effects of different interventions on the students' physical literacy and well-being. A Bonferonni correction to the p value will be calculated to adjust for multiple tests.
ETHICS AND DISSEMINATION
Ethical approval was sought from the Joint CUHK-NTEC Clinical Research Ethics Committee in Hong Kong (CREC Ref.No.:2024.027). The finding of this study will be disseminated via peer-reviewed journals, international conference presentations and academic lectures. For secondary analysis of the data, please contact the corresponding author for permission.
TRIAL REGISTRATION NUMBER
ISRCTN84025914.
Topics: Humans; Hong Kong; Child; Exercise; Quality of Life; Schools; Health Promotion; Female; Randomized Controlled Trials as Topic; Male; Health Literacy; Physical Fitness; Students; School Health Services
PubMed: 38839394
DOI: 10.1136/bmjopen-2024-088312 -
JCO Clinical Cancer Informatics Jun 2024Identification of those at risk of hereditary cancer syndromes using electronic health record (EHR) data sources is important for clinical care, quality improvement, and...
PURPOSE
Identification of those at risk of hereditary cancer syndromes using electronic health record (EHR) data sources is important for clinical care, quality improvement, and research. We describe diagnostic processes, previously seldom reported, for a common hereditary cancer syndrome, Lynch syndrome (LS), using EHR data within a community-based, multicenter, demographically diverse health system.
METHODS
Within a retrospective cohort enrolled between 2015 and 2020 at Kaiser Permanente Northern California, we assessed electronic diagnostic domains for LS including (1) family history of LS-associated cancer; (2) personal history of LS-associated cancer; (3) LS screening via mismatch repair deficiency (MMRD) testing of newly diagnosed malignancy; (4) germline genetic test results; and (5) clinician-entered diagnostic codes for LS. We calculated proportions and overlap for each diagnostic domain descriptively.
RESULTS
Among 5.8 million individuals, (1) 28,492 (0.49%) had a family history of LS-associated cancer of whom 3,635 (13%) underwent genetic testing; (2) 100,046 (1.7%) had a personal history of a LS-associated cancer; and (3) 8,711 (0.1%) were diagnosed with colorectal cancer of whom 7,533 (86%) underwent MMRD screening and of the positive screens (486), 130 (27%) underwent germline testing. One thousand seven hundred and fifty-seven (0.03%) were diagnosed with endometrial cancer of whom 1,613 (92%) underwent MMRD screening and of the 195 who screened positive, 55 (28%) underwent genetic testing. (4) 30,790 (0.05%) had LS germline genetic testing with 707 (0.01%) testing positive; and (5) 1,273 (0.02%) had a clinician-entered diagnosis of LS.
CONCLUSION
It is feasible to electronically characterize the diagnostic processes of LS. No single data source comprehensively identifies all LS carriers. There is underutilization of LS genetic testing for those eligible and underdiagnosis of LS. Our work informs similar efforts in other settings for hereditary cancer syndromes.
Topics: Humans; Colorectal Neoplasms, Hereditary Nonpolyposis; Female; Male; Middle Aged; Quality Improvement; Retrospective Studies; Genetic Testing; Adult; Electronic Health Records; Aged; Genetic Predisposition to Disease; California
PubMed: 38838280
DOI: 10.1200/CCI.23.00157 -
CoDAS 2024To cross-culturally adapt the Voice Quality of Life Profile (IVQLP) into Brazilian Portuguese (BP).
PURPOSE
To cross-culturally adapt the Voice Quality of Life Profile (IVQLP) into Brazilian Portuguese (BP).
METHODS
The cross-cultural adaptation process was performed in five stages: translation of the IVQLP into BP by three native BP experts fluent in American English; preparation of a consensus version; back-translation by a native American English expert fluent in BP; analysis by a committee of five experts and preparation of the final version of the instrument in BP, which was named IVQLP-Br; and pre-testing. The IVQLP-Br aims to assess the impacts of the voice more comprehensively, encompassing various areas of an individual's life. It has 43 items and a five-level response key. For the pre-test, the alternative "not applicable" was added as a response option. Thirty-six adults with self-reported risk of dysphonia participated in the pre-test.
RESULTS
In the translation stage, ten items were modified, and during the back-translation, 15 items required adjustments. No questions required reformulation after the application of the IVQLP-Br in the target population, because the option "not applicable" appeared in 12 responses without statistical significance.
CONCLUSION
The version of the IVQLP translated into BP, named the IVQLP-Br, exhibited cross-cultural equivalence and was administrable for a more detailed analysis of the impact of the voice in different domains of an individual's life. After validation, the IVQLP-Br will be able to contribute both to clinical practice and to research with BP speakers.
Topics: Humans; Quality of Life; Brazil; Translations; Cross-Cultural Comparison; Female; Adult; Male; Surveys and Questionnaires; Voice Quality; Middle Aged; Iran; Dysphonia; Reproducibility of Results; Young Adult; Language
PubMed: 38836821
DOI: 10.1590/2317-1782/20232023023pt -
Trials Jun 2024Cancer is a medical condition where some cells of the body reproduce uncontrollably and metastasize to other parts of the body. The burden of the disease is...
BACKGROUND
Cancer is a medical condition where some cells of the body reproduce uncontrollably and metastasize to other parts of the body. The burden of the disease is significantly high both at the global and national levels. In UAE, cancer was found to be the third leading cause of death. Breast cancer has been ranked first due to its prevalence, incidence, and mortality in UAE. Breast cancer survivors have significantly poor cardiovascular tolerance which affects their quality of life (QoL), even after the carcinoma has been treated or removed. Thus, the protocol aims to analyze the changes in cardiovascular endurance and QoL domains for breast cancer survivors in the United Arab Emirates using a long-term 2-month physical rehabilitation.
METHODS
A total of 60 breast cancer survivors would be included in the study using a randomized controlled allocation of a 2-month physical rehabilitation intervention program with 3 months of follow-up. The intervention would target the cardiovascular endurance component of the participants to improve their physical well-being and quality of life ultimately.
DISCUSSION
The findings of the study would have high clinical significance among breast cancer survivors in the UAE. The proposed physical rehabilitation program could be beneficial in improving cardiovascular endurance and thereby reduce the risk of mortality among breast cancer survivors. In addition, the physiological benefits of the exercise program could improve their quality-of-life domains including physical, mental, and social well-being. On a larger view, it could also help to reduce the economic burden on the health system due to associated complications.
TRIAL REGISTRATION
ClinicalTrials.gov NCT06013527. Registered on 28 August 2023.
Topics: Humans; Quality of Life; Breast Neoplasms; Cancer Survivors; Female; United Arab Emirates; Randomized Controlled Trials as Topic; Exercise Therapy; Cardiorespiratory Fitness; Middle Aged; Time Factors; Adult; Treatment Outcome
PubMed: 38835046
DOI: 10.1186/s13063-024-08192-9 -
Health and Quality of Life Outcomes Jun 2024Stroke has evolved to become a chronic disease and a major public health challenge. To adequately capture the full disease burden of stroke patients, the assessment of... (Comparative Study)
Comparative Study
BACKGROUND
Stroke has evolved to become a chronic disease and a major public health challenge. To adequately capture the full disease burden of stroke patients, the assessment of health-related quality of life (HRQoL) and thus the performance of respective measures is increasingly relevant. The aim of this analysis was to compare the measurement properties of two self-report instruments, the EQ-5D-5L and the Stroke Impact Scale 2.0.
METHODS
The data used for the analysis was derived from a quasi-experimental case management study for mildly to moderately affected incident stroke and transient ischemic attack (TIA) patients aged ≥ 18 in Germany. Data was collected patient-individually at 3, 6 and 12 months after initial stroke. The EQ-5D-5L and SIS 2.0 were compared in terms of feasibility, ceiling and floor effects, responsiveness and known-groups validity (Kruskal-Wallis H and Wilcoxon rank-sum test).
RESULTS
A response for all three follow-ups is available for n = 855 patients. The feasibility of the EQ-5D-5L is determined as good (completion rate: 96.4-96.6%, ≥ one item missing: 3.2 - 3.3%), whereas the SIS 2.0 is moderately feasible (overall completion rate: 44.9-46.1%, ≥ one item missing in domains: 4.7 - 28.7%). The SIS 2.0 shows substantial ceiling effects in comparable domains (physical function: 10.4 - 13%, others: 3.5-31.3%) which are mainly larger than ceiling effects in the EQ-5D-5L index (17.1-21.5%). In terms of responsiveness, the EQ-5D-5L shows small to moderate change while the SIS 2.0 presents with moderate to large responsiveness. The EQ-5D-5L index, mobility, usual activities and Visual Analogue Scale show known-groups validity (p < 0.05). Content-related domains of the SIS 2.0 show known-groups validity as well (p < 0.05). However, it is compromised in the emotion domain in both measures (p > 0.05).
CONCLUSIONS
The EQ-5D-5L seems to be slightly more suitable for this cohort. Nonetheless, the results of both measures indicate limited suitability for TIA patients. Large-scale studies concerning responsiveness and known-groups validity are encouraged.
TRIAL REGISTRATION
The study was registered in the German Clinical Trials Register, retrospective registration on 21.09.2022.
REGISTRATION ID
DRKS00030297.
Topics: Humans; Male; Female; Quality of Life; Stroke; Germany; Middle Aged; Aged; Surveys and Questionnaires; Psychometrics; Reproducibility of Results; Self Report; Adult; Ischemic Attack, Transient
PubMed: 38835023
DOI: 10.1186/s12955-024-02252-z