Efectividad del entrenamiento muscular pélvico temprano en la fuerza de suelo pélvico, síntomas de incontinencia urinaria, función sexual y calidad de vida en pacientes posprostatectomía radical: revisión sistemática de ensayos clínicos aleatorizados / Effectiveness of early pelvic muscle training on pelvic floor strength, urinary incontinence symptoms, sexual function, and quality of life in post-radical prostatectomy patients: Systematic review of randomized clinical trials

Este estudio tuvo como objetivo evaluar la efectividad del entrenamiento muscular pélvico temprano para reducir los síntomas de incontinencia urinaria, mejorar la calidad de vida, función sexual y aumentar la fuerza de suelo pélvico en pacientes posprostatectomía radical. Se realizó una búsqueda en 8 bases de datos hasta el 26 de octubre de 2022, se evaluó la calidad metodológica y el riesgo de sesgo de 14 estudios incluidos (n=1236), se calculó la evidencia y el metaanálisis. El entrenamiento redujo significativamente los síntomas de incontinencia urinaria en comparación con un grupo control (DME=−2,80; IC 95%=−5,21 a −0,39; p=0,02), con heterogeneidad significativa (I2=83%; p=<0,0001) y evidencia moderada. Además, presentó evidencia moderada para mejorar la calidad de vida, y muy baja para mejorar la función sexual y fuerza de suelo pélvico. Estos resultados deben ser observados con precaución debido a la heterogeneidad significativa de los estudios analizados. (AU)

This study aimed to evaluate the effectiveness of early pelvic muscle training in reducing urinary incontinence symptoms, improving quality of life, sexual function, and increasing pelvic floor strength in post-radical prostatectomy patients. A search was carried out in 8 databases until October 26, 2022, the methodological quality and the risk of bias of 14 included studies (n=1236) were evaluated, moreover, the evidence and the meta-analysis were calculated. The intervention significantly reduced urinary incontinence symptoms compared to a control group (SMD=−2.80, 95% CI=−5.21 to −0.39, P=.02), with significant heterogeneity (I2=83%; P=<.0001) and moderate evidence. In addition, it presented moderate evidence to improve quality of life, and very low evidence to improve sexual function and pelvic floor strength. These results should be viewed with caution due to the significant heterogeneity of the studies analysed. (AU)

Health related quality of life and its predictors among postpartum mother in Southeast Ethiopia: A cross-sectional study.

Background: Post-childbirth, woman's health-related quality of life (HRQOL) is significantly impacted, leading to decreased daily activity, reduced self-care, challenges with breastfeeding and baby weaning, and increased medical costs for both mother and newborn.This study aimed to assess the HRQOL and its predictors among postpartum women in Southeast Ethiopia. Methods: A cross-sectional study was conducted in Southeast Ethiopia between March and May 2022, involving randomly selected sample of 794 postpartum women attending immunization services in public health facilities. Data was collected using a validated questionnaire, and descriptive statistics were computed. A bivariable and multivariable logistic regression model was fitted to predict HRQOL, with odds ratios and 95% confidence intervals used to estimate associations. Results: The study revealed that the overall HRQOL, physical component summary, and mental component summary of quality of life had mean scores of 43.80 ± 27.88, 45.39 ± 28.58, and 42.20 ± 28.15(mean ± SD) respectively. Walking to the health facility (AOR = 2.09; 95% CI: (1.31,3.31); using public transport (AOR = 2.58; 95% CI = 1.69-3.93); having the fear of COVID-19 (AOR = 1.46; 95% CI = 1.08-1.99); having health facility admission history during the recent pregnancy (AOR = 1.62; 95% CI = 1.08-2.44); having postpartum depression (PPD) (AOR = 2.13; 95% CI = 1.57-2.89) were predictors of a lower level of overall HRQOL among postpartum women. Conclusion: The study found that nearly half of postpartum women in Ethiopia have lower HRQOL, with factors such as transport use, recent baby's pregnancy admission history, and postpartum depression (PPD) significantly affecting their overall, physical, and mental HRQOL. Fear of COVID-19 was found to be significantly associated with lower overall and physical HRQO. The implementation of appropriate strategies addressing identified factors is crucial for enhancing the HRQOL among postpartum women in Ethiopia.

Health-Related Quality of Life in Sudanese Children with Nephrotic Syndrome: A Comparative Cross-Sectional Study.

Background: Nephrotic syndrome (NS) is an essential chronic disease in children that has a major impact on a child's health-related quality of life (HRQoL). This study aimed to evaluate the HRQoL of Sudanese children with NS and clinical parameters that can influence their HRQoL. Methods: This study was a descriptive cross-sectional of children with NS conducted in Khartoum state hospitals. A standardized PedsQLTM 4.0 Scale Score evaluated the HRQoL of the participants. Patients' socio-demographics, clinical data, and disease complications were collected using a data collection sheet. This study assessed the HRQoL of children with NS and compared it with apparent age and sex-matched to three groups (healthy children, children with chronic diseases, and kidney-transplanted children). Results: 80 children with NS were recruited from April to August 2021. Children over eight years old represented (63.8%) of the study subjects. The total mean HRQoL scores of nephrotic children were significantly lower than those of healthy children (78.46 ± 24.01) (p = 0.001) and those with other chronic diseases (78.45 ± 24.01) (p= 0.006); however, it was not significantly different from those with kidney transplantation. Socio-demographics did not significantly affect the total mean HRQoL scores of children with NS. Clinical parameters such as the duration of illness, "less than one year" (p= 0.006), and the minimum change nephropathy histopathology (p= 0.035) significantly lowered the total mean HRQoL scores of NS children. Regression analysis further confirmed that edema, proteinuria, and hospital admission had a high impact on the total mean HRQoL. Conclusion: The total mean HRQoL scores of children with NS were low and significantly lower than healthy children. Parameters such as the patient's socio-demographics and phenotype of NS had no significant effect on the total mean HRQoL scores of children with NS. However, other clinical parameters significantly lowered their total mean HRQoL scores.

Social Mobility and Health-Related Quality of Life Trajectory Classes Among Older Women and Men.

OBJECTIVES: Changes in socioeconomic status (SES) during life may impact health in old age. We investigated whether social mobility and childhood and adulthood SES are associated with trajectories of health-related quality of life (HrQoL) over a 17-year period. METHODS: We used data from the Helsinki Birth Cohort Study (n = 2003, 46% men, mean age 61.5 years). Social mobility was derived from childhood SES, obtained from healthcare records, and register-based adulthood SES. RESULTS: Logistic regression models showed that lower adulthood SES was associated with lower physical HrQoL trajectories. Among men low (OR 3.95, p < .001), middle (OR 2.20, p = .006), and declining lifetime SES (OR 2.41, p = .001) were associated with lower physical HrQoL trajectories compared to men with high SES. Socioeconomic status was not associated with mental HrQoL trajectories. DISCUSSION: Declining SES during life course may have negative health consequences, while improving SES is potentially as beneficial as high SES to later-life health among men.

Poor rhinitis and asthma control is associated with decreased health-related quality-of-life and utilities: A MASK-air study.

BACKGROUND: Allergic rhinitis (AR) and asthma may impact health-related quality-of-life. However, national estimates on the quality-of-life of patients with AR or asthma are lacking. OBJECTIVE: To provide estimates for utility scores and EQ-5D Visual Analog Scale (VAS) for patients with AR or asthma. METHODS: We conducted a cross-sectional study using direct patient data from the MASK-air® app on European MASK-air® users with self-reported AR or asthma. We used a multiattribute instrument (EQ-5D) to measure quality-of-life (as utility scores and EQ-5D VAS values). Mean scores were calculated per country and disease control level using multilevel regression models with post-stratification, accounting for age and sex biases. RESULTS: We assessed data from up to 7905 MASK-air® users reporting a total of up to 82,737 days. For AR, utilities ranged from 0.86-0.99 for good control versus 0.72-0.85 for poor control; EQ-5D VAS levels ranged from 78.9-87.9 for good control versus 55.3-64.2 for poor control. For asthma, utilities ranged from 0.84-0.97 for good control versus 0.73-0.87 for poor control; EQ-5D VAS levels ranged from 68.4-81.5 for good control versus 51.4-64.2 for poor control. Poor disease control was associated with a mean loss of 0.14 utilities for both AR and asthma. For the same control levels, AR and asthma were associated with similar utilities and EQ-5D VAS levels. However, lower values were observed for asthma+AR when compared to AR alone. CONCLUSION: Poor AR or asthma control are associated with reduced quality-of-life. The estimates obtained from mHealth data may provide valuable insights for health technology assessment studies.

Comparing patient-reported outcomes and lifestyle factors before and after the COVID-19 pandemic among Black and Hispanic breast cancer survivors in New Jersey.

PURPOSE: The impact of the COVID-19 pandemic restrictions in the US since March 2020 on cancer survivorship among Black and Hispanic breast cancer (BC) survivors remains largely unknown. We aimed to evaluate associations of the pandemic with participant characteristics, patient-reported outcomes (PROs), and lifestyle factors among Black and Hispanic BC survivors in the Women's Circle of Health Follow-Up Study and the New Jersey BC Survivors Study. METHODS: We included 447 Black (npre = 364 and npost = 83) and 182 Hispanic (npre = 102 and npost = 80) BC survivors who completed a home interview approximately 24 months post-diagnosis between 2017 and 2023. The onset of the pandemic was defined as March 2020. The association of the pandemic with binary outcomes was estimated using robust Poisson regression models. RESULTS: Hispanic and Black BC survivors recruited after the onset of the pandemic reported higher socioeconomic status and fewer comorbidities. Black women in the post-pandemic group reported a higher prevalence of clinically significant sleep disturbance (prevalence ratio (PR) 1.43, 95% CI 1.23, 1.68), lower sleep efficiency, and lower functional well-being, compared to the pre-pandemic group. Hispanic women were less likely to report low health-related quality of life (vs. high; PR 0.62, 95% CI 0.45, 0.85) after the onset of the pandemic. CONCLUSIONS: Ongoing research is crucial to untangle the impact of the pandemic on racial and ethnic minorities participating in cancer survivorship research, as well as PROs and lifestyle factors. IMPLICATIONS FOR CANCER SURVIVORS: This study highlights the importance of considering the impact of the pandemic in all aspects of research, including the interpretation of findings.

An evaluation of sexual function and health-related quality of life following laparoscopic surgery in individuals living with endometriosis.

STUDY QUESTION: What is the relationship between sexual function, health-related quality of life (HRQoL), and laparoscopic surgery in individuals living with endometriosis? SUMMARY ANSWER: A higher number of laparoscopic surgeries is significantly associated with poorer HRQoL and greater levels of sexual dysfunction in individuals with endometriosis. WHAT IS KNOWN ALREADY: Prior research indicates that endometriosis is associated with lowered HRQoL and sexual function and that these outcomes are influenced by endometriosis-related symptom profiles, medical, and surgical management. A limited number of studies have examined changes in sexual function in individuals with endometriosis following laparoscopic surgery or following repeated surgeries. STUDY DESIGN, SIZE, DURATION: A cross-sectional community-based online survey was used to examine the relationships between sexual function, HRQoL, and laparoscopic surgery (n = 210). PARTICIPANTS/MATERIALS, SETTING, METHODS: Individuals with a self-reported diagnosis of endometriosis were recruited via online advertising through social media and gynaecology clinics. Endometriosis-specific data (e.g. diagnostic delay, symptom experience) was collected in addition to engagement with laparoscopic surgery, level of HRQoL (EuroQol-5 Dimension: EQ-5D-5L), and sexual function (Female Sexual Function Index: FSFI). Bivariate correlational analyses and hierarchical multiple regression were used to determine the associations between the variables of interest. MAIN RESULTS AND THE ROLE OF CHANCE: Individuals with endometriosis have substantially poorer HRQoL in comparison to Australian normative samples, with greater levels of endometriosis-related symptom burden, distress, and pain significantly associated with lower levels of HRQoL. The mean FSFI score was suggestive of clinically significant female sexual dysfunction, with the lowest level of function noted in the domain of sexual pain and the highest level of function noted in the sexual satisfaction domain. A greater number of laparoscopic surgeries was significantly associated with poorer overall HRQoL and greater levels of sexual dysfunction. LIMITATIONS, REASONS FOR CAUTION: The cross-sectional nature of the data precludes direct findings of causality and further longitudinal research is recommended. The information pertaining to engagement in laparoscopic surgery was self-report in nature and was not medically verified. WIDER IMPLICATIONS OF THE FINDINGS: The study's findings highlight the pervasive impact of endometriosis on all domains of living, emphasizing the need to extend treatment planning beyond that of physical pain management alone. Early referral for assessment and management of sexual wellbeing is recommended prior to, and post-surgical intervention, with a focus on maintaining post-surgical changes, potentially reducing the need for multiple surgeries. STUDY FUNDING, COMPETING INTEREST(S): The study was not associated with research funding. Author CN reports grant funding from the Australian Government and Medical Research Future Fund (MRFF) and was a previous employee of CSL Vifor (formerly Vifor Pharma Pty Ltd). TRIAL REGISTRATION NUMBER: N/A.

Improvement in Health-Related Quality of Life Following Antibiotic Treatment in Nontuberculous Mycobacterial Pulmonary Disease: Initial Analysis of the NTM-KOREA Cohort.

BACKGROUND: Improving health-related quality of life (HRQOL) has emerged as a priority in the management of nontuberculous mycobacterial pulmonary disease (NTM-PD). We aimed to evaluate HRQOL and its changes after 6 months' treatment in patients with NTM-PD. METHODS: The NTM-KOREA is a nationwide prospective cohort enrolling patients initiating treatment for NTM-PD in 8 institutions across South Korea. We conducted the Quality of Life-Bronchiectasis (QOL-B) at 6-month intervals and evaluated baseline scores (higher scores indicate better quality of life) and changes after 6 months' treatment. Multivariate logistic regression was performed to identify factors associated with improvement in the QOL-B physical functioning and respiratory symptoms domains. RESULTS: Between February 2022 and August 2023, 411 patients were included in the analysis. Baseline scores (95% confidence interval [CI]) for physical functioning and respiratory symptoms were 66.7 (46.7-86.7) and 81.5 (70.4-92.6), respectively. Among 228 patients who completed the QOL-B after 6 months' treatment, improvements in physical functioning and respiratory symptoms were observed in 61 (26.8%) and 71 (31.1%) patients, respectively. A lower score (adjusted odds ratio; 95% CI) for physical functioning (0.93; 0.91-0.96) and respiratory symptoms (0.92; 0.89-0.95) at treatment initiation was associated with a greater likelihood of physical functioning and respiratory symptom improvement, respectively; achieving culture conversion was not associated with improvement in physical functioning (0.62; 0.28-1.39) or respiratory symptoms (1.30; 0.62-2.74). CONCLUSIONS: After 6 months of antibiotic treatment for NTM-PD, HRQOL improved in almost one-third, especially in patients with severe initial symptoms, regardless of culture conversion. CLINICAL TRIALS REGISTRATION: ClinicalTrials.gov identifier: NCT03934034.

Health related quality of life and its predictive factors on cervical cancer patients in two teaching hospitals, Addis Ababa, Ethiopia.

BACKGROUND: Cervical cancer is the second most prevalent and the leading cause of cancer related deaths among Ethiopian women; and about three fourth are diagnosed at advanced stages. Cervical cancer can affect the health-related quality of life (HRQOL) in multiple ways. The main aim of this study was to describe the HRQOL of cervical cancer patients and the predictive factors using validated tools. METHODS: Institution based cross-sectional study was conducted among 264 cervical cancer patients using the validated Amharic version of European Organization for Research and Treatment of Cancer (EORTC) modules; QLQ-C30 and QLQ CX24. Descriptive statistics were used to summarize the raw data. One way ANOVA was used to determine the significance of mean differences between the dependent and independent variables. Binary and multivariable regression analysis were used to measure the association between Global Health Status and independent factors. The level of significance was set at p-value < 0.05. RESULTS: On EORTC QLQ-C30 scales, the mean Global Health Status (GHS) was 42.57 ± 23.31. The least and highest affected functions were physical and social, mean (SD) = 76.39 ± 23.24 and 50.40 ± 32.19, respectively. The financial difficulty was the most affected among the symptom scales, 57.83 ± 35.34. Only physical function and financial difficulty have shown an independent association with GHS, (AOR = 0.21, 95% CI = 0.05-0.84), (AOR = 0.21 95% CI = 0.07-0.59), respectively. Illiterate, can read and write, were among the predictor factors that showed an independent association with the Global Health Status. Among the EORTC QLQ-CX24 symptom scales, the highest affected score was for sexual worry, mean (SD) = 51.81 + 32.197. CONCLUSIONS: In an effort to improve the Global Health Status of cervical cancer patients in Ethiopia; physical function and financial difficulty should be the priority areas. The Illiterate and those who lack formal education need due attention in order to improve the health-related quality-of-life.

Patient-reported outcome measures for primary hyperparathyroidism: a systematic review of measurement properties.

BACKGROUND: The quality of patient-reported outcome measures (PROMs) used to assess the outcomes of primary hyperparathyroidism (PHPT), a common endocrine disorder that can negatively affect patients' health-related quality of life due to chronic symptoms, has not been rigorously examined. This systematic review aimed to summarize and evaluate evidence on the measurement properties of PROMs used in adult patients with PHPT, and to provide recommendations for appropriate measure selection. METHODS: After PROSPERO registration (CRD42023438287), Medline, EMBASE, CINAHL Complete, Web of Science, PsycINFO, and Cochrane Trials were searched for full-text articles in English investigating PROM development, pilot studies, or evaluation of at least one PROM measurement property in adult patients with any clinical form of PHPT. Two reviewers independently identified studies for inclusion and conducted the review following the Consensus-Based Standards for the Selection of Health Measurement Instruments (COSMIN) Methodology to assess risk of bias, evaluate the quality of measurement properties, and grade the certainty of evidence. RESULTS: From 4989 records, nine PROM development or validation studies were identified for three PROMs: the SF-36, PAS, and PHPQoL. Though the PAS demonstrated sufficient test-retest reliability and convergent validity, and the PHPQoL sufficient test-retest reliability, convergent validity, and responsiveness, the certainty of evidence was low-to-very low due to risk of bias. All three PROMs lacked sufficient evidence for content validity in patients with PHPT. CONCLUSIONS: Based upon the available evidence, the SF-36, PAS, and PHPQoL cannot currently be recommended for use in research or clinical care, raising important questions about the conclusions of studies using these PROMs. Further validation studies or the development of more relevant PROMs with strong measurement properties for this patient population are needed.

The relationship between health literacy and health-related quality of life in Chinese older adults: a cross-sectional study.

Background: This study aimed to examine the relationship between health literacy and health-related quality of life in older adults. Methods: A cross-sectional survey design was used. We used a self-administered questionnaire to assess sociodemographic factors of older adults, the Chinese Citizen Health Literacy Questionnaire (HLQC) and the 36-item Chinese version of the Short Form 36 (SF-36) to measure health literacy and quality of life, respectively, among older adults. Between September 2011 and June 2012, information was collected from 1,396 older adults in 44 nursing homes in four cities through face-to-face interviews. Results: The mean health literacy level of older adults in nursing homes was relatively low (71.74 ± 28.35). Health-related quality of life scores were moderate (104.77 ± 16.92). There were statistically significant differences in the effects of health literacy, education level, former occupation (professional), marital status (widowed) and race on health-related quality of life. Conclusion: Improving health literacy is considered an important intervention to promote health-related quality of life in older adults in nursing homes.

How to measure patient and family important outcomes in extremely preterm infants: A scoping review.

AIM: Parents of children born preterm have identified outcomes to be measured for audit and research at 18-24 months of age: child well-being, quality of life/function, socio-emotional/behavioural outcomes, respiratory, feeding, sleeping, and caregiver mental health. The aim was to identify the best tools to measure these seven domains. METHODS: Seven working groups completed literature reviews and evaluated potential tools to measure these outcomes in children aged 18-24 months. A group of experts and parents voted on the preferred tools in a workshop and by questionnaire. Consensus was 80% agreement. RESULTS: Consensus was obtained for seven brief, inexpensive, parent friendly valid measures available in English or French for use in a minimum dataset and potential alternative measures for use in funded research. CONCLUSION: Valid questionnaires and tools to measure parent-identified outcomes in young preterm children exist. This study will facilitate research and collection of data important to families.

Adaptation and study protocol for harvest for health together Arizona: A mentored community garden intervention for survivors of cancer.

Background: Current health behavior recommendations for skin cancer prevention, treatment, and survivorship are the same for survivors of other cancers; they include eating a healthy diet, being physically active, maintaining a healthy weight, and minimizing ultraviolet (U.V.) exposure. Few interventions exist to support health behaviors beyond U.V. exposure. We adapted Harvest for Health, a home-based mentored gardening intervention for cancer survivors, for implementation in Arizona as a community-based intervention. Methods: Stakeholder-informed adaptations for Harvest for Health Together Arizona (H4H2-AZ) included updating intervention materials to be relevant to the arid desert environment, emphasizing the importance of sun safety in cancer survivorship, and shifting from a home-based to a community-based delivery model. Participants will be enrolled in cohorts aligned with growing seasons (e.g., spring, monsoon, fall) and matched to an individual 30 ft2 community garden plot for two growing seasons (6 months). Original intervention components retained are: 1) Master Gardeners deliver the intervention providing one-to-one mentorship and 2) gardening materials and supplies provided. This pilot six-month single-arm intervention will determine feasibility, acceptability, and appropriateness of an evidence-based adapted mentored community gardening intervention for survivors of skin cancer as primary outcomes. Secondary outcomes are to explore the effects on cancer preventive health behaviors and health-related quality of life. Discussion: This pilot single-arm intervention will determine feasibility, acceptability, and appropriateness of an evidence-based adapted mentored community gardening intervention for survivors of skin cancer. If successful, the intervention could be widely implemented throughout existing Master Gardener programs and community garden networks for survivors of other cancers. Trial registration: ClinicalTrials.gov identifier: NCT05648604. Trial registered on December 13, 2022.

Ranking the Ten Adverse Childhood Experiences: Long-Term Consequences to Health-Related Quality of Life.

INTRODUCTION: This study compared the long-term harmful consequences of individual adverse childhood experiences (ACEs) to subsequent health-related quality of life (HRQOL) among U.S. adults. METHODS: Respondents were from the 11 U.S. states that included the optional ACE module questionnaire in the 2021 Behavioral Risk Factor Surveillance Systems (BRFSS). Relative importance (RI) was estimated for ten ACEs to respondents' self-rated general health (SRGH), physically unhealthy days (PUD), mentally unhealthy days (MUD), and activity limitation days (ALD). A variable's importance was measured as the average gains in R-squared after adding the variable to all sub-models. Statistical analysis was performed in 2023. RESULTS: After controlling for demographics, household mental illness was the most important ACE for SRGH, MUD, and ALD, with RIs of 16.4, 28.4 and 23.4, respectively. This ACE was ranked second for PUD (RI=17.8). Sexual abuse was ranked first for PUD (18.7), second for MUD (16.6) and ALD (20.9), and fifth for SRGH (10.4). Parental separation (RI ≤2.4) and incarcerated household member (2.8-5.4) were the least important ACEs for all four outcomes. Sexual abuse, parental separation, emotional abuse, and basic needs were not met were considerably more important among females while household mental illness and household substance abuse were more important among males. CONCLUSIONS: This study highlight that certain ACEs play a greater role than others for HRQOL with certain ACEs having a greater relative importance according to sex. Additionally, a significant proportion of the long-term impacts of ACE to HRQOL was indirectly through the mediation effect of other explanatory variables.

Testing the psychometric properties of 9 bolt-ons for the EQ-5D-5L in a general population sample.

OBJECTIVES: We aim to assess the psychometric performance and added value of nine existing bolt-ons (breathing problems, cognition, hearing, self-confidence, skin irritation, sleep, social relationships, tiredness and vision) for the EQ-5D-5L in a general population sample. METHODS: The EQ-5D-5L, nine bolt-ons, SF-6Dv1, PROMIS-29+2, PROMIS Global Health and Satisfaction With Life Scale were completed in an online cross-sectional survey among a general adult population sample in Hungary (n=1587). The following psychometric properties were tested for the EQ-5D-5L+bolt-on(s): ceiling, divergent and convergent validity, structural validity, known-group validity and explanatory power. RESULTS: Adding sleep (30%), tiredness (24%) or vision (21%) substantially reduced the ceiling of the EQ-5D-5L (41%). Cognition, sleep, social relationships and tiredness correlated with corresponding PROMIS and SF-6D items (rs=ǀ0.32ǀ-ǀ0.73ǀ). All bolt-ons, except cognition and self-confidence, loaded on a different factor from the EQ-5D-5L dimensions. Breathing, hearing, skin irritation and vision significantly improved known-group validity in relevant health condition groups. The sleep bolt-on improved known-group validity in 9 out of 13 chronic health conditions. Tiredness had the largest impact on explaining EQ VAS score variance in 8 out of 13 conditions. Hearing and vision improved the ability of the EQ-5D-5L to capture declining health with age, while self-confidence and social relationships were valuable for mental health assessment. CONCLUSIONS: This study established the validity of multiple bolt-ons for the EQ-5D-5L and highlights the usefulness of including relevant bolt-ons in population-based and patient surveys. Our findings inform the further development of these bolt-ons and the bolt-on item selection for clinical studies.

The mediating effect of uncertainty in illness between heart failure symptoms and health-related quality of life among rural patients with heart failure: A multi-center cross-sectional study.

BACKGROUND: The health-related quality of life (HRQoL) of patients with heart failure (HF) in rural settings in China remains unclear. Limited studies explored the mediating effect of uncertainty in illness between heart failure symptoms and HRQoL in this population. OBJECTIVES: To explore the status of HRQoL in rural patients with HF; assess the impact of HF symptoms and uncertainty in illness on HRQoL; and examine the mediating effect of uncertainty in illness on the relationship between symptoms and HRQoL in rural patients with HF. METHODS: Overall, 298 rural patients with HF were recruited from five township hospitals of Taishan and Jinzhong City in China between November 2021 and August 2022. Three variables, namely HF symptoms, uncertainty in illness, and HRQoL were measured using three validated scales. RESULTS: The average score of HRQoL in rural patients with HF was 43.19. Of the participants, 60.4 %, 35.23 %, and 4.37 % exhibited poor, moderate, and good HRQoL, respectively. The HF symptoms (ß = -0.47) and uncertainty in illness (ß = -0.34) directly influenced HRQoL. Moreover, the HF symptoms also indirectly affected HRQoL through uncertainty in illness (ß = -0.07). The indirect effect accounted for 12.96 % of the total effect of HF symptoms on HRQoL. CONCLUSION: Rural patients with HF exhibited poor HRQoL. In this population, HF symptoms and uncertainty in illness were negatively associated with HRQoL. Uncertainty in illness mediated the relationship between HF symptoms and HRQoL. Tailored healthcare services should be developed for the rural population to alleviate HF symptoms, reduce uncertainty in illness, and enhance their HRQoL.

Advanced Practice Nursing and CAR-T Cell Therapy: Opportunities, Challenges and Future Directions.

OBJECTIVES: Chimeric antigen receptor (CAR)-T cell therapy is a new treatment for patients with myeloma and other B cell malignancies where advanced practice nurses (APN) can make a great contribution. The aim of this review is to identify key aspects of current literature relevant to APNs working with this population. METHODS: Discussion of selected peer-reviewed literature and best practice guidelines found through electronic database searches (CINAHL, MEDLINE). RESULTS: Although few APN roles in CAR-T cell therapy have been published to date, recent research suggests that the APN is central to the care of these patients. They are essential for continuity of care and navigation through the treatment process, providing an important and consistent point of contact for patients' and carers' anxieties and uncertainties. APNs play a central role in symptom management, as they constantly incorporate new experience and scientific findings into the refinement of existing protocols. The continuum of care extends far beyond the inpatient stay and addresses symptoms that may persist long after cytokine release syndrome and neurotoxicity have resolved. The APN may therefore make a relevant contribution to patients' health-related quality of life, given its likely correlation with the dynamics and intensity of treatment-related symptoms. The APN also takes on a leadership role in the treatment team. CONCLUSIONS: APNs use all core competencies to sustainably support and empower patients and caregivers. This is achieved through counseling and education, in addition to identifying, developing, and implementing evidence-based symptom management. They play pivotal roles in introducing new CAR-T cell products, educating teams, and advancing their role through APN networks. Finally, APNs are integral members of multiprofessional teams, supporting colleagues in ethically challenging patient situations. IMPLICATIONS FOR NURSING PRACTICE: APNs in the field of CAR-T cell therapy make an important contribution to the continuous care of patients, caregivers, and treatment teams.

The Association of Behçet's Disease on the Quality of Life for Children and Their Parents.

Background and Aim Chronic diseases profoundly impact people's quality of life (QoL). Behçet's Disease (BD) is a multisystemic chronic disease characterized by vasculitis of various vessels. We aimed to assess QoL in pediatric BD patients and their parents. Methods We included pediatric BD patients meeting the pediatric BD classification criteria in a cross-sectional study conducted from June to December 2022. We recorded patients' clinical characteristics and assessed their QoL using PedsQL. Parents' QoL was evaluated using WHOQOL-Bref. Results The study involved 38 patients (60.5% girls, 39.5% boys) with a median age of 15.5 years (10-17) and a disease duration of 2 years (1-4) and their 38 parents. All patients exhibited oral aphthae, and many had other mucocutaneous findings: genital ulcers (78.9%), pseudofolliculitis (76.3%), and erythema nodosum (23.6%). Some patients had uveitis (13.1%), vascular (13.1%), neurological (10.5%), and gastrointestinal (5.2%) involvement. All patients were in remission under treatment during the study. Median PedsQL scores for total, physical health, and psychosocial health were 74.5(40-94.8), 76.5(43-100), and 75(25-92), respectively, with 14 patients scoring below the cut-off value. Girls had lower physical health scores than boys (p=0.004), and a negative correlation emerged between disease duration and PedsQL score (r=0.648, p=0.001). The median WHOQOL score among parents was 50(25-100), with 20 scoring below the cut-off value. Conclusion The QoL was low for one-third of children with pediatric BD and more than half of their parents.Similar to numerous chronic illnesses, factors such as the duration of the disease and gender were associated with the QoL in pediatric BD.

Health-Related Quality of Life of Post-Stroke Patients in a Public Hospital.

This study aimed to identify the correlation between influencing factors of activities of daily living (ADLs), mental health, and health-related quality of life (HRQoL) among post-stroke patients who enrolled in a transitional care service in a public hospital. This cross-sectional study involved 67 stroke patients who were enrolled in a transitional care service and visited the outpatient clinic at a public hospital in Seoul between March and December 2022. Their general characteristics, ADLs, mental health, and HRQoL were assessed. The data were analyzed using independent samples t-tests, analysis of variance, and Pearson correlation analysis, and the influencing factors were analyzed using regression analysis. HRQoL showed a statistically significant difference between patients living in different types of arrangements (t = 2.50, p = 0.015), and patients scores on the modified Rankin Scale (t = 7.08, p < 0.001). HRQoL was also significantly correlated with ADLs and mental health in stroke patients (r = -0.59, p < 0.001; r = -0.41, p < 0.001, respectively). Meanwhile, stroke severity (ß = -0.30, p = 0.002), living arrangements (ß = -0.30, p = 0.009) and ADLs (ß = -0.45, p < 0.001) were found to influence HRQoL (F = 6.87, p < 0.001, R2 = 0.47). Reduced dependence for ADLs, improvements in symptoms consequent to stroke, and support related to living arrangements contributed to improved HRQoL and interventions for post-stroke patients in the transitional care service of a public hospital.

Prevalence and determinants of health-related quality of life in chronic obstructive pulmonary disease patients in Yaoundé, Cameroon: a pilot study.

Introduction: the present study aimed to assess the health-related quality of life (HRQL) and identify the factors associated with poor quality of life, among chronic obstructive pulmonary disease (COPD) patients. Methods: we conducted a cross-sectional study at Jamot Hospital and Polymere Medical Center, Yaoundé, from February 1 to June 30, 2020. All consent adult COPD patients who were followed in both centers during the recruitment period were included. The Saint George's Respiratory Questionnaire (SGRQ) was used to assess HRQL. Poor quality of life was defined by an SGRQ score ≥30. Data analysis was performed using IBM SPSS Statistics 23.0 (IBM Corp., Armonk, New York, USA) software. Multiple logistic regression was used to identify the factors associated with poor quality of life. The statistical significance threshold was set at 0.05. Results: of the 63 patients invited to participate in the study, only 29 were finally included. Almost 3/5 (58.6%) were males, and their median age (interquartile range, IQR) was 68.0 (57.0 - 74.5) years. The median HRQL score (IQR) was 44.2 (23.2 - 65.0). The prevalence (95% confidence interval, 95% CI) of poor HRQL was 65.5% (48.3 - 82.8) %. The history of exacerbations during the last 12 months [odds ratio (95% CI) = 12.3 (1.1 - 136.7); p=0.04] emerged as the sole independent predictor of poor HRQL. Conclusion: the prevalence of poor health-related quality of life was high in these COPD patients. The presence of exacerbations in the past 12 months was an independent factor associated with poor HRQL in patients with COPD.