Changes in well-being among socially isolated older people during the COVID-19 pandemic: An outcome-wide analysis.

Older adults experienced major changes during the COVID-19 pandemic and ensuing restrictions, and it might be expected that those who were already socially isolated before the pandemic were particularly vulnerable. We apply an outcome-wide longitudinal design on 4,636 participants (mean age 66.8 y) from the English Longitudinal Study of Ageing, observed in 2018/19 and early (June/July 2020) and later (November/December 2020) in the pandemic. Social isolation is defined using an index including marital status, social contact, and social participation in 2018/19. Using mixed models, we compare changes in well-being, health, health behaviors, financial well-being, and Internet use, between isolated and nonisolated participants. From before to during the pandemic, isolated participants (29%) experienced smaller declines in life satisfaction and quality of life and a smaller increase in loneliness. They showed greater declines in smoking and physical activity and were more likely to remain worried about their future financial situation. They also did not change in their likelihood of regular Internet use, contrasting with nonisolated participants who increased in this regard. The groups followed a similar trend for general health and sleep quality (no change), depression and anxiety (increase), and expectations of future financial difficulties (decrease). Although isolated older adults generally show poorer outcomes than their socially connected counterparts, they were somewhat protected during the pandemic on some fronts. Our findings highlight the need to continually care for isolated older adults but also to be attentive in times of unexpected crises to those experiencing extreme changes related to necessary policy responses.

Three years of COVID-19 and life satisfaction in Europe: A macro view.

Every country in Europe experienced an adverse impact from the COVID-19 pandemic on life satisfaction, though on average, satisfaction with life in the summer of 2022 is about the same as the pre-pandemic value in the autumn of 2019. Typically, an upsurge in the severity of the pandemic (measured by the number of COVID-related deaths) is associated with declining life satisfaction and an ebbing, with increasing life satisfaction. Of the three waves of the pandemic between March 2020 and the autumn of 2022, the most severe impact typically occurred in 2021 during the second wave; in the third wave, the response declined due to the spread of effective vaccines and the takeover of omicron variants.

Peer-Driven Intervention for Care Coordination and Adherence Promotion for Obstructive Sleep Apnea: A Randomized, Parallel-Group Clinical Trial.

RATIONALE: Obstructive sleep apnea (OSA) is a common condition that is usually treated by continuous positive airway pressure (CPAP) therapy, but poor adherence is common and is associated with worse patient outcomes and experiences. Patient satisfaction is increasingly adopted as a quality indicator by healthcare systems. OBJECTIVE: We tested the hypothesis that peer-driven intervention effected through interactive voice-response(PDI-IVR) system leads to better patient satisfaction (primary outcome), care-coordination, and CPAP adherence when compared to active-control. METHODS: We performed a 6-month randomized, parallel-group, controlled trial with CPAP naïve patients recruited from four centers and CPAP-adherent patients who were trained to be mentors delivering support through an IVR system. MEASUREMENTS AND RESULTS: In 263 patients, intention-to-treat analysis global satisfaction for sleep-specific services was better in the intervention group (4.57+0.71 Likert scale score) than in the active-control group (4.10+1.13; P<0.001). CPAP adherence was greater in intervention group (4.5+0.2 hours/night; 62.0+3.0% of nights >4 hours usage) versus active-control group (3.7+0.2 hours/night; 51.4+3.0% of nights >4 hours usage; P=0.014 and P=0.023). When compared to active-control group, Patient Assessment of Chronic Illness Care ratings was moderately increased by an adjusted difference of 0.33+0.12 (P=0.009); Consumer Assessment of Healthcare Provider and Systems ratings was not different (adjusted difference of 0.46+0.26; P=0.076); and Client Perception of Coordination Questionnaire was mildly better in the intervention group (adjusted difference 0.15+0.07; P=0.035). CONCLUSION: Patient satisfaction with care delivery, CPAP adherence, and care-coordination was improved by peer-driven intervention through an IVR system. New payor policies compensating peer-support may enable implementation of this approach. Clinical trial registration available at www. CLINICALTRIALS: gov, ID: NCT02056002.

The scientific value of numerical measures of human feelings.

Human feelings measured in integers (my happiness is an 8 out of 10, my pain 2 out of 6) have no objective scientific basis. They are "made-up" numbers on a scale that does not exist. Yet such data are extensively collected-despite criticism from, especially, economists-by governments and international organizations. We examine this paradox. We draw upon longitudinal information on the feelings and decisions of tens of thousands of randomly sampled citizens followed through time over four decades in three countries (n = 700,000 approximately). First, we show that a single feelings integer has greater predictive power than does a combined set of economic and social variables. Second, there is a clear inverse relationship between feelings integers and subsequent get-me-out-of-here actions (in the domain of neighborhoods, partners, jobs, and hospital visits). Third, this feelings-to-actions relationship takes a generic form, is consistently replicable, and is fairly close to linear in structure. Therefore, it seems that human beings can successfully operationalize an integer scale for feelings even though there is no true scale. How individuals are able to achieve this is not currently known. The implied scientific puzzle-an inherently cross-disciplinary one-demands attention.

Neural synchronization predicts marital satisfaction.

Marital attachment plays an important role in maintaining intimate personal relationships and sustaining psychological well-being. Mate-selection theories suggest that people are more likely to marry someone with a similar personality and social status, yet evidence for the association between personality-based couple similarity measures and marital satisfaction has been inconsistent. A more direct and useful approach for understanding fundamental processes underlying marital satisfaction is to probe similarity of dynamic brain responses to maritally and socially relevant communicative cues, which may better reflect how married couples process information in real time and make sense of their mates and themselves. Here, we investigate shared neural representations based on intersubject synchronization (ISS) of brain responses during free viewing of marital life-related, and nonmarital, object-related movies. Compared to randomly selected pairs of couples, married couples showed significantly higher levels of ISS during viewing of marital movies and ISS between married couples predicted higher levels of marital satisfaction. ISS in the default mode network emerged as a strong predictor of marital satisfaction and canonical correlation analysis revealed a specific relation between ISS in this network and shared communication and egalitarian components of martial satisfaction. Our findings demonstrate that brain similarities that reflect real-time mental responses to subjective perceptions, thoughts, and feelings about interpersonal and social interactions are strong predictors of marital satisfaction, reflecting shared values and beliefs. Our study advances foundational knowledge of the neurobiological basis of human pair bonding.

Women and Men are the Barometers of Relationships: Testing the Predictive Power of Women's and Men's Relationship Satisfaction.

There is a longstanding belief in relationship science and popular opinion that women are the barometers in mixed-gender relationships such that their perceptions about the partnership carry more weight than men's in predicting future relationship satisfaction, but this idea has yet to be rigorously tested. We analyze data from two studies to test within-person links between men's and women's relationship satisfaction on their own and their partner's next-day and next-year satisfaction. Study 1 combined nine daily diary datasets from Canada and the United States with 901 mixed-gender couples who provided 29,541 daily reports of relationship satisfaction. Study 2 analyzed five annual waves of data from the German Family Panel (pairfam) that surveyed 3,405 mixed-gender couples who provided 21,115 relationship satisfaction reports. Latent curve models with structured residuals (LCM-SR) revealed that in both studies, men's and women's relationship satisfaction significantly predicted their own and their partner's relationship satisfaction, with no gender differences in the magnitude of these effects. Results underscore the interdependence of romantic partners' satisfaction and indicate that both men and women jointly shape romantic relationship satisfaction.

Explaining happiness trends in Europe.

In Europe, differences among countries in the overall change in happiness since the early 1980s have been due chiefly to the generosity of welfare state programs-increasing happiness going with increasing generosity and declining happiness with declining generosity. This is the principal conclusion from a time-series study of 10 Northern, Western, and Southern European countries with the requisite data. In the present study, cross-section analysis of recent data gives a misleading impression that economic growth, social capital, and/or quality of the environment are driving happiness trends, but in the long-term, time-series data, these variables have no relation to happiness.

Fasting vs no fasting prior to catheterisation laboratory procedures: the SCOFF trial.

BACKGROUND AND AIMS: Current guidelines recommend 6 hours of solid food and 2 hours of clear liquid fasting for patients undergoing cardiac procedures with conscious sedation. There are no data to support this practice, and previous single centre studies support the safety of removing fasting requirements. The objective of this study was to determine the non-inferiority of a no fasting strategy to fasting prior to cardiac catheterisation procedures which require conscious sedation. METHODS: This is a multicentre, investigator-initiated, non-inferiority randomised trial conduced in Australia with a prospective open label blinded endpoint design. Patients referred for coronary angiography, percutaneous coronary intervention or cardiac implantable electronic device (CIED) related procedures were enrolled. Patients were randomised 1:1 to fasting as normal (6 hours solid food and 2 hours clear liquid) or no fasting requirements (encouraged to have regular meals but not mandated to do so). Recruitment occurred from 2022 to 2023. The primary outcome was a composite of aspiration pneumonia, hypotension, hyperglycaemia and hypoglycaemia assessed with a Bayesian approach. Secondary outcomes included patient satisfaction score, new ventilation requirement (non-invasive and invasive), new intensive care unit admission, 30-day readmission, 30-day mortality, 30-day pneumonia. RESULTS: 716 patients were randomised with 358 in each group. Those in the fasting arm had significantly longer solid food fasting (13.2 versus 3.0 hours, Bayes factor >100 indicating extreme evidence of difference) and clear liquid fasting times (7.0 versus 2.4 hours, Bayes factor >100). The primary composite outcome occurred in 19.1% of patients in the fasting arm and 12.0% of patients in the no fasting arm. The estimate of the mean posterior difference in proportions in the primary composite outcome was -5.2% (95% CI -9.6 to -0.9, ) favouring no fasting. This result confirms non-inferiority (posterior probability >99.5%) and superiority (posterior probability 99.1%) of no fasting for the primary composite outcome. The no fasting arm had improved patient satisfaction scores with a posterior mean difference of 4.02 points (95% CI 3.36 to 4.67, Bayes factor >100). Secondary outcome events were similar. CONCLUSIONS: In patients undergoing cardiac catheterisation and CIED related procedures, no fasting was non-inferior and superior to fasting for the primary composite outcome of aspiration pneumonia, hypotension, hyperglycaemia and hypoglycaemia. Patient satisfaction scores were significantly better with no fasting. This supports removing fasting requirements for patients undergoing cardiac catheterisation laboratory procedures that require conscious sedation.

Patient survey on cancer genomic medicine in Japan under the national health insurance system.

In Japan, comprehensive genomic profiling (CGP) tests have been reimbursed under the national health care system for solid cancer patients who have finished standard treatment. More than 50,000 patients have taken the test since June 2019. We performed a nation-wide questionnaire survey between March 2021 and July 2022. Questionnaires were sent to 80 designated Cancer Genomic Medicine Hospitals. Of the 933 responses received, 370 (39.7%) were web based and 563 (60.3%) were paper based. Most patients (784, 84%) first learned about CGP tests from healthcare professionals, and 775 (83.1%) gave informed consent to their treating physician. At the time of informed consent, they were most worried about test results not leading to novel treatment (536, 57.4%). On a scale of 0-10, 702 respondents (75.2%) felt that the explanations of the test result were easy to understand (7 or higher). Ninety-one patients (9.8%) started their recommended treatment. Many patients could not receive recommended treatment because no approved drugs or clinical trials were available (102/177, 57.6%). Ninety-eight patients (10.5%) did not wish their findings to be disclosed. Overall satisfaction with the CGP test process was high, with 602 respondents (64.5%) giving a score of 7-10. The major reason for choosing 0-6 was that the CGP test result did not lead to new treatment (217/277, 78.3%). In conclusion, satisfaction with the CGP test process was high. Patients and family members need better access to information. More patients need to be treated with genomically matched therapy.

The Pediatric Integrated Care Survey (PICS) in a multidisciplinary clinic for Down syndrome.

The Pediatric Integrated Care Survey (PICS) is validated for use to measure the caregiver reported experience of integration and efficiency of all the aspects of their child. We began using the PICS survey to track changes in the patient experience, including throughout changing models of care during the COVID-19 pandemic. From February 2019 to June 2023, 62 responses from caregivers of individuals seen in the Massachusetts General Hospital Down Syndrome Program completed the PICS. Responses were scored using the standardized PICS user manual, and descriptive statistics were completed. The raw scores and composite monthly scores of the PICs were graphed in statistical process control charts. The average PICS score was 12.0 (range 2-19) out of a maximum score of 19; no shifts or trends were seen. Items with lowest scores indicated greatest opportunities for improvement related to: advice from other care team members, impact of decisions on the whole family, things causing stress or making it hard because of child's health, and offering opportunities to connect with other families. Studying the PICS in a specialty clinic for Down syndrome for the first time has established a baseline for future quality improvement work and interventions to increase care integration.

Sexual Health Assessment in Women with Lung Cancer study: Sexual health assessment in women with lung cancer.

BACKGROUND: Sexual health is understudied and underreported in patients with lung cancer, and most data precede the approval of widely used targeted therapies and immune checkpoint inhibitors. The authors sought to evaluate the prevalence of sexual dysfunction in women with lung cancer in our current clinical environment. METHODS: This cross-sectional survey study was administered online to 249 women via the GO2 for Lung Cancer (GO2) Registry, using the Patient-Reported Outcomes Measurement Information System Sexual Function and Satisfaction Measures questionnaire. Participants were recruited between June 2020 to June 2021. Eligibility criteria included age >18 years, self-identifying as a woman, fluency in English, and a lung cancer diagnosis within 10 years. RESULTS: Most (67%) had stage IV lung cancer and 47% were receiving targeted therapy; 66% were undergoing active treatment. Despite 54% of participants reporting "recent" sexual activity, most (77%) indicated having little to no interest in sexual activity and 48% reported recent minimal satisfaction with their sex life. The most common reasons negatively affecting participants' satisfaction with their sex life included fatigue (40%) and feeling sad/unhappy (28%). Common reasons for lack of recent sexual activity included lack of interest (68%) and vaginal dryness or pain (30%). Compared to pre-diagnosis, women were significantly less likely to have recent interest in sexual activity. In multivariable logistic-regression, vaginal dryness showed a significant negative association with recent interest in sexual activity. CONCLUSIONS: Sexual dysfunction is prevalent in women with lung cancer. Sexual health should be integrated into routine care for patients with lung cancer.

Identifying the drivers of overall rating of cancer care: Insights from the second wave of the Swiss Cancer Patient Experiences study.

BACKGROUND: Patient experience surveys gather information on various aspects of care via numerous survey items. Identifying the most critical areas of patient experience to prioritize for quality care improvement can be challenging. The objective of this study was to determine which care experience items are the drivers influencing patients' overall rating of cancer care. METHODS: Data from 2750 adult patients with cancer from the second wave of the Swiss Cancer Patient Experiences study were analyzed. This cross-sectional survey was conducted in eight Swiss hospitals from September 2021 to February 2022. Stepwise logistic regression examined the relationship between overall care rating and 29 patient experience items covering different patient-centered care dimensions while adjusting for sociodemographic and health variables. RESULTS: Overall, patients rated their cancer care experience at 8.9 out of 10. Stepwise regression identified seven drivers contributing to overall care rating. The strongest drivers were "professionals worked well together" (odds ratio [OR], 4.81) and "tests were not repeated" (OR, 2.09) from the coordination and integration dimension, "offered support for symptoms during treatment" (OR, 2.11) from the physical comfort dimension, followed by "hospital staff ensured available home support" (OR, 1.99), "offered to see health professional for concerns" (OR, 1.91), "treatment options were explained" (OR, 1.75), and "involved in treatment decisions as desired" (OR, 1.68). CONCLUSIONS: This study evaluated the care experiences of patients with cancer with a comprehensive tool that identified seven key factors independently associated with overall care rating. By concentrating on these areas, hospitals can not only improve the patient care experience but also efficiently allocate resources to quality improvement initiatives.

Subcutaneous immunoglobulin replacement therapy in patients with immunodeficiencies - impact of drug packaging and administration method on patient reported outcomes.

BACKGROUND: Here, the perspective of patients with primary and secondary immunodeficiency receiving subcutaneous immunoglobulin (SCIg) via introductory smaller size pre-filled syringes (PFS) or vials were compared. METHODS: An online survey was conducted in Canada by the Association des Patients Immunodéficients du Québec (APIQ) (10/2020-03/2021). Survey questions included: reasons for choosing SCIg packaging and administration methods, training experiences, infusion characteristics, and switching methods. The survey captured structured patient-reported outcomes: treatment satisfaction and its sub-domains, symptom state, general health perception, and physical and mental function. Respondents using PFS were compared with vial users, overall and stratified by their administration method (pump or manual push). RESULTS: Of the 132 total respondents, 66 respondents used vials, with 38 using a pump and 28 using manual push. PFS (5 and 10 mL sizes) were being used by 120 respondents, with 38 using a pump and 82 using manual push. PFS users were associated with a 17% lower median (interquartile range) SCIg dose (10 [8, 12] vs. 12 [9, 16] g/week, respectively), a significantly shorter infusion preparation time (15 [10, 20] vs. 15 [10, 30] mins, respectively), and a trend for shorter length of infusion (60 [35, 90] vs. 70 [48, 90] mins, respectively) compared with those on vials. Patient-reported treatment satisfaction scores were overall similar between vial and PFS users (including on the domains of effectiveness and convenience), except for a higher score for vials over PFS on the domain of global satisfaction (p=0.02). CONCLUSIONS: Consistent with prescribing that reflects a recognition of less wastage, PFS users were associated with a significantly lower SCIg dose compared with vial users. PFS users were also associated with shorter pre-infusion times, reflecting simpler administration mechanics compared with vial users. Higher global satisfaction with treatment among vial users compared with PFS users was consistent with users being limited to smaller PFS size options in Canada during the study period. Patient experience on PFS is expected to improve with the introduction of larger PFS sizes. Overall, treatment satisfaction for SCIg remains consistently high with the introduction of PFS packaging compared with vials.

Insights into Patient Experiences with Facilitated Subcutaneous Immunoglobulin Therapy in Primary Immune Deficiency: A Prospective Observational Cohort.

BACKGROUND: Immunoglobulin G replacement therapy (IgRT), intravenous (IV) and subcutaneous (SC) routes, is pivotal in treatment of primary immunodeficiencies (PID). In recent years, facilitated subcutaneous immunoglobulin (fSCIG), a combination of rHuPH20 and 10% IgG has emerged as a delivery method to combine advantages of both IV and SC. METHOD: In an observational prospective cohort, we investigated patient experience with fSCIG in PID patients from 5 PID centers for up to 12 months. We assessed the efficacy and safety of this treatment with patient/caregiver- and physician-reported indicators. Additionally, we analyzed patient treatment satisfaction (TSQM-9) and quality of life (QoL). RESULTS: We enrolled 29 patients (22 pediatric and 7 adults; 14 females and 15 males; (median: 15, min-max: 2-40.9 years) who initiated fSCIG as IgRT-naive (n = 1), switched from conventional rapid-push 10% SCIG (n = 6) or IVIG (n = 22). Among the participants, 19 (65%) exhibited antibody deficiencies, 8 (27%) combined immunodeficiencies, and 2 (7%) immune dysregulations. Remarkably, targeted trough immunoglobulin G levels were achieved under all previous IgRTs as well as fSCIG. No severe systemic adverse drug reactions were documented, despite prevalent local (%86.45) and mild systemic (%26.45) adverse reactions were noted with fSCIG. Due to mild systemic symptoms, 2 patients switched from fSCIG to 10% SCIG. The patient satisfaction survey revealed a notable increase at 2-4th (p = 0.102); 5-8th (p = 0.006) and 9-12th (p < 0.001) months compared to the baseline. No significant trends were observed in QoL surveys. CONCLUSION: fSCIG demonstrates admissable tolerability and efficacy in managing PIDs in addition to notable increase of patients' drug satisfaction with IgRT. The identified benefits support the continuation of this therapy despite the local reactions.

Patient-Reported Outcomes and Medical Provider Satisfaction Among Adult and Pediatric Ataxia-Telangiectasia Patients.

PURPOSE: Ataxia-telangiectasia (A-T) is a rare genetic condition with malfunctioning DNA repair processes resulting in significant clinical findings, including progressive neurologic decline, elevated malignancy risk, immunodeficiency, oculocutaneous telangiectasias, and severe pulmonary disease. Research has been limited into the quality of life of such patients and yet to be completed are studies quantitatively analyzing psychosocial, physical, and cognitive patient-reported outcomes (PROs) within the A-T population. METHODS: PRO evaluations of 90 international adult and pediatric A-T patients and their caregivers were completed via secure online administration of Patient-Reported Outcomes Measurement Information System (PROMIS) short forms evaluating anger, cognition, mood, social health, fatigue, pain, anxiety, and upper extremity function. The impact of age, gender, race/ethnicity, prior malignancy diagnosis, and current supportive treatment interventions on such PROs was additionally assessed. Finally, given the importance of medical providers in the care of A-T patients and the impact of patient satisfaction on healthcare outcomes, we further analyzed, via a novel survey, how patients and caregivers perceived their primary A-T healthcare provider's A-T expertise, trustworthiness, accessibility, and level of compassion. RESULTS/CONCLUSION: It was found that a diagnosis of A-T complexly impacts patient PROs, but such data offers the potential for preventative and therapeutic interventions to improve the care of such patients. While most A-T patients and their caregivers feel their primary A-T medical provider has expertise and compassion in addition to being accessible and trustworthy, a significant percentage of study subjects did not agree that their provider was an expert in A-T or overall trustworthy.

Patient-reported outcome measures for medication treatment satisfaction: a systematic review of measure development and measurement properties.

BACKGROUND: Medication Treatment Satisfaction (M-TS) from the patients' perspective is important for comprehensively evaluating the effect of medicines. The extent to which current patient-reported outcome measures (PROMs) for M-TS are valid, reliable, responsive, and interpretable remains unclear. To assess the measurement properties of existing PROMs for M-TS and to highlight research gaps. METHODS: Using PubMed, Embase (Ovid), Cochrane library (Ovid), IPA (Ovid), PsycINFO, Patient-Reported Outcome and Quality of Life Questionnaires biomedical databases, and four Chinese databases, we performed a systematic search for studies addressing the development and validation of PROMs for M-TS. Based on the Consensus-based Standards for the selection of health Measurement Instruments (COSMIN) guideline, pairs of reviewers independently assessed the measurement properties of the PROMs and rated the quality of evidence on the measurement properties of each PROM. (The Open Science Framework registration: https://doi.org/10.17605/OSF.IO/8S5ZM ). RESULTS: This review identified 69 PROMs for M-TS in 114 studies (four generic, 32 disease-specific, and 33 drug-specific) of which 60 were intended for adults. All provided limited or no information regarding interpretability. Most demonstrated appropriate construct validity including convergent validity (39/69) and discriminative or known-groups validity (40/69) (high to moderate quality of evidence). Only a few provided evidence of sufficient content validity (8/69), structural validity (13/69), and internal consistency (11/69). Of 38 PROMs reporting test-retest reliability, results in 24 provided evidence of satisfactory test-retest reliability (18 with high to moderate, 6 with low to very low quality of evidence). Few PROMs reported responsiveness (16/69). Two generic PROMs (Treatment Satisfaction Questionnaire for Medication initial Version 1.4, TSQM-1.4; Treatment Satisfaction with Medicines Questionnaire, SATMED-Q) and one drug-specific PROM (Insulin Treatment Satisfaction Questionnaire, ITSQ) demonstrated both satisfactory validity and reliability. CONCLUSIONS: Most existing PROMs for M-TS require further exploration of measurement properties. Reporting guidelines are needed to enhance the reporting quality of the development and validation of PROMs for M-TS.

Differences in trajectories of quality of life according to type of dementia: 6-year longitudinal findings from the IDEAL programme.

BACKGROUND: People with different types of dementia may have distinct symptoms and experiences that affect their quality of life. This study investigated whether quality of life varied across types of dementia and over time. METHODS: The participants were 1555 people with mild-to-moderate dementia and 1327 carers from the IDEAL longitudinal cohort study, recruited from clinical services. As many as possible were followed for up to 6 years. Diagnoses included were Alzheimer's disease, vascular dementia, mixed Alzheimer's and vascular dementia, Parkinson's disease dementia, dementia with Lewy bodies, and frontotemporal dementia. Self- and informant-rated versions of the Quality of Life in Alzheimer's Disease scale were used. A joint model, incorporating a mixed effects model with random effects and a survival model to account for dropout, was used to examine whether quality of life varied by dementia type at the time of diagnosis and how trajectories changed over time. RESULTS: The strongest associations between dementia type and quality of life were seen around the time of diagnosis. For both self-ratings and informant ratings, people with Parkinson's disease dementia or dementia with Lewy bodies had lower quality of life scores. Over time there was little change in self-rated scores across all dementia types (- 0.15 points per year). Informant-rated scores declined over time (- 1.63 points per year), with the greatest decline seen in ratings by informants for people with dementia with Lewy bodies (- 2.18 points per year). CONCLUSIONS: Self-rated quality of life scores were relatively stable over time whilst informant ratings showed a steeper decline. People with Parkinson's disease dementia or dementia with Lewy bodies report particularly low levels of quality of life, indicating the importance of greater attention to the needs of these groups.

Influences of HPV disease perceptions, vaccine accessibility, and information exposure on social media on HPV vaccination uptake among 11,678 mothers with daughters aged 9-17 years in China: a cross-sectional study.

BACKGROUND: Mothers play a crucial role in influencing their daughters' HPV vaccination decisions. Addressing barriers to receiving HPV vaccination among mothers of girls may achieve two goals in one strike: increasing vaccination coverage among both mothers and their daughters. This study aims to examine the HPV vaccination uptake and its determinants among mothers of girls in China at both the individual and interpersonal levels. METHODS: From July to October 2023, a cross-sectional online study was conducted to investigate HPV vaccine refusal for daughters aged 9-17 years among 11,678 mothers in Shenzhen, China. A randomized selection method was employed, targeting 11 primary schools and 13 secondary schools in Shenzhen. The research team invited mothers of girls to participate in an anonymous online survey. Multilevel logistic regression models (level 1: schools; level 2: individual participants) were employed to analyze the data. RESULTS: Among 11,678 mothers, 41.1% self-reported receiving at least one dose of HPV vaccination. Through multilevel logistic regression analysis, eight items measuring illness representations of HPV, which refers to how people think about HPV, were associated with higher HPV vaccination uptake (AOR: 1.02-1.14). These items included identity (identifying symptoms of HPV), timeline (whether HPV is acute/chronic), negative consequences, personal and treatment control (whether HPV is under volitional control), concern, negative emotions, and coherence (overall understanding of HPV). In addition, participants refusing HPV vaccines for the index daughters (AOR: 0.82, 95%CI: 0.76, 0.89) had lower vaccine uptake. Perceived more difficulties in accessing the 9-valent vaccines (AOR: 1.06, 95%CI: 1.04, 1.08) and more satisfaction with vaccine-related promotional materials (AOR: 1.50, 95%CI: 1.46, 1.54) at the individual level were associated with higher vaccine uptake. At the interpersonal factors, higher frequency of exposure to testimonials given by others about HPV vaccination on social media (AOR: 1.19, 95%CI: 1.14, 1.25) and thoughtful consideration of the veracity of the information (AOR: 1.11, 95%CI: 1.07, 1.16) were correlated with higher HPV vaccination uptake. CONCLUSIONS: These findings offer essential implications for modifying HPV disease perceptions, addressing difficulties in accessing the 9-valent HPV vaccines, and enhancing health communication needs to improve HPV vaccine uptake among mothers of girls.

Group-based medical mistrust in genomic medicine: Associations with patient and provider perceptions of a specialty clinical encounter.

PURPOSE: Investigating associations between group-based medical mistrust (GBMM) and perceptions of patient-provider encounters can identify one mechanism through which GBMM may influence health outcomes and serve as a barrier to equitable health care. This study investigated associations between GBMM reported by caregivers of children with a possible genetic condition and caregivers' and providers' perceptions of a specialty care appointment discussing diagnostic plans. METHODS: Caregivers (N = 177) completed the GBMM scale and other measures before their child's initial specialty clinic visit. After the visit, caregivers reported their perceptions of the visit, including patient centeredness and satisfaction with care. Providers (N = 6) reported their perceptions of patient engagement. RESULTS: Multivariable linear regression showed that higher caregiver GBMM was associated with caregivers' lower satisfaction with care (P < .01) and more negative perceptions of every domain of patient centeredness (P = .001-.04). Multilevel modeling showed that higher caregiver GBMM was associated with more negative provider perceptions of caregivers' preparedness to participate in care (P = .03), likely treatment compliance (P = .03), and relevance of questions asked during visit (P = .04). CONCLUSION: Our findings extend evidence for detrimental effects of GBMM on patient satisfaction to caregivers of pediatric patients and offer new evidence for associations with health care providers' perceptions of caregivers' engagement with care.

Perineal Urethrostomy for Complex Urethral Strictures: Long-Term Patient-Reported Outcomes From a Reconstructive Referral Center and a Scoping Literature Review.

PURPOSE: There is a paucity of long-term objective and patient-reported outcomes after definitive perineal urethrostomy for complex urethral strictures. Our objective is to determine comprehensive long-term success of perineal urethrostomy with our 15-year experience at a reconstructive referral center. MATERIALS AND METHODS: Patients who underwent perineal urethrostomy between 2009 and 2023 were identified. A comprehensive long-term follow-up was conducted, evaluating both objective outcomes (retreatment-free survival) and subjective outcomes through the use of validated questionnaires. Additionally, to provide further context for our findings, we conducted a scoping review of all studies reporting outcomes following perineal urethrostomy. RESULTS: Among 76 patients, 55% had iatrogenic strictures, with 82% previously undergoing urethral interventions. At a median follow-up of 55 months, retreatment-free survival was 84%, with 16% of patients experiencing perineal urethrostomy recurrent stenosis. Patient-reported outcomes revealed a generally satisfactory voiding function (Urethral Stricture Surgery Patient-Reported Outcome Measure Lower Urinary Tract Symptoms score) and continence (International Consultation on Incontinence Questionnaire-Urinary Incontinence Short Form), with median scores of 4 (range 0-24) and 0 (range 0-21), but with bimodal distributions of sexual function scores (median International Index of Erectile Function-Erectile Function domain: 3.5; median Male Sexual Health Questionnaire-Ejaculation Scale: 21). Treatment satisfaction was very high with a median International Consultation on Incontinence Questionnaire-Satisfaction outcome score of 21 (range 0-24). The scoping review revealed varying success rates ranging from 51% to 95%, highlighting difficulties in comparison due to variable success definitions and patient case mix. CONCLUSIONS: Perineal urethrostomy provides effective treatment for complex anterior urethral strictures, with high patient satisfaction, preserved continence function, and favorable voiding outcomes. It presents a viable option for older and comorbid patients, especially after thorough counseling on expected outcomes and potential risks.