Osteochondral allograft transplantation (OCAT) is an effective treatment option for young, active patients with full-thickness articular cartilage defects, but long-term success is limited by treatment failures often linked to nonadherence to postoperative protocols. Validated methods for preoperative identification of patients at risk for nonadherence and/or poor outcomes following OCAT are limited. This study aimed to characterize the ability of a health behavior psychologist (HBP) to preoperatively delineate patient-specific barriers associated with nonadherence and failure following OCAT. Patients were prospectively enrolled in a lifelong, institutionally approved registry. Patients were eligible for inclusion if they had a preoperative evaluation with an HBP. Demographic, biopsychosocial, patient-reported outcomes surveys, and adherence status were collected. Risk domains (low, medium, high) were assigned by the HBP based on the presence and severity of barriers identified during HBP evaluations. OCAT patients (n = 99) were evaluated and assigned a risk domain: (low-risk [n = 41], medium-risk [n = 44], high-risk [n = 14]). Patients in medium- and high-risk cohorts reported significantly more barriers, including mental health issues, limited social support, and high-demand occupations, compared with low-risk patients. Nonadherence rates were significantly higher in medium- and high-risk cohorts; however, nonadherence was not significantly associated with treatment failure. The low-risk cohort reported better mental health and satisfaction outcomes, whereas medium- and high-risk patients had worse physical health outcomes. Preoperative HBP evaluations effectively identified patient-specific barriers to adherence, enabling targeted interventions to improve OCAT surgery outcomes. Integrating behavioral health support into orthopaedic care may improve adherence, highlighting the need for broader implementation and further studies.Level of Evidence 2, prospective cohort study.

Immediate side effects after chimeric antigen receptor (CAR) T-cell therapy are well documented and include cytokine release syndrome (CRS) and immune effector-cell-associated neurotoxicity (ICANS). However, long-term patient-reported outcomes are understudied. Using a social determinants of health (SDoH) framework, we described the long-term health-related quality of life (HRQoL), cognitive function, and symptom burden of patients in sustained remission after CAR T-cell therapy and examined the relationship between acute CRS and ICANS and long-term cognitive function and symptom burden.

This cross-sectional study included adults in remission after CAR T-cell therapy for multiple myeloma or B-cell lymphoma who were within 1-5 years post-treatment. We used bivariate analyses to measure associations between clinical and SDoH variables and long-term outcomes and linear regression to examine the relationship between ICANS and CRS toxicity and longer-term outcomes.

Participants (n = 58) were a median of 67 years of age (22-88), 72% had lymphoma, 28% had multiple myeloma, and they were a median of 2 years (1-4.7) post-CAR T-cell infusion. Most of the participants reported good HRQoL. Over one third of participants reported mild-to-moderate impairment in physical function, social roles and activities, or pain domains. Higher income and employment were significantly associated with better physical HRQoL (P < .05). Participants reported low symptom burden, with fatigue most commonly reported. Neither CRS nor ICANS toxicity predicted long-term cognitive function or symptom burden.

Patients in long-term remission after CAR T-cell therapy have good HRQoL and cognitive function with minimal symptom burden. Importantly, there was no relationship between CRS and ICANS and long-term symptom burden or cognitive function. Results support the long-term clinical benefit of CAR T-cell therapy.

Methods for collecting self-reported health status measures in population health surveys vary significantly across countries, presenting challenges to comparability. The EuroQol Data for Assessment of Population Health Needs and Instrument Evaluation (EQ-DAPHNIE) project aims to address this issue by developing infrastructure to generate representative datasets across multiple countries. This initiative aims to standardize data collection methodologies and to evaluate the performance of various health status measures, providing a foundation for reliable population health assessments. This paper describes the rationale, design and data collection methods for the EQ-DAPHNIE project.

EQ-DAPHNIE employs a cross-sectional online survey design targeting the general adult population across various countries. Participants were recruited through an online panel provider. Each country had a target sample of 4500 responses, with quota sampling to ensure representativeness based on age, sex, income, region, and language. The survey collected comprehensive data on social determinants of health at both individual and neighbourhood levels. Participation was voluntary, and measures were taken to maintain data anonymity and ensure data quality through pre-testing and various quality assurance approaches.

The EQ-DAPHNIE project represents a significant advancement in generating large, representative, and comparable population health datasets across multiple countries. By employing precise sampling strategies, robust recruitment and data collection methods, and rigorous quality control measures, the project aims to provide a valuable resource for assessing and understanding population health and evaluating various health-related quality of life (HRQoL) and wellbeing instruments.

We investigated the validity of the German and Spanish translations of 35 new high functioning items added to the Patient Reported Outcomes Measurement Information System (PROMIS®) Physical Function item bank 2.0. We assessed differential item functioning (DIF) between three general population samples from Argentina, Germany, and the United States.

PROMIS Physical Function data was collected in online panels from 3601 individuals (mean age, 41.6 years old; range, 18-88 years; 53.7% female). Of these, 1001 participants completed the Spanish version, 1000 completed the German version, and 1600 completed the English version. DIF was assessed by a multiverse analysis that systematically varied analytic choices across the entire range of plausible options within the logistic ordinal regression framework.

Translated items generally met the assumptions of unidimensionality, monotonicity, and local independence. The 272 different analyses suggest consistent DIF between languages in four items. Test characteristic curves suggested that the magnitude and impact of DIF on the test scores were negligible for all items at the test level. After correcting for potential DIF, we observed greater scoring for physical functioning in Argentina compared to the US, Cohen's d = 0.25, [0.17, 0.33], and Argentina compared to Germany, Cohen's d = 0.23, [0.15, 0.32].

Our findings support the universal applicability of PROMIS Physical Function items across general populations in Argentina, Germany, and the U.S. The sensitivity analyses indicate that the identification of DIF items was robust for different data analytic decisions. Multiverse analysis is a promising approach to address lack of clear cutoffs in DIF identification.

Study DesignRetrospective chart review.ObjectivesTransforaminal lumbar interbody fusion (TLIF) via open or minimally invasive (MI) techniques is commonly performed. Mobile applications for home-based therapy programs have grown in popularity. The purpose of this study was to (1) compare patient-reported outcome measures (PROMs) between postoperative patients who were the most and least compliant in using the mobile-based rehabilitation programs, (2) compare PROMs between open vs MI-TLIF cohorts, and (3) quantify overall compliance rates of home-based rehabilitation programs.MethodsA retrospective chart review was performed. Patients were automatically enrolled in the rehabilitation program. Patient-Reported Outcomes Measurement Information System (PROMIS) and Oswestry Disability Index (ODI) scores were collected. Patients were separated into two study groups. Compliance rate was calculated as the difference between the number of active participants at the preoperative phase and final follow-up.Results220 patients were included. Average follow-up time was 23.2 months. No difference was found in the change in (∆) PROMIS scores (P = 0.261) or ∆ODI scores (P = 0.690) regardless of patient compliance. No difference was found in outcome scores between open vs MI-TLIF techniques stratified by download compliance (downloaded, DL+; did not download, DL-) and phone reminder compliance (set reminder, R+; did not set reminder, R-) postoperatively. Both cohorts demonstrated clinical improvement exceeding minimal clinically important difference at final follow-up. Overall patient compliance was 71% at final postoperative follow up.ConclusionDespite high long-term compliance and rising popularity, mobile applications for home-based postoperative rehabilitation programs have low clinical utility in patients undergoing TLIF.

Evaluating postoperative outcomes in Chiari I malformation represents a challenge. Patient-Reported Outcomes Measurement Information System (PROMIS) Physical Health (PH) and Mental Health (MH) metrics are highly reliable measures of patient-reported health status commonly used and validated in spine and stroke populations. We investigate the validity of PROMIS-PH and PROMIS-MH in tracking postoperative success following decompressive surgery for Chiari I malformation.

Adult patients undergoing decompressive surgery for Chiari I malformation at our institution were identified. Prospectively administered pre- and postoperative PROMIS-PH and MH scores were of interest, from which postoperative score improvement was calculated. The current standard for discerning surgical success, postoperative physician gestalt, was retrospectively assigned as "improved" or "unimproved" following review of the clinical documentation at a time point coinciding with the postoperative PROMIS score. Univariable logistic regression and receiver operative characteristic (ROC) analyses were performed to validate postoperative PROMIS improvement as a metric for clinical success.

One hundred thirteen patients were identified (mean follow-up: 14.4 months). Seventy-four (65.5 %) patients experienced clinical improvement according to physician gestalt assessment. Postoperative PROMIS-PH score change was superior in the "improved" patients (improved: 8.5, unimproved: -2.5), p < .001. Logistic regression demonstrated PROMIS-PH to be an independent predictor of clinical improvement, with OR of 1.44 (95 % CI: 1.27-1.70). ROC area was 0.852 with mean clinically important difference of 3.0. PROMIS-MH was not a satisfactory predictor of surgical success (ROC area: 0.740).

Postoperative PROMIS-PH score improvement serves as a responsive and valid metric for trending postoperative outcomes in the Chiari I population.

While the Patient-Reported Outcomes Measurement Information System (PROMIS) global health scales are frequently used to assess individual quality of life, it has yet to be validated in gastrointestinal cohorts. Based on the Rome Foundation Global Epidemiology Survey, the aim of this study was to conduct the most comprehensive psychometric evaluation of the PROMIS health scales (8-item and revised 4-item) across gastrointestinal and non-gastrointestinal condition cohorts.

A cross-sectional survey was conducted in 26 countries. A series of confirmatory factor and reliability analyses were undertaken across gastrointestinal condition groups, that is, Disorders of Gut-Brain Interaction (DGBI) [any DGBI, individual DGBI, and DGBI anatomic region], gastroesophageal reflux disease, chronic constipation, chronic diarrhea, coeliac disease, diverticulitis, inflammatory bowel disease, cancer anywhere in the gastrointestinal tract, and peptic ulcer and a non-gastrointestinal condition group. Convergent validity was also assessed via a series of Pearson's correlation coefficients with PHQ-4 (anxiety and depression) and PHQ-12 (somatization).

Based on 54,040 participants (50.9% male; mean age 44.33 years) confirmatory factor analysis indicated a poor fit for the original Hays et al. 4-item version of the PROMIS global health scale. The briefer version 2-factor 2-item model (the Rome alternate model) yielded acceptable fit across all groups. The Hays 2-factor 2-item model subscales also demonstrated strong convergent, content, and construct validity with original PROMIS global health scale subscales across all groups and DGBI regions and across anxiety, depression, and somatization.

The 4-item revised version of the Hays model of the PROMIS global health scale demonstrates stronger psychometric properties compared to the original Hays model. This ultra-brief assessment instrument is a viable tool for assessing quality of life in gastrointestinal and non-gastrointestinal cohorts.

Disordered eating is frequently reported in patients with inflammatory bowel disease (IBD). We aimed to describe the prevalence of avoidant restrictive food intake disorder (ARFID) in patients with IBD and to identify predictors of ARFID.

Patients with IBD at 2 academic medical centers completed questionnaires including the ARFID subscale of the Pica, ARFID, and Rumination Disorder Questionnaire (PARDI-AR-Q), disease characteristics, and psychosocial variables. IBD disease activity was determined by a review of objective data within 90 days of survey completion.

Three hundred and twenty-five participants completed the questionnaires (56% female, average age 47.60 years, 49.5% Crohn's disease (CD), 45.5% ulcerative colitis (UC)). Using the PARDI-AR-Q, 17.8% of the total sample screened positive for ARFID. ARFID+ respondents were younger, had shorter disease duration, and worse psychosocial functioning compared to ARFID-. A higher percentage of ARFID+ patients had objective disease activity compared to ARFID- (51% vs. 40%), but this was not statistically significant. There was no statistical difference in ARFID rates between patients with CD compared to UC. In patients with inactive disease only, 16.3% screened positive for ARFID. In hierarchical logistic regression, the only significant predictor of ARFID among patients with inactive IBD was GI-specific anxiety.

In this multi-center study, 16.3% of patients with inactive IBD met the criteria for ARFID, and 17.8% of all patients met the criteria regardless of objective disease activity. GI-specific anxiety was the only predictor of ARFID among patients with inactive IBD, highlighting the need for multidisciplinary care in IBD.

To delineate the key factors associated with treatment success or failure for patients undergoing lower extremity osteotomies to address a spectrum of lower extremity joint and limb deformities at an Integrated Limb Preservation Center (ILPC).

Design: Retrospective cohort study. Setting: Level I Academic Trauma Center. Patient selection criteria: Patients of the ILPC with at least 1-year of follow-up data regarding previous surgery to correct trauma-or developmental-related deformities between January 1, 2005, and October 1, 2022. Outcome measures and comparisons: Patients were categorized first based on etiology (developmental vs. traumatic) and then based on the nature of deformity (joint, limb, nonunion). Treatment data, demographics including age, sex, body mass index (BMI), tobacco use history, insurance status, marital status, mental health history, and history of comorbidities, concurrent procedures, and post-operative infection, revision, reoperation, and bone healing status were extracted from the medical record and compared. Treatment failure was defined as conversion of the limb preservation surgery (ies) to amputation of any type.

139 patients were included for analysis; 47 patients in the developmental-related cohort, and 92 patients in the trauma-related cohort. The treatment success rate in terms of preserving the affected limb for patients undergoing lower extremity osteotomies was 94.7 % for the developmental-related cohort and 92.4 % for the traumatic-related cohort. 57.4 % of patients in the developmental-related cohort and 59.8 % of patients in the trauma-related underwent unplanned secondary procedures Concurrent osteomyelitis debridement (p = 0.01) and postoperative infection (p = 0.049) were the only factors measured significantly associated with conversion to amputation.

Patients undergoing osteotomies at an ILPC to address developmental-related or trauma-related joint and/or limb deformities experienced high short-term success (>90 %) with respect to preserving the affected limb. However, 56 % of patients required subsequent unplanned surgeries and improvements in PROMs were only statistically significant in patients with trauma-related deformities.

III.

To assess the impact of hypoglossal nerve stimulation (HNS) on neurocognitive, psychological, and sleep outcomes in older adults with obstructive sleep apnea (OSA).

A retrospective analysis of 42 patients aged 50 years and older who underwent HNS for OSA was conducted. Patient-reported outcomes were collected using validated tools, including the Insomnia Severity Index (ISI), PROMIS measures (Sleep-Related Impairment, Cognitive Function, Depression, Anxiety, Anger, Physical Function), Epworth Sleepiness Scale (ESS), Functional Outcomes of Sleep Questionnaire (FOSQ-10), and NIH Toolbox Loneliness survey. Pre- and post-HNS scores were compared using paired t-tests and Wilcoxon tests.

Significant improvements were observed in apnea-hypopnea index (AHI) (-17.6, P < .0001), ISI (-7.02, P < .0001), ESS (-3.4, P < .0001), and FOSQ (4.05, P < .0001). PROMIS measures showed significant posttreatment improvements in sleep impairment, cognitive function, depression, anxiety, anger, and loneliness (all P < .01). Physical function and pain did not change.

HNS significantly improves sleep characteristics, cognitive function, and psychosocial outcomes in older adults with OSA. Future studies should include larger and more diverse samples with longer follow-up, as well as a control condition.

The wellbeing of health care workers (HCWs) has been an ongoing challenge, especially within low and middle-income countries (LMICs) such as South Africa. Evidence suggesting that HCWs are increasingly stressed and burned out is cause for concern. Nurses in particular have been impacted physically, mentally and psychosocially during the recent COVID-19 pandemic. This may leave a disproportionate consequence, affecting various aspects of their wellbeing, thereby justifying a need for a more holistic investigation of the wellbeing of South African nurses and their coping mechanisms during the peak of the pandemic.

This was a cross-sectional study design. Online self-reported questionnaires were administered in six hospitals, sampled purposively and conveniently from three South African provinces. Using STATA 18.0, the Wilcoxon Ranksum test at 5% alpha compared the wellbeing and coping mechanisms of nursing staff and nursing management during COVID-19's peak. Univariable and multivariable linear regression analyses were performed to determine factors associated with burnout in nurses, at a 95% confidence interval (CI). Validated scales measuring burnout, coping, resilience, as well as mental and physical health were utilised.

Of 139 participants, 112(97.4%) were females, with 91(82%) and 20(18%) being nursing staff and management respectively. The median age of the participants was 43.3 years (n = 112), with a practising duration of 12 years (n = 111). There was a significant difference in the burnout score between nursing staff and nursing management (p = 0.028). In the univariable linear regression model, burnout was significantly (p < 0.05) associated with the Brief COPE Inventory (BCI), Conor-Davidson Resilience Scale (CDRS), Global Mental and Health Scale (GMHS), Global Physical and Health Scale (GPHS) and Hospital Anxiety and Depression Scale (HADS), as well as occupation. In the multivariable linear regression model, burnout was significantly associated with the CDRS [Coeff.=0.7, 95%CI 0.4; 0.9], GMHS [Coeff.=-2.4, 95%CI -3.2; -1.6], GPHS [Coeff.2.1, 95%CI 1.3; 2.9], and HADS [Coeff.=0.7, 95%CI 0.2; 1.2].

Investigating multiple aspects of wellbeing in this study, it's shown that coping and resilience may not be key factors in promoting the wellbeing of South African nurses. However, effective mental health interventions are crucial and should be prioritised to mitigate burnout during future health emergencies. Future studies examining the associations between general health, coping and resilience may help generate further evidence towards holistic interventions aimed at promoting nurses' wellbeing.

Not applicable.

There has been a rapid expansion of novel therapeutics for hematologic malignancies, including monoclonal antibodies, small molecules, and cellular therapies, which confer different treatment-related toxicities and symptomatic adverse events (AEs) than traditional cytotoxic chemotherapies. Given that patients with blood cancers are living longer with these newer treatments, with some therapies requiring indefinite or time-intensive administration, consideration of patient-reported tolerability and effects on health-related quality of life (HRQoL) are increasingly relevant. Historically, clinical trials have focused on the efficacy and safety of therapies. While related to safety and not intended to replace it, "treatment tolerability" is a distinct construct defined as the extent to which symptomatic and nonsymptomatic AEs impact a patient's ability and desire to continue with current treatment dosing, which also encompasses how patients feel and function while undergoing anticancer therapies. Assessment of tolerability requires the systematic and rigorous measurement of patient-reported outcomes (PROs). In this review, we discuss the introduction of patient-reported outcomes measures (PROMs) into hematology clinical trials and how PROs inform the measurement of treatment tolerability, including symptomatic adverse events, physical and role functioning, and overall side effect burden. Selected PROMs for measurement of these core tolerability domains are outlined, with a focus on novel analytic tools that have been developed for the longitudinal analysis of tolerability data. Further, we outline ongoing studies to accelerate integration of PROs throughout the cancer care spectrum, from early-stage drug development to routine clinical care, with the goal of improving both HRQoL and survival.

This research explored how personal and entertainment role models motivate an individual's health goals, and how following a role model on social media affects this process. A survey of 404 adults revealed that identifying a personal role model, such as a family member, friend, or healthcare professional, had a stronger influence on health motivation in comparison to identifying an entertainment role model. Additionally, our findings indicated that following any role model on social media, whether a personal acquaintance or a celebrity, enhanced motivation. Role model attributes that mediated these relationships included perceived similarity, and in some instances, positive and negative norm deviance. This study highlights the importance of leveraging role model relationships in health communication campaigns and developing authentic influencer-driven health initiatives that feature relatable entertainment figures. Additionally, this research supports the need for further examination of how a role model's perceived positive or negative norm deviance influences motivational capability. We discuss implications for the motivational theory of role modeling, health promotion, and entertainment education.

Female chronic pelvic pain disorders (CPPDs) affect 1 in 7 women worldwide and are characterized by psychosocial comorbidities, including a reduced quality of life and 2-10-fold increased risk of depression and anxiety. Despite its prevalence and morbidity, CPPDs are often inadequately managed with few patients experiencing relief from any medical intervention. Characterizing mental health symptom trajectories and lifestyle predictors of mental health is a starting point for enhancing patient self-efficacy in managing symptoms. Here, we investigate the association between mental health, pain, and physical activity (PA) in females with CPPD and demonstrate a method for handling multi-modal mobile health (mHealth) data.

The study sample included 4270 person-level days and 799 person-level weeks of data from CPPD participants (N=76). Participants recorded PROMIS global mental health (GMH) and physical functioning and pain weekly for 14 weeks using a research mHealth app, and moderate-to-vigorous PA (MVPA) was passively collected via activity trackers.

We used penalized functional regression (PFR) to regress weekly GMH-T (GMH-T) on MVPA and weekly pain outcomes while adjusting for baseline measures, time in study, and the random intercept of the individual. We converted 7-day MVPA data into a single smooth using spline basis functions to model the potential non-linear relationship.

MVPA was a significant, curvilinear predictor of GMH-T (F=18.989, p<0.001), independent of pain measures and prior psychiatric diagnosis. Physical functioning was positively associated with GMH-T, while pain was negatively associated with GMH-T (B=2.24, B=-1.16, respectively; p<0.05).

These findings suggest that engaging in MVPA is beneficial to the mental health of females with CPPD. Additionally, this study demonstrates the potential of ambulatory mHealth-based data combined with functional models for delineating inter-individual and temporal variability.

Black breast cancer survivors (BCS) are more likely to experience poor quality of life (QoL) compared to White BCS. Physical activity (PA) has been shown to improve QoL in cancer survivors. However, there is limited evidence demonstrating associations between PA and multiple QoL domains among Black BCS. This study examined the association between PA duration and intensity level (e.g., ≥ 150 min/week of moderate activity) and multiple QoL domains (e.g., physical health) among BCS in the Black Women's Health Study (BWHS).

A total of 904 BWHS participants were eligible to participate in this study. The 2019 BWHS follow questionnaire, which assessed multiple QoL domains was used to address the primary aim. Adjusted multinomial logistic regression models were fit to estimate the odds ratios and 95% confidence intervals for the associations with each exposure variable (PA) and outcome variable (QoL). Multiple imputation was used to address missing data.

The average participant age was 66, and the average body mass index was 29 kg/m2 at the time of QoL assessment. There were significant and positive associations between PA duration and intensity level and multiple domains of QoL (p < 0.05). Participants who engaged in higher durations of moderate PA (e.g., ≥ 150 minutes/week) had increased odds of optimal social functioning (aOR = 2.67; 95% CI 1.40, 5.08) and functional wellbeing (aOR = 4.10; 95% CI 1.71, 9.83) than those who engaged in lower durations of moderate PA (e.g., < 150 minutes/week). Compared to participants who engaged in lower durations of vigorous PA (e.g., < 60 minutes/week), those who engaged in higher durations of vigorous PA (e.g., ≥ 60 minutes/week) had greater odds of optimal physical health (aOR = 4.27; 95% CI 2.04, 8.90), social functioning (aOR = 4.48; 95% CI 2.27, 8.86), and financial wellbeing (aOR = 1.64; 95% CI 1.03, 2.63).

Black BCS who engage in higher durations of moderate and vigorous PA tend to have better QoL. These findings may help to build upon the importance of PA and the relevance of PA in the context of supportive care for racial and ethnic minority BCS. Future longitudinal studies are needed to establish clear temporal associations between PA and QoL in this group.

Healthcare engagement, defined as the self-efficacy to enact the behaviors needed to obtain optimal benefit from health services, is an important aspect of healthcare quality. Measuring changes to healthcare engagement is essential to informing current and ongoing adaptations to health service delivery. The objective of the present study was to explore the responsiveness of the recently developed PROMIS® Healthcare Engagement measure (PHE), a patient-reported outcome, through investigating the impact of COVID and COVID-related healthcare disruptions on healthcare engagement from pre- to peri-pandemic.

Baseline data (2018-2019) were collected via a national mail survey of Veterans receiving VA care. For follow-up data, a subset of participants was randomly selected to be invited to a follow-up survey. Administrative data was used from the VA's Corporate Data Warehouse (CDW). We used mixed effects linear modeling to compare changes in healthcare engagement from baseline to follow-up between Veterans who reported healthcare disruptions and Veterans who did not report healthcare disruptions, adjusting for covariates.

From baseline to follow-up, healthcare engagement scores increased on average by 2.84 points. Compared to Veterans who reported no disruptions, Veterans who experienced COVID-related healthcare disruptions demonstrated greater decreases to healthcare engagement (difference scores ≥ - 1.98, ps ≤ 0.002) Further, Veterans with more healthcare disruptions showed greater decreases in healthcare engagement relative to those with fewer healthcare disruptions, such that Veterans with 2 healthcare disruptions (difference score = -4.20) significantly differed from Veterans reporting only 1 healthcare disruption, and Veterans reporting 3 or more disruptions (difference score = -3.75) significantly differed from those with 2 disruptions.

Our results provide preliminary evidence of the PHE's responsiveness through demonstrating that environmental factors, such as pandemic-related factors, influence healthcare engagement. The COVID-19 pandemic had a complex effect on healthcare engagement, with healthcare engagement scores increasing overall during the pandemic but Veterans reporting COVID-related healthcare disruptions showing decreased changes in healthcare engagement. These findings support the utility of the PHE as a measure of healthcare engagement.

Patients with advanced cancer and their family caregivers often experience poor quality of life (QOL). Self-report measures are commonly used to quantify QOL of family caregivers but may have limitations such as recall bias and social desirability bias. Variables derived from passively obtained smartphone GPS data are a novel approach to measuring QOL that may overcome these limitations and enable detection of early signs of mental and physical health (PH) deterioration.

This study explored the feasibility of a digital phenotyping approach by assessing participant adherence and examining correlations between smartphone GPS data and QOL levels among family caregivers and patients with advanced cancer.

This was a secondary analysis involving 7 family caregivers and 4 patients with advanced cancer that assessed correlations between GPS sensor data captured by a personally owned smartphone and QOL self-report measures over 12 weeks through linear correlation coefficients. QOL as measured by the Patient-Reported Outcomes Measurement Information System (PROMIS) Global Health 10 was collected at baseline, 6, and 12 weeks. Using a Beiwe smartphone app, GPS data were collected and processed into variables including total distance, time spent at home, transition time, and number of significant locations.

The study identified relevant temporal correlations between QOL and smartphone GPS data across specific time periods. For instance, in terms of PH, associations were observed with the total distance traveled (12 and 13 wk, with r ranging 0.37 to 0.38), time spent at home (-4 to -2 wk, with r ranging from -0.41 to -0.49), and transition time (-4 to -2 wk, with r ranging -0.38 to -0.47).

This research offers insights into using passively obtained smartphone GPS data as a novel approach for assessing and monitoring QOL among family caregivers and patients with advanced cancer, presenting potential advantages over traditional self-report measures. The observed correlations underscore the potential of this method to detect early signs of deteriorating mental health and PH, providing opportunities for timely intervention and support.

Solid organ transplant (SOT) recipients now have widespread access to telehealth, but the factors influencing their satisfaction still need to be understood. This cross-sectional study explored potential contributors to telehealth satisfaction among SOT recipients, including liver, kidney, and simultaneous liver-kidney recipients. A total of 136 adult SOT recipients completed an online survey. The survey assessed telehealth satisfaction, previous telehealth experiences, including confidence levels and the need for assistance from others, electronic health literacy (eHealth literacy), perceived physical and mental health status, and cognitive function, along with demographic and clinical characteristics. The multivariate regression backward selection method was used to identify potential factors contributing to telehealth satisfaction. Participants had a mean age of 60.1 years (standard deviation [SD] = 10.5) and were, on average, 92 months post-transplant (SD = 99.9). The mean telehealth satisfaction score was 5.3 out of 7 (SD = 1.2), indicating positive satisfaction with telehealth. However, lower telehealth satisfaction was associated with poor confidence in communicating with providers via telehealth, lower eHealth literacy, better perceived cognitive function, and a prolonged time since SOT (adjusted R2 = 0.49). SOT recipients who perceive vulnerability in online technology, report better perceived cognitive function, and are farther out from their SOT may exhibit lower satisfaction with telehealth. When considering telehealth for transplant care, clinicians should prioritize addressing the specific concerns and challenges of SOT recipients who may perceive telehealth unfavorably.

This is a protocol for a Cochrane Review (intervention). The objectives are as follows: To assess the benefits and harms of graded activity compared to placebo, sham, or no treatment, on pain and function in adults with acute and subacute non-specific low back pain.

Immunoglobulin replacement therapy (IgRT) is the current standard of care for primary antibody deficiency patients (majority of all primary immunodeficiency (PID) diseases), with growing real-world evidence supporting use for secondary immunodeficiency (SID) patients. Infusion methods and practices can affect patients' satisfaction with their treatment and perception of their health-related quality of life.

An online survey of US patients with PID and SID was conducted. This research investigates primarily the impact of two IgRT infusion methods, intravenous immunoglobulin therapy (IVIG) and subcutaneous immunoglobulin (SCIG), on the patient reported outcome (PRO) Life Quality Index (LQI) tool. Patient reported infusion time efficiency, physical and mental health (PROMIS GPH-2 and PROMIS GMH-2 respectively), patient acceptability of their symptom state (PASS), upper extremity disability (Quick DASH) and general health perception (via the GHP) are also investigated.

Responses of 990 patients (391 IVIG and 598 SCIG) were analyzed. The median total LQI score amongst SCIG patients (84.7) was higher than IVIG patients (81.9) (p < 0.001), and was significantly higher on 3 out of 4 sub-domains of the LQI. SCIG patients scored higher on items that are related to convenience and reported less interference with everyday life: "Are convenient", "Are scheduled according to my convenience", "Do not interfere with my work/school" and "Require very little time and cost". However, there was no significant difference between the two patient cohorts on other, non-IG specific PROs (PASS, PROMIS GPH-2 and GMH-2 and Quick DASH). Patient reported time per infusion was lower for SCIG infusions than IVIG infusions (pre-infusion time; 22 min vs. 63 min, p < 0.001, infusion time; 120 min vs. 240 min, p < 0.001, post-infusion time; 9 min vs. 31 min, p < 0.001). IVIG patients also reported more interference with everyday life than SCIG patients (82 vs. 86, p < 0.001).

The significantly higher LQI scores for patients receiving SCIG than those receiving IVIG confirms existing evidence that substitution of SCIG for IVIG may favorably impact immunoglobulin specific perceptions of quality of life and treatment satisfaction for appropriately selected patients. Our evidence on infusion times indicates similar improvement may be possible on infusion time efficiency.

Adolescent chronic pain may lead to persistent disability and long-term health impairments in adulthood. However, our understanding of which youth are more likely to experience adverse outcomes remains limited. To address this gap, this longitudinal cohort study examined adolescent predictors of various dimensions of young adult health and functioning, including pain, physical health, depression, anxiety, social isolation, and sleep disturbance. As part of a previous clinical trial, we recruited a cohort of adolescents (ages 11-17 years, M age = 14 years) with non-disease-related chronic pain from 15 tertiary pain clinics in North America. Approximately 6 years later, 229 of the original 273 individuals (81% participation rate) completed a follow-up survey as young adults (ages 18-25 years, M age = 21 years). At the young adult follow-up, 73% reported continued chronic pain, with two-thirds experiencing moderate-to-severe pain interference. Youth reported several adverse health outcomes, including below-average physical health (37%), clinically elevated depression (42%), clinically elevated anxiety (48%), and sleep disturbances (77%). Multivariate regression analyses controlling for sociodemographic characteristics revealed that higher pain intensity, more pain locations, lower sleep quality, and greater anxiety symptoms in adolescence predicted worse pain outcomes in young adulthood. Moreover, lower sleep quality, greater anxiety symptoms, and worse family functioning predicted worse physical and psychosocial health in adulthood. These findings represent an important first step toward identifying ways to optimize psychological pain interventions. Tailored psychological pain interventions can directly target adolescent vulnerabilities, including mood, sleep, and family risk factors, with the potential to disrupt a lifelong trajectory of pain and suffering.

Religiousness has been consistently linked to positive health outcomes and flourishing, yet the underlying mechanisms are complex and not well-understood. The forgiveness and relational spirituality model offers a framework to explore the moderated mediation among religious commitment, health, and forgiveness by God. Understanding these relationships among university students and community residents in Trinidad and Tobago can provide valuable insights into the role of religiousness in promoting wellbeing.

This cross-sectional study involved 254 religious Afro-Trinidadians aged 18-78 from Trinidad and Tobago. Participants completed measures assessing religious commitment, proneness to guilt/shame, forgiveness by God, and health outcomes. Modeling using 5,000 bootstrap confidence intervals was used to analyze the hypothesized associations among variables.

A significant positive relationship between religious commitment and health encompassed both physical and mental aspects. Feeling forgiven by God mediated the link between religious commitment and health outcomes (B = 0.019; SE = 0.007; 95% CI = 0.007, 0.034; R 2 = 0.12). Proneness to guilt or shame moderated the association between religious commitment and forgiveness by God. This relationship was significant primarily among individuals with high levels of proneness to guilt (B = 0.075, SE = 0.019, p < 0.001) and shame (B = 0.074, SE = 0.018, p < 0.001).

This study highlights the importance of religiousness in promoting human flourishing among Afro-Trinidadians residing in Trinidad and Tobago. Religious commitment and forgiveness by God were effective resilience resources that contributed to positive health outcomes. However, the nuanced role of proneness to guilt or shame underscores the need for a deeper understanding of individual differences in emotional responses within religious contexts. Future longitudinal research is warranted to elucidate the dynamic nature of these relationships and inform targeted interventions aimed at enhancing wellbeing in religious communities.

Aim: To examine and map health programmes that have been implemented and evaluated to improve health outcomes amongst older adults who are the primary family caregivers for their partners. Methods: A scoping review was carried out, following the methodology of the Joanna Briggs Institute (JBI) and PRISMA-ScR reporting guidelines. The search was conducted in six databases (PubMed/Medline, Cochrane, CINAHL, Web of Science, Scopus, and EMBASE) between December 2023 and March 2024. Results: Eleven studies were included, covering different health programmes implemented and evaluated with the aim of improving health outcomes in older adults who assume the role of primary family caregiver for their partner. The programmes were carried out by multidisciplinary teams and psychologists. The programmes varied in content, frequency, and duration. Discrepancies were found in the effects of the interventions on stress, depression, quality of life, and caregiver burden. Conclusions: This scoping review shows that programmes aimed at improving health outcomes in older adults who are the primary family caregiver for their partner vary widely in both content and effectiveness. While some interventions reduced the burden and psychological distress, others did not show clear improvements in quality of life. It can be concluded that there is a need for randomised controlled trials that rigorously evaluate the outcomes of long-term, personalised interventions.

Self-rated health is associated with information and communications technology (ICT) use among older adults. Non-US born, older Asian American individuals are more inclined to rate their health as fair or poor compared to individuals from other racial and ethnic backgrounds. This population is also less likely to use ICTs as compared to White older Americans. Furthermore, cognitive decline may impact technology acceptance. In a previous adaptation of the technology acceptance model for low-income, Asian American older adults, perceived usefulness (PU), perceived ease of use (PEOU), age, educational attainment, ethnicity, and English proficiency were significant predictors of ICT use. However, the association between health and technology acceptance has not been explored among Asian American older adults.

This study examined the role of self-rated health and subjective cognitive decline in the acceptance and use of ICTs among low-income, Asian American older adults.

This cross-sectional survey included Asian American individuals aged ≥62 years living in affordable housing for older adults (N=392). Using hierarchical multiple regression, we explored the association between self-rated health and ICT use and technology acceptance model mediators (PU and PEOU) while adjusting for demographics, English proficiency, and subjective cognitive decline. Contrast statements were used to estimate contrasts of interest. To further examine the separate and joint association between age and subjective cognitive decline and the dependent variables, we examined scatterplots with locally estimated scatterplot smoothing lines, revealing that the relationship between subjective cognitive decline and ICT use varied in 3 age segments, which led to updating our analysis to estimate differences in ICT use among age categories with and without subjective cognitive decline.

Self-rated health was not significantly associated with ICT use (β=.087; P=.13), PU (β=.106; P=.10), or PEOU (β=.062; P=.31). However, the interaction terms of subjective cognitive decline and age significantly improved the model fit for ICT use (ΔR2=0.011; P=.04). In reviewing scatterplots, we determined that, in the youngest age group (62-74 years), ICT use increased with subjective cognitive decline, whereas in the older age groups (75-84 and ≥85 years), ICT use decreased with subjective cognitive decline, more so in the oldest age category. Through regression analysis, among participants with subjective cognitive decline, ICT use significantly decreased in the middle and older age groups as compared to the youngest age group. However, among participants without subjective cognitive decline, the difference in use among age groups was not significant.

This study contributes to the understanding of the complex relationship between health and ICT acceptance among low-income, Asian American older adults and suggests the need for tailored interventions to promote digital engagement and quality of life for this population.

High-risk alcohol consumption in the weeks before and after surgery poses significant risks for postoperative recovery. Despite this, elective surgical patients are rarely offered alcohol-focused education, interventions, or treatment. This paper describes the protocol of a research study designed to evaluate the effectiveness of brief, non-pharmacological, therapeutic approaches to reduce alcohol use before and after surgery.

The Alcohol Screening and Preoperative Intervention Research (ASPIRE-2) study trial includes 440 elective, non-cancer, surgery patients ages 21-75 years-old who report high-risk alcohol use. This trial uses a Sequential, Multiple Assignment, Randomized Trial (SMART) design to test the effectiveness of adaptive interventions that include preoperative Virtual Health Coaching (VHC) or Enhanced Usual Care (EUC) followed by postoperative intervention strategies tailored to participant response to the preoperative study condition. Intervention "response" is defined as achieving low-risk alcohol use following the preoperative intervention. The primary aims of this study are to: 1) examine the effectiveness of adaptive interventions that begin with preoperative VHC compared to EUC in reducing high-risk alcohol use among elective surgical patients; and 2) identify the most effective postoperative strategy for lasting alcohol use reduction over a period of 12 months. Secondary and exploratory aims will identify the best performing pre-specified adaptive interventions, identify baseline and time-varying moderators of intervention effectiveness, and evaluate surgical outcomes.

The ASPIRE-2 study is an innovative approach to develop adaptive interventions to reduce alcohol use proximal to elective surgery when alcohol use poses short- and long-term risks to surgery and health.

Post-stroke morbidity is common, but little is known about the burden on patients' lives from their own perspective. Understanding morbidity from the point of view of the patient may support targeted intervention in post-stroke recovery. This study used a stroke specific Patient Reported Outcome Measure (PROM) containing Mental health (MH) and Physical Health (PH) domains and 5 stroke specific questions. We aimed to consider trends over a 6-month period and further assess the association between the MH and PH measures and common clinical measures.

A multicenter prospective cohort study was conducted at 19 hospital sites across England and Wales. Patients were enrolled from August 2018 to September 2019. Clinical measures and PROMs were assessed at three timepoints: acutely following the index stroke, at 3 and 6-months post-stroke. Clinical measures and PROMs were assessed in each of these points.

Physical health PROM domains show significant gradual improvement across the study period (χ2 42.6312, p<0.0001), whereas cognitive function domains (χ2 3.7849, p<0.875) did not echo this trend. All clinical measures (GAD-7, PHQ9, MoCA, MRS) were associated with poorer PROM MH outcomes, (aMD -4.4, CI -0.59, -0.29, p≤0.001, aMD -0.45, CI -0.59, -0.32, p=<0.001, aMD 0.75, CI 0.56, 0.95, aMD -1.91, CI -2.41, -1.47, p≤0.001). Clinical measures of disability, as per the MRS, are associated with poor PROM PH scores (aMD -0.57, 95% CI -0.94, -0.20, p=0.003).

This research indicates there is unmet cognitive burden in stroke survivors. PROMs may be able to measure unmet more discretely than common clinical tools that are used post-stroke. Further research and guidance on how to integrate PROMs into current clinical frameworks is essential.

Eyebrow and eyelash loss, known as madarosis, can occur after breast cancer-directed therapy. The purpose of this study was to ascertain the proportion of breast cancer survivors who experience madarosis, contributing factors, and associations between this symptom and quality of life.

Breast cancer survivors were invited to participate in an ongoing longitudinal cohort study as a part of the Mayo Clinic Breast Disease Registry (MCBDR). Consenting participants were mailed a survey approximately 1 year after diagnosis. The proportions of participants who reported eyebrow and eyelash loss were evaluated overall and according to treatment type. Quality of life (QOL) was also explored in this cohort.

Eight hundred and thirty-eight breast cancer survivors responded to survey. The median age of survivors was 59.4 years (range 22-100 years), 315 (37%) had received chemotherapy (± endocrine therapy), 415 (50%) had received endocrine therapy only. Nearly half of participants reported eyebrow loss (49%) or eyelash loss (49%) that occurred after their diagnosis of breast cancer. Eyebrow loss was reported by 89% of chemotherapy recipients, by 27% of endocrine therapy only recipients, and by 19% of those not treated with either therapy. 102 (32%) of those with chemotherapy-associated eyebrow loss reported that it was complete. Eyelash loss was reported by 274 (87%) of chemotherapy recipients, 112 (27%) of endocrine therapy only recipients, and 23 (21%) of those who received neither therapy.

Madarosis is a common symptom in breast cancer survivors and future investigation into the predictors and treatment of madarosis is needed.

Medically tailored meal (MTM) programs provide home-delivered meals to people living with serious illness and poor nutritional status. Client outcome studies have found evidence of decreased healthcare utilization and cost savings associated with MTM program participation, and inconclusive evidence of change in health measures. The purpose of this study was to use a novel observational framework to describe the client profile and change in health outcomes using routinely collected health and program data from a community-based MTM program at MANNA (Philadelphia, PA).

Clients reported their self-rated health and experiences of food insecurity and malnutrition. Healthcare providers reported clients' body mass index, systolic blood pressure, and hemoglobin A1C. These health outcomes, measured at program intake and 3-6 months later, were linked with administrative data for 1,959 clients who completed at least two months of MTM services in 2020, 2021, and 2022.

Clients exhibited substantial heterogeneity in demographics and health status at intake. Self-reported malnutrition risk decreased significantly over program duration (p < .001). Nearly one-third of clients with poor health reported improvement over time. Over 60% of clients with obesity experienced stable BMI. Clients with hypertension experienced significant improvements in systolic blood pressure (p < .001). Clients with diabetes and available data (n = 45) demonstrated significant reduction in hemoglobin A1C (p = .005).

We found evidence that participation in MANNA's MTM program was associated with favorable health outcomes for clients with serious illness and nutritional risk. Community-based organizations can maximize the completeness of their data by focusing on routinely collected internal data like validated health screeners and surveys.

An online, cross-sectional survey of women survivors of sexual violence (SV; N = 355) gathered information on perceived barriers and benefits of exercise, along with exercise level and posttraumatic stress disorder (PTSD) symptoms. This study reports exercise perceptions and provides comparisons by exercise level and PTSD status. Differences by exercise level were found in life enhancement, physical performance, psychological outlook, and social interaction (ps < 0.05; rs = -0.04-0.25). Differences were found by PTSD status in physical performance, social interaction, and preventative health and exercise milieu, time expenditure, and family discouragement (ps < 0.05; rs = -0.39-0.21). Findings provide new information relevant for promoting exercise among women survivors of SV.

The International Survey of People living with Chronic Conditions (OECD-PaRIS survey), aims to systematically gather patient-reported experiences (PREMs) and - outcomes (PROMs) and potential predictors for these outcomes for persons with chronic conditions as well as information from professionals about health care provided. In such patient surveys, the advantages of a multilevel (nested) approach in which patients are sampled 'within providers' need to be balanced against the potential for bias if patient populations from participating GPs significantly differ from those of non-participating GPs. The objective was to assess the effects of general practitioner (GP) non-participation on the representativeness of the Norwegian patient data of the International Survey of People living with Chronic Conditions (OECD-PaRIS survey).

To test all aspects of the first main PaRIS survey, it was preceded by a field trial which this paper reports on the Norwegian part of. For the Norwegian part of the field trial in 2022, we randomly sampled and surveyed 75 GPs and 125 patients 45 years and older for each GP, regardless of whether their GP were also participating in the study. GPs were sampled from a national register that included all GPs. The surveys were primarily digital, but we sent postal questionnaires to non-digital patients and non-responding digital patients. We compared GP and patient characteristics as well as patient-reported experiences and outcomes according to GP participation status in bivariate analysis, supplemented with multiple linear regressions with PREMs/PROMs as dependent variables and participation status as independent adjusting for significant patient factors.

17 of 75 sampled GPs participated (22.7%), of which 993 of 2,015 patients responded (49.3%). 3,347 of 7,080 patients of non-responding GPs answered (47.3%). Persons with chronic conditions from participating GPs reported significantly better patient-centred coordinated care (p = 0.017), overall experiences with the GP office the last 12 months (p = 0.004), mental well-being (p = 0.039) and mental health (p = 0.013) than patients from non-participating GPs. The raw differences between participating and non-participating GPs on patient-reported experiences and - outcomes varied from 1.5 to 2.9 points on a 0-100 scale, and from 2.2 to 3.0 after adjustment for case-mix.

The Norwegian field trial indicates that estimates based on participants in the PaRIS survey may modestly overestimate patient-reported experiences and -outcomes at the aggregated level and the need for more research within and across countries to identify and address this potential bias.

Delivering insomnia treatment by the Internet holds promise for increasing care access to family caregivers, but their ability to adhere to and benefit from such fully-automated programs has not been rigorously tested.

This fully-powered, single-group trial tested whether characteristics of the caregiving context influence high-intensity caregivers' engagement with and benefit from an empirically validated Internet intervention for insomnia.

At baseline, caregivers providing unpaid time- and responsibility-intensive care who reported insomnia (N = 100; age M = 52.82 [SD = 13.10], 75% non-Hispanic white, 66% ≥college degree) completed questionnaires about caregiving context and sleep, then 10 prospectively-collected online daily sleep diaries. Caregivers then received access to SHUTi (Sleep Healthy Using the Internet), which has no caregiver-specific content, for 9 weeks, followed by post-assessment (questionnaires, diaries). Engagement was tracked by the SHUTi delivery system.

Sixty caregivers completed SHUTi, 22 initiated but did not complete SHUTi, and 18 did not initiate SHUTi. Caregivers were more likely to use SHUTi (than not use SHUTi) when their care recipient (CR) had worse functioning, and were more likely to complete SHUTi when supporting more CR activities of daily living (ADL; ps < .03). Higher caregiver guilt, more CR problem behaviors, and being bedpartners with the CR related to more improved sleep outcomes, whereas supporting more CR instrumental ADL related to less improvement (ps < .05).

Factors associated with greater caregiving burden, including greater CR impairment and caregiving guilt, were generally associated with better engagement and outcomes. Caregivers with substantial burdens can adhere to and benefit from a fully automated insomnia program without caregiver-specific tailoring.

Online journaling is a methodological tool that has also been shown to have therapeutic benefits for some populations. However, the potential value - and limitations - of online journaling within immigrant communities remain underexplored. We present a proof-of-concept analysis exploring the efficacy and feasibility of engaging immigrant women in an online journaling project. We report on a study that used online journaling as an approach to explore the long-term social impact of the pandemic on South Asian and Latinx immigrant women in New York City. Findings suggest that this method may work particularly well with immigrant women because of the constraints they face in accessing support for mental health distress. The digital nature of online journaling may also promote the inclusion of immigrants in journaling-based studies because of its capacity to offer participants a greater range of options for how, when, and under what circumstances they choose to engage. We highlight study findings, reflect critically on our research process, and offer recommendations for the use of online journaling in future research and community programming. We argue for the role of community-based partnerships in ensuring rich participant engagement.

This study examined prevalence and relationships among falls, injuries, fear of falling, and social participation in people aging with long-term physical disability (PAwLTPD).

A convenience sample of 474 PAwLTPD recruited from community agencies and social media as baseline of a longitudinal cohort study. Inclusion criteria: 45-65 years, self-reported physical disability for ≥5 years, and English-speaking. Self-report surveys of physical/mental health, falls in the past year, fear of falling, and Patient-Reported Outcomes Measurement Information System (PROMIS) ability and satisfaction with participation in social roles and activities measures were collected.

Mean age 56.8 years; participants were mostly female (66.7%) and White (61.4%). Nearly 65% reported a fall; 56.6% of falls resulted in injury. Falls and fall-related injuries were associated with worse physical/mental health and presence of >5 health conditions. Seventy-five percent of participants reported fear of falling. Lower ability and satisfaction with participation were found in participants who fell and worried about falls.

PAwLTPD are at increased risk of falls, fall-related injuries, and fear of falling, which affects their ability to engage in social activities. Future research is needed to understand circumstances associated with falls and to develop effective interventions to address falls in PAwLTPD.

Unhealthy alcohol use represents a significant risk for morbidity and mortality among people living with HIV (PLWH), in part through its impact on HIV management. Chronic pain, a common comorbidity, exacerbates suboptimal engagement in the HIV care continuum and has reciprocal detrimental effects on alcohol outcomes. There are no integrated, accessible approaches that address these comorbid conditions among PLWH to date. This paper describes a research study protocol of an integrated telehealth intervention to reduce unhealthy drinking and chronic pain among PLWH (Motivational and Cognitive-Behavioral Management for Alcohol and Pain [INTV]).

Two-hundred and fifty PLWH with unhealthy drinking and chronic pain will be recruited nationally via online advertisement. Informed consent and baseline assessments occur remotely, followed by 15 days of ecological momentary assessment to assess alcohol use, chronic pain, functioning, and mechanisms of behavior change. Next, participants will be randomized to either the INTV or Control (CTL) condition. Individuals in both conditions will meet with a health counselor through videoconferencing following randomization, and those in the INTV condition will receive 6 additional sessions. At 3- and 6-months post-baseline, participants will complete outcome assessments. It is hypothesized that the INTV condition will result in reduced unhealthy alcohol use and pain ratings compared to the CTL condition.

This protocol paper describes a randomized controlled trial which tests the efficacy of a novel, integrated telehealth approach to reduce unhealthy alcohol use and chronic pain for PLWH, two common comorbid conditions that influence the HIV treatment cascade.

NCT05503173.

The global healthcare landscape is shifting toward patient-centered care, emphasizing the integration of patient feedback into service delivery. Romania, aligning with this trend, has implemented patient-perceived quality assessment tools to enhance healthcare services and better meet patient needs and expectations. This study aims to review comprehensively the implementation and impact of these tools in Romania, focusing on their role in improving healthcare quality. By examining key assessment instruments such as the Patient Satisfaction Questionnaire (PSQ), the Service Quality (SERVQUAL) model, and the Romanian Healthcare Quality Assessment Survey (RHQAS), the research seeks to understand how these tools have been used to identify areas for improvement and drive advancements in patient care. Employing a comprehensive review methodology, the study will conduct a thorough literature search to identify relevant studies, reports, and publications, analyzing the PSQ, SERVQUAL, and RHQAS in detail to understand their measurement domains, psychometric properties, and application within Romania. Additionally, qualitative data from interviews with healthcare providers and patients may be collected to offer further insights into the use and effectiveness of these tools. The study's findings are expected to provide valuable insights into the role of patient-perceived quality assessment tools in enhancing healthcare in Romania, identifying strengths, weaknesses, and opportunities for improvement. The results will highlight the effectiveness of combining international methodologies with localized adaptations to address the specific needs of the Romanian healthcare system, ultimately contributing to the ongoing efforts to improve patient satisfaction and health outcomes by informing the development and refinement of patient-centered care initiatives in Romania.

Value-based healthcare (VBHC) is increasingly implemented in healthcare worldwide. Transparent measurement of the outcomes most important and relevant to patients is essential in VBHC, which is supported by a core set of most important quality indicators and outcomes. Therefore, the aim of this study was to develop a VBHC-burns core set for adult burn patients.

A three-round modified national Delphi study, including 44 outcomes and 24 quality indicators, was conducted to reach consensus among Dutch patients, burn care professionals and researchers. Items were rated on a nine-point Likert scale and selected if ≥ 70% in each group considered an item 'important'. Subsequently, instruments quantifying selected outcomes were identified based on a literature review and were chosen in a consensus meeting using recommendations from the Dutch consensus-based standard set and the Dutch Centre of Expertise on Health Disparities. Time assessment points were chosen to reflect the burn care and patient recovery process. Finally, the initial core set was evaluated in practice, leading to the adapted VBHC-burns core set.

Twenty-seven patients, 63 burn care professionals and 23 researchers participated. Ten outcomes and four quality indicators were selected in the Delphi study, including the outcomes pain, wound healing, physical activity, self-care, independence, return to work, depression, itching, scar flexibility and return to school. Quality indicators included shared decision-making (SDM), the number of patients receiving aftercare, determination of burn depth, and assessment of active range of motion. After evaluation of its use in clinical practice, the core set included all items except SDM, which are assessed by 9 patient-reported outcome instruments or measured in clinical care. Assessment time points included are at discharge, 2 weeks, 3 months, 12 months after discharge and annually afterwards.

A VBHC-burns core set was developed, consisting of outcomes and quality indicators that are important to burn patients and burn care professionals. The VBHC-burns core set is now systemically monitored and analysed in Dutch burn care to improve care and patient relevant outcomes. As improving burn care and patient relevant outcomes is important worldwide, the developed VBHC-burns core set could be inspiring for other countries.

Paroxysmal nocturnal hemoglobinuria (PNH) is a rare, chronic blood disorder. Symptoms such as fatigue can have a substantial impact on patients' physical activity levels, sleep, quality of life, and work productivity. Ravulizumab treatment can reduce thrombosis risk, improve survival and quality of life, and reduce fatigue in PNH, but information is limited on how it impacts sleep and physical activity. Here, data on resting heart rate, daily physical activity, and sleep in ravulizumab-treated patients with PNH were passively collected via a digital wearable activity-tracking device and patient-reported outcome (PRO) data were collected via weekly surveys in the same cohort.

REVEAL was a 32-week prospective observational cohort study in individuals with PNH receiving ravulizumab in the USA. A wrist-worn Fitbit™ collected data on resting heart rate, daily step count, and sleep duration from eligible patients. Patients also completed the following electronic weekly surveys: Functional Assessment of Chronic Illness Therapy (FACIT) - Fatigue, Patient-Reported Outcomes Measurement Information System (PROMIS) Global Physical Health, PROMIS Global Mental Health, PROMIS Sleep-Related Impairment and Sleep Disturbance, and Work Productivity and Activity Impairment Questionnaire - Specific Health Problem (WPAI-SHP). Data collected from the activity trackers and surveys were compared against US general population values reported in the literature.

Twenty-eight ravulizumab-treated patients were included (median age: 34 years; 54% female). PRO scores were within US general population normative values, including FACIT-Fatigue (40.0), PROMIS Global Physical Health (51.0), Global Mental Health (51.0), Sleep-Related Impairment (50.0), and Sleep Disturbance (49.0). Similarly, mean resting heart rate (67 bpm), daily step count (7476), and sleep duration (7.7 h) were within the range of US general population values. Daily step count was positively correlated with PROMIS Global Physical and Mental Health scores.

This was the first study to use digital monitoring technology to collect data on physical activity and sleep in patients with PNH. The findings indicate that ravulizumab treatment enables patients with PNH to achieve activity levels (heart rate, sleep duration, step count) and quality of life that are comparable to those of the US general population. A weak positive correlation was identified between patient-reported physical and mental health and daily physical activity levels.

Because multiple management options exist for clinical T1 renal masses, patients may experience a state of uncertainty about the course of action to pursue (ie, decisional conflict). To better support patients, we examined patient, clinical, and decision-making factors associated with decisional conflict among patients newly diagnosed with clinical T1 renal masses suspicious for kidney cancer.

From a prospective clinical trial, participants completed the Decisional Conflict Scale (DCS), scored 0 to 100 with < 25 associated with implementing decisions, at 2 time points during the initial decision-making period. The trial further characterized patient demographics, health status, tumor burden, and patient-centered communication, while a subcohort completed additional questionnaires on decision-making. Associations of patient, clinical, and decision-making factors with DCS scores were evaluated using generalized estimating equations to account for repeated measures per patient.

Of 274 enrollees, 250 completed a DCS survey; 74% had masses ≤ 4 cm in size, while 11% had high-complexity tumors. Model-based estimated mean DCS score across both time points was 17.6 (95% CI 16.0-19.3), though 50% reported a DCS score ≥ 25 at least once. On multivariable analysis, DCS scores increased with age (+2.64, 95% CI 1.04-4.23), high- vs low-complexity tumors (+6.50, 95% CI 0.35-12.65), and cystic vs solid masses (+9.78, 95% CI 5.27-14.28). Among decision-making factors, DCS scores decreased with higher self-efficacy (-3.31, 95% CI -5.77 to -0.86]) and information-seeking behavior (-4.44, 95% CI -7.32 to -1.56). DCS scores decreased with higher patient-centered communication scores (-8.89, 95% CI -11.85 to -5.94).

In addition to patient and clinical factors, decision-making factors and patient-centered communication relate with decisional conflict, highlighting potential avenues to better support patient decision-making for clinical T1 renal masses.