Physical Health Summary Scores Research Articles

QOL-15. PATIENT-REPORTED PHYSICAL HEALTH-RELATED QUALITY OF LIFE PREDICTS SHORT-TERM POSTOPERATIVE OUTCOMES IN A HETEROGENEOUS COHORT OF BRAIN TUMOR PATIENTS

Abstract Patient-reported outcome measures (PROMs) are increasingly used to assess patients’ perioperative health. The PROM Information System 29 (PROMIS-29) is a well-validated global health assessment instrument for patient physical health, though its utility in cranial neurosurgery is unclear. To investigate the utility of preoperative PROMIS-29 physical health (PH) summary scores in predicting postoperative outcomes in brain tumor patients. Adult brain tumor patients undergoing resection at a single institution (January 2018-December 2021) were identified and prospectively received PROMIS-29 surveys during pre-operative visits. PH summary scores were constructed and optimum prediction thresholds for length of stay (LOS), discharge disposition (DD), and 30-day readmission were approximated by finding the Youden index of the associated receiver operating characteristic curves. Bivariate analyses were used to study the distribution of low (z-score≤-1) versus high (z-score>-1) PH scores according to baseline characteristics. Logistic regression models quantified the association between preoperative PH summary scores and post-operative outcomes. A total of 157 brain tumor patients were identified (mean age 55.4±15.4 years; 58.0% female; mean PH score 45.5 + 10.5). Outcomes included prolonged LOS (24.8%), non-routine discharge disposition (37.6%), and 30-day readmission (19.1%). On bivariate analysis, patients with low PH scores were significantly more likely to be diagnosed with a high-grade tumor (69.6% vs 38.85%, p=0.010) and less likely to have elective surgery (34.8% vs 70.9%, p=0.002). Low PH score was associated with prolonged LOS (26.1% vs 22%, p<0.001), nonroutine discharge (73.9% vs 31.3%, p<0.001) and 30-day readmission (43.5% vs 14.9%, p=0.003). In multivariate analysis, low PH scores predicted greater LOS (odds ratio [OR]=6.09, p=0.003), nonroutine discharge (OR=4.25, p=0.020), and 30-day readmission (OR=3.93, p=0.020). The PROMIS-29 PH summary score predicts short-term postoperative outcomes in brain tumor patients and may be incorporated into prospective clinical workflows.

Agreement of PROMIS Preference (PROPr) scores generated from the PROMIS-29 + 2 and the PROMIS-16.

Preference-based summary scores are used to quantify values, differences, and changes in health-related quality of life (HRQoL) that can be used for cost-effectiveness analyses. The PROMIS-Preference (PROPr) measure is a preference-based summary score comprised of 7 PROMIS domains. The PROMIS-16 is a new PROMIS profile instrument. We evaluated the measurement properties of PROPr generated from the widely used PROMIS-29 + 2 compared with the PROMIS-16. We performed a secondary analysis of data from an online survey of the general US population, with a longitudinal subsample who reported back pain. The survey included both the PROMIS-16 and the PROMIS-29 + 2 profiles. PROPr scores were calculated from each profile and compared by the distribution of scores, overall mean scores, product-moment correlations with pain measure scores (Oswestry Disability Index, Roland-Morris Disability Questionnaire, Pain Intensity, Interference with Enjoyment of Life, Interference with General Activity Scale, and Graded Chronic Pain Scale), and difference in mean scores in subgroups with 13 chronic health conditions (Cohen's d). Of the 4,115 participants in the baseline survey, 1,533 with any reported back pain were invited for the 6-month follow-up survey and 1,256 completed it. At baseline, the overall mean (SD) PROPr score was 0.532 (0.240) from PROMIS-16 and 0.535 (0.250) from PROMIS 29 + 2. At both time points, the correlations of PROPr scores with physical and mental health summary scores from the PROMIS-29 and 4 pain scales were within 0.01 between profiles. Using subgroups with chronic health conditions and comparing between profiles, Cohen's d estimates of the difference in effect size were small (< 0.2). PROPr scores from the 16-item PROMIS profile measure are similar to PROPr scores from the longer PROMIS-29 + 2.

Long-term outcomes and quality of life in congenital diaphragmatic hernia survivors treated with extracorporeal life support: A cross-sectional survey.

Few reports have shown Quality-of-Life long-term outcomes in children with congenital diaphragmatic hernia (CDH) who received extracorporeal membrane oxygenation (ECMO) support. We reviewed the short- and long-term outcomes in CDH patients that were supported with ECMO during their neonatal treatment. Telephone interviews of parents of CDH children were performed. The Functional Status Scale (FSS) and the Paediatric Quality of Life Inventory (PedQL, Version 4.0) were completed with the parents. All children with a CDH and supported with ECMO from 2010 to 2023 were included in the study. Twenty children were identified, with two having two ECMO runs. Birth weight was 3.2 kg (median). ECMO support lasted for (median) 13.6 days (range 3.8 to 39). Twelve patients were alive at the time of the survey. The age (median) at time of the interview was 6.3 years (range 1 to 12). The FSS score showed no impairment (FSS score 6) in any domain in eight patients. Two patients had a score of 7, and two patients had a score of 8 and 9, respectively. The PedQL showed a median score 84.5, with a physical health summary score of 92.5 and a psychosocial health summary score of 78.7. The cardiac specific PedQL inventory score was 77. ECMO support for CDH patients is associated with functional and Quality of Life outcomes that are similar to that in other PICU discharge populations. Denying ECMO support to CDH patients on the basis of predicted poor long-term outcomes does not appear to be justified.

Cognitive performance, mental health, and quality of life in β-thalassemia individuals: a comprehensive analysis

IntroductionBeta-thalassemia is a prevalent autosomal recessive haemolytic disorder, particularly in the Middle East. Patients with beta-thalassemia major (βTM) require iron chelation therapy and regular blood transfusions, while those with beta-thalassemia intermedia (βTI) exhibit milder symptoms. This study aimed to evaluate cognitive function, behavioural problems, quality of life, and related aspects in individuals with βTM and βTI.MethodsThe cross-sectional study included 20 βTM participants, 20 βTI participants, and 19 healthy controls. Participants underwent psychiatric interviews, the Wechsler Adult Intelligence Scale (WAIS-III), Symptom Checklist-90 Revised (SCL-90R), and Short-Form Health Survey (SF-36). Clinical data and laboratory investigations were also collected.ResultsβTM participants exhibited lower vocabulary and picture completion scores on the WAIS-III compared to other groups. βTI participants had significantly higher scores on SCL-90R subscales for somatization, depression, anxiety, paranoid ideation, and psychoticism. Both patient groups reported poorer quality of life across all SF-36 domains compared with controls. Longer disease duration correlated with lower levels of somatization, interpersonal sensitivity, depression, anxiety, and paranoid ideation. Less frequent blood transfusions were associated with better physical and mental health summary scores but also higher somatization. Elevated serum iron levels corresponded with increased anxiety, hostility, and psychoticism symptoms, while higher serum ferritin related to more obsessive–compulsive behaviours but less somatization and psychoticism.ConclusionsIndividuals with thalassemia exhibit cognitive deficits, psychological disturbances, and diminished quality of life, with distinct patterns depending on disease severity. Regular monitoring and appropriate interventions are crucial for optimizing their overall well-being and functioning.

Impact of arterial stiffness on health-related quality of life in older Thai adults with treated HIV infection: a multicenter cohort study.

Despite advancements in antiretroviral therapy (ART) that extend life expectancy, older adults with HIV (OAHIV) face elevated cardiovascular disease risks. This study examines the impact of arterial stiffness on health-related quality of life (HRQoL) among OAHIV in rural Northern Thailand. We conducted a 5-year prospective cohort study from 2015, including 338 OAHIV aged ≥ 50 without prior cardiovascular disease who received ART in 12 community hospitals in Chiang Mai. Arterial stiffness was assessed using Cardio-Ankle Vascular Index (CAVI), with values ≥ 8 indicating significant stiffness. HRQoL was measured using the MOS-HIV Health Survey at baseline, one year, and five years. Analysis adjusted for HIV/AIDS severity, cardiovascular comorbidities, and socioeconomic factors. Elevated CAVI (≥ 8) was associated with lower HRQoL scores. The elevated CAVI group showed lower physical health summary scores (average difference:-2.2 points, 95%CI: -3.5 to -0.9) and mental health summary scores (average difference: -1.2 points, 95%CI: -2.2 to -0.3) compared to the normal CAVI group (CAVI < 8). Findings highlight the importance of routine screening for arterial stiffness and support the implementation of comprehensive care strategies that incorporate cardiovascular risk management. Such approaches could guide public health interventions and clinical practices to enhance the overall health and well-being of OAHIV, potentially through targeted cardiovascular risk reduction programs and personalized care plans. However, the study's regional focus in rural Northern Thailand and participant attrition over the five-year period limit the generalizability of the findings. Future research in diverse settings with larger sample sizes is needed to confirm these results.

The predictive power of coping strategies of pediatric oncology patients on their quality of life and their attitudes toward diseases.

Pediatric oncology patients face several physical and psychological challenges that can significantly impact their quality of life (QoL) and attitudes toward their illness. Coping strategies are pivotal in managing the emotional and physical burdens of disease. This study aimed to examine the impact of coping strategies of pediatric oncology patients on their QoL and attitudes towards their illness. The descriptive, correlational, and cross-sectional study was conducted with 112 pediatric oncology patients aged 10-18 years. The Sociodemographic Form, Pediatric Cancer Coping Scale (PCCS), Pediatric Quality of Life Inventory (PedsQL), and Child Attitude Towards Illness Scale (CATIS) were used for data collection. Significant correlations were identified between cognitive coping, defensive coping, and CATIS (p<.001). The PCCS and subdimensions significantly predicted CATIS (p<.001), accounting for 15.3% of the cognitive and defensive coping variation. However, there was no relationship between PCCS total and subdimension scores on PedsQL (p=.534). The PedsQL and subdimensions significantly predicted CATIS (p<.001) and accounted for 27.2% of the variation in physical health summary score, emotional functioning, psychosocial health summary score, and total PedsQL score. The study reveals that cognitive coping strategies positively predict attitudes toward illness, whereas defensive coping strategies have an inverse effect. The study proposes that comprehensive care models in pediatric oncology support effective coping mechanisms and enhance the QoL of those who receive them.

Health-related quality of life and associated factors among people living with HIV/AIDS in Lagos, Nigeria.

Although people living with HIV (PLWH) now have a longer life expectancy due to antiretroviral therapy, several factors impact their health-related quality of life (HRQoL). Understanding the dimensions and determinants of HRQoL among PLWH is crucial to developing solutions to improve their overall wellbeing. This research aimed to explore the HRQoL and its associated factors among PLWH in Lagos, Nigeria. Seven HIV testing and treatment centres in Lagos. A cross-sectional survey was conducted with 385 participants. Socio-demographic and HRQoL data were obtained using questionnaires and the Medical Outcomes Study HIV Health Survey (MOS-HIV). Logistic regression models were used to identify variables that were associated with quality of life. The physical health summary and mental health summary scores measured by the MOS-HIV were 54.2 ± 5.3 and 56.3 ± 6.7, respectively. Being married, having higher levels of education, shorter duration of HIV and higher income levels were significantly associated with better HRQoL. The duration of HIV was found to have an inversely proportional influence on the quality of life of PLWH, both in physical health (χ2= 9.477,p= 0.009) and mental health (χ2= 11.88,p= 0.004) dimensions. The HRQoL of PLWH in Lagos, Nigeria was relatively low. Education, duration of HIV, marital status and income level are predictors of HRQoL.Contribution:This study is valuable for healthcare professionals and policymakers, providing them with essential information to tailor interventions and allocate resources effectively to improve the overall wellbeing of PLWH in Nigeria.

Converting PROMIS®-29 v2.0 profile data to SF-36 physical and mental component summary scores in patients with cardiovascular disorders

BackgroundHealth-related quality of life (HRQL) has become an important outcome parameter in cardiology. The MOS 36-ltem Short-Form Health Survey (SF-36) and the PROMIS-29 are two widely used generic measures providing composite HRQL scores. The domains of the SF-36, a well-established instrument utilized for several decades, can be aggregated to physical (PCS) and mental (MCS) component summary scores. Alternative scoring algorithms for correlated component scores (PCSc and MCSc) have also been suggested. The PROMIS-29 is a newer but increasingly used HRQL measure. Analogous to the SF-36, physical and mental health summary scores can be derived from PROMIS-29 domain scores, based on a correlated factor solution. So far, scores from the PROMIS-29 are not directly comparable to SF-36 results, complicating the aggregation of research findings. Thus, our aim was to provide algorithms to convert PROMIS-29 data to well-established SF-36 component summary scores.MethodsData from n = 662 participants of the Berlin Long-term Observation of Vascular Events (BeLOVE) study were used to estimate linear regression models with either PROMIS-29 domain scores or aggregated PROMIS-29 physical/mental health summary scores as predictors and SF-36 physical/mental component summary scores as outcomes. Data from a subsequent assessment point (n = 259) were used to evaluate the agreement between empirical and predicted SF-36 scores.ResultsPROMIS-29 domain scores as well as PROMIS-29 health summary scores showed high predictive value for PCS, PCSc, and MCSc (R2 ≥ 70%), and moderate predictive value for MCS (R2 = 57% and R2 = 40%, respectively). After applying the regression coefficients to new data, empirical and predicted SF-36 component summary scores were highly correlated (r > 0.8) for most models. Mean differences between empirical and predicted scores were negligible (|SMD|<0.1).ConclusionsThis study provides easy-to-apply algorithms to convert PROMIS-29 data to well-established SF-36 physical and mental component summary scores in a cardiovascular population. Applied to new data, the agreement between empirical and predicted SF-36 scores was high. However, for SF-36 mental component summary scores, considerably better predictions were found under the correlated (MCSc) than under the original factor model (MCS). Additionally, as a pertinent byproduct, our study confirmed construct validity of the relatively new PROMIS-29 health summary scores in cardiology patients.

Outcomes Among Mexican American and Non-Hispanic White Informal Stroke Caregivers.

Informal home care is prevalent among Mexican American stroke survivors, but data on the impact on caregivers are not available. The aim was to assess ethnic differences in informal stroke caregiving and caregiver outcomes at 90 days poststroke. Informal caregivers were recruited from the population-based Brain Attack Surveillance in Corpus Christi Project (2019-2023), conducted in a bi-ethnic community in Texas. Caregivers of community-dwelling stroke survivors who were not cognitively impaired and not employed by a formal caregiving agency were interviewed. Interviews included sociodemographics, dyad characteristics, Modified Caregiver Strain Index (range 0-26, higher more positive), Positive Aspects of Caregiving scale (range, 5-45, higher more), Patient Health Questionnaire-8 (range, 0-30, higher worse), and PROMIS (Patient-Reported Outcomes Measurement Information System)-10 physical (range, 16.2-67.7, higher better) and mental health (range, 21.2-67.6, higher better) summary scores. Stroke survivor data was from interviews and medical records. Propensity score methods were used to balance caregiver and patient factors among Mexican American and Non-Hispanic White caregivers by fitting a model with ethnicity of caregiver as the outcome and predictors being caregiver sociodemographics, patient-caregiver dyad characteristics, and patient sociodemographics and functional disability. Propensity scores were included as a covariate in regression models, considering the association between ethnicity and outcomes. Mexican American caregivers were younger, more likely female, and more likely a child of the stroke survivor than Non-Hispanic White caregivers. Mexican American caregiver ethnicity was associated with less caregiver strain (β, -1.87 [95% CI, -3.51 to -0.22]) and depressive symptoms (β, -2.02 [95% CI, -3.41 to -0.64]) and more favorable mental health (β, 4.90 [95% CI, 2.49-7.31]) and positive aspects of caregiving (β, 3.29 [95% CI, 1.35-5.23]) but not associated with physical health. Understanding the mechanisms behind more favorable caregiver outcomes in Mexican American people may aid in the design of culturally sensitive interventions to improve both caregiver and stroke survivor outcomes, potentially across all race and ethnic groups.

The CONVINCE randomized trial found positive effects on quality of life for patients with chronic kidney disease treated with hemodiafiltration

In the CONVINCE trial, the primary analysis demonstrated a survival benefit for patients receiving high-dose hemodiafiltration (HDF) as compared with high-flux hemodialysis (HD). A secondary objective was to evaluate effects on health-related quality of life (HRQoL); assessed in eight domains (physical function, cognitive function, fatigue, sleep disturbance, anxiety, depression, pain interference, social participation) applying instruments from the Patient-Reported Outcome Measurement Information System (PROMIS) before randomization and every three months thereafter. In total 1360 adults with dialysis-dependent chronic kidney disease, eligible to receive high-flux HDF (23 liters or more), were randomized (1:1); 84% response rate to all questionnaires. Both groups reported a continuous deterioration in all HRQoL domains. Overall, raw score changes from baseline were more favorable in the HDF group, resulting in a significant omnibus test after a median observation period of 30 months. Most relevant single raw score differences were reported for cognitive function. Patients receiving HDF reported a decline of -0.95 units (95% confidence interval - 2.23 to +0.34) whereas HD treated patients declined by -3.90 units (-5.28 to - 2.52). A joint model, adjusted for mortality differences, utilizing all quarterly assessments, identified a significantly slower HRQoL decline in physical function, cognitive function, pain interference, and social participation for the HDF group. Their physical health summary score declined -0.46 units/year slower compared to the HD group. Thus, the CONVINCE trial showed a beneficial effect of high-dose hemodiafiltration for survival as well as a moderate positive effect on patients’ quality of life, most pronounced with respect to their cognitive function.

Physical Health-Related Quality of Life and Postsurgical Outcomes in Brain Tumor Resection Patients.

Background Patient-reported outcome measures (PROMs) have gained traction in assessing patients' health around surgery. Among these, the 29-item Patient-Reported Outcomes Measurement Information System (PROMIS-29) is a widely accepted tool for evaluating overall health, yet its applicability in cranial neurosurgery remains uncertain. Objective This study aimed to evaluate the predictive value of preoperative PROMIS-29 scores for postoperative outcomes in patients undergoing brain tumor resection. Materials and Methods We identified adult patients undergoing brain tumor resection at a single neurosurgical center between January 2018 and December 2021. We analyzed physical health (PH) summary scores to determine optimal thresholds for predicting length of stay (LOS), discharge disposition (DD), and 30-day readmission. Bivariate analyses were conducted to examine the distribution of PH scores based on patient characteristics. Multivariate logistic regression models were employed to assess the association between preoperative PH scores and short-term postoperative outcomes. Results Among 157 patients (mean age 55.4 years, 58.0% female), 14.6% exhibited low PH summary scores. Additionally, 5.7% experienced prolonged LOS, 37.6% had nonroutine DDs, and 19.1% were readmitted within 30 days. Bivariate analyses indicated that patients with low PH summary scores, indicating poorer baseline PH, were more likely to have malignant tumors, nonelective admissions, and adverse outcomes. In multivariate analysis, low PH summary scores independently predicted increased odds of prolonged LOS (odds ratio [OR] = 6.09, p = 0.003), nonroutine DD (OR = 4.25, p = 0.020), and 30-day readmission (OR = 3.93, p = 0.020). Conclusion The PROMIS-29 PH summary score serves as a valuable predictor of short-term postoperative outcomes in brain tumor patients. Integrating this score into clinical practice can enhance the ability to anticipate meaningful postoperative results.

Health-related quality scores in childhood interstitial lung disease: Good agreement between patient and caregiver reports.

Childhood interstitial lung disease (chILD) is a heterogeneous group of mostly chronic respiratory disorders. Assessment of health-related quality of life (HrQoL) in chILD has become increasingly important in clinical care and research. The aim of this study was to assess differences between patient-reported (self) and caregiver-reported (proxy) HrQoL scores. This study used data obtained from the chILD-EU Register. After inclusion (baseline), the patient's health status was followed up at predefined study visits. At each study visit, caregivers and patients were handed validated, age-specific HrQoL questionnaires. HrQoL data entered at baseline were used to compare self- and proxy-reported HrQoL scores. For the longitudinal analysis, we compared HrQoL scores between the baseline and the next follow-up visit. No differences between patient- and caregiver-reported HrQoL scores were found for school functioning, chILD-specific questionnaire score, and physical health summary score. Self-reported HrQoL scores were higher for the subscales emotional functioning (77.4 vs. 70.7; p < .001), social functioning (81.9 vs. 76.2; p < .001), as well as psycho-social summary score (76.5 vs. 71.8; p < .001) and total score (74.7 vs. 70.8; <.001). The longitudinal analysis showed that a significant change in a patient-reported HrQoL score resulted in a significant change in a caregiver-reported HrQoL score after a mean time of 11.0 months (SD 9.4). We found a good agreement between children- and caregiver-related HrQoL scores. In chILD, caregivers are able to sense changes in children's HrQoL scores over time and may be used as a proxy for children unable to complete HrQoL questionnaires.

Investigation of the Relationship between Physical Activity Level and Quality of Life in Children with Specific Learning Disabilities using Regression Analysis

It has been reported that the academic skills of children with specific learning disabilities (SLDs) and their participation in physical activity may be affected. This study aimed to examine the relationship between physical activity level and quality of life in children with SLDs. The study was conducted with children diagnosed with SLDs at the Afyonkarahisar Special Education and Rehabilitation Center. Once the sociodemographic information of the participants was recorded, their physical activity levels were determined using the Physical Activity Questionnaire for Older Children (PAQ-C, ages 8-14 years), and their quality of life levels were assessed using the Pediatric Quality of Life Inventory (PedsQL). A total of 51 individuals, 21 girls and 30 boys, were included in the study. The mean age of the participants was 10.58±1.51 years. Physical activity score had a weak positive correlation with the physical health summary score (rspearman=0.342, p=0.014); weak positive correlations with the emotional functionality score (rspearman=0.308, p=0.028) and the school functionality score (rspearman=0.337, p=0.016); and moderate positive correlations with the school functionality score (rspearman=0.427, p=0.002), the psychosocial health summary score (rspearman=0.440, p=0.001), and the total PedsQL score (rspearman=0.462, p=0.042). In addition, the physical activity score was determined to statistically significantly predict the total PedsQL score (F=13.297; p=0.001). In conclusion, this study revealed that the physical activity levels of children with SLDs significantly affected their quality of life.

The PAX LC Trial: A Decentralized, Phase 2, Randomized, Double-Blind Study of Nirmatrelvir/Ritonavir Compared with Placebo/Ritonavir for Long COVID

BackgroundIndividuals with long COVID lack evidence-based treatments and have difficulty participating in traditional site-based trials. Our digital, decentralized trial investigates the efficacy and safety of nirmatrelvir/ritonavir, targeting viral persistence as a potential cause of long COVID. MethodsThe PAX LC trial (NCT05668091) is a Phase 2, 1:1 randomized, double-blind, superiority, placebo-controlled trial in 100 community-dwelling, highly symptomatic adult participants with long COVID residing in the 48 contiguous US states to determine the efficacy, safety, and tolerability of 15 days of nirmatrelvir/ritonavir compared with placebo/ritonavir. Participants are recruited via patient groups, cultural ambassadors, and social media platforms. Medical records are reviewed through a platform facilitating participant-mediated data acquisition from electronic health records nationwide. During the drug treatment, participants complete daily digital diaries using a web-based application. Blood draws for eligibility and safety assessments are conducted at or near participants' homes. The study drug is shipped directly to participants' homes. The primary endpoint is the PROMIS-29 Physical Health Summary Score difference between baseline and Day 28, evaluated by a mixed model repeated measure analysis. Secondary endpoints include PROMIS-29 (Mental Health Summary Score and all items), Modified GSQ-30 with supplemental symptoms questionnaire, COVID Core Outcome Measures for Recovery, EQ-5D-5L (Utility Score and all items), PGIS 1 and 2, PGIC 1 and 2, and healthcare utilization. The trial incorporates immunophenotyping to identify long COVID biomarkers and treatment responders. ConclusionThe PAX LC trial uses a novel decentralized design and a participant-centric approach to test a 15-day regimen of nirmatrelvir/ritonavir for long COVID.

Health-related quality of life in children and adolescents with Marfan syndrome or related disorders: a controlled cross-sectional study

BackgroundThis cross-sectional controlled study aims to assess health-related quality of life (HRQoL) of children and adolescents with a molecular diagnosis of Marfan syndrome (MFS) or related disorders and to evaluate the factors associated with HRQoL in this population. Sixty-three children with MFS and 124 age- and sex-matched healthy children were recruited. HRQoL was assessed using the Pediatric Quality of Life Inventory (PedsQL™) generic questionnaire. The correlation between HRQoL scores and the different continuous parameters (age, body mass index, disease severity, systemic score, aortic sinus diameter, and aerobic physical capacity) was evaluated using Pearson’s or Spearman’s coefficient. A multiple linear regression analysis was performed on the two health summary self-reported PedsQL™ scores (physical and psychosocial) to identify the factors associated with HRQoL in the MFS group.ResultsExcept for emotional functioning, all other domains of HRQoL (psychosocial and physical health, social and school functions) were significantly lower in children with MFS compared to matched healthy children. In the MFS group, the physical health summary score was significantly lower in female than in male patients (self-report: absolute difference [95%CI] = -8.7 [-17.0; -0.47], P = 0.04; proxy-report: absolute difference [95%CI] = -8.6 [-17.3; 0.02], P = 0.05) and also negatively correlated with the systemic score (self-report: R = -0.24, P = 0.06; proxy-report: R = -0.29, P = 0.03) and with the height Z-score (proxy-report: R = -0.29, P = 0.03). There was no significant difference in the physical health summary scores between the different genetic subgroups. In the subgroup of 27 patients who performed a cardiopulmonary exercise test, self- and proxy-reported physical health summary scores were highly correlated with their aerobic physical capacity assessed by peak oxygen consumption (VO2max) and ventilatory anaerobic threshold (VAT). In the multivariate analysis, the most important independent predictors of decreased physical health were increased height, decreased body mass index, decreased VAT and use of prophylactic therapy.ConclusionsThis study reports an impaired HRQoL in children and adolescents with MFS or related conditions, in comparison with matched healthy children. Educational and rehabilitation programs must be developed and evaluated to improve exercise capacity and HRQoL in these patients.Trial registrationClinicalTrials.gov, NCT03236571. Registered 28 July 2017.

The PROMIS-16 reproduces the PROMIS-29 physical and mental health summary scores accurately in a probability-based internet panel.

The Patient-Reported Outcomes Measurement Information System® (PROMIS)-16 assesses the same multi-item domains but does not include the pain intensity item in the PROMIS-29. We evaluate how well physical and mental health summary scores estimated from the PROMIS-16 reproduce those estimated using the PROMIS-29. An evaluation of data collected from 4130 respondents from the KnowledgePanel. Analyses include confirmatory factor analysis to assess physical and mental health latent variables based on PROMIS-16 scores, reliability estimates for the PROMIS measures, mean differences and correlations of scores estimated by the PROMIS-16 with those estimated by the PROMIS-29, and associations between differences in corresponding PROMIS-16 and PROMIS-29 scores by sociodemographic characteristics. A two-factor (physical and mental health) model adequately fits the PROMIS-16 scores. Reliability estimates for the PROMIS-16 measures were slightly lower than for the PROMIS-29 measures. There were minimal differences between PROMIS physical and mental health summary scores estimated using the PROMIS-16 or the PROMIS-29. PROMIS-16 and PROMIS-29 score differences by sociodemographic characteristics were small. Using the PROMIS pain intensity item when scoring the PROMIS-16 produced similar estimates of physical and mental health summary scores. The PROMIS-16 provides similar estimates of the PROMIS-29 physical and mental health summary scores. The high reliability of these scores indicates they are accurate enough for use with individual patients.

Preoperative patient-reported physical health-related quality of life predicts short-term postoperative outcomes in brain tumor patients.

Patient-reported outcome measures (PROMs) are increasingly used to assess patients' perioperative health. The PROM Information System 29 (PROMIS-29) is a well-validated global health assessment instrument for patient physical health, though its utility in cranial neurosurgery is unclear. To investigate the utility of preoperative PROMIS-29 physical health (PH) summary scores in predicting postoperative outcomes in brain tumor patients. Adult brain tumor patients undergoing resection at a single institution (January 2018-December 2021) were identified and prospectively received PROMIS-29 surveys during pre-operative visits. PH summary scores were constructed and optimum prediction thresholds for length of stay (LOS), discharge disposition (DD), and 30-day readmission were approximated by finding the Youden index of the associated receiver operating characteristic curves. Bivariate analyses were used to study the distribution of low (z-score≤-1) versus high (z-score>-1) PH scores according to baseline characteristics. Logistic regression models quantified the association between preoperative PH summary scores and post-operative outcomes. A total of 157 brain tumor patients were identified (mean age 55.4±15.4 years; 58.0% female; mean PH score 45.5+10.5). Outcomes included prolonged LOS (24.8%), non-routine discharge disposition (37.6%), and 30-day readmission (19.1%). On bivariate analysis, patients with low PH scores were significantly more likely to be diagnosed with a high-grade tumor (69.6% vs 38.85%, p=0.010) and less likely to have elective surgery (34.8% vs 70.9%, p=0.002). Low PH score was associated with prolonged LOS (26.1% vs 22%, p<0.001), nonroutine discharge (73.9% vs 31.3%, p<0.001) and 30-day readmission (43.5% vs 14.9%, p=0.003). In multivariate analysis, low PH scores predicted greater LOS (odds ratio [OR]=6.09, p=0.003), nonroutine discharge (OR=4.25, p=0.020), and 30-day readmission (OR=3.93, p=0.020). The PROMIS-29 PH summary score predicts short-term postoperative outcomes in brain tumor patients and may be incorporated into prospective clinical workflows.

Prospective Evaluation of Health-Related Quality-of-Life in Children with Craniosynostosis.

To investigate health-related quality of life (HRQL) in children aged 2 to 7 years, who have undergone surgery for craniosynostosis. Cross-sectional survey. A tertiary pediatric academic medical center. Children with craniosynostosis who underwent surgical correction, and who were 2-7 years old at the time of the study. Children from families that did not speak English were excluded. Caregivers were asked to fill out the Pediatric Quality of Life Inventory (PedsQL) Core Parent Report and the PedsQL Cognitive Functioning Scale. PedsQL: Psychosocial Health Summary Score, Physical Health Summary Score, Total Core Score, Cognitive Functioning Scale Score. Scores range from 0 to 100, with higher scores reflecting greater QoLSubject factors: comorbidities, syndromic status, type of craniosynostosis, type of surgery. The study included 53 subjects, of whom 13.2% had a syndrome. Core and cognitive scores did not depend on presence of a syndrome or suture involved. Subjects who underwent posterior cranial distraction achieved higher Total Core Scores than subjects who underwent open vault remodeling. Among subjects with sagittal craniosynostosis, there was a tendency for higher scores among children who underwent minimally-invasive surgery compared to those who underwent open vault remodeling. This study demonstrates similar HRQL among children with and without a syndrome, higher HRQL among children undergoing posterior cranial distraction than those undergoing open vault remodeling, and trends towards higher HRQL in children with sagittal craniosynostosis who underwent minimally-invasive surgery compared to those who underwent open vault remodeling.

Evaluation of quality of life in children with precocious puberty.

This study aimed to investigate the quality of life of patients with central precocious puberty (CPP) who required treatment and premature thelarche (PT) followed up without treatment and to compare the groups with and without treatment among themselves and with healthy children. This study is designed as a case-control study. A total of 193 children including 59 children with CPP, 53 children with PT, 81 healthy children and their parents were included in the study. A questionnaire was applied to evaluate the sociodemographic characteristics that would affect the quality of life. The 'Pediatric Quality of Life Inventory (PedsQL)' was used to assess the quality of life. The PedsQL total scale score was 78.10 ± 17.13, 79.35 ± 11.54 and 79.52 ± 14.65, the psychosocial health summary score was 78.86 ± 16.83, 79.40 ± 12.54 and 79.94 ± 14.94 and physical health summary score was 75.81 ± 20.69, 79.41 ± 15.04 and 78.25 ± 17.52 in CPP, PT and control groups, respectively; however, there was no statistical difference (p > .05). In the scale administered to the parents, scores were similar in the three groups. No difference was found between CPP, PT and control groups in terms of sociodemographic data in the study (p > .05). Unlike previous studies, in this study the effects of sociodemographic characteristics and whether treatment was initiated or not on quality of life were investigated. Although the scale scores of the CPP group were lower than the PT and control group, there was no statistically significant difference, indicating that quality of life was not negatively affected in the CPP group receiving treatment.

Effect of Adding Virtual Reality Training to Traditional Exercise Program on Pain, Mental Status and Psychological Status in Unilateral Traumatic Lower Limb Amputees: A Randomized Controlled Trial.

Background: Lower limb amputation is an emotionally devastating condition that causes a complete change in the quality of life, may lead to phantom limb pain in most of the cases, and puts the individual in a high risk of developing psychological disorders. The objective of this study is to evaluate the consequence of adding virtual reality (VR) to a traditional exercise program on pain, mental status, and psychological status in traumatic unilateral lower limb amputees (LLAs). Methods: Thirty-two traumatic LLAs were randomly assigned into two equal groups in this randomized control trial. Participants did accomplish a postfitting exercise program at least 6 months before enrolment; the control group (CG) underwent a traditional rehabilitation program, and experimental group (EG) had the same program, in addition to VR training. Data were collected before and after 6 weeks of intervention using visual analog scale (VAS) for pain, Beck's depression inventory (BDI) for depression, and 12-item short form survey for mental health summary (MHS) and physical health summary (PHS). Results: Thirty-two amputees (29 males and 3 females) were included with mean age in CGs and EG (27.6 ± 4) and (27.6 ± 7.6) years, respectively. Postintervention, the VAS score was significantly reduced only in EG (P = 0.003). Both groups showed significant improvement in BDI, MHS, and PHS (P < 0.05). However, the EG showed a superior significance in BDI and MHS scores (P < 0.05). There was no significance between groups in PHS score. Conclusion: Adding VR to conventional training is beneficial in decreasing pain and in improving depression and MHS of traumatic unilateral LLAs.