Self-reported Quality Of Life Research Articles

PND5 Relationship between the Short-Form 12 (SF-12) and Schizophrenia Symptom Rating Scales in a Randomized Controlled Clinical Trial of Paliperidone Palmitate 3 Monthly Formulation

There is increasing emphasis on understanding impact of core symptoms and functioning on well-being and quality-of-life (QOL) to achieve holistic outcomes in schizophrenia. The short-form-12 (SF-12) is a widely used generic measure of self-reported health-related QOL (HRQOL). Relationship of SF-12 as an outcome measure of HRQOL in patients with schizophrenia with clinically relevant symptom rating scales for schizophrenia was evaluated.

MO883FATIGUE IS THE PREDOMINANT PATIENT-REPORTED OUTCOME MEASURE IN HEMODIALYSIS PATIENTS: RESULTS OF A MULTICENTER CROSS-SECTIONAL EPROMS STUDY

Abstract Background and Aims End Stage renal disease (ESRD) and hemodialysis are associated with a decrease in quality of life (QOL). Self-reported QOL symptoms are not always prioritized by the medical team, potentially leading to conflicting priorities with patients. Electronic patient-reported outcome measures (ePROMs) allow physicians to better describe these symptoms. The objective was to describe the prevalence of symptoms self-reported by HD patients. Method A multicenter cross-sectional study was conducted in three HD centers. Patients were included if they were 18 years old or over and treated with HD for at least three months in a center. Data were collected by the patient via a self-administered ePROMs questionnaire. Data included patient characteristics, post-dialysis fatigue and intensity, recovery time after a session, perceived stress, impaired sleep the day before the dialysis session, current state of health, and the one-year change. Results In total, we included 173 patients with a mean age of 66.2 years, a mean ± SD hemodialysis duration of 48.9 ± 58.02 months, mainly treated in self-dialysis unit (67%) and having at least one comorbidity (72.5%). The prevalence of fatigue was 72.1% [IC 95% 64.7% to 78.7%] with a mean severity score of 5.84± 2.12. 66.4% had a high level of stress (level B or C). Recovery time was more than 6 hours for 24.9% of patients and 78 % declared they had a better or unchanged health status than the previous year. The self-perceived health status of patients was 6.2± 2.12 and 77.5% [IC 95% 70.5% to 83.5%] of patients stated that they had not a worsened health status than the year before. No statistical differences were observed between centers for the PROMS. Despite significant differences in patient characteristics from the three centers including age, comorbidities or type of dialysis, no differences were found on the prevalence of the various PROMs, in favor of internally Conclusion Fatigue and stress were the main symptoms reported by HD patients. There was no association between symptoms reported and comorbidities clinical results of patients. The patient’s care teams should better consider these symptoms.

Self-reported quality of life in people with dementia attending a day-care programme in Norway: A 24-month quasi-experimental study.

The objectives of the study were (a) to compare self-reported Quality of Life (QoL) in a 24-month follow-up of people with dementia attending day care designed for people with dementia (day-care group, DC) with people with dementia who did not attend day care (control group, CG) and (b) to explore factors associated with QoL. A quasi-experimental design with a 24-month follow-up period was used. The DC group included 181 participants recruited from 53day-care services. The CG included 76 participants recruited from 19 municipalities with no available day care designed for people with dementia. The sample covered the four health regions of Norway and inclusion period lasted from December 2013 to July 2015. The Quality of Life in Alzheimer's Disease (QoL-AD) scale was used as the outcome measure. The differences in QoL between groups and the associations between participant characteristics and QoL, such as depressive symptoms and functional dependency, were examined using a linear mixed model. In the multiple model, the overall trend in QoL did not differ significantly between the DC and CG. However, the DC group exhibited significantly higher self-reported QoL than the CG at all time points (p<0.001 at T0, p=0.018 at T12, and p=0.006 at T24). Participants with shallow or no awareness who attended day care had significantly higher scores on QoL-AD than persons with full awareness (p=0.017). More depressive symptoms (p<0.001) and higher functional dependency (p<0.001) were associated with lower self-reported QoL. The study revealed higher scores of self-reported QoL among people attending day care compared with those who did not attend, showing that day care might have positive impact on the lives of people with dementia.

Laparoscopic Versus Open Incisional Hernia Repair: Long‐Term Follow‐up Results of a Randomized Clinical Trial

Long-term extension of a previous randomized controlled clinical trial comparing open (OVHR) vs. laparoscopic (LVHR) ventral hernia repair, assessing recurrence, reoperation, mesh-related complications and self-reported quality of life with 10 years of follow-up. Eighty-five patients were followed up to assess recurrence (main endpoint), reoperation, mesh complications and death, from the date of index until recurrence, death or study completion, whichever was first. Recurrence, reoperation rates and death were estimated by intention to treat. Mesh-related complications were only assessed in the LVHR group, excluding conversions (intraperitoneal onlay; n = 40). Quality of life, using the European Hernia Society Quality of Life score, was assessed in surviving non-reoperated patients (n = 47). The incidence rates with 10 person-years of follow-up were 21.01% (CI 13.24-33.36) for recurrence, 11.92% (CI: 6.60-21.53) for reoperation and 24.88% (CI 16.81-36.82) for death. Sixty-two percent of recurrences occurred within the first 2 years of follow-up. No significant differences between arms were found in any of the outcomes analyzed. Incidence rate of intraperitoneal mesh complications with 10 person-years of follow-up was 6.15% (CI 1.99-19.09). The mean EuraHS-QoL score with 13.8 years of mean follow-up for living non-reoperated patients was 6.63 (CI 4.50-8.78) over 90 possible points with no significant differences between arms. In incisional ventral hernias with wall defects up to 15 cm wide, laparoscopic repair seems to be as safe and effective as open techniques, with no long-term differences in recurrence and reoperation rates or global quality of life, although lack of statistical power does not allow definitive conclusions on equivalence between alternatives. ClinicalTrial.gov (NCT04192838).

Profile of subjective-objective sleep discrepancy in patients with insomnia and sleep apnea.

Although subjective-objective sleep discrepancy has long been observed in patients with insomnia, the profiles of this discrepancy are poorly understood. Further, sleep discrepancy in insomnia with sleep comorbidities remains underexplored. We sought to better characterize sleep discrepancy among patient groups with and without insomnia and comorbid conditions such as obstructive sleep apnea (OSA). Using data from the Sleep Heart Health Study, we conducted a secondary analysis describing (1) the profile of self-reported and objective sleep measures in patients with insomnia (IS group; n = 73) and comorbid OSA (IS + OSA group; n = 143), compared with individuals with OSA only (OSA group; n = 296) and normal sleep control patients (NSC group; n = 126); (2) the comparative magnitude of sleep misperception between these 4 groups; and (3) the self-reported quality of life (QOL) in the 4 groups. Subjective-objective sleep discrepancy existed in all 4 groups, including the NSC group. Controlling for age, sex, mental health conditions, sleep apnea severity, and objectively measured sleep time, the presence of self-reported insomnia had the strongest association with sleep discrepancy. In patients with insomnia, sleep onset latency was overestimated (7.8 ± 36.8 min in the IS group; P < .001 when compared to the NSC and OSA groups), with the largest differences seen in the comorbid IS + OSA group (15.0 ± 56.8 min). Insomnia conferred the most negative impact on QOL, with the combined IS + OSA group reporting the lowest QOL. Self-reported insomnia is associated with sleep discrepancy and negative QOL. Those with comorbid OSA reported the greatest sleep discrepancy and the lowest QOL. Future research is warranted to further understand individual profiles of misperception and insomnia phenotypes. Ma Y, Goldstein MR, Davis RB, Yeh GY. Profile of subjective-objective sleep discrepancy in patients with insomnia and sleep apnea. J Clin Sleep Med. 2021;17(11):2155-2163.

Examining the Impacts of the Built Environment on Quality of Life in Cancer Patients Using Machine Learning

Despite accumulative evidence regarding the impact of the physical environment on health-related outcomes, very little is known about the relationships between built environment characteristics and the quality of life (QoL) of cancer patients. This study aims to investigate the association between the built environment and QoL by using survey data collected from cancer patients within the United States in 2019. To better understand the associations, we controlled the effects from sociodemographic attributes and health-related factors along with the residential built environment, including density, diversity, design, and distance to transit and hospitals on the self-reported QoL in cancer patients after treatment. Furthermore, machine learning models, i.e., logistic regression, decision tree, random forest, and multilayer perceptron neural network, were employed to evaluate the contribution of these features in predicting the QoL. The results from machine learning models indicated that the travel distance to the closest large hospital, perceived accessibility, distance to transit, and population density were among the most significant predictors of the cancer patients’ QoL. Additionally, the health insurance status, age, and education of patients are associated with QoL. The adverse effects of density on the self-reported QoL in this study can be addressed by individuals’ emotions towards negative aspects of density. Given the strong association between QoL and urban sustainability, consideration should be given to the side effects of urban density on cancer patients’ perceived wellbeing.

Can robot-assisted kidney transplantation provide higher quality of life than open kidney transplantation during the early postoperative period?

Purpose of this study is to investigate the quality of life (QoL) in patients with end-stage renal disease who underwent open or robot-assisted kidney transplantation (OKT and RAKT). Patients who underwent OKT and RAKT at Bakirkoy Sadi Konuk Training and Research Hospital between June 2016 and December 2018 constituted the target population of this study. The patient group was divided into two groups as per the surgical technique (ie, open vs. robot-assisted). Demographic data, preoperative and postoperative data of all patients were collected prospectively. The QoL of the patients was assessed preoperatively and on the postoperative 30th day. Sixty-seven patients who underwent OKT and 60 patients who underwent RAKT were included. The mean patient age and BMI were calculated as 40.9±11.6years and 24.4±2.9kg/m2 , respectively. Patients in the RAKT group were significantly younger than the patients in the OKT group (P=.002). There were no significant differences between the two groups in terms of gender, BMI, ASA and the ratio of premptive patients. The mean preoperative hemoglobin level was significantly higher in the OKT group than the RAKT group (P=.003). While mean total ischemia time was shorter in the "open" group, intraoperative blood loss and incision length were shorter in the RAKT group. Duration of surgical drainage and hospital stay was shorter in the "robot-assisted" group. There was no significant difference between the groups in terms of SF-36 subparameters preoperatively. The physical component scores of the QoL questionnaire revealed that postoperative impairment of quality of life in the early postoperative period was more significant in the OKT than the RAKT. Patients who underwent RAKT have a higher QoL than the patients who were treated with OKT as per their self-reported QoL scores in the early postoperative period.

Incorporation of Patient-Reported Outcomes Measurement Information System to assess quality of life among patients with breast cancer initiating care at an academic center.

Symptom burden and reduced quality of life (QOL) are considerable hurdles in oncology. The authors used the Patient-Reported Outcomes Measurement Information System (PROMIS), which assesses physical and psychosocial health, to establish a mean symptom burden, examine potential drivers, and characterize severe symptom burden in breast cancer patient subgroups with the goal of characterizing stage IV patient QOL and triaging patients to individualized supportive care services. New patients at the University of California San Francisco Breast Care Center received questionnaires with 8 PROMIS domains: depression, anxiety, fatigue, sleep-related impairment, sleep disturbance, cognitive function, cognitive abilities, and physical function. PROMIS values were scored with the HealthMeasures service and were compared by age, cancer stage, and educational status. Stage IV patients with breast cancer (n = 169) reported higher depression and fatigue and worse cognitive function, cognitive abilities, and physical function than patients with stage 0 to III disease (n = 2577). As age increased, cognitive function impairment, depression, anxiety, and sleep-related symptoms decreased. More educated patients showed better physical function and less severe sleep disturbance and fatigue. Across all subgroups, patients with high anxiety had the greatest probability of worse symptom burden and function in other domains. This study provides an additional set of PROMIS population estimates across breast cancer demographic groups. The analysis of a large stage IV population reinforces that metastatic patients have impaired QOL across multiple domains. Because anxiety emerged as a potential driver of impaired QOL in other domains, earlier interventions to reduce anxiety could improve QOL overall. These analyses will help to determine appropriate thresholds of intervention. Patients receiving treatment for breast cancer can experience decreased quality of life. This study characterized differences in self-reported quality of life among patients of different ages, with different stages of cancer, and with different educational backgrounds. This study also examined the effect of decreased quality of life in one area (eg, anxiety) on another area (eg, difficulty in sleeping). Patients who were younger, had not attended college or technical school, or had stage IV cancer tended to have worse quality of life. Patients who had high levels of anxiety also tended to have high levels of impairment in other areas.

Music as Add-On Therapy in the Rehabilitation Program of Parkinson's Disease Patients-A Romanian Pilot Study.

Music has been proven to have therapeutic potential in neurological disorders, especially Parkinson’s disease (PD), since rhythmic auditory cueing can partially replace the progressive loss of rhythmicity and automaticity. Several reports have highlighted improvements in motor outcomes in PD patients undergoing music therapy, but only a few studies have evaluated non-motor outcomes, such as quality of life (QoL), which deteriorates with disease progression. The current pilot study aims to examine the effects of a multimodal rehabilitation program centered on physical therapy combined with listening to music on self-reported QoL in people with PD, compared to the same rehabilitation program alone. The study was conducted on patients with idiopathic PD who attended a specific rehabilitation program with a duration of 2.5 h daily for 14 days. The patients were divided into the study group (16 patients), who listened to background music during the rehabilitation program sessions, and the control group who did not listen to music during sessions. The patients were assessed using the self-report Parkinson’s Disease Questionnaire (PDQ-39) at the beginning of the program and 1 month after its initiation. The patients in the study group registered greater improvements in five of the eight areas of life assessed by PDQ-39 compared to the control group. In conclusion, listening to music combined with a multimodal rehabilitation program centered on physical therapy may be beneficial for the patients’ quality of life.

Youth with hearing loss: Emotional and behavioral problems and quality of life

ObjectivesTo compare parent- and self-reported emotional and behavioral problems and quality of life (QoL) among youth with hearing loss (HL) to norms, and to investigate possible associations between emotional and behavioral problems and QoL among youth with HL. MethodsWe used the Strengths and Difficulties questionnaire (SDQ) and the Inventory of Life Quality in Children and Adolescents (ILC) to measure emotional and behavioral problems and QoL in youth with HL (n = 317, ages 6–18), where 78% had bilateral HL, 22% unilateral HL, 16% had cochlear implants, and 59% conventional hearing aids. ResultsThe youth with HL had significantly more parent-reported (but not self-reported) emotional and behavioral problems and poorer parent- and self-reported QoL than hearing youth. SDQ and ILC total scores were significantly correlated (−0.47 to −0.63). Conclusion Emotional and behavioral problems and poor QoL appear closely related in youth with HL, suggesting that attending to these problems may improve QoL.

A Home-Based Mobile Health Intervention to Replace Sedentary Time With Light Physical Activity in Older Cancer Survivors: Randomized Controlled Pilot Trial.

BackgroundOlder cancer survivors are at risk of the development or worsening of both age- and treatment-related morbidity. Sedentary behavior increases the risk of or exacerbates these chronic conditions. Light-intensity physical activity (LPA) is more common in older adults and is associated with better health and well-being. Thus, replacing sedentary time with LPA may provide a more successful strategy to reduce sedentary time and increase physical activity.ObjectiveThis study primarily aims to evaluate the feasibility, acceptability, and preliminary efficacy of a home-based mobile health (mHealth) intervention to interrupt and replace sedentary time with LPA (standing and stepping). The secondary objective of this study is to examine changes in objective measures of physical activity, physical performance, and self-reported quality of life.MethodsOverall, 54 cancer survivors (aged 60-84 years) were randomized in a 1:1:1 allocation to the tech support intervention group, tech support plus health coaching intervention group, or waitlist control group. Intervention participants received a Jawbone UP2 activity monitor for use with their smartphone app for 13 weeks. Tech support and health coaching were provided via 5 telephone calls during the 13-week intervention. Sedentary behavior and physical activity were objectively measured using an activPAL monitor for 7 days before and after the intervention.ResultsParticipants included survivors of breast cancer (21/54, 39%), prostate cancer (16/54, 30%), and a variety of other cancer types; a mean of 4.4 years (SD 1.6) had passed since their cancer diagnosis. Participants, on average, were 70 years old (SD 4.8), 55% (30/54) female, 24% (13/54) Hispanic, and 81% (44/54) overweight or obese. Malfunction of the Jawbone trackers occurred in one-third of the intervention group, resulting in enrollment stopping at 54 rather than the initial goal of 60 participants. Despite these technical issues, the retention in the intervention was high (47/54, 87%). Adherence was high for wearing the tracker (29/29, 100%) and checking the app daily (28/29, 96%) but low for specific aspects related to the sedentary features of the tracker and app (21%-25%). The acceptability of the intervention was moderately high (81%). There were no significant between-group differences in total sedentary time, number of breaks, or number of prolonged sedentary bouts. There were no significant between-group differences in physical activity. The only significant within-group change occurred within the health coaching group, which increased by 1675 daily steps (95% CI 444-2906; P=.009). This increase was caused by moderate-intensity stepping rather than light-intensity stepping (+15.2 minutes per day; 95% CI 4.1-26.2; P=.008).ConclusionsA home-based mHealth program to disrupt and replace sedentary time with stepping was feasible among and acceptable to older cancer survivors. Future studies are needed to evaluate the optimal approach for replacing sedentary behavior with standing and/or physical activity in this population.Trial RegistrationClinicalTrials.gov NCT03632694; https://clinicaltrials.gov/ct2/show/NCT03632694

Physical activity status and quality of life in patients with epilepsy – Survey from level four epilepsy monitoring units

PurposePeople with epilepsy (PWE) tend to have sedentary lifestyles which may predispose them to a lower perceived quality of life (QOL). Moreover, the relationship between physical activity (PA) and QOL in populations of PWE with high disease burden has been under-studied. The goal of this study was to evaluate PA level and its impact on health-related QOL in PWE who were admitted to Level-4 epilepsy monitoring units (EMU). MethodsIn this prospective observational study, 200 patients from two EMUs in Dallas, Texas completed the following standard surveys: Rapid Assessment of Physical Activity (RAPA), the Quality of Life in Epilepsy (QOLIE-31), Patient Health Questionnaire-9 (PHQ-9), and Generalized Anxiety Disorder 7-item (GAD-7) questionnaire. Information on self-reported epilepsy history, severity of disease, and socioeconomic status were also collected. The diagnosis of epilepsy was confirmed by video-EEG monitoring. ResultsAmong the 200 who completed the survey, 113 had a diagnosis of epilepsy and 109 of them completed the RAPA. Ninety-two (84 %) of these PWE reported a sedentary level of physical activity (RAPA < 6) and 16 % reported an active level (RAPA ≥ 6). Self-reported QOL was slightly higher in PWE with an active level of PA compared to PWE with a sedentary level of PA (63.8 ± 15.0 vs 53.7 ± 17.9, p = 0.07), even though there was no difference in the severity of self-reported mood symptoms. After controlling for employment and seizure frequency, physical activity level measured by RAPA score was also positively related to QOL (r = 0.39, p = 0.01) and negatively correlated with anxiety symptoms (r = -0.28, p = 0.02) and depression symptoms (r = -0.25, p = 0.04). ConclusionThe majority of PWE in this survey reported sedentary lifestyles despite most of them being young to middle-aged adults. Higher PA level was associated with fewer self-reported mood symptoms and higher QOL. In conjunction with the literature, these results suggest that PWE with a wide range of disease burden should be encouraged to participate in regular exercise to potentially improve QOL.

Quality-of-Life Discrepancies Among Autistic Adolescents and Adults: A Rapid Review.

Quality of life (QoL) is a core outcome of occupational therapy, but it is decreased among autistic adolescents and adults. This is the first review of QoL from an occupational therapy standpoint. To identify self-reported QoL differences between autistic and nonautistic samples; investigate sex differences in QoL among autistic people; examine consistency in QoL among autistic people across age, intellectual disability (ID), and self- versus proxy-report method; and appraise occupational therapy-related interventions addressing QoL among autistic people. Articles published in peer-reviewed journals between 2010 and 2020, located through Academic Search Ultimate, PubMed, and OTseeker, along with the American Journal of Occupational Therapy, British Journal of Occupational Therapy, Canadian Journal of Occupational Therapy, and Australian Occupational Therapy Journal. Study Selection and Data Collection: Article samples consisted of at least 20% autistic females and used self-reported QoL measures. Qualitative research was excluded, as well as studies with participants younger than age 13 yr. Twenty-seven articles qualified (3 Level 1B, 13 Level 3B, and 11 Level 4). Autistic adolescents and adults demonstrated decreased self-reported QoL compared with nonautistic peers across age and ID presence. One article compared sex differences in QoL among autistic people. Interventions improved QoL among autistic people. Autistic adolescents and adults demonstrate decreased QoL in comparison with nonautistic peers. Questions remain related to sex differences in QoL among autistic people, an area for future research. Multiple evidence-based approaches to improve QoL in the autistic population are relevant to occupational therapy practice. What This Article Adds: Self-reported QoL among autistic adolescents and adults is clearly lower than among their nonautistic counterparts. This article provides information on multiple interventions related to occupational therapy to improve QoL among autistic people.

The Relations Among Types of Parentification, School Achievement, and Quality of Life in Early Adolescence: An Exploratory Study.

Children who experience parentification may have trouble performing developmental tasks due to being overwhelmed by their family caregiving roles and responsibilities. Past studies have found that parentification is negatively associated with academic achievement. However, most of these studies are limited in that they are retrospective and examine the association but not the mechanisms shaping them. The aim of the study was to explore to what extent diverse types of parentification relate to academic achievement and to what extent these relations are mediated by self-reported quality of life among adolescents. The study sample was composed of Polish early adolescents (N = 191; age: M = 14.61; SD = 1.26). Types of parentification were measured with the Parentification Questionnaire for Youth, and quality of life was assessed with KidScreen27. School achievement was measured based on mean semester grade. We explored the associations among study variables and performed six mediation models in the planned analyses. Overall, bivariate relations were significant in a theoretically expected way, although the effect sizes for these associations were rather small. In the mediation analyses, the results showed that four of the six models were not significant. Different from previous studies, instrumental parentification was positively related to school achievement. Additionally, this positive association was mediated by adolescents’ general quality of life. Taken together, the findings were similar and different from the empirical literature base on types of parentification and select outcomes.

Post-traumatic stress as a determinant of quality of life in pediatric solid-organ transplant recipients.

Living with end-stage organ failure is associated with an accumulation of traumatic medical events, and despite recovery after solid-organ transplantation (SOT), many children continue to exhibit lower quality of life (QOL). Few studies have examined the relationship between post-traumatic stress disorder (PTSD) and QOL among pediatric SOT recipients. We conducted a retrospective, cross-sectional review of 61 pediatric SOT recipients (12 heart, 30 kidney, and 19 liver) to evaluate the association of PTSD with self-reported QOL. PTSD was measured by the Child Trauma Screening Questionnaire (CTSQ), and QOL was measured using the PedsQL and PedsQL Transplant Module (PedsQL-TM) surveys. Demographics, baseline, and contemporaneous factors were tested for independent association. SOT recipients were 15.2 (12.1-17.6) years old at survey completion. Median CTSQ score was 2 (1-3), highest in kidney recipients, and 13% were identified as high risk for PTSD. Median PedsQL score was 83 (70-91) and significantly associated with the CTSQ score (r=-.68, p<.001). Median PedsQL Transplant Module score was 89 (83-95) and similarly associated with the CTSQ score (r=-.64, p<.001). Age at time of surveys and presence of any disability were also independently associated with PedsQL and PedsQL-TM, respectively. When adjusted for Emotional Functioning, CTSQ remained associated with PedsQL subscores (r=-.65, p<.001). Trauma symptoms are a major modifiable risk factor for lower self-perceived QOL and represent a potentially important target for post-transplant rehabilitation. Additional research is needed to understand the root contributors to PTSD and potential treatments in this population.

Ear Infection Trajectories and Academic, Behavioral, and Quality-of-Life Outcomes: A Population-Based Longitudinal Study.

The purpose of this study was to investigate (1) typical trajectories of parent-reported ear infections throughout childhood and (2) their associations with child outcomes. Design and participants: Two parallel cohorts assessed biennially from 2004 to 2014 spanning ages 0-1 to 10-11 years (B cohort, n = 3721) and ages 4-5 to 14-15 years (K cohort, n = 3489) in the Longitudinal Study of Australian Children. Ear infection: Parent-reported ongoing ear infections (B: waves 1-6; K: waves 1, 2, 4, and 5). Outcomes (wave 6): National academic standardized test, teacher-reported learning, parent- and teacher-reported behavior, and self-reported quality of life. Analysis: Latent class models identified ear infection trajectories. Linear regression quantified associations between trajectories and outcomes. Four probability trajectories of ear infections emerged in both cohorts: "consistently low" (B 86.2%, K 87.0%), "moderate to low" (5.5%, 9.7%), "low to moderate" (7.0%, 1.5%), and "consistently high" (1.4%, 1.8%). In K cohort, the "consistently high" group had the worst outcomes (effect sizes 0.2-0.8 SDs), with effect sizes largest for psychosocial and language outcomes. "Moderate to low" and "low to moderate" groups showed marginal to no academic associations, although behavior and quality-of-life scores were 0.2 to 0.3 SDs poorer than the "consistently low" group. Similar but attenuated associations were seen in B cohort. Sizable adverse adolescent outcomes follow parent reports of persistent ongoing ear infections throughout childhood. Despite a possibility of reverse causation, this suggests that cumulative rather than age-specific ear infections are most important to outcomes. Clinicians may generally be reassuring about ongoing ear infections limited to either early or middle childhood but should proactively identify and manage the small subgroup whose early infections persist throughout the elementary school years.

The effect of training intensity on implicit learning rates in schizophrenia

Cognitive impairments in learning and memory are core symptoms of schizophrenia, associated with reduced self-reported quality of life. The most effective treatment of cognitive impairments is drill and practice cognitive training. Still, to date no study has investigated the effect of varying the frequency of training on cognitive outcomes. Here we utilized a verbal memory based language learning task, tapping into implicit cognitive processes, to investigate the role of training intensity on learning rates in individuals with schizophrenia. Data from 47 participants across two studies was utilized, one with a daily training regimen over 5 days and the other with a more intensive schedule of 5 sessions delivered over 2 days. The primary outcome measure was the change in implicit learning performance across five sessions, quantified with the Matthews Correlation Coefficient (MCC). Participants in the daily training group showed improved performance compared to the intensive group only at session 4. This is the first study to show that implicit learning rates are influenced by training intensity, with daily sessions outperforming a more intensive regimen; a period of consolidation overnight may be necessary to optimize cognitive training for individuals with schizophrenia.

Self-Reported Quality of Life in Children on Ventricular Assist Devices: A Pedimacs Analysis

Purpose Given the paucity of data on quality of life (QOL) after ventricular assist device (VAD) implant in children, we sought to describe self-reported QOL in children on VAD support and to identify potential factors associated with impaired QOL. Methods There were 82 children (6-19 y) in the Pediatric Interagency Registry for Mechanical Circulatory Support who completed the generic Pediatric Quality of Life Inventory (PedsQL) +/- a VAD-specific QOL assessment pre-VAD implant (n=18), 3 months (m) post-VAD (n=62) and/or 6 m post VAD (n=38). Their QOL was compared to the general pediatric population, children with a chronic health condition, and children with severe/complex heart disease. Significantly impaired QOL is a score >1 SD below the pediatric population mean. Results The study group was 59% male, 67% Caucasian, with a primary diagnosis of cardiomyopathy in 82%, and a median age at 1st implant of 14 y (IQR 11-17). At 3 m and 6 m post-VAD, 63% and 81% were outpatient. PedsQL scores were lower than pediatric norms for physical (p 2 weeks/ongoing post-VAD (p =.04), but was not associated with age at implant, primary diagnosis, hospital length of stay, adverse events or re-hospitalizations within 3 m post-implant, or with discharge status at 3 m post-VAD. Conclusion Physical QOL is significantly impaired in the majority of patients pre- and post-VAD. However, psychosocial QOL is not significantly impaired in nearly 3/5 patients at 3 m post-VAD. While the study was limited by the small number of patients who had more than one assessment over time, group data suggest VAD implantation may improve psychosocial QOL.

Integrative review and evaluation of quality of life related instruments in pediatric urology

While most paediatric urologists consider patients' quality of life (QOL) important, few actually measure this outcome. Our goal was to assess instruments used in the pediatric urology QOL literature, specifically looking at whether they captured QOL. We searched MEDLINE and EMBASE for articles with a self-described primary outcome of measuring QOL. All validated QOL instruments in the papers were analyzed by QOL instrument content experts. Instruments were classified as focusing on: Functioning or QOL (Table). The term Functioning focuses on performing activities. QOL captures person's perceptions about their position in life, informed by circumstances, functioning and conditions. QOL instruments were further subdivided into generic QOL, health-related QOL (HRQOL) and disease-specific HRQOL. Only direct patient self-reported QOL instruments were then assessed, since they are the most clinically useful, reliably assessing patients' own perception of their QOL. Forty-three publications met inclusion criteria (published 1999-2019). Most common conditions included urinary incontinence (16, 37.2%) and kidney transplantation (12, 27.9%). Overall, 22 unique instruments purporting to measure QOL were identified. Looking at the concepts measured by each instrument, nine instruments (40.9%) assessed Functioning. Nine instruments (40.9%) measured a combination of Functioning and QOL. Only the remaining 4 instruments (18.2%) assessed strictly QOL. The 13 instruments assessing any QOL focused on generic QOL (n=4), HRQOL (n=3) and disease-specific HRQOL (n=6). Of the subset of four instruments assessing strictly QOL, and not Functioning, all had patient self-reported versions available: two generic QOL instruments (KINDL, KIDSCREEN), one generic HRQOL (DISABKIDS), and one disease-specific HRQOL (QUALAS). Thirteen of 43 studies (30.2%) employed more than one instrument. Thirty-eight studies (88.4%) used an instrument measuring Functioning, with 19 (44.1%) measuring only Functioning, not QOL at all. Twenty-four studies (55.8%) used an instrument measuring actual QOL, although 17 (39.5%) used a combined Functioning/QOL instrument. Only nine (20.9%) used a strictly QOL instrument (strictly HRQOL instruments: 4.7%). We present encouraging evidence of sustained interest in QOL research in pediatric urology and identify areas needing improvement. Selecting appropriate QOL tools requires a working knowledge of their various underlying meanings and purposes. Whether it adequately assess QOL must be considered. We discuss strengths and weaknesses of instruments and a practical approach to QOL instrument selection. Much of pediatric urology is grounded in improving QOL. Unfortunately, most studies published to date focus on Functioning, rather than young people's perception-based QOL. Future QOL studies should ideally employ validated instruments capturing patient-reported QOL.

Quality of Life in Men With Congenital Adrenal Hyperplasia Due to 21-Hydroxylase Deficiency

Congenital adrenal hyperplasia (CAH) due to 21-hydroxylase deficiency (21OHD) is a disorder of adrenal steroid biosynthesis, leading to hypocortisolism, hypoaldosteronism, and hyperandrogenism. Impaired quality of life (QoL) has been demonstrated in women with CAH, but data on men with CAH are scarce. We hypothesized that disease severity and poor treatment control are inversely associated with QoL. In this study, 109 men (16-68 years) with 21OHD were included. The WHOQOL-BREF questionnaire was used to measure self-reported QoL domain scores on a 0-100 scale, where higher scores reflect better QoL. QoL domain scores were compared to published data on healthy and chronically ill reference populations from France, Germany, the Netherlands, and the United Kingdom. Differences in QoL scores among groups of disease severity and treatment control were tested within the study population. Overall, the men with CAH in this study appeared to rate their QoL as good. Median domain scores were 78.6 (IQR: 67.9-85.7) for physical health, 79.2 (IQR: 66.7-87.5) for psychological health, 75.0 (IQR: 58.3-83.3) for social relationships, and 81.3 (IQR: 71.9-90.6) for environment. In general, these scores were similar to WHOQOL-BREF domain scores in healthy references and higher compared to chronically ill reference populations. The domain scores did not differ among genotype groups, but patients with undertreatment or increased 17-hydroxyprogestrone concentrations scored higher on several QoL domains (p<0.05). Patients treated with dexamethasone or prednisone scored higher on the physical health, psychological health, and social relationships domains, but not on the environmental domain. In conclusion, QoL domain scores appeared to be comparable to healthy reference populations and higher compared to patients with a chronic illness. QoL was not influenced by genotype, but undertreatment and use of dexamethasone or prednisone were associated with higher QoL.