Abstract
OBJECTIVES: Leukoencephalopathy (LEP, i.e. white matter T2-/FLAIR-hyperintensities on MRI) and impaired neuropsychological outcome are side effects of multimodal therapy of medulloblastoma. ...We identified risk factors for LEP and correlated LEP with neurocognitive functioning. PATIENTS AND METHODS: Severity of LEP either at the end of therapy (n=118), two years (n=126), or five years after surgery (n=139) was evaluated according to an adapted Fazekas classification for 162 survivors of medulloblastoma (median age: 7.4 years range:0.67-19.8 years). Severity of LEP two or five years after surgery was correlated with treatment and neurocognitive functioning ≥ five years after diagnosis using univariate analyses and multivariate generalized mixed linear models. RESULTS: Two and five years after surgery, incidences of mild/moderate/severe LEP were 21.4%/17.5%/9.5%, and 24.5%/23.7%/8.6%, respectively. Data on severity of LEP both at the end of therapy and five years after surgery was available for 103 patients: LEP grades increased for 1/2 degrees in 18/4 patients and decreased in 13/1 patients, respectively. Both treatment approaches - HIT-SKK chemotherapy including intraventricular methotrexate (SKK) and craniospinal irradiation (CSI) - were associated with increased severity of LEP (CSI+SKK > SKK only > CSI only; p<0.001). Severe LEP only occurred in patients treated with both CSI and SKK. In total 19% of all patients treated with this combination developed severe LEP. Severe LEP correlated with impaired fluid (p=0.013) and crystalline (p=0.012) intelligence and short-term memory (p=0.024) on both univariate level and in multivariate mixed linear models. Among patients treated with CSI doses >30Gy, severe LEP, but not SKK including intraventricular MTX, correlated with impaired neurocognitive functioning. CONCLUSION: After therapy strong changes in LEP rarely occurred. Severe LEP was associated both with the combination of SKK and CSI, and impaired neurocognitive functioning. Further research will be needed to weigh potential benefits of SKK including intraventricular methotrexate with CSI against its neurotoxicity.
Abstract
PURPOSE: Children treated for medulloblastoma (MB) undergo intensive multimodality treatment compromising surgery, irradiation, and chemotherapy, which is associated with a significant risk ...of neurocognitive deficits. Successive multicenter frontline treatment protocols have introduced reduced posterior fossa boost margins for cranial irradiation for sparing collateral tissue and preserving function. This study examines neurocognitive outcomes in the setting of reduced primary site target volume margins in children treated for MB. PATIENTS & METHODS: Prospective longitudinal neurocognitive data were collected from newly diagnosed patients with MB (n = 372, ages 3-21 years) enrolled on one of two sequential multicenter clinical protocols between 1996 and 2012. The treatment regimen included surgery, risk-adapted craniospinal irradiation with a posterior fossa boost with restricted clinical target volume (CTV) margins (2 cm and 1 cm), and dose-intensive chemotherapy. Comparative analysis of neurocognitive outcomes was performed using linear mixed-effects models. RESULTS: Intelligence quotient (IQ) scores were better preserved in average-risk patients who received treatment using a clinical target volume with a lesser margin of 1 cm (p < 0.0099). Findings were consistent with prior studies on measures of academics including reading performance, mathematical reasoning, and spelling across both risk groups regardless of CTV. CONCLUSION: This study presents compelling evidence in favor of restricted CTVs for preserving IQ without sacrificing treatment efficacy in average childhood MBs.
Purpose
Supporting the capture and use of patient-reported outcomes (PROs) at the point-of-care enriches information about important clinical and quality of life outcomes. Yet the ability to scale ...PROs across healthcare systems has been limited by knowledge gaps around how to manage the diversity of PRO uses and leverage health information technology. In this study, we report learnings and practice insights from UW Medicine’s practice transformation efforts to incorporate patient voice into multiple areas of care.
Methods
Using a participatory, action research approach, we engaged with UW Medicine clinical and administrative stakeholders experienced with PRO implementation to inventory PRO implementations across the health system, characterize common clinical uses for PROs, and develop recommendations for system-wide governance and implementation of PROs.
Results
We identified a wide breadth of PRO implementations (
n
= 14) in practice and found that nearly half (47%) of employed PRO measures captured shared clinical domains (e.g., depression). We developed three vignettes (use cases) that illustrate how users interact with PROs, characterize common ways PRO implementations support clinical care across the health system (1)
Preventive care,
(2)
Chronic/Specialty care
, and (3)
Surgical/Interventional care)
, and elucidate opportunities to enhance efficient PRO implementations through system-level standards and governance.
Conclusions
Practice transformation efforts increasingly require integration of the patient voice into clinical care, often through the use of PROs. Learnings from our work highlight the importance of proactively considering how PROs will be used across the layers of healthcare organizations to optimize the design and governance of PROs.
Background
It is important to understand the interaction of various predictors with oral health‐related quality of life (OHRQoL) to better design effective interventions to improve OHRQoL.
Aim
The ...aim of this study was to develop and validate a conceptual model evaluating the factors affecting the OHRQoL in children.
Design
The study group consisted of 754 parent‐child dyads. The data collection tools were a socio‐demographic data form, the Early Childhood Oral Health Impact Scale (ECOHIS), Corah Dental Anxiety Scale (C‐DAS), Children's Fear Survey Schedule‐Dental Subscale (CFSS‐DS), and an oral and dental health examination form. A conceptual model was developed to examine the factors affecting OHRQoL in children consisting of four endogenous and four exogenous variables. Path analysis was used to test the compatibility of the conceptual model.
Results
OHRQoL was associated with parental socio‐economic status (β = −0.12; P < .001), dental anxiety (β = −0.15; P < .001), and oral health behaviours (β = −0.13; P < .001). Although parental dental anxiety had the strongest direct effect on OHRQoL, children's oral health behaviours had the strongest indirect effect.
Conclusions
This study revealed a valid demonstrable path of association between parental socio‐economic status, dental anxiety, childhood dental anxiety, oral health behaviours, and OHRQoL.
Purpose
The EQ-5D-3L and 5L are widely used generic preference-based instruments, which are psychometrically sound with the general population, but little is known about the instruments’ feasibility ...in the elderly. Therefore, this systematic review summarises the available literature with regard to the feasibility properties of the instruments in the elderly population.
Methods
We conducted a systematic search in PubMed, PsycInfo and EuroQol databases using pre-specified vocabulary and inclusion/exclusion criteria to identify publications until November 2020. Study characteristics and outcomes referring to the feasibility of the EQ-5D-3L and 5L in the elderly were extracted, if all study participants were at least 65+ years.
Results
We identified 17 studies reporting feasibility outcomes based on four criteria: missing values, completion rates, completion time and broad qualitative statements referring to the completion. Missing values per dimension ranged from 0 to 10.7%, although being mostly below 7%. The completion rate was around 90% or better, whereas the EQ VAS rating was missing from 2.3 to 25.3% of the respondents. Only two of the included studies examined the EQ-5D-5L; 15 studies reported on the EQ-5D-3L.
Conclusion
Comparing our findings against the general population from published literature, we find that feasibility outcomes in older age groups are just below that of younger populations. Furthermore, older respondents have a higher propensity of requiring assistance or even an interviewer-based approach. Nonetheless, the reviewed literature indicates that the EQ-5D-3L still has good feasibility properties and, hence, is highly applicable in older respondents. However, further research is needed to explore feasibility properties of the EQ-5D-5L in this population.
Aims
This study systematically reviews the literature regarding preoperative stoma site marking and discusses the effectiveness of the procedure on complication rates, self‐care deficits and ...health‐related quality of life (HRQOL).
Design
Systematic review and meta‐analysis.
Data source
Our review was conducted following the PRISMA guidelines. PubMed, EMBASE, Cochrane and CINAHL databases were searched to obtain articles published in English. Articles were also retrieved from Korean databases as well. Our last search was conducted on 2 June 2019.
Review methods
Two reviewers independently selected relevant studies, evaluated their methodological quality and extracted data. Experimental and observational studies were included. Our main focus was on complication rates, self‐care deficits and HRQOL. We conducted meta‐analysis using the statistical software spss 25.0 and Stata 13.0.
Results
Of the 1,039 articles reviewed, 20 were included for review, and 19 were used for quantitative synthesis. Preoperative stoma site marking reduced complication rates (odds ratio OR: 0.47; 95% confidence interval CI: 0.36–0.62; I2: 70.6%), lowered self‐care deficits (OR: 0.34; 95% CI: 0.18–0.64; I2: 0%), and increased HRQOL (standardized mean difference, 1.05; 95% CI: 0.70–1.40; I2: 0%). Quality appraisal results for both the individual studies and the studies overall were excellent. The possibility of publication bias was low.
Conclusions
Our findings indicate that preoperative stoma site marking improves patient outcomes: stoma‐related complication rates and self‐care deficits decrease and HRQOL rises. For this reason, preoperative stoma site marking should be a mandatory procedure in clinical settings. The practice should also be supported by policymakers and healthcare expert associations.
Impact
Preoperative stoma site marking reduces overall complication rates by 53% and skin problems by 59%. Preoperative stoma site marking also improves self‐care and health‐related quality of life. We recommend that preoperative stoma site marking should be a mandatory procedure in clinical settings.
Objective: Parkinson's disease (PD) has a negative impact on health-related quality of life (HRQoL). Previous studies have shown that participating in group singing activities can improve quality of ...life in some patient populations (e.g., people with chronic mental health or neurological conditions). The aim of this study was to investigate the effects of group singing on HRQoL for people diagnosed with PD. Method: Eleven participants (mean age 70.6 years) with a formal diagnosis of PD between Hoehn and Yahr Stages I-III were recruited from a community singing group for people with PD, their family and their carers. Participants' perceptions of the effect of group singing on their quality of life were captured in a semistructured interview. Interpretive Phenomenological Analysis (IPA), a qualitative methodology, informed data collection and analysis. Results: The IPA analysis revealed 6 categories that characterized the effects of group singing: physical, mood, cognitive functioning, social connectedness, "flow-on" effects, and sense-of-self. All participants reported positive effects across at least 4 of these categories. Three participants reported a negative effect in 1 category (physical, mood, or sense-of-self). Conclusions: The results suggest that group singing improved HRQoL with all participants reporting positive effects regardless of PD stage or symptom severity. Weekly engagement in group singing resulted in multiple benefits for the participants and counteracted some of the negative effects of PD. These findings suggest that group singing "gives back" some of what PD "takes away."
Objectives
This study aims to evaluate the effects of socioeconomic, behavioral, and psychological factors on oral health status and oral health‐related quality of life in Myanmar adults.
Methods
...Data were from a convenience sample of Myanmar adults who are from a township health center in Yangon city. Face‐to‐face interviews using a paper‐based questionnaire in the Myanmar language and clinical oral examinations were performed at the health center. Mann–Whitney U test and linear regressions were used to assess the association of socio‐demographic, behavioral, and psychological variables with oral health outcomes.
Results
In socio‐demographic variables, significant associations were observed in individual income with periodontal pocket and OHIP‐14, and history of COVID‐19 infection with OHIP‐14. However, there were no associations between behavioral factors and oral health outcomes. After adjustment for sex, age, educational level, and individual income, the depression subscale was statistically significant with the number of present teeth, decayed teeth, decayed, missing, and filled teeth, and OHIP‐14. The anxiety subscale remained significant with periodontal pocket, but no stress subscale was associated with oral health outcomes.
Conclusion
The experiences of oral health status were high, and the oral health‐related quality of life was unfavorable in Myanmar adults. A large proportion of them suffers from psychological distress. Additionally, individuals with lower income and who experienced a history of COVID‐19 infection were susceptible to poor oral health‐related quality of life. Psychological distress indicates a higher risk for oral health problems in Myanmar adults.
Introduction: Recurrent Clostridium difficile infection (rCDI) is an urgent public health threat that is associated with significant mortality, substantial medical costs, and decreased quality of ...life. Microbiota therapy is gaining acceptance to prevent rCDI in multi-recurrent patients. RBX2660, a standardized microbiome-based therapeutic, was previously reported to show efficacy in rCDI prevention in a ran-domized, double-blind, placebo-controlled Phase 2B clinical study (PUNCH CD2). Herein, we evaluated this Phase 2B study data to determine how quality of life (QoL) assessment was associated with RBX2660 treatment. Methods: Subjects enrolled in the double-blinded, placebo-controlled multi-center Phase 2B clinical study were randomized to receive either 2 RBX2660 doses (Group A), 2 placebo doses (Group B) or 1 RBX2660 dose + 1 placebo dose (Group C) via enema, with doses delivered 7 days apart. Enrolled subjects had >2 prior rCDI or >2 prior CDI episodes requiring hospitalization. The primary efficacy endpoint was absence of CDI at 8 weeks from the last dose. The validated SF-36 was used to identify changes to health-related QoL following study treatment. QoL was assessed at Baseline and at weeks 1, 4 and 8 following blinded treatment, and were compared within and across treatments using unpaired t-test. Each component is analyzed on a 0-100 scale with a higher score representing an increase to QoL. Results: The Baseline results for the mean Physical Component Score (PCS) and Mental Component Score (MCS) were comparable across arms, and there were no statistically significant differences at base-line between subjects who later responded to treatment and those who did not. By week 1, statistically significant and clinically important differences were noted for the MCS within each group compared to Baseline scores and were maintained through 8 weeks. Overall, both the mean PCS and MCS improved after treatment across all groups. There were no significant differences identified between treatment groups. Conclusion: The similarity among Baseline SF-36 QoL scores confirms a uniform population among treatment groups. The statistically significant SF-36 increase after treatment underscores the potential QoL benefit for preventing rCDI, even as early as one week after treatment. Larger studies will be needed to confirm these results and to detect a significant difference in QoL scores between RBX2660- and placebo-treated participants.
This study aimed to assess the health‐related quality of life and identify its associated factors in women with endometriosis. A cross‐sectional correlation study design and convenience sampling were ...conducted in the gynecological outpatient clinic of a teaching hospital in northern Taiwan. A total of 216 women with endometriosis were recruited. The data were collected using structured questionnaires and analyzed using descriptive and inferential statistics. Participants reported a moderate level of health‐related quality of life. The most significant impact of endometriosis on health‐related quality of life was emotional well‐being, followed by feeling of control or powerless, pain, social support, and self‐image. Educational attainment, menstrual cycle, period length, perceived menstrual flow, symptom distress, and self‐management strategies explained 66% of the variance in health‐related quality of life. Factors influencing health‐related quality of life in women with endometriosis play a key role in promoting women's well‐being. Interventions based on these related factors should be developed and taken into practice to effectively manage the disease‐related symptoms for women with endometriosis and thereby improve their overall health‐related quality of life.
PDF
