scholarly journals The Impact of an Acute Vaso-Occlusive Crisis on Patient Reported Outcomes: The Magic Study

Blood ◽  
2014 ◽  
Vol 124 (21) ◽  
pp. 441-441 ◽  
Author(s):  
Julie A. Panepinto ◽  
Lauren M Beverung ◽  
T Charles Casper ◽  
Larry J. Cook ◽  
David C Brousseau
Keyword(s):  
Multivariate Analysis ◽  
Steady State ◽  
Disease Severity ◽  
Post Discharge ◽  
Hrql Score ◽  
Hospital Site ◽  
Patient Reported ◽  
The Mean ◽  
The Impact ◽  
Over Time

Abstract Acute vaso-occlusive crises (VOC) are the most common complication in sickle cell disease (SCD) and frequently result in hospitalization. The impact of an acute VOC on patient reported outcomes (PROs) over time is not known. It is necessary to describe the patterns of change over time of these outcomes for future interventions that aim to optimize PROs. The objective of this study was to determine the impact over time of an acute VOC on the health-related quality of life (HRQL-a specific type of PRO) of children with SCD. A multi-center prospective trial was conducted within the setting of a randomized controlled trial (the Magnesium in Crisis or MAGiC trial) that recruited from eight United States Children’s hospitals. Eligibility criteria included children ages 5 to 21 years with hemoglobin SS disease or β0thalassemia who were admitted to the hospital for a VOC and required intravenous administration of opioids. The children were asked to complete the PedsQL SCD and Fatigue HRQL modules at four time points (T0= at time of admission to hospital, T1= 48 hours from admission, T2= approximately 7 days post discharge, T3= steady state – complete resolution of the acute event, one month or more from discharge). The primary outcomes were the SCD and Fatigue Total HRQL scores. Secondary analyses examined specific HRQL domain scores. HRQL scores range from 0-100 with higher scores representing better HRQL. HRQL scores of 60-80 represent intermediate functioning. Descriptive statistics including t-tests for paired differences in scores were performed and a multivariate analysis using a linear mixed effects model was used to determine significant differences. The following covariates were included in the model: hospital site, age, gender, hydroxyurea use, disease severity (ever had acute chest syndrome and/or hospitalized for 3 or more VOC in the prior 3 years), and steady state HRQL score. A total of 204 children participated in the trial. The mean age was 13.6 years and 51% were female. The mean SCD total HRQL scores over time were as follows: T0=48.5, T1=48.5, T2=59.5, and T3=60. The mean Fatigue HRQL total scores over time were as follows: T0=53.9, T1=50.8, T2=61.3, and T3=62.0. In the multivariate analysis, there was no significant change from T0 to T1 for the Total SCD HRQL score. There was a significant increase of 11.8 points (p<0.01) in the Total SCD HRQL score at T2. The same pattern was seen for the Total Fatigue HRQL scores with no significant change from T0 to T1 and an increase of 7.9 points (p<0.01) in the score at T2. Those with higher steady state (T3) HRQL scores had higher HRQL scores during crisis. None of the remaining covariates, hospital site, age ,gender hydroxyurea use, and disease severity were associated with significant differences in HRQL scores over time. In the multivariate analysis of the specific HRQL SCD domain scores, there was significant improvement in 8 of the 9 HRQL domains. The greatest improvement in scores (parameter estimates) were noted in the pain and hurt (16.9), pain impact (15.3), and pain management (13.4) domains, p<0.01. The only domain where significant improvement was not noted was the Communication I domain (3.4). There was significant improvement in scores in all of the specific Fatigue HRQL domains, the General Fatigue (9.3) and Sleep/Rest Fatigue (9.6), and Cognitive Fatigue domains (5.0), p<0.01. This prospective study demonstrates that children with SCD have significantly lower HRQL at presentation of an acute VOC that improves by nearly 12 points one week post discharge. This is maintained at the steady state visit. The rate of change is not affected by hospital site, age, gender, hydroxyurea use, and disease severity. These findings provide the necessary data to tailor future interventions that aim to optimize HRQL for these patients. Disclosures No relevant conflicts of interest to declare.

scholarly journals Quality of life assessments in clinical practice using either the EORTC-QLQ-C30 or the SEIOQL-DW: a randomized study

2021 ◽  
Vol 5 (1) ◽  
Author(s):  
Åsa Kettis ◽  
Hanna Fagerlind ◽  
Jan-Erik Frödin ◽  
Bengt Glimelius ◽  
Lena Ring
Keyword(s):  
Quality Of Life ◽  
Clinical Practice ◽  
Significant Difference ◽  
Patient Reported ◽  
Health Related Qol ◽  
Health Related ◽  
Secondary Outcomes ◽  
The Impact ◽  
Over Time

Abstract Background Effective patient-physician communication can improve patient understanding, agreement on treatment and adherence. This may, in turn, impact on clinical outcomes and patient quality of life (QoL). One way to improve communication is by using patient-reported outcome measures (PROMs). Heretofore, studies of the impact of using PROMs in clinical practice have mostly evaluated the use of standardized PROMs. However, there is reason to believe that individualized instruments may be more appropriate for this purpose. The aim of this study is to compare the effectiveness of the standardized QoL-instrument, the European Organization for Research and Treatment of Cancer Quality of Life C-30 (EORTC-QOL-C30) and the individualized QoL instrument, the Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW), in clinical practice. Methods In a prospective, open-label, controlled intervention study at two hospital out-patient clinics, 390 patients with gastrointestinal cancer were randomly assigned either to complete the EORTC-QOL-C30 or the SEIQoL-DW immediately before the consultation, with their responses being shared with their physician. This was repeated in 3–5 consultations over a period of 4–6 months. The primary outcome measure was patients’ health-related QoL, as measured by FACIT-G. Patients’ satisfaction with the consultation and survival were secondary outcomes. Results There was no significant difference between the groups with regard to study outcomes. Neither intervention instrument resulted in any significant changes in health-related QoL, or in any of the secondary outcomes, over time. This may reflect either a genuine lack of effect or sub-optimization of the intervention. Since there was no comparison to standard care an effect in terms of lack of deterioration over time cannot be excluded. Conclusions Future studies should focus on the implementation process, including the training of physicians to use the instruments and their motivation for doing so. The effects of situational use of standardized or individualized instruments should also be explored. The effectiveness of the different approaches may depend on contextual factors including physician and patient preferences.

The underrepresentation of female participants in studies assessing the impact of high-dose exercise on cardiovascular outcomes: a scoping review

2021 ◽  
Vol 28 (Supplement_1) ◽  
Author(s):  
S Pallikadavath ◽  
R Patel ◽  
CL Kemp ◽  
M Hafejee ◽  
N Peckham ◽  
...  
Keyword(s):  
Scoping Review ◽  
High Volume ◽  
Cardiovascular Outcomes ◽  
High Dose ◽  
Funding Sources ◽  
Review Protocol ◽  
The Mean ◽  
The Impact ◽  
Over Time ◽  
Funding Acknowledgements

Abstract Funding Acknowledgements Type of funding sources: None. Introduction Cardiovascular adaptations as a result of exercise conducted at high-intensity and high-volume are often termed the ‘Athlete’s heart’. Studies have shown that these cardiovascular adaptations vary between sexes. It is important that both sexes are well represented in this literature. However, many studies assessing the impact of high-dose exercise on cardiovascular outcomes under-recruit female participants. Purpose This scoping review aimed to evaluate the representation of females in studies assessing the impact of high-dose exercise on cardiovascular outcomes and demonstrate how this has changed over time. Methods The scoping review protocol as outlined by Arksey and O’Malley was used. OVID and EMBASE databases were searched and studies independently reviewed by two reviewers. Studies must have investigated the effects of high-dose exercise on cardiovascular outcomes. To assess how the recruitment of females has changed over time, two methods were used. One, the median study date was used to categorise studies into two groups. Two, studies were divided into deciles to form ten equal groups over the study period. Mean percentage of female recruitment and percentage of studies that failed to include females were calculated. Results Overall, 250 studies were included. Over half the studies (50.8%, n = 127) did not include female participants. Only 3.2% (n = 8) did not include male participants. Overall, mean percentage recruitment was 18.2%. The mean percentage of recruitment was 14.5% before 2011 and 21.8% after 2011. The most recent decile of studies demonstrated the highest mean percentage of female recruitment (29.3%) and lowest number of studies that did not include female participants (26.9%). Conclusion Female participants are significantly underrepresented in studies assessing cardiovascular outcomes caused by high-dose exercise. The most recent studies show that female recruitment may be improving, however, this still falls significantly short for equal representation. Risk factors, progression and management of cardiovascular diseases vary between sexes, hence, translating findings from male dominated data is not appropriate. Future investigators should aim to establish barriers and strategies to optimise fair recruitment. Mean percentage females recruited per study (%) Percentage studies that do not include women (%) Overall (n = 250) 18.2 50.8 (n = 127) Studies before 2011 (n = 121) 14.5 59.5 (n = 72) Studies after 2011 (n = 129) 21.8 42.6 (n = 55) Table 1: Female recruitment characteristics. The year 2011 (median study year) was chosen as this divides all included studies into two equal groups.

T3 Are Burns a Chronic Condition: Examining Physical and Mental Functioning up to 20 Years After Injury

2021 ◽  
Vol 42 (Supplement_1) ◽  
pp. S2-S3
Author(s):  
Callie Abouzeid ◽  
Audrey E Wolfe ◽  
Gretchen J Carrougher ◽  
Nicole S Gibran ◽  
Radha K Holavanahalli ◽  
...  
Keyword(s):  
Mental Health ◽  
Hospital Stay ◽  
National Database ◽  
Time Points ◽  
Patient Reported ◽  
Burn Survivors ◽  
Population Demographic ◽  
The Impact ◽  
Over Time

Abstract Introduction Burn survivors often face many long-term physical and psychological symptoms associated with their injury. To date, however, few studies have examined the impact of burn injuries on quality of life beyond 2 years post-injury. The purpose of this study is to examine the physical and mental well-being of burn survivors up to 20 years after injury. Methods Data from the Burn Model System National Database (1997–2020) were analyzed. Patient-reported outcome measures were collected at discharge with a recall of preinjury status, and then at 5, 10, 15, and 20 years after injury. Outcomes examined were the Physical Component Summary (PCS) and Mental Component Summary (MCS) of the Short Form-12. Trajectories were developed using linear mixed methods model with repeated measures of PCS and MCS scores over time and controlling for demographic and clinical variables. The model fitted score trajectory was generated with 95% confidence intervals to demonstrate score changes over time and associations with covariates. Results The study population included 420 adult burn survivors with a mean age of 42.4 years. The population was mainly male (66%) and white (76.4%) with a mean burn size of 21.5% and length of hospital stay of 31.3 days. Higher PCS scores were associated with follow-up time points closer to injury, shorter hospital stay, and younger age. Similarly, higher MCS scores were associated with earlier follow-up time points, shorter hospital stay, female gender, and non-perineal burns. MCS trajectories are demonstrated in the Figure. Conclusions Burn survivors’ physical and mental health worsened over time. Such a trend is different from previous reported results for mental health in the general population. Demographic and clinical predictors of recovery over time are identified.

scholarly journals Interpreter proxy versus healthcare interpreter for administration of patient surveys following arthroplasty: a pilot study

2019 ◽  
Author(s):  
Daniel Xue ◽  
Timothy Churches ◽  
Elizabeth Armstrong ◽  
Rajat Mittal ◽  
Justine M. Naylor ◽  
...  
Keyword(s):  
Limited English Proficiency ◽  
Surgical Complication ◽  
Intraclass Correlation ◽  
Cost Effective ◽  
Post Discharge ◽  
Patient Reported ◽  
Reported Health ◽  
The Mean ◽  
First Interview ◽  
Score Range

Abstract Purpose: Clinical quality registries and other systems that conduct routine post-discharge surveillance of patient outcomes following surgery may have difficulty surveying patients who have limited proficiency in the language of the healthcare provider. Interpreter proxies (family and carers) are often used due to limited access to certified healthcare interpreters (due to cost or availability). The aim of this study was to assess the reliability of engaging interpreter proxies compared with certified healthcare interpreters for the administration of patient-reported health-related surveys for people with limited English proficiency (LEP). Methods: People with LEP and due for a routine 6-month telephone follow-up post knee or hip arthroplasty were invited to participate. Participants were randomly allocated to having their first interview with an interpreter proxy or a certified healthcare interpreter followed by the second (crossover) interview within 2 weeks (range: 4 to 12 days) after the first interview using the alternative method. Agreement between the two methods was assessed using quadratic weighted Cohen's kappa, intraclass correlation and concordance correlation co-efficient where appropriate for EQ-5D health domains, total Oxford hip and knee scores, patient satisfaction, operation success, readmission, reoperation, and post-surgical complication responses. The mean of the differences between the same data items collected by each of the two methods was also calculated. Results: 85 participants (96%) completed the study. There was substantial to excellent inter-rater agreement (kappa=0.69-0.87 and ICCs above 0.74) for all but one measure. The mean differences between family proxy and healthcare interpreter scores for each participant were small, ranging from 0.01 (score range of 1-5) to 0.72 (score range of 0-100). Conclusion: These results suggest that using interpreter proxies is a reliable alternative to certified healthcare interpreters in conducting patient-reported health surveys, potentially making this process easier and cost effective for researchers and registries.

Disturbed Appetite Patterns and Nutrient Intake in Peritoneal Dialysis Patients

2003 ◽  
Vol 23 (6) ◽  
pp. 550-556 ◽  
Author(s):  
Mark Wright ◽  
Graham Woodrow ◽  
Siobahn O'Brien ◽  
Neil King ◽  
Louise Dye ◽  
...  
Keyword(s):  
Peritoneal Dialysis ◽  
Food Intake ◽  
Nutrient Intake ◽  
Cross Sectional ◽  
Dialysis Unit ◽  
Diurnal Variability ◽  
Patient Reported ◽  
Dietary Records ◽  
The Mean ◽  
The Impact

Objective Malnutrition is common among peritoneal dialysis (PD) patients. Reduced nutrient intake contributes to this. It has long been assumed that this reflects disturbed appetite. We set out to define the appetite profiles of a group of PD patients using a novel technique. Design Prospective, cross-sectional comparison of PD patients versus controls. Setting Teaching hospital dialysis unit. Patients 39 PD patients and 42 healthy controls. Intervention Visual analog ratings were recorded at hourly intervals to generate daily profiles for hunger and fullness. Summary statistics were generated to compare the groups. Food intake was measured using 3-day dietary records. Main Outcome Measures Hunger and fullness profiles. Derived hunger and fullness scores. Results Controls demonstrated peaks of hunger before mealtimes, with fullness scores peaking after meals. The PD profiles had much reduced premeal hunger peaks. A postmeal reduction in hunger was evident, but the rest of the trace was flat. The PD fullness profile was also flatter than in the controls. Mean scores were similar despite the marked discrepancy in the profiles. The PD group had lower peak hunger and less diurnal variability in their hunger scores. They also demonstrated much less change in fullness rating around mealtimes, while the mean and peak fullness scores were little different. The reported nutrient intake was significantly lower for PD. Conclusion The data suggest that PD patients normalize their mean appetite perception at a lower level of nutrient intake than controls, suggesting that patient-reported appetite may be misleading in clinical practice. There is a loss of the usual daily variation for the PD group, which may contribute to their reduced food intake. The technique described here could be used to assess the impact of interventions upon the abnormal PD appetite profile.

Application of Computerized Adaptive Testing to the Foot and Ankle Ability Measure

2020 ◽  
pp. 107110072097266
Author(s):  
Joseph T. O’Neil ◽  
Otho R. Plummer ◽  
Steven M. Raikin
Keyword(s):  
Computerized Adaptive Testing ◽  
Case Series ◽  
Adaptive Testing ◽  
Mean Difference ◽  
Foot And Ankle ◽  
Level Of Evidence ◽  
Patient Reported ◽  
The Mean ◽  
Ability Measure ◽  
The Impact

Background: Patient-reported outcome measures are an increasingly important tool for assessing the impact of treatments orthopedic surgeons render. Despite their importance, they can present a burden. We examined the validity and utility of a computerized adaptive testing (CAT) method to reduce the number of questions on the Foot and Ankle Ability Measure (FAAM), a validated anatomy-specific outcome measure. Methods: A previously developed FAAM CAT system was applied to the responses of patients undergoing foot and ankle evaluation and treatment over a 3-year period (2017-2019). A total of 15 902 responses for the Activities of Daily Living (ADL) subscale and a total of 14 344 responses for the Sports subscale were analyzed. The accuracy of the CAT to replicate the full-form score was assessed. Results: The CAT system required 11 questions to be answered for the ADL subscale in 85.1% of cases (range, 11-12). The number of questions answered on the Sports subscale was 6 (range, 5-6) in 66.4% of cases. The mean difference between the full FAAM ADL subscale and CAT was 0.63 of a point. The mean difference between the FAAM Sports subscale and CAT was 0.65 of a point. Conclusion: The FAAM CAT was able to reduce the number of responses a patient would need to answer by nearly 50%, while still providing a valid outcome score. This measure can therefore be directly correlated with previously obtained full FAAM scores in addition to providing a foot/ankle-specific measure, which previously reported CAT systems are not able to do. Level of Evidence: Level IV, case series.

scholarly journals The Impact of ART on the Economic Outcomes of People Living with HIV/AIDS

2013 ◽  
Vol 2013 ◽  
pp. 1-7 ◽  
Author(s):  
Annet Nannungi ◽  
Glenn Wagner ◽  
Bonnie Ghosh-Dastidar
Keyword(s):  
Multivariate Analysis ◽  
Physical Health ◽  
Economic Outcomes ◽  
Sub Saharan Africa ◽  
Hiv Care ◽  
Work Status ◽  
People Living With Hiv ◽  
Health Functioning ◽  
The Impact ◽  
Over Time

Background. Clinical benefits of ART are well documented, but less is known about its effects on economic outcomes such as work status and income in sub-Saharan Africa.Methods. Data were examined from 482 adult clients entering HIV care (257 starting ART; 225 not yet eligible for ART) in Kampala, Uganda. Self-reported data on work status and income were assessed at baseline, months 6 and 12. Multivariate analysis examined the effects of ART over time, controlling for change in physical health functioning and baseline covariates.Results. Fewer ART patients worked at baseline compared to non-ART patients (25.5% versus 34.2%); 48.8% of those not working at baseline were now working at month 6, and 50% at month 12, with similar improvement in both the ART and non-ART groups. However, multivariate analysis revealed that the ART group experienced greater improvement over time. Average weekly income did not differ between the groups at baseline nor change significantly over time, among those who were working; being male gender and having any secondary education were predictive of higher income.Conclusions. ART was associated with greater improvement in work status, even after controlling for change in physical health functioning, suggesting other factors associated with ART may influence work.

Association of Touch Avoidance with Disease Severity and Quality of Life in Psoriasis Patients

2017 ◽  
Vol 2 (3) ◽  
pp. 57-63 ◽  
Author(s):  
April W. Armstrong ◽  
Jennifer C. Cather ◽  
Carle F. Paul ◽  
Emily Edson-Heredia ◽  
Baojin Zhu ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Disease Severity ◽  
Linear Models ◽  
Logistic Models ◽  
Patient Reported Outcome Measures ◽  
Cross Sectional ◽  
Patient Reported ◽  
Touch Avoidance ◽  
The Impact

Background and Objective Previous large studies have highlighted the impact of psoriasis on health-related quality of life (HRQoL) but not on interpersonal touch. This survey assessed the prevalence of touch avoidance among psoriasis patients, and its relationship to clinical characteristics and HRQoL. Methods Using an online, cross-sectional study with a standardized questionnaire, psoriasis patients reported their level of touch avoidance. The relationships between touch avoidance, patient-reported outcome measures, and patient demographics were analyzed using linear models for continuous outcomes and logistic models for categorical outcomes. Results Touch avoidance was reported by 48.2% of participants. Higher levels of touch avoidance were associated with worse HRQoL, depression, and itch outcomes (p<.001 for all). The strongest indicators of touch avoidance were HRQoL score (p<.001) and depression score (p<.001). Conclusion Nearly half of psoriasis patients report avoidance of touch. Those who had worse disease severity, HRQoL, and depression reported higher levels of touch avoidance.

scholarly journals Statistical cures and other fallacies

2012 ◽  
Vol 18 (4) ◽  
pp. 387-390 ◽  
Author(s):  
Gary R Cutter
Keyword(s):  
Wishful Thinking ◽  
Percentage Change ◽  
Regression To The Mean ◽  
The Common ◽  
The Mean ◽  
Regression Towards The Mean ◽  
The Impact ◽  
Relapse Rates ◽  
Over Time

Relapse rates and thus the impact of therapies have been decreasing. Why they decline and the impact on our ability to understand which treatments are better require more than simple math. The objective of this review is to discuss the impact of regression to the mean, changes in outcome effects and how we compare outcomes over time and among studies. This paper provides discourse on the topics of regression to the mean, some examples of the pitfalls of changes and some difficulties in the interpretation of the common percentage change in outcomes. The results show that we can often be deceived by what we think we see and they also demonstrate how such confusion evolves in the literature. This article aims to caution against the over-interpretation of changes from baseline, which are helped along by regression towards the mean and other factors. Furthermore, how we interpret changes from baseline requires care and not wishful thinking, coupled with careful digestion of seemingly reasonable explications of results.

scholarly journals Substance Use Among Patients Receiving Out- and Inpatient Dependence Care: a Prospective Norwegian Cohort Study From 2016 to 2020

2021 ◽  
Author(s):  
Jørn Henrik Vold ◽  
Fatemeh Chalabianloo ◽  
Christer F. Aas ◽  
Else-Marie Løberg ◽  
Kjell Arne Johansson ◽  
...  
Keyword(s):  
Substance Use ◽  
Mixed Model ◽  
Linear Mixed Model ◽  
Severity Index ◽  
Future Research ◽  
Opioid Agonist ◽  
Low Threshold ◽  
The Mean ◽  
The Impact ◽  
Over Time

Abstract BackgroundContinuous use of amphetamines, alcohol, benzodiazepines, cannabis, cocaine, or opioids contributes to health impairments, increased morbidity, and overdose deaths among patients with substance use disorders (SUDs). This study evaluates the impact of inpatient detoxification, specialized opioid agonist therapy (OAT), and low-threshold municipality care on substance use over time. MethodsWe used data from a cohort of SUD patients in Norway through health assessments of self-reported substance use and sociodemographic and clinical factors. A total of 881 substance use measurements, including type and amount of substances, were assessed from 708 SUD patients in 2016-2020. Substance use for individual and total substances was calculated, creating a substance use severity index (SUSI) ranging from zero (no use) to one (daily use). We defined baseline as the first substance use measurement when the measurements were listed chronologically. Time was defined as years from baseline. We used a linear mixed model to analyze associations between the SUSI and inpatient detoxification, specialized OAT compared with low-threshold municipality care, as well as the factors like injecting substance use, gender, and age, presented with coefficients and 95% confidence intervals (CI).ResultsNeither inpatient detoxification (mean SUSI change: 0.01, -0.03;0.04) nor specialized OAT (0.03, -0.09;0.14) compared with low-threshold municipality care were associated with changes in substance use over time. Patients who were over 60 years of age (mean SUSI difference: -0.06, -0.13;0.00) had a lower SUSI than those under 30 years of age, while patients who injected substances had a higher SUSI than those who did not inject substances (0.18, 0.15;0.20) at baseline. The mean SUSI for the individual substances were 0.50 (standard deviation (SD): 0.38) for cannabis, 0.40 (0.37) for benzodiazepines, 0.33 (0.34) for amphetamines and cocaine, 0.31 (0.29) for alcohol, and 0.22 (0.31) for opioids at baseline. The mean SUSI of all substances was 0.35 (0.20). Conclusion The present study demonstrates that neither inpatient detoxification nor specialized OAT compared to low-threshold municipality care were associated with changes in substance use over time. Future research needs to evaluate the impact on substance use and healthy survival of multiple health care interventions to this patient group.

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