Pneumonectomy: Post-operative quality of life and lung function

To assess the impact of delay in emergency department (ED) on outcome of critically ill patients admitted to the medical intensive care unit (MICU). Outcome was defined as hospital mortality and as health-related quality of life (HRQoL) at 6 months after intensive care assessed by the 15D measure. The 15D is a generic, 15-dimensional, standardized measure of HRQoL. We hypothesized that prolonged stay in the ED is related to worse outcome. A prospective follow-up cohort study in university hospital. All consecutive 1675 patients admitted to the MICU between July 2002 and June 2004. The 15D questionnaire was mailed to all patients alive at 6 months after admission. Of all MICU patients, 64% were admitted from ED. The mean length of stay in the ED was 6.2 h (95%CI 5.9-6.5 h). The hospital mortality rate was 24.4% (20.0% in the ED vs. 33.0% in the non-ED cohort, P < 0.001) and it was associated with higher age and degree of physiological derangement at admission. Neither the length of ED stay was associated with hospital mortality (P = 0.82) nor with HRQoL at 6 months after MICU admission (P = 0.34). Altogether, HRQoL at 6 months was significantly lower compared with the age- and sex-matched general population (P < 0.001). In a university hospital, the length of ED stay was not associated with the outcome of critically ill medical patients. However, we feel that the effect of ED treatment and delay on outcome and outcome prediction in the critically ill patients deserves further evaluation.

Commentary--goodbye M(C)ID! Hello MID, where do you come from?

329 Background: Health-related quality of life (HRQoL) instruments in clinic trials provide insight into the impacts a disease and therapy have on a person’s well-being. Baseline measurements of global HRQoL reflect a trial population’s quality of life at the start of a trial. It is unknown how baseline mean HRQoL values vary across trials. Our hypothesis: The HRQoL for trials populations would decrease with later lines of therapy but would not be affected by chronological time. Methods: The year the first patient was enrolled in a trial, the number of prior lines of therapy, the HRQoL instrument(s) used, and the trial’s name was recorded along with the intervention arm’s global HRQoL summary statistics (i.e., mean value, standard deviation, and number of respondents). The intervention arm (as opposed to a combination of both arms of the study) was analyzed since the HRQoL at baseline was often balanced between the two arms but baseline HRQoL summary statistics for the entire trial population was not typically available. The baseline HRQoL means were compared across trials using common HRQoL instruments via one-way ANOVA (https://statpages.info/anova1sm.html). A p-value of less than 0.05 indicated there was a significant difference in mean HRQoL values somewhere among the various groups. The Tukey honestly significantly different post-hoc test was used to evaluate which groups were significantly different from others. Results: Mean baseline HRQoL varied significantly across trials for the FKSI-19 (p &lt; 0.001) and the EQ-5D (p = 0.004) instruments. Conclusions: While HRQoL varied across trials for the FKSI-19 and the EQ-5D instruments, post-hoc tests indicated that only the FKDI-19 varied as hypothesized by line of therapy. The EQ-5D baseline HRQoL values variation correlated more by year of first participant. Future research should focus on the applicability of the EQ-5D and EQ-VAS HRQoL instruments in a modern population of patients with metastatic RCC.[Table: see text]

BackgroundPatient-reported outcome (PRO) instruments measure health gains, including changes in health-related quality of life (HRQoL). Previous studies have assessed the reliability and relationship of multiple HRQoL instruments in search of the optimal instrument for feasible measurement of PROs. Although the 15D instrument was shown to have the best sensitivity and construct validity among cardiac patients, it is unknown how well it captures relevant disease-specific information scores compared to instruments included in the International Consortium for Health Outcomes Measurement (ICHOM) standard set. The aim of this study was to investigate whether the disease-specific PRO instruments and a generic HRQoL instrument capture disease related symptoms in coronary artery disease (CAD) patients.MethodsHealth status and HRQoL were assessed with the instruments included in the ICHOM standard set: Seattle Angina Questionnaire short-form (SAQ-7), Rose Dyspnea Scale (RDS), two-item Patient Health Questionnaire (PHQ-2), and with the 15D HRQoL instrument at baseline and 1 year from the treatment in a university hospital setting. Spearman correlation and explanatory factor analysis were used to assess the relationship of baseline scores and 1-year change in scores of 297 patients.ResultsAt baseline, the overall 15D score and SAQ-physical limitation (SAQ-PL), 15D “breathing” and SAQ-PL, as well as “breathing” and RDS showed moderately strong correlations. The factor interpreted to reflect “Breathing-related physical activity”, based on high loadings of “breathing”, RDS, SAQ-PL, “mobility”, “vitality”, and “usual activities”, explained 19.2% of the total variance. Correlations between 1-year changes in scores were fair. The factor of “Breathing-related physical activity”, with significant loading of RDS, SAQ-PL, “breathing, “usual activities”, “vitality”, “sexual activity”, “mobility”, and disease-specific quality of life explained 20.5% of the total variance in 1-year change in scores. The correlation of angina frequency measured by SAQ-7 and the 15D instrument was poor.ConclusionsThe 15D detects dyspnea and depression similarly to RDS and PHQ-2 but not angina similarly to the SAQ-7. This may call for supplementing the 15D instrument with a disease-specific instrument when studying CAD patients.

The objective of this study was to review and evaluate the performance of health-related quality of life (HRQL) and other health status measures used in studies of adult haemophilia and provide recommendations for future research. A systematic literature review was performed to identify HRQL and health status measures used in haemophilia. Literature was identified using medical databases, Internet and manual searches. The search was restricted to articles published in English since 1986. Ninety-six abstracts were located; 19 relevant articles were selected for detailed review. Three main types of HRQL measures were identified: generic psychometric-based HRQL (SF-36 and SF-12), utility-based HRQL [EQ-5D and Health Utilities Index (HUI)], and musculoskeletal-specific HRQL (Arthritis Impact Measurement Scale 2, AIMS 2) instruments. No patient-rated haemophilia-specific HRQL instrument was found. The SF-36, the EQ-5D, and the HUI were able to discriminate haemophilia patient subgroups with respect to disease severity and HIV comorbidity status. Sixteen additional scales were identified that were used to measure the different aspects of physical, psychological, and social functioning of patients. There were no clinical studies of haemophilia carried out that employed HRQL instruments, thus responsiveness of these instruments could not be evaluated. The variety of instruments used in haemophilia studies highlights the need for a tool that can capture the full impact of haemophilia and its treatment on patients' HRQL. Developing such a tool poses the unique challenge of accounting for common comorbidities, such as HIV and chronic hepatitis that may have a greater HRQL impact than the underlying disease.

Sickle Cell Disease Health-Related Quality of Life Questionnaire Project.

Health-related quality of life (HR-QoL) is impaired in patients with hereditary angioedema (HAE) but has not yet been satisfactorily described. To study HR-QoL in patients with HAE by combining different HR-QoL instruments with disease activity assessment. All adults in the Swedish HAE registry were invited to take part in this questionnaire study, which used the generic HR-QoL instruments, EuroQol 5 Dimensions 5 Level (EQ-5D-5L) and the RAND Corporation Short Form 36 (RAND-36), the disease-specific Angioedema Quality of Life instrument (AE-QoL), the recently introduced Angioedema Activity Score (AAS) form, and questionnaires on sick leave and prophylactic medication. Sixty-four of 133 adults (26 men, 38 women) between 18 and 91 years old responded. The most affected HR-QoL dimensions in the EQ-5D-5L were pain/discomfort and anxiety/depression; in the RAND-36, energy/fatigue, general health, pain; and, in the AE-QoL, fears/shame and fatigue/mood. Women had lower HR-QoL in the RAND-36 for general health and energy/fatigue (p < 0.05). Patients who reported any AAS of >0 had significantly impaired HR-QoL. There were significant associations (p < 0.05) between the AAS and EQ-5D-5L, between the AAS and all dimensions of the RAND-36 except physical function, and between the AAS and AE-QoL in all dimensions. Nine of 36 patients who reported sick leave during the previous 4 weeks had significantly impaired HR-QoL in all the instruments (p < 0.05). There was no significant difference in HR-QoL in the patients with and the patients without prophylactic medication, except for the nutrition dimension of the AE-QoL (p < 0.05). Comprehensive information is obtained by combining different HR-QoL instruments. Pain, anxiety/depression, and fatigue/mood are important aspects of HAE but the AE-QoL disregards pain. HR-QoL was not significantly affected by prophylaxis. Increased disease activity was associated with impaired HR-QoL, which justifies more active disease management.

Health-related quality of life (HRQoL) in German early benefit assessment: The importance of disease-specific instruments

Health-related quality of life (HRQoL) is increasingly used as an outcome parameter in haemophilia treatment. Currently, only generic HRQoL instruments are used, as disease-specific instruments for haemophilia are not available. The most widely used generic instruments are the descriptive SF-36 questionnaire and the EQ-5D questionnaire for assessment of utilities, ie preference-based HRQoL. Results of both instruments show significant correlation. All haemophilia prophylaxis studies using HRQoL as an outcome report a decreased HRQoL compared with the general population, a positive effect of prophylactic treatment and a negative effect of age. Generic instruments for measuring HRQoL are able to pick up differences between groups of patients with haemophilia and enable us to make comparisons across diseases. However, in order to establish the optimal treatment strategy for severe haemophilia, further information is needed on the long-term effects of different strategies on HRQoL. In addition, haemophilia-specific HRQoL instruments should be developed in order to provide detailed information for adjustment and evaluation of treatment in individual patients.

Measuring health-related quality of life after pediatric cochlear implantation: A systematic review

This study aimed to explore the health-related quality of life (HRQoL) and subjective wellbeing (SWB) of infertility patients in mainlandChina and to investigate the relationships between HRQoL and SWB instruments in infertility patients. We conducted this cross-sectional study in the Hospital for Reproductive Medicine Affiliated of Shandong University between April 2019 and November 2019. Participants self-completed the five-level EQ-5D (EQ-5D-5L) questionnaire, the Assessment of Quality of Life (AQoL)-8D, and the WHO-5 wellbeing index (WHO-5). The agreements between EQ-5D-5L and AQoL-8D were assessed employing intraclass correlation coefficient (ICC) and Bland-Altman plots. Exploratory factor analysis (EFA) was conducted to examine the difference in descriptive systems among the three instruments. We analyzed a valid sample of 618 infertility patients (84.4%). The mean scores of the total EQ-5D-5L, AQoL-8D, and WHO-5 were 0.96 (95%CI 0.96, 0.96), 0.80 (95%CI 0.79, 0.81), and 16.92 (95%CI 16.52, 17.31), respectively. Patients diagnosed with primary infertility had significantly lower HRQoL and SWB than those with secondary infertility. The ICC of EQ-5D-5L and AQoL-8D was 0.14. The AQoL-8D (r = 0.625) was more strongly correlated with WHO-5 than with the EQ-5D-5L (r = 0.262). The EFA results indicated that HRQoL instruments and the WHO-5 instruments were complementary rather than substitutable. Poorer HRQoL and SWB were found that primary than secondary infertility patients. There exists a poor agreement between EQ-5D-5L and AQoL-8D and the difference in the psychosocial components may explain the difference. Measuring both HRQoL and SWB could provide complementary information for infertility patients.

Simple SummaryHealth-related quality of life (HRQoL) is an important outcome in glioma patients, as it reflects the patient’s perspective on their functioning and wellbeing through the disease course. The aim of our systematic review was to provide an overview of how HRQoL data is currently analyzed and interpreted in glioma studies. We found that the number of studies including HRQoL data increased in the past decade, but that assessment and analytical methods were highly variable. Ways to maximize information obtained with HRQoL questionnaires include appropriate and complementary analyses at both the group and individual level, comprehensive reporting of HRQoL results, and adherence to existing guidelines on the assessment, analysis, reporting and interpretation of patient-reported outcomes. This may ultimately result in high quality information that is relevant to inform physicians, patients and their relatives about the impact of the disease and its treatment on the patients’ functioning and well-being.Background: Health-related quality of life (HRQoL) has become an increasingly important patient-reported outcome in glioma studies. Ideally, collected HRQoL data should be exploited to the full, with proper analytical methods. This systematic review aimed to provide an overview on how HRQoL data is currently evaluated in glioma studies, focusing on the research objectives and statistical analyses of HRQoL data. Methods: A systematic literature search in the databases PubMed, Embase, Web of Science and Cochrane was conducted up to 5 June 2020. Articles were selected based on predetermined inclusion criteria and information on study design, HRQoL instrument, HRQoL research objective and statistical methods were extracted. Results: A total of 170 articles describing 154 unique studies were eligible, in which 17 different HRQoL instruments were used. HRQoL was the primary outcome in 62% of the included articles, and 51% investigated ≥1 research question with respect to HRQoL, for which various analytical methods were used. In only 42% of the articles analyzing HRQoL results over time, the minimally clinical important difference was reported and interpreted. Eighty-six percent of articles reported HRQoL results at a group level only, and not at the individual patient level. Conclusion: Currently, the assessment and analysis of HRQoL outcomes in glioma studies is highly variable. Opportunities to maximize information obtained with HRQoL data include appropriate and complementary analyses at both the group and individual level, comprehensive reporting of HRQoL results in separate articles or supplementary material, and adherence to existing guidelines about the assessment, analysis and reporting of patient-reported outcomes.

PurposePatient-reported outcomes including health-related quality of life (HRQoL) are important oncological outcome measures. The validation of HRQoL instruments for patients with hepatocellular and cholangiocellular carcinoma is lacking. Furthermore, studies comparing different treatment options in respect to HRQoL are sparse. The objective of the systematic review and meta-analysis was, therefore, to identify all available HRQoL tools regarding primary liver cancer, to assess the methodological quality of these HRQoL instruments and to compare surgical, interventional and medical treatments with regard to HRQoL.MethodsA systematic literature search was conducted in MEDLINE, the Cochrane library, PsycINFO, CINAHL and EMBASE. The methodological quality of all identified HRQoL instruments was performed according to the COnsensus-based Standards for the selection of health status Measurements INstruments (COSMIN) standard. Consequently, the quality of reporting of HRQoL data was assessed. Finally, wherever possible HRQoL data were extracted and quantitative analyses were performed.ResultsA total of 124 studies using 29 different HRQoL instruments were identified. After the methodological assessment, only 10 instruments fulfilled the psychometric criteria and could be included in subsequent analyses. However, quality of reporting of HRQoL data was insufficient, precluding meta-analyses for 9 instruments.ConclusionUsing a standardized methodological assessment, specific HRQoL instruments are recommended for use in patients with hepatocellular and cholangiocellular carcinoma. HRQoL data of patients undergoing treatment of primary liver cancers are sparse and reporting falls short of published standards. Meaningful comparison of established treatment options with regard to HRQoL was impossible indicating the need for future research.

The worldwide prevalence of obesity has been steadily rising, reaching alarming levels. Obesity, particularly morbid obesity, carries significant health risks to the lives of affected patients, including physical, psychological, and social co-morbidities. Bariatric surgery provides the only effective and sustainable approach to treat morbid obesity and reverse its adverse effects. The reduction in well-being due to poor health in obesity may have adverse effects on health-related quality of life (HR-QOL). There are numerous studies reporting HR-QOL in bariatric patients; however, there is a paucity of studies examining the psychometric properties of the HR-QOL instruments used. The main aim of this review is to identify the instruments used in assessing HR-QOL in bariatric patients and evaluate their content validity. We believe that this is the first systematic review of its kind to look in depth at various generic- and obesity-specific HR-QOL instruments that were used in bariatric surgery, and to analyze their content validity. A systematic and structured search of Ovid databases (1980-2009) was conducted using terms synonymous with bariatric surgery, combined with terms synonymous with HR-QOL instruments. A total of 112 relevant studies were identified, detailing the use of eight generic, nine obesity-specific, and numerous other condition-specific instruments. A conceptual framework comprising 20 domains pertinent to bariatric surgery and morbid obesity was proposed, against which the identified generic- and obesity-specific instruments were assessed. The results of this assessment showed that neither the generic nor the specific instruments were adequate instruments in terms of content validity. Given the lack of adequate HR-QOL instruments in the rapidly developing field of bariatric surgery, we suggest building a new bariatric-specific instrument informed by the proposed framework, which will then enable clinicians to assess the full impact of morbid obesity and bariatric surgery on HR-QOL.

The place of health-related quality of life (HRQoL) instruments in clinical research trials and clinical practice as compared to more traditional clinical outcome measures such as headache intensity and frequency is unclear. To review the current status of HRQoL measurement in migraine. A literature search was done for HRQoL and migraine. Selected articles dealing with migraine and commonly used HRQoL instruments and HRQoL measures used in recent clinical trials were reviewed. Several general and migraine specific HRQoL instruments can detect changes over time in response to at least major changes in migraine therapy. Both also show a correlation with clinical headache features. However, their sensitivity to detect clinically significant changes over time is not clear. The SF-36, a general HRQoL measure and several migraine-specific HRQoL instruments are useful endpoints for migraine clinical trials. Their role in clinical practice is yet to be established.