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Analysis of Optimal Health-Related Quality of Life Measures in Patients Waitlisted for Lung Transplantation.

ABSTRACT: Background:Improving health-related quality of life (HRQL) is an important goal of lung transplantation, and St. George's Respiratory Questionnaire (SGRQ) is frequently used for assessing HRQL in patients waitlisted for lung transplantation. We hypothesized that chronic respiratory failure (CRF)-specific HRQL measures would be more suitable than the SGRQ, considering the underlying disease and its severity in these patients. Methods:We prospectively collected physiological and patient-reported data (HRQL, dyspnea, and psychological status) of 199 patients newly registered in the waiting list of lung transplantation. CRF-specific HRQL measures of the Maugeri Respiratory Failure Questionnaire (MRF) and Severe Respiratory Insufficiency Questionnaire (SRI) were assessed in addition to the SGRQ. Results:Compared to the MRF-26 and SRI, the score distribution of the SGRQ was skewed toward the worse ends of the scale. All domains of the MRF-26 and SRI were significantly correlated with the SGRQ. Multiple regression analyses to investigate factors predicting each HRQL score indicated that dyspnea and psychological status accounted for 12% to 28% of the variance more significantly than physiological measures did. The MRF-26 Total and SRI Summary significantly worsened from the baseline to 1 year (p < 0.001 and p < 0.001 and p < 0.001 and. Conclusions:The MRF-26 and SRI are valid, discriminative, and responsive in patients waitlisted for lung transplantation. In terms of the score distribution and responsiveness, CRF-specific measures may function better in their HRQL assessment than the currently used measures do.

SUBMITTER: Tokuno J

PROVIDER: S-EPMC7077042 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature

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Analysis of Optimal Health-Related Quality of Life Measures in Patients Waitlisted for Lung Transplantation.

Tokuno Junko J Chen-Yoshikawa Toyofumi F TF Oga Toru T Oto Takahiro T Okawa Tomoyo T Okada Yoshinori Y Akiba Miki M Ikeda Masaki M Nakajima Daisuke D Hamaji Masatsugu M Motoyama Hideki H Aoyama Akihiro A Isomi Maki M Chin Kazuo K Date Hiroshi H

Canadian respiratory journal 20200305

<h4>Background</h4>Improving health-related quality of life (HRQL) is an important goal of lung transplantation, and St. George's Respiratory Questionnaire (SGRQ) is frequently used for assessing HRQL in patients waitlisted for lung transplantation. We hypothesized that chronic respiratory failure (CRF)-specific HRQL measures would be more suitable than the SGRQ, considering the underlying disease and its severity in these patients.<h4>Methods</h4>We prospectively collected physiological and pat ...[more]

PMID: 32211085

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Project description:BackgroundLung transplantation and related medications are associated with pathobiological changes that can induce frailty, a state of decreased physiological reserve. Causes of persistent or emergent frailty after lung transplantation, and whether such transplant-related frailty is associated with key outcomes, are unknown.MethodsFrailty and health-related quality of life (HRQL) were prospectively measured repeatedly for up to 3 years after lung transplantation. Frailty, quantified by the Short Physical Performance Battery (SPPB), was tested as a time-dependent binary and continuous predictor. The association of transplant-related frailty with HRQL and mortality was evaluated using mixed effects and Cox regression models, respectively, adjusting for age, sex, ethnicity, diagnosis, and for body mass index and lung function as time-dependent covariates. We tested the association between measures of body composition, malnutrition, renal dysfunction and immunosuppressants on the development of frailty using mixed effects models with time-dependent predictors and lagged frailty outcomes.ResultsAmong 259 adults (56% male; mean age 55.9±12.3 years), transplant-related frailty was associated with lower HRQL. Frailty was also associated with a 2.5-fold higher mortality risk (HR 2.51; 95% CI 1.21 to 5.23). Further, each 1-point worsening in SPPB was associated, on average, with a 13% higher mortality risk (HR 1.13; 95% CI 1.04 to 1.23). Secondarily, we found that sarcopenia, underweight and obesity, malnutrition, and renal dysfunction were associated with the development of frailty after transplant.ConclusionsTransplant-related frailty is associated with lower HRQL and higher mortality in lung recipients. Abnormal body composition, malnutrition and renal dysfunction may contribute to the development of frailty after transplant. Confirming the role of these potential contributors and developing interventions to mitigate frailty may improve lung transplant success.

Project description:Several measures of oral health-related quality of life have been developed for children. The most frequently used are the Child Perceptions Questionnaire (CPQ), the Child Oral Impacts on Daily Performances (C-OIDP) and the Child Oral Health Impact Profile (COHIP). The aim of this study was to assess the methodological quality of the development and testing of these three measures.A systematic search strategy was used to identify eligible studies published up to December 2012, using both MEDLINE and Web of Science. Titles and abstracts were read independently by two investigators and full papers retrieved where the inclusion criteria were met. Data were extracted by two teams of two investigators using a piloted protocol. The data were used to describe the development of the measures and their use against existing criteria. The methodological quality and measurement properties of the measures were assessed using standards proposed by the Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN) group.The search strategy yielded 653 papers, of which 417 were duplicates. Following analysis of the abstracts, 119 papers met the inclusion criteria. The majority of papers reported cross-sectional studies (n?=?117) with three of longitudinal design. Fifteen studies which had used the original version of the measures in their original language were included in the COSMIN analysis. The most frequently used measure was the CPQ. Reliability and construct validity appear to be adequate for all three measures. Children were not fully involved in item generation which may compromise their content validity. Internal consistency was measured using classic test theory with no evidence of modern psychometric techniques being used to test unidimensionality of the measures included in the COSMIN analysis.The three measures evaluated appear to be able to discriminate between groups. CPQ has been most widely tested and several versions are available. COHIP employed a rigorous development strategy but has been tested in fewer populations. C-OIDP is shorter and has been used successfully in epidemiological studies. Further testing using modern psychometric techniques such as item response theory is recommended. Future developments should also focus on the development of measures which can evaluate longitudinal change.

Project description:BackgroundChildren's oral health-related quality of life (COHQoL) measures are well known and widely used. However, rigorous systematic reviews of these measures and analyses of their quality are in absence.ObjectivesTo systematically review and quantitatively assess the quality of COHQoL measures through a scoping review.Data sourcesSystematic literature search of PubMed, CINAHL (Cumulative Index to Nursing and Allied Health Literature), EMBASE (Excerpta Medica database), HaPI (Health and Psychosocial Instruments), and DOSS (Dentistry and Oral Sciences Source).Study eligibilityThe measure's focus was COHQoL; the child age ranged from 5 to 14 years; the publication was either a research article or a systematic review and related to caries; and it was written in English or had an English abstract. Two authors independently selected the studies. Disagreements were reconciled by group discussions with a third author.AppraisalThe International Society for Quality of Life Research minimum standards for patient-reported outcome measures were used for quality appraisal.SynthesisDescriptive analysis.ResultsWe identified 18 measures. Their quality scores ranged from 9.5 to 15.0 on a scale of 16. The quality appeared to bear no relationship to the citation and use of these measures. However, elements of these measures might be more useful than others, depending on the age-specific use and primary quality concerns.LimitationsSome of the information on the minimum standards of the 18 measures cannot be found in the existing literature. Measures published without English abstract were not searched.ConclusionsThe quality of these measures is suboptimal. Researchers and practitioners in this field should exercise caution when choosing and using these measures. Efforts at improving the quality of the COHQoL measures, such as refining existing ones or developing new measures, are warranted.Knowledge transfer statementResearchers, clinician scientists, and clinicians can use the results of this study when deciding which oral health-related quality of life measure they wish to use in children.

Project description:Background & Aims:Non-alcoholic steatohepatitis (NASH) is known to have a negative impact on patients' health-related quality of life (HRQoL), even before progression to cirrhosis has occurred. The burden of NASH-related cirrhosis from the patient perspective remains poorly understood. Herein, we aimed to identify the burden of disease and HRQoL impairment among patients with NASH-related compensated cirrhosis. Methods:This targeted literature review sought first to identify the humanistic burden of disease from the perspective of patients with diagnosed NASH-cirrhosis and, secondly, to identify generic or disease-specific patient-reported outcome measures (PROMs) used to assess the impact of NASH-cirrhosis. Searches were conducted in bibliographical databases, grey or unpublished literature, liver disease websites, support group websites and online blogs. A quality assessment of specific PROMs was conducted. Results:Patients with NASH-cirrhosis are reported to suffer from lower HRQoL than patients with non-cirrhotic NASH and the general population with respect to physical health/functioning, emotional health and worry, and mental health. Thirteen PROMs were identified, of which 4 were liver-disease specific: CLDQ, CLDQ-NAFLD, LDQoL and LDSI. The most commonly used measures do not comply with current industry or regulatory standards for PROMs and/or are not validated for use in a cirrhotic NASH population. Conclusions:Patients with NASH-cirrhosis have lower HRQoL and poorer physical health than patients with non-cirrhotic NASH. However, the literature lacked detail of the everyday impact on patients' lives. Currently, a number of PROMs are available to measure the impact of the disease in patients with chronic liver conditions. The lack of studies that include qualitative insights in this population mandates further exploration and research. Lay summary:It is not well understood how having non-alcoholic fatty liver disease (NAFLD)-related cirrhosis affects a person's everyday wellbeing and quality of life. Some research has been done with patients who have early stages of liver disease but not people with cirrhosis. We found that patients with NAFLD-related cirrhosis tended to have poorer health than patients without cirrhosis. But there was not very much information from patients themselves and there were no tools or questionnaires just for this group of patients.

Project description:BackgroundHealth-related quality of life (HRQOL) is an important outcome measure in patients with end-stage renal disease. HRQOL is assumed to improve with kidney transplantation and also with nocturnal hemodialysis compared to conventional hemodialysis. However, there is no evidence regarding HRQOL to support the optimal treatment choice for patients on nocturnal hemodialysis who hesitate opting for transplantation. We therefore compared HRQOL between patients who were treated with kidney transplantation or nocturnal hemodialysis for one year.MethodsWe assessed HQROL using the Kidney Disease Quality of Life-Short Form questionnaire in a cross-sectional sample of patients who were treated with kidney transplantation (n = 41) or nocturnal hemodialysis (n = 31) for one year. All patients on nocturnal hemodialysis were transplantation candidates. Using linear regression, we compared HRQOL between kidney transplantation and nocturnal hemodialysis, and adjusted for age, sex, dialysis duration, cardiovascular disease, and presence of residual urine production.ResultsAt one year follow-up, mean age of the study population was 54 ±13 years, and median dialysis duration was 3.2 (IQR 2.1-5.0) years. Kidney transplantation was associated with significantly higher HRQOL on the domain "effects" compared to nocturnal hemodialysis (adjusted difference 12.0 points, 95% CI 3.9; 20.1). There were potentially clinically relevant differences between kidney transplantation and nocturnal hemodialysis on the domains "burden" (adjusted difference 11.1 points, 95% CI -2.6; 24.8), "social support" (adjusted difference 6.2, 95% CI -6.6; 19.1), and the physical composite score (adjusted difference 3.0, 95% CI -2.0; 8.1), but these were not significant.ConclusionsAfter kidney transplantation, HRQOL is especially higher on the domain "effects of kidney disease" compared to nocturnal hemodialysis. This can be useful when counseling patients on nocturnal hemodialysis who may opt for transplantation.

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Analysis of Optimal Health-Related Quality of Life Measures in Patients Waitlisted for Lung Transplantation.

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Analysis of Optimal Health-Related Quality of Life Measures in Patients Waitlisted for Lung Transplantation.

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