scholarly journals Challenges in Using Recommended Quality of Life Measures to Assess Fluctuating Health: A Think-Aloud Study to Understand How Recall and Timing of Assessment Influence Patient Responses

2021 ◽  
Author(s):  
Sabina Sanghera ◽  
Axel Walther ◽  
Tim J. Peters ◽  
Joanna Coast
Keyword(s):  
Quality Of Life ◽  
Recall Period ◽  
Chemotherapy Cycle ◽  
Economic Evaluations ◽  
Health State ◽  
Think Aloud ◽  
Structured Interviews ◽  
Quality Of Life Measures ◽  
Life Years

Abstract Background It can be challenging to measure quality of life to calculate quality-adjusted life-years in recurrent fluctuating health states, as quality of life can constantly change. It is not clear how patients who experience fluctuations complete measures and how assessment timing and recall influence responses. Objective We aimed to understand how patients with fluctuating health complete widely recommended and commonly used measures (EQ-5D-5L, EORTC QLQ-C30 and SF-12) and the extent to which the recall period (‘health today’, ‘past week’ and ‘past 4 weeks’) and timing of assessment influence the way that patients complete these questionnaires. Methods Twenty-four adult patients undergoing chemotherapy for urological, gynaecological or bowel cancers in the UK participated in think-aloud interviews, while completing the measures, completed a pictorial task illustrating how quality of life changed during the chemotherapy cycle and took part in semi-structured interviews. Transcripts were analysed using constant comparison. Results Patients were consistent in describing their quality of life as changing considerably throughout a chemotherapy cycle. The shorter recall period of ‘health today’ does not adequately represent patients’ quality of life because of fluctuations, patients remarked they could give a different answer depending on the timing of assessment, and many struggled to combine the “ups and downs” to answer measures with longer recall (‘past week’ and ‘past 4 weeks’). Across all measures, patients attempted to provide averages, adopt the peak-end rule or focus on the best part of their experience. Patients commonly used more than one approach when completing a given questionnaire as well as across questionnaires. Conclusions Patients who experience recurrent fluctuations in health are unable to provide meaningful responses about their quality of life when completing quality-of-life measures due to the recall period and timing of assessment. The use of such responses to calculate health state values in economic evaluations to inform resource allocation decisions in fluctuating conditions must be questioned.

scholarly journals Producing a preference-based quality of life measure for people with Duchenne muscular dystrophy: a mixed-methods study protocol

BMJ Open ◽  
2019 ◽  
Vol 9 (3) ◽  
pp. e023685 ◽  
Author(s):  
Philip A Powell ◽  
Jill Carlton ◽  
Donna Rowen ◽  
John E Brazier
Keyword(s):  
Quality Of Life ◽  
Mixed Methods ◽  
Duchenne Muscular Dystrophy ◽  
Muscular Dystrophy ◽  
Mixed Methods Study ◽  
Health State ◽  
Open Access Journals ◽  
Life Years ◽  
Descriptive System

IntroductionPreference-based measures (PBMs) of health-related quality of life (HRQoL) are used to generate quality-adjusted life years, which are necessary for cost-effectiveness evaluations of health interventions via cost–utility analysis. These measures of health can be generic (ie, pandiagnostic) or condition specific. No condition-specific PBM of HRQoL in Duchenne muscular dystrophy (DMD) exists, yet there are concerns that standard generic measures lack the specificity to assess aspects of HRQoL that are especially important to people with DMD. This study has been designed to produce a condition-specific PBM of HRQoL in DMD.Methods and analysisThis mixed-methods study proceeds through three stages. In the first stage (concept elicitation), semistructured interviews will be conducted with boys and men diagnosed with DMD, and analysed with framework to produce a draft health state descriptive system for HRQoL in DMD. In the second stage (refining the descriptive system), patients, clinicians and primary caregivers of people with DMD will assess the face validity of the descriptive system. This will be followed by a quantitative survey on a larger sample of patients, which will be analysed with psychometric analyses to produce a refined descriptive system. In the third stage (valuation and econometric modelling), an online discrete choice experiment with duration will be administered to a general public sample to generate utility values for the new measure.Ethics and disseminationThis study has received ethical approval from the National Health Service (REC reference: 18/SW/0055). The primary output of this research will be a condition-specific PBM (or ‘bolt-on’ to an existing generic PBM) in people with DMD and an associated value set. Results will be disseminated through international conferences and open-access journals.

scholarly journals One-Year Quality of Life Post–Pneumonia Diagnosis in Japanese Adults

2020 ◽  
Author(s):  
Henry A Glick ◽  
Taiga Miyazaki ◽  
Katsuji Hirano ◽  
Elisa Gonzalez ◽  
Luis Jodar ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Japanese Version ◽  
The Elderly ◽  
Population Based ◽  
Health State ◽  
Japanese Adults ◽  
Life Years ◽  
Euroqol 5D ◽  
Pneumonia Diagnosis

Abstract Background Pneumonia is a common, serious illness in the elderly, with a poorly characterized long-term impact on health-related quality of life (HRQoL). The Japanese Goto Epidemiology Study is a prospective, active, population-based surveillance study of adults with X-ray/CT scan–confirmed community-onset pneumonia, assessing the HRQoL outcome quality-adjusted life-years (QALYs). We report QALY scores and losses among a subset of participants in this study. Methods QALYs were derived from responses to the Japanese version of the EuroQol-5D-5L health-state classification instrument at days 0, 7, 15, 30, 90, 180, and 365 after pneumonia diagnosis from participants enrolled from June 2017 to May 2018. We used patients as their own controls, calculating comparison QALYs by extrapolating EuroQol-5D-5L scores for day −30, accounting for mortality and changes in scores with age. Results Of 405 participants, 85% were aged ≥65 years, 58% were male, and 69% were hospitalized for clinically and radiologically confirmed pneumonia. Compliance with interviews by patients or proxies was 100%. Adjusted EuroQol-5D-5L scores were 0.759, 0.561, 0.702, and 0.689 at days −30, 0 (diagnosis), 180, and 365, respectively. Average scores at all time points remained below the average day −30 scores (P ≤ .001). Pneumonia resulted in a 1-year adjusted loss of 0.13 QALYs (~47.5 quality-adjusted days) (P < .001). Conclusions Substantial QALY losses were observed among Japanese adults following pneumonia diagnosis, and scores had not returned to prediagnosis levels at 1 year postdiagnosis. QALY scores and cumulative losses were comparable to those in US adults with chronic heart failure, stroke, or renal failure.

Deficits in preference-based health-related quality of life after complications associated with tibial fracture

2018 ◽  
Vol 100-B (9) ◽  
pp. 1227-1233 ◽  
Author(s):  
I. L. Gitajn ◽  
A. J. Titus ◽  
A. N. Tosteson ◽  
S. Sprague ◽  
K. Jeray ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Tibial Fracture ◽  
Short Form ◽  
Tibial Fractures ◽  
Health State ◽  
Life Years ◽  
Related Quality ◽  
Health Related ◽  
Health State Utility Values

Aims The aims of this study were to quantify health state utility values (HSUVs) after a tibial fracture, investigate the effect of complications, to determine the trajectory in HSUVs that result in these differences and to quantify the quality-adjusted life years (QALYs) experienced by patients. Patients and Methods This is an analysis of 2138 tibial fractures enrolled in the Fluid Lavage of Open Wounds (FLOW) and Study to Prospectively Evaluate Reamed Intramedullary Nails in Patients with Tibial Fractures (SPRINT) trials. Patients returned for follow-up at two and six weeks and three, six, nine and 12 months. Short-Form Six-Dimension (SF-6D) values were calculated and used to calculate QALYs. Results Compared with those who did not have a complication, those with a complication treated either nonoperatively or operatively had lower HSUVs at all times after two weeks. The HSUVs improved in all patients with the passage of time. However, they did not return to the remembered baseline preinjury values nor to US age-adjusted normal values by 12 months after the injury. Conclusion While the acute fracture and complications may have resolved clinically, the detrimental effect on a patient’s quality of life persists up to 12 months after the injury. Cite this article: Bone Joint J 2018;100-B:1227–33.

scholarly journals Estimating a Preference-Based Single Index Measuring the Quality-of-Life Impact of Self-Management for Diabetes

2018 ◽  
Vol 38 (6) ◽  
pp. 699-707 ◽  
Author(s):  
Donna Rowen ◽  
Alexander Labeit ◽  
Katherine Stevens ◽  
Jackie Elliott ◽  
Brendan Mulhern ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Classification System ◽  
Fixed Effects ◽  
Online Survey ◽  
Self Management ◽  
Health State ◽  
Utility Values ◽  
Life Years ◽  
Life Impact

Objective. Self-management is becoming increasingly important in diabetes but is neglected in conventional preference-based measures. The objective of this paper was to generate health state utility values for a novel classification system measuring the quality-of-life impact of self-management for diabetes, which can be used to generate quality-adjusted life years (QALYs). Methods. A large online survey was conducted using a discrete choice experiment (DCE), with duration as an additional attribute, on members of the UK general population ( n = 1,493) to elicit values for health (social limitations, mood, vitality, hypoglycaemia) and non-health (stress, hassle, control, support) aspects of self-management in diabetes. The data were modelled using a conditional fixed-effects logit model and utility estimates were anchored on the one to zero (full health to dead) scale. Results. The model produced significant and consistent coefficients, with one logical inconsistency and 3 insignificant coefficients for the milder levels of some attributes. The anchored utilities ranged from 1 for the best state to −0.029 for the worst state (meaning worse than dead) defined by the classification system. Conclusion. The results presented here can potentially be used to generate utility values capturing the day to day impact of interventions in diabetes on both health and self-management. These utility values can potentially be used to generate QALYs for economic models of the cost-effectiveness of interventions in diabetes.

scholarly journals Development of a pharmacoeconomic registry: an example using hormonal contraceptives

2021 ◽  
Vol 11 (1) ◽  
Author(s):  
Annesha White ◽  
Meenakshi Srinivasan ◽  
La Marcus Wingate ◽  
Samuel Peasah ◽  
Marc Fleming
Keyword(s):  
Quality Of Life ◽  
Best Practices ◽  
Health State Utility ◽  
Supplementary Information ◽  
Hormonal Contraceptives ◽  
Economic Evaluations ◽  
Health State ◽  
Data Dictionary ◽  
Extensive Discussion

Abstract Background Disease-specific registries, documenting costs and probabilities from pharmacoeconomic studies along with health state utility values from quality-of-life studies could serve as a resource to guide researchers in evaluating the published literature and in the conduct of future economic evaluations for their own research. Registries cataloging economic evaluations currently exist, however they are restricted by the type of economic evaluations they include. There is a need for intervention-specific registries, that document all types of complete and partial economic evaluations and auxiliary information such as quality of life studies. The objective of this study is to describe the development of a pharmacoeconomic registry and provide best practices using an example of hormonal contraceptives. Methods An expert panel consisting of researchers with expertise in pharmacoeconomics and outcomes research was convened and the clinical focus of the registry was finalized after extensive discussion. A list of key continuous, categorical and descriptive variables was developed to capture all relevant data with each variable defined in a data dictionary. A web-based data collection tool was designed to capture and store the resulting metadata. A keyword based search strategy was developed to retrieve the published sources of literature. Finally, articles were screened for relevancy and data was extracted to populate the registry. Expert opinions were taken from the panel at each stage to arrive at consensus and ensure validity of the registry. Results The registry focused on economic evaluation literature of hormonal contraceptives used for contraception. The registry consisted of 65 articles comprising of 22 cost-effectiveness analyses, 9 cost-utility analyses, 7 cost-benefit analyses, 1 cost-minimization, 14 cost analyses, 10 cost of illness studies and 2 quality of life studies. The best practices followed in the development of the registry were summarized as recommendations. The completed registry, data dictionary and associated data files can be accessed in the supplementary information files. Conclusion This registry is a comprehensive database of economic evaluations, including costs, clinical probabilities and health-state utility estimates. The collated data captured from published information in this registry can be used to identify trends in the literature, conduct systematic reviews and meta-analysis and develop novel pharmacoeconomic models.

scholarly journals Developing a dementia-specific preference-­based quality of life measure (AD-5D) in Australia: a valuation study protocol

BMJ Open ◽  
2018 ◽  
Vol 8 (1) ◽  
pp. e018996 ◽  
Author(s):  
Tracy A Comans ◽  
Kim-Huong Nguyen ◽  
Brendan Mulhern ◽  
Megan Corlis ◽  
Li Li ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Health State ◽  
Health Related Quality ◽  
People With Dementia ◽  
Life Years ◽  
Related Quality ◽  
Health Related

IntroductionGeneric instruments for assessing health-related quality of life may lack the sensitivity to detect changes in health specific to certain conditions, such as dementia. The Quality of Life in Alzheimer’s Disease (QOL-AD) is a widely used and well-validated condition-specific instrument for assessing health-related quality of life for people living with dementia, but it does not enable the calculation of quality-adjusted life years, the basis of cost utility analysis. This study will generate a preference-based scoring algorithm for a health state classification system -the Alzheimer’s Disease Five Dimensions (AD-5D) derived from the QOL-AD.Methods and analysisDiscrete choice experiments with duration (DCETTO) and best–worst scaling health state valuation tasks will be administered to a representative sample of 2000 members of the Australian general population via an online survey and to 250 dementia dyads (250 people with dementia and their carers) via face-to-face interview. A multinomial (conditional) logistic framework will be used to analyse responses and produce the utility algorithm for the AD-5D.Ethics and disseminationThe algorithms developed will enable prospective and retrospective economic evaluation of any treatment or intervention targeting people with dementia where the QOL-AD has been administered and will be available online. Results will be disseminated through journals that publish health economics articles and through professional conferences. This study has ethical approval.

scholarly journals Social tariffs and democratic choice – do population-based health state values reflect the will of the people?

2019 ◽  
Author(s):  
Paul Schneider
Keyword(s):  
Quality Of Life ◽  
Future Research ◽  
Economic Evaluations ◽  
Health State ◽  
Health Related Quality ◽  
Health States ◽  
Health Technologies ◽  
Related Quality ◽  
Health Related

In economic evaluations of health technologies, health outcomes are commonly measured in terms of QALYs. QALYs are the product of time and health-related quality of life. Health-related quality of life, in turn, is determined by a social tariff, which is supposed to reflect the public’s preference over health states. This paper argues that, because of the tariff’s role in the societal decision making process, it should not be understood as merely a statistical model, but as a major instrument of democratic participation. I outline what implications this might have for both the method used to aggregate individual preferences, and the set of individuals whose preferences should count. Alternative tariff specifications are explored, and future research directions are proposed.

scholarly journals The construct validity and responsiveness of the EQ-5D-5L, AQL-5D and a bespoke TTO in acute asthmatics

2019 ◽  
Vol 29 (3) ◽  
pp. 619-627 ◽  
Author(s):  
Christina-Jane Crossman-Barnes ◽  
Tracey Sach ◽  
Andrew Wilson ◽  
Garry Barton
Keyword(s):  
Quality Of Life ◽  
Construct Validity ◽  
Convergent Validity ◽  
Statistical Significance ◽  
Economic Evaluations ◽  
Test Statistic ◽  
Discriminative Validity ◽  
Life Years ◽  
Asthma Patients

Abstract Purpose Measuring quality of life in acute asthmatics is challenging, especially when asthma attacks can occur sporadically. Several questionnaires can be used to measure quality of life in this patient group; however, psychometric testing is limited on questionnaires that can be used to estimate Quality Adjusted Life years. The objective of this study is to assess the construct validity (convergent and discriminative validity) and responsiveness of the EuroQol-5-Dimensions 5-Level (EQ-5D-5L), Asthma Quality of Life Utility Index-5 Dimensions (AQL-5D) and Time Trade-Off (TTO) in acute asthma patients. Methods Data from a prospective cohort study were used to test the validity and responsiveness of the EQ-5D-5L, AQL-5D and TTO in asthma patients who were recruited from UK accident & emergency departments or hospital wards. The spearman’s rank correlation coefficient, the Kruskal–Wallis test statistic and the standardized response mean were used to test for convergent validity, discriminative validity and responsiveness, respectively. Results One hundred and twenty-one participants were included in the available case analysis. The EQ-5D-5L and AQL-5D showed moderate to strong correlations for convergent validity at baseline, week 4 and week 8. The AQL-5D and TTO showed moderate correlations at week 4 and week 8. No statistical significance was observed for discriminative validity at baseline. Both the EQ-5D-5L and the AQL-5D also showed that they were sensitive to change for the recovery responses. Conclusions The EQ-5D-5L and AQL-5D showed stronger construct validity and responsiveness compared to the TTO. Therefore, both the EQ-5D-5L and AQL-5D should be considered for use in future economic evaluations.

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