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How Should We Capture Health State Utility in Dementia? Comparisons of DEMQOL-Proxy-U and of Self-and Proxy-Completed EQ-5D-5L.
Background
Dementia-specific and proxy-completed preference-based measures have been proposed for use in intervention studies involving people living in residential care, in instances where generic, self-reported preference-based measures have been deemed inappropriate.
Objective
This study was conducted to investigate the construct validity, criterion validity, and responsiveness of DEMQOL-Proxy-U and of self- and proxy-completed EQ-5D-5L.
Methods
The analysis used a 3-wave, individual-level data set of 1004 people living with dementia in residential care that included self-completed EQ-5D-5L and formal-carer and informal-carer proxy-completed EQ-5D-5L and DEMQOL-Proxy-U utility values, in addition to other nonutility cognitive measures (Functional Assessment Staging [FAST], Clinical Dementia Rating [CDR], Cohen-Mansfield Agitation Inventory [CMAI]) and health-related quality of life (HRQOL) measures (nursing home version of the Quality of Life with Alzheimer's disease scale [QOL-AD-NH], Quality of Life in Late-Stage Dementia [QUALID] scale). Construct validity, criterion validity, and responsiveness were assessed using correlation, Bland-Altman plots, and panel data regression models.
Results
Self-completed EQ-5D-5L failed to reflect clinically important differences and changes in FAST, CDR, and CMAI but did capture the resident's own view of HRQOL (QOL-AD-NH). As dementia severity increased, collection of EQ-5D-5L-proxy and DEMQOL-Proxy-U data was more feasible than collection of self-completed EQ-5D-5L. These formal-carer and informal-carer proxy measures also better reflected changes in FAST, CDR, and CMAI but did not capture the resident's own view of HRQOL (QOL-AD-NH), despite adequately capturing the proxy's own view of the resident's HRQOL (QUALID). This indicates discrepancies between a proxy's view and resident's view of the impact that tangible declines in health, cognition, or functional abilities have on HRQOL. The EQ-5D-5L-proxy and DEMQOL-Proxy-U were generally poor substitutes. Regardless of which proxy completed it, the EQ-5D-5L-proxy was typically more responsive than the DEMQOL-Proxy-U to changes in CDR, FAST, and CMAI, indicating that use of the DEMQOL-Proxy-U is not always justified.
Conclusion
Disparities in the measurement properties of different utility measures mean that choices about how to measure utility in trials could affect economic evaluation outcomes and hence how resources are allocated for dementia care.
Martin, A., Meads, D., Griffiths, A. W., & Surr, C. A. (2019). How Should We Capture Health State Utility in Dementia? Comparisons of DEMQOL-Proxy-U and of Self-and Proxy-Completed EQ-5D-5L. Value in Health.
Can the current hypodontia care pathway promote shared decision-making?
Objective:
To determine the extent to which the current care pathway in hypodontia promotes shared decision-making (SDM).
Design:
Exploratory cross-sectional study using qualitative methods.
Setting:
Orthodontic department of two NHS teaching hospitals in Yorkshire.
Participants:
Young people aged 12–16 years with hypodontia of any severity and at any stage of treatment, and their parents and guardians.
Methods:
(1) Observation and audio-recording of interdisciplinary consultation in hypodontia clinics (n = 5) without any researcher interference; (2) short, structured interviews with young people with hypodontia (n = 8) and their parent (n = 8) using a topic guide to explore themes around decision-making. Audio-recordings were transcribed and analysed using a thematic framework.
Results:
Consultations were used as an opportunity for interdisciplinary discussion, information provision and treatment planning. Evidence of good communication was observed but patient engagement was low. The decision to be made was usually stated and treatment options discussed, but time constraints limited the scope for adequate information exchange and assessment of understanding. No methods were used to establish patient and family preferences or values. Interviews suggested parents expect the dental team to make decisions and young people rely on parental advocacy. Despite little evidence of SDM, participants reported satisfaction with their treatment.
Conclusions:
The current care pathway for hypodontia does not support clinicians in the steps of SDM. Recommendations for improving SDM processes include support to identify preference-based decisions, greater access to comprehensive and accessible patient information to enable preparation for consultation, alternative methods for effective communication of complex information and use of preference elicitation tools to aid value-driven decision-making.
Barber, S., Pavitt, S., Meads, D., Khambay, B., & Bekker, H. (2019). Can the current hypodontia care pathway promote shared decision-making?. Journal of orthodontics, 46(2), 126-136.
Cost-Effectiveness of Pain Management Strategies in Advanced Cancer.
Objectives. Uncontrolled pain in advanced cancer is a common problem and has significant impact on individuals’ quality of life and use of healthcare resources. Interventions to help manage pain at the end of life are available, but there is limited economic evidence to support their wider implementation. We conducted a case study economic evaluation of two pain selfmanagement interventions (PainCheck and Tackling Cancer Pain Toolkit [TCPT]) compared with usual care.
Methods. We generated a decision-analytic model to facilitate the evaluation. This modelled the survival of individuals at the end of life as they moved through pain severity categories. Intervention effectiveness was based on published meta-analyses results. The evaluation was conducted from the perspective of the U.K. health service provider and reported cost per qualityadjusted life-year (QALY).
Results. PainCheck and TCPT were cheaper (respective incremental costs -GBP148 [-EUR168.53] and -GBP474 [-EUR539.74]) and more effective (respective incremental QALYs of 0.010 and 0.013) than usual care. There was a 65 percent and 99.5 percent chance of cost-effectiveness for PainCheck and TCPT, respectively. Results were relatively robust to sensitivity analyses. The most important driver of cost-effectiveness was level of pain reduction (intervention effectiveness). Although cost savings were modest per patient, these were considerable when accounting for the number of potential intervention beneficiaries.
Conclusions. Educational and monitoring/feedback interventions have the potential to be cost-effective. Economic evaluations based on estimates of effectiveness from published meta-analyses and using a decision modeling approach can support commissioning decisions and implementation of pain management strategies.
Meads, D. M., O'Dwyer, J. L., Hulme, C. T., Lopez, R. R., & Bennett, M. I. (2019). Cost-Effectiveness of Pain Management Strategies in Advanced Cancer. International journal of technology assessment in health care, 35(2), 141-149.
Development of a Discrete-Choice Experiment (DCE) to Elicit Adolescent and Parent Preferences for Hypodontia Treatment.
Objective
Our objective was to develop and test a discrete-choice experiment (DCE) survey to elicit adolescent and parent preferences for dental care for hypodontia (a developmental condition where one or more teeth fail to develop).
Methods
This was a mixed-methods study. Participants were adolescents (aged 12–16 years) with hypodontia and their parents and the dentists providing hypodontia care. Stage one entailed attribute development, as follows. (1) Attribute identification: systematic review of hypodontia literature; interviews with adolescents with hypodontia (n = 8) and parents (n = 8); observation of hypodontia clinical consultations (n = 5); environmental scan of hypodontia patient information resources (n = 30); and systematic analysis of social media posts (n = 176). (2) Attribute selection: stakeholder consultation to develop items for a questionnaire; rating and ranking questionnaire for adolescents with hypodontia and parents (n = 18); further stakeholder consultation. Stage two involved the development of the DCE survey, and stage three included the pre-testing using cognitive interviews with adolescents (n = 12) and parents (n = 8) to assess face and content validity.
Results
The attribute long list included 27 attributes focusing on service delivery and treatment outcome, from which seven ‘important’ attributes were selected for pre-testing. Cognitive interviewing suggested adolescents found the DCE choice tasks challenging to understand; the survey was modified to enhance its acceptability. One attribute was excluded as it showed poor validity with adolescents. Pre-testing suggested DCE choice tasks encouraged thinking and discussion about preferences for treatment.
Conclusions
Including the target respondent group in all stages of DCE development ensured the final DCE survey was valid and acceptable. DCE methods appear to be a useful tool for exploring joint decision making alongside conventional preference elicitation.
Barber, S., Bekker, H., Marti, J., Pavitt, S., Khambay, B., & Meads, D. (2019). Development of a Discrete-Choice Experiment (DCE) to Elicit Adolescent and Parent Preferences for Hypodontia Treatment. The Patient-Patient-Centered Outcomes Research, 12(1), 137-148.
What’s Important in AAC Decision Making for Children? Evidence from a Best-worst Scaling Survey.
The choice of which AAC device to provide for a child can have long lasting consequences, but little is known about the decision-making of AAC professionals who make recommendations in this context. A survey was conducted with AAC professionals using best–worst scaling methodology examining what characteristics of children and attributes of AAC devices are considered most important in decision-making. A total of 19 child characteristics and 18 device attributes were selected by the authors from lists generated from literature reviews and from focus groups with AAC professionals, people who use AAC, and other stakeholders. The characteristics and attributes were used to develop two best–worst scaling surveys that were administered to 93 AAC professionals based in the UK. The relative importance of characteristics/attributes was estimated using statistical modelling. Child characteristics related to language and communication, cognitive and learning abilities, and personality traits were generally found to be more important than physical features. Communication, language, and interface-related AAC device attributes were generally more important than hardware and physical attributes. Respondent demographics (e.g., experience, professional background) did not seem to influence the importance assigned to device characteristics or attributes. Findings may inform both future quantitative research into decision-making and efforts to improve decision-making in practice.
Webb, E.J.D., Meads, D., Lynch, Y., Randall, N., Judge, S., Goldbart, J., Meredith, S., Moulam, L., Hess, S. & Murray, J. (2019), What’s Important in AAC Decision Making for Children? Evidence from a Best-worst Scaling Survey. Augmentative and Alternative Communication, 35(2), pp. 80-94.
Identification and appraisal of outcome measures used to evaluate hypodontia care: A systematic review.
Introduction
Identification and appraisal of the outcome measures that have been used to evaluate hypodontia treatment and deliver services are essential for improving care. A lack of alignment between outcomes and patient values can limit the scope for patient-centered care. Our objectives were to identify and appraise the outcomes selected to evaluate hypodontia care.
Methods
Data sources included 10 electronic databases and grey literature, searched using terms for hypodontia and its treatment methods. Study eligibility included mixed study designs to ensure comprehensive identification of outcomes, excluding case reports and case series with fewer than 10 participants and nonsystematic reviews. Participants and interventions involved people with hypodontia receiving any dental treatment to manage their hypodontia. Simulated treatment, purely laboratory-based interventions, and future treatments still in development were excluded. Research outcomes were identified and synthesised into 4 categories: clinical indicators, and patient-reported, clinician-reported, and lay-reported outcomes. No synthesis of efficacy data was planned, and consequently no methodologic quality appraisal of the studies was undertaken.
Results
The search identified 497 abstracts, from which 106 eligible articles were retrieved in full. Fifty-six studies and 8 quality-improvement reports were included. Clinical indicators were reported in 49 studies (88%) including appearance, function, dental health, treatment longevity, treatment success and service delivery. Patient-reported outcomes were given in 22 studies (39%) including oral health-related quality of life, appearance, function, symptoms of temporomandibular dysfunction, and patient experience. Clinician-reported outcomes were limited to appearance. Variability was seen in the tools used for measuring outcomes.
Conclusions
There is a lack of rationale and consistency in the selection of outcome measures used to evaluate hypodontia care. Outcomes are largely clinician and researcher-driven with little evidence of their relevance to patients. There was a paucity of outcomes measuring access to care, quality of care, and cost. Evidence from hypodontia research is clinician-focused and likely to have limited value to support patients during decision making. Attempts to synthesise the evidence base for translation into practice will be challenging. There is a need for a core outcomes set with a patient-centric approach to drive improvements in health services.
Barber, S., Bekker, H. L., Meads, D., Pavitt, S., & Khambay, B. (2018). Identification and appraisal of outcome measures used to evaluate hypodontia care: A systematic review. American Journal of Orthodontics and Dentofacial Orthopedics, 153(2), 184-194.
Community IntraVenous Antibiotic Study (CIVAS): Protocol for An Evaluation of Patient Preferences for and Cost effectiveness of Community Intravenous Antibiotic Services.
Introduction Outpatient parenteral antimicrobial therapy (OPAT) is used to treat a wide range of infections, and is common practice in countries such as the USA and Australia. In the UK, national guidelines (standards of care) for OPAT services have been developed to act as a benchmark for clinical monitoring and quality. However, the availability of OPAT services in the UK is still patchy and until quite recently was available only in specialist centres. Over time, National Health Service (NHS) Trusts have developed OPAT services in response to local needs, which has resulted in different service configurations and models of care. However, there has been no robust examination comparing the cost-effectiveness of each service type, or any systematic examination of patient preferences for services on which to base any business case decision. Methods and analysis The study will use a mixed methods approach, to evaluate patient preferences for and the cost-effectiveness of OPAT service models. The study includes seven NHS Trusts located in four counties. There are five inter-related work packages: a systematic review of the published research on the safety, efficacy and cost-effectiveness of intravenous antibiotic delivery services; a qualitative study to explore existing OPAT services and perceived barriers to future development; an economic model to estimate the comparative value of four different community intravenous antibiotic services; a discrete choice experiment to assess patient preferences for services, and an expert panel to agree which service models may constitute the optimal service model(s) of community intravenous antibiotics delivery. Ethics and dissemination The study has been approved by the NRES Committee, South West—Frenchay using the Proportionate Review Service (ref 13/SW/0060). The results of the study will be disseminated at national and international conferences, and in international journals.
Czoski Murray, C., Twiddy, M., Meads, D., Hess, S., et al. (2015), Community IntraVenous Antibiotic Study (CIVAS): Protocol for An Evaluation of Patient Preferences for and Cost effectiveness of Community Intravenous Antibiotic Services. BMJ Open, 5 (8).
Out With The Old–In With The New: Would New Social Preference Weights For Eq-5d Inevitably Require A Reappraisal of Previous Cost-Effectiveness Determinations?
Objectives Social preferences are widely used in economic evaluation required by regulatory agencies. In the UK, NICE requires the use of EQ-5D and its associated set of TTO preference weights for computing QALYs. The weights in question date back nearly two decades. It is reasonable to question whether they continue to represent contemporary social preferences. Were a revised set of EQ-5D weights to be produced then would this necessitate the revision of all past appraisal decisions? This paper presents the 1stphase of work designed to address that question. Methods The ICER is defined by the ratio of marginal cost (ΔC) /marginal benefit (ΔB). For a given ΔC the ICER falls as ΔB increases. For a given threshold (λ) and for a fixed incremental cost (ΔC), there is a minimum health benefit ΔBmin (given by ΔC/λ) which must be achieved to produce an ICER that comes below that threshold limit. TTO-weighted scores were computed for all 243 health states defined by the 3-level version of EQ-5D. A difference matrix was created in which D (i, j) contains the numeric difference between the ith and jth state. The number of differences below a given ΔBminwas computed for each column (health state). Threshold values were varied (£20,000-£50,000). Cost differences were varied (£500-£10,000). Results Less than 10% of health state value differences failed to meet the minimum ΔBmin of 0.0125 (ΔC =£500; λ=£20,000) indicating susceptability to changes in health state value, however this proportion rose to 57% for higher incremental costs (e. g. ΔC =£3,000). 81/243 health states account for 50% of the differences that exceed ΔBminat all tested levels of ΔC and λ. Graphical representation of these Results can be used to assess the need for reappraisal. Conclusions For higher cost interventions, relatively small differences in EQ-5D weights can generate ICERs with the propensity to reverse previous cost-effectiveness decisions.
Kind, P., & Meads, D. M. (2014). Out With The Old–In With The New: Would New Social Preference Weights For Eq-5d Inevitably Require A Reappraisal of Previous Cost-Effectiveness Determinations? Value in Health, 17(7), A439.
