Injury characteristics and EQ-5D as predictors of personal wellbeing after injury

Objectives:A longitudinal study examined the relationships of injury severity, whether the injury was accidental or was caused by an assault, and self-reported EQ-5D soon after injury, with long-term personal wellbeing among participants with a range of injury types and severity.Methods:Interviews with participants recruited in the Prospective Outcomes of Injury Study (POIS) were conducted up to four time points in the 24 months after injury. Key explanatory variables were New Injury Severity Score (NISS), whether the injury was accidental or resulted from assault, and self-reported health status (five EQ-5D questions and a similar question about cognition) reported at three months. The main outcome measure at 24 months was the Personal Wellbeing Index (PWI) (PWI <70=‘low’ wellbeing). Univariate and multivariable analyses examined relationships between explanatory variables and low PWI.Results:Even in a group of people with injuries traditionally regarded as being of mild or moderate anatomical severity, wellbeing continues to be affected for an appreciable time post-injury, with a quarter (27%) of study participants having a low level of personal wellbeing 24 months after their injury. Neither anatomical injury severity nor hospitalisation were predictive of low personal wellbeing. An increased risk of low personal wellbeing was observed in participants whose injury was caused by an intentional assault (rather than accident), and in those who reported problems three months post-injury with EQ-5D self-care, anxiety/depression or cognitive functioning.Conclusions:Identification of such individuals early after an injury is of particular importance and ensuring adequate support services are put in place that encourage re-integration back into work and social networks could help prevent on-going poor wellbeing

Reflections on the Prospective Outcomes of Injury Study (POIS; 2006-2023): how population-based research can address Māori outcomes and governance

Injury is a leading cause of disability. Twenty years ago, we knew financial costs of injury were high but little was known about the short, medium and long-term outcomes after injury. In 2006, a Pilot Study and engagement with Māori across the country was undertaken to discuss the planned main study to understand how best to design a study that was meaningful and beneficial to Māori and policy-makers. Between 2007–2009, 2,856 injured New Zealanders (including 20% Māori) with an Accident Compensation Corporation (ACC) entitlement claim were recruited to the Prospective Outcomes of Injury Study (POIS). Participants shared detailed information (at 3, 12 and 24 months, and 12-years post-injury) about a broad range of topics including: the injury, socio-demographics, health, health services access, employment and wellbeing. Administrative data about injury-related hospitalisations, the sentinel injury and subsequent injuries were also collected, as well as in-depth qualitative interviews. This paper focuses on the why, how and impacts of POIS, especially in relation to Māori design and approaches, capability and capacity building, and leadership. Focusing on these aspects for Māori within POIS over time has ensured delivery of findings capable of informing and improving outcomes and policy. In particular, POIS has had considerable impact, influencing ACC's research strategy and outcomes' focus, and has provided disability, health, and wellbeing outcomes knowledge previously unavailable, especially for Māori

A cohort study of short-term functional outcomes following injury: the role of pre-injury socio-demographic and health characteristics, injury and injury-related healthcare

<p>Abstract</p> <p>Background</p> <p>Injury outcome studies have tended to collect limited pre-injury characteristics, focus on a narrow range of injury types, predictors and outcomes, and be restricted to high threat to life injuries. We sought to identify the role of pre-injury socio-demographic and health characteristics, injury and injury-related healthcare in determining short-term functional outcomes for a wide range of injuries.</p> <p>Methods</p> <p>Study participants (aged 18-64 years inclusive) were those in the Prospective Outcomes of Injury Study, a cohort of 2856 persons who were injured and registered with New Zealand's national no-fault injury insurance agency. All information used in this paper was obtained directly from the participants, primarily by telephone interviews, approximately three months after their injury. The functional outcomes of interest were the five dimensions of the EQ-5D plus a cognitive dimension. We initially examined bivariate relationships between our independent measures and the dependent measures. Our multivariate analyses included adjustment for pre-injury EQ-5D status and time between injury and when information was obtained from participants.</p> <p>Results</p> <p>Substantial portions of participants continued to have adverse outcomes approximately three months after their injury. Key pervasive factors predicting adverse outcomes were: being female, prior chronic illness, injuries to multiple body regions, being hospitalized for injury, self-perceived threat to life, and difficulty accessing health services.</p> <p>Conclusion</p> <p>Future injury outcome studies should include participants whose injuries are considered 'minor', as judged by acute health service utilization, and also consider a wider range of potential predictors of adverse outcomes.</p

Being a quantitative interviewer: qualitatively exploring interviewers' experiences in a longitudinal cohort study

<p>Abstract</p> <p>Background</p> <p>Many studies of health outcomes rely on data collected by interviewers administering highly-structured (quantitative) questionnaires to participants. Little appears to be known about the experiences of such interviewers. This paper explores interviewer experiences of working on a longitudinal study in New Zealand (the Prospective Outcomes of injury Study - POIS). Interviewers administer highly-structured questionnaires to participants, usually by telephone, and enter data into a secure computer program. The research team had expectations of interviewers including: consistent questionnaire administration, timeliness, proportions of potential participants recruited and an empathetic communication style. This paper presents results of a focus group to qualitatively explore with the team of interviewers their experiences, problems encountered, strategies, support systems used and training.</p> <p>Methods</p> <p>A focus group with interviewers involved in the POIS interviews was held; it was audio-recorded and transcribed. The analytical method was thematic, with output intended to be descriptive and interpretive.</p> <p>Results</p> <p>Nine interviewers participated in the focus group (average time in interviewer role was 31 months). Key themes were: 1) the positive aspects of the quantitative interviewer role (i.e. relationships and resilience, insights gained, and participants' feedback), 2) difficulties interviewers encountered and solutions identified (i.e. stories lost or incomplete, forgotten appointments, telling the stories, acknowledging distress, stories reflected and debriefing and support), and 3) meeting POIS researcher expectations (i.e. performance standards, time-keeping, dealing exclusively with the participant and maintaining privacy).</p> <p>Conclusions</p> <p>Interviewers demonstrated great skill in the way they negotiated research team expectations whilst managing the relationships with participants. Interviewers found it helpful to have a research protocol in place in the event of sensitive situations - this appeared to alleviate the pressure on interviewers to carry the burden of responsibility. Interviewers are employed to scientifically gather quantitative data, yet their effectiveness relies largely on their humanity. We propose that the personal connection generated between the interviewers and participants was important, and enabled successful follow-up rates for the study. The enjoyment of these relationships was crucial to interviewers and helped balance the negative aspects of their role. Our results suggest that experienced quantitative interviewers endeavour, as do many qualitative researchers, to carefully and respectfully negotiate the requirements of the interview within a relationship they form with participants: being sensitive to the needs of participants and respectful of their wishes - and establishing an ethical relationship.</p

A systematic review of studies measuring health-related quality of life of general injury populations: Update 2010-2018

Background: Studies examining the impact of injury on health-related quality of life (HRQL) over time are necessary to understand the short-and long-Term consequences of injury for population health. The aim of this systematic review was to provide an evidence update on studies that have measured HRQL over time in general injury populations using a generic (general) health state measure. Methods: Studies conducted between 2010 and 2018 that assessed HRQL at more than one time point among general injury populations were eligible for inclusion. Two reviewers independently extracted information from each study on design, HRQL measure used, method of HRQL measure administration, timing of assessment(s), predictive variables, ability to detect change, and findings. Quality appraisals of each study were also completed by two reviewers using items from the RTI Item Bank on Risk of Bias and Precision of Observational Studies and the Guidelines for the Conduction of Follow-up Studies Measuring Injury-Related Disability. Results: Twenty-nine studies (44 articles) that met the inclusion criteria were identified. HRQL was measured using 14 different generic measures; the SF-36, SF-12, and EQ-5D were used most frequently. A varying number of follow-up assessments were undertaken, ranging from one to five. Follow-up often occurred 12 months post-injury. Fewer studies (n = 11) examined outcomes two or more years post-injury, and only one to 10 years post-injury. While most studies documented improvements in HRQL over time since the injury event, study populations had not returned to pre-injury status or reached general population norm HRQL values at post-injury follow-ups. Conclusions: Since 2010 there has been a substantial increase in the number of studies evaluating the HRQL of general injury populations. However, significant variability in study design continues to impede quantification of the impact of injury on population health over time. Variation between studies is particularly evident with respect to timing and number of follow-up assessments, and selection of instruments to evaluate HRQL

A new tool for creating personal and social EQ-5D-5L value sets, including valuing ‘dead’

A new online tool for creating personal and social EQ-5D-5L value sets was recently developed and trialled in New Zealand (NZ). Health state values for each participant are determined using the PAPRIKA method – in the present context, a novel type of adaptive discrete choice experiment – and any health states worse than dead are identified using a binary search algorithm. Following testing and refinement, the tool was distributed in an online survey to a representative sample of NZ adults (N=5112), whose personal value sets were created. Extensive data quality checks were performed, resulting in a ‘high-quality’ sub-sample of 2468 participants whose personal value sets were, in effect, averaged to create a social value set for NZ, as represented by social ‘disutility coefficients’ (consistent with the EQ-5D literature). These results overall and participants’ feedback indicate that the new valuation tool is feasible and acceptable to participants and enables valuation data to be relatively easily and cheaply collected. The tool could also be used in other countries, tested against other methods for creating EQ-5D-5L value sets, applied in personalised medicine and adapted to create value sets for other health descriptive systems

A New Approach to Assessing Children’s Interpretation of Severity Qualifiers in a Multi-Attribute Utility Instrument–The EQ-5D-Y-5L: Development and Testing

Introduction The beta EQ-5D-Y-5L is a new patient-reported outcome measure (PROM) for children aged 8–15 years that is currently under development by the EuroQol Group. The EQ-5D-Y-5L is similar to the EQ-5D-Y but has five levels of severity per dimension rather than three. The increased number of levels increases the granularity of the responses but possibly has also increased the difficulty of distinguishing between levels. The EuroQoL’s Version Management Committee (VMC) required a robust method to determine how well children distinguish between the five EQ-5D-Y-5L ordinal severity qualifiers (i.e. ‘no problems’ through to ‘extreme problems’), which are a critical aspect of both health measurement and the valuation of health states. Objective This paper describes the development, testing, selection, and piloting of such a method. Methods Following a literature review and consultation with the wider VMC and a Language Support Services agency, a range of exercises were developed to assess the ordering and comprehension of the five severity qualifiers. Three exercises were pre-tested with children in Spain and New Zealand. One exercise, preferred and understood by children, was then piloted. Results Five children in Spain and 11 in New Zealand tested the three exercises. In both countries, all children found the three exercises easy to understand and complete. Of the 12 children who expressed a preference, nine said they preferred the card ranking. Card ranking also allowed the interviewer to observe difficult choices being made as the children physically rearranged the card order until they settled on their final order. Following rigorous assessment of translatability and cultural portability by an independent Language Support Service, card ranking was piloted in South Africa (n = 9) and in Indonesia (n = 10), where it highlighted severity qualifier order inversions that would otherwise not have been detected. Conclusion The card ranking exercise was found to be a preferred and acceptable means of testing the ordering of translations of severity qualifiers among children. Additional formal testing of the exercise in other countries and languages is now underway. The approach developed and tested by the VMC for cognitive debriefing of beta EQ-5D-Y-5L language/country versions may also be useful in determining the adequacy of translated qualifiers in debriefing of adult EQ-5D-5L versions and other PROMs