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We lead multidisciplinary applied research and training to rethink the way health care is delivered in general practice and across the community.
Caring for Carers: Positive and Normative Challenges for Future Research on Carer Spillover Effects in Economic Evaluation
Background: Many individuals rely on family and friends to provide care outside of the formal healthcare sector. The need for caring is driven by many factors, including government policies toward health and social care, and increased prevalence of chronic and comorbid conditions. Informal care may give rise to “spillover” effects from the health of a cared-for individual to the health of carers. Spillover effects are rarely reflected in economic evaluations, in spite of growing research interest in this area, and recommendations from bodies such as the National Institute for Health and Care Excellence (NICE) and the Second Panel on Cost-Effectiveness that effects of this type be included in cost-effectiveness analysis. Objective: We explore the positive and normative issues to which the inclusion of carer spillover effects in economic evaluation may give rise and how future research might begin to address these challenges. Results: Positive challenges include the identification of causal rather than coincidental impacts on carers, selection into caring, and the measurement and treatment of spillover effects. The normative issues are related to these challenges, and particularly include impacts on equity, and spillovers that improve rather than reduce the health of carers. Conclusions: We argue that challenges including spillover effects in economic evaluation are considerable. Avenues for future research and possible solutions to these challenges include a re-orientation of analytic perspectives so that the impacts of caring on carers are accounted for where appropriate, and the design of studies to collect robust evidence to inform debate and guidance development in this area.
The association between adiposity and inpatient hospital costs in the UK Biobank cohort
ABSTRACT Background High adiposity is associated with higher risks for a variety of adverse health outcomes, including higher rates of age-adjusted mortality and increased morbidity. This has important implications for the management of healthcare systems, since the endocrinal, cardiometabolic and other changes associated with increased adiposity may be associated with substantial healthcare costs. Methods We studied the association between various measures of adiposity and inpatient hospital costs through record linkage between UK Biobank and records of inpatient care in England and Wales. UK Biobank is a large prospective cohort study that aimed to recruit men and women aged between 40 and 69 from 2006 to 2010. We applied generalised linear models to cost per person year to estimate the marginal effect and averaged adjusted predicted cost of adiposity on inpatient costs. Results Valid cost and body mass index (BMI) data from 457,689 participants were available for inferential analysis. Some 54.4% of individuals included in the analysis sample had positive inpatient healthcare costs over the period of follow-up. Median hospital costs per person year of follow-up were £89, compared to mean costs of £481. Mean BMI overall was 27.4 kg/m2 (standard deviation 4.8). The marginal effect of a unit increase in BMI was £13.61 (99% confidence interval: £12.60 to £14.63) per person year of follow up. The marginal effect of a standard deviation increase in BMI was £69.20 (99% confidence interval: £64.98 to £73.42). The marginal effect of becoming obese was £136.35 (99% confidence interval: £124.62 to £148.08). Average adjusted predicted inpatient hospital costs increased almost linearly when modelled using continuous measure of adiposity. Sensitivity analysis of different scenarios did not substantially change these conclusions, although there was some evidence of attenuation of the effects of adiposity when controlling for waist-hip ratios, and when individuals who self-reported any pre-existing conditions were excluded from analysis. Conclusions Higher adiposity is associated with higher inpatient hospital costs. Further scrutiny using causal inferential methods is warranted to establish if further public health investments are required to manage the large healthcare costs observationally associated with overweight and obesity.
Cost-Consequence Analysis Alongside a Randomised Controlled Trial of Hospital Versus Telephone Follow-Up after Treatment for Endometrial Cancer
Background: Regular outpatient follow-up programmes are usually offered to patients following treatment for gynaecological and other cancers. Despite the substantial resources involved in providing these programmes, there is evidence that routine follow-up programmes do not affect survival or the likelihood of detecting recurrence and may not meet patient needs. Alternative follow-up modalities may offer the same outcomes at lower cost. We examined the costs of using telephone-based routine follow-up of women treated for endometrial cancer undertaken by specialist gynaecology oncology nurses in comparison to routine hospital-based follow-up. Methods: The ENDCAT trial randomised 259 women at five centres in the north west of England with a known diagnosis of Stage I endometrial cancer who had completed primary treatment on a 1:1 basis to receive either standard hospital outpatient follow-up or a telephone follow-up intervention administered by specialist nurses. A cost-consequence analysis was undertaken in which we compared costs to the health system and to individuals with the trial’s co-primary outcomes of psychological morbidity and participant satisfaction with information received. Results: Psychological morbidity, psychosocial needs, patient satisfaction and quality of life did not differ between arms. Patients randomised to telephone follow-up underwent more and longer consultations. There was no difference in total health service mean per patient costs at 6 months (mean difference £8, 95% percentile confidence interval: − £147 to £141) or 12 months (mean difference: − £77, 95% percentile confidence interval: − £334 to £154). Estimated return journey costs per patient for hospital consultations were £11.47. Productivity costs were approximately twice as high under hospital follow-up. Conclusion: Telephone follow-up was estimated to be cost-neutral for the NHS and may free up clinic time for other patients. There was some evidence that telephone follow-up may be more efficient for patients and wider society, and is not associated with additional psychological morbidity, lower patient satisfaction or reduced quality of life. Trial Registration: ISRCTN: 75220876, prospectively registered 28 October 2011.
A randomised controlled trial assessing the severity and duration of depressive symptoms associated with a clinically significant response to sertraline versus placebo, in people presenting to primary care with depression (PANDA trial): study protocol for a randomised controlled trial
BACKGROUND: Depressive symptoms are usually managed within primary care and antidepressant medication constitutes the first-line treatment. It remains unclear at present which people are more likely to benefit from antidepressant medication. This paper describes the protocol for a randomised controlled trial (PANDA) to investigate the severity and duration of depressive symptoms that are associated with a clinically significant response to sertraline compared to placebo, in people presenting to primary care with depression.
Feasibility cluster randomised controlled trial of a within-consultation intervention to reduce antibiotic prescribing for children presenting to primary care with acute respiratory tract infection and cough
Objective To investigate recruitment and retention, data collection methods and the acceptability of a ? € within-consultation' complex intervention designed to reduce antibiotic prescribing. Design Primary care feasibility cluster randomised controlled trial. Setting 32 general practices in South West England recruiting children from October 2014 to April 2015. Participants Children (aged 3 months to <12 years) with acute cough and respiratory tract infection (RTI). Intervention A web-based clinician-focussed clinical rule to predict risk of future hospitalisation and a printed leaflet with individualised child health information for carers, safety-netting advice and a treatment decision record. Controls Usual practice, with clinicians recording data on symptoms, signs and treatment decisions. Results Of 542 children invited, 501 (92.4%) consented to participate, a month ahead of schedule. Antibiotic prescribing data were collected for all children, follow-up data for 495 (98.8%) and the National Health Service resource use data for 494 (98.6%). The overall antibiotic prescribing rates for children's RTIs were 25% and 15.8% (p=0.018) in intervention and control groups, respectively. We found evidence of postrandomisation differential recruitment: The number of children recruited to the intervention arm was higher (292 vs 209); over half were recruited by prescribing nurses compared with less than a third in the control arm; children in the intervention arm were younger (median age 2 vs 3 years controls, p=0.03) and appeared to be more unwell than those in the control arm with higher respiratory rates (p<0.0001), wheeze prevalence (p=0.007) and global illness severity scores assessed by carers (p=0.045) and clinicians (p=0.01). Interviews with clinicians confirmed preferential recruitment of less unwell children to the trial, more so in the control arm. Conclusion Differential recruitment may explain the paradoxical antibiotic prescribing rates. Future cluster level studies should consider designs which remove the need for individual consent postrandomisation and embed the intervention within electronic primary care records.
Estimating Marginal Healthcare Costs Using Genetic Variants as Instrumental Variables: Mendelian Randomization in Economic Evaluation
Accurate measurement of the marginal healthcare costs associated with different diseases and health conditions is important, especially for increasingly prevalent conditions such as obesity. However, existing observational study designs cannot identify the causal impact of disease on healthcare costs. This paper explores the possibilities for causal inference offered by Mendelian randomization, a form of instrumental variable analysis that uses genetic variation as a proxy for modifiable risk exposures, to estimate the effect of health conditions on cost. Well-conducted genome-wide association studies provide robust evidence of the associations of genetic variants with health conditions or disease risk factors. The subsequent causal effects of these health conditions on cost can be estimated using genetic variants as instruments for the health conditions. This is because the approximately random allocation of genotypes at conception means that many genetic variants are orthogonal to observable and unobservable confounders. Datasets with linked genotypic and resource use information obtained from electronic medical records or from routinely collected administrative data are now becoming available and will facilitate this form of analysis. We describe some of the methodological issues that arise in this type of analysis, which we illustrate by considering how Mendelian randomization could be used to estimate the causal impact of obesity, a complex trait, on healthcare costs. We describe some of the data sources that could be used for this type of analysis. We conclude by considering the challenges and opportunities offered by Mendelian randomization for economic evaluation.
Did It Matter That the Cancer Drugs Fund Was Not NICE? A Retrospective Review
Background The Cancer Drugs Fund (CDF) will have spent more than £1 billion between October 2010 and the introduction of reforms to its structure and operations in July 2016. There has been much more debate about the existence of the fund than about how it spent its substantial budget. It is important to undertake a retrospective examination of “where the money went” in light of the substantial reforms that will be introduced in 2016. Objectives We review the means by which the CDF made recent funding decisions for cancer drugs to provide an assessment of the merits of the CDF “model” as a basis for allocation decisions. We assess the extent to which proposed reforms could overcome defects in the original CDF model of prioritization, and lessons for other countries. Methods We provide a narrative commentary on CDF's methods and processes since 2014. We evaluate methods against best practice in cost-effectiveness analysis, and processes against the “accountability for reasonableness” framework. We comment on reforms to the fund. Results There are no grounds for concluding that the opportunity costs imposed on cancer patients were well evidenced, or the product of legitimate deliberative processes. We note that some of these issues will be addressed in the next incarnation of the fund, but the rationale for the fund's existence remains unconvincing. Conclusions It is important and timely to debate how cancer drugs appraisal ought to be conducted to confront the consequences of CDF's model of appraisal. We conclude that it did matter that the CDF was not NICE.
Cost-effectiveness of telehealth for patients with raised cardiovascular disease risk: Evidence from the Healthlines randomised controlled trial
Objectives: To investigate the cost-effectiveness of a telehealth intervention for primary care patients with raised cardiovascular disease (CVD) risk. Design: A prospective within-trial patient-level economic evaluation conducted alongside a randomised controlled trial. Setting: Patients recruited through primary care, and intervention delivered via telehealth service. Participants: Adults with a 10-year CVD risk ≥20%, as measured by the QRISK2 algorithm, with at least 1 modifiable risk factor. Intervention: A series of up to 13 scripted, theory-led telehealth encounters with healthcare advisors, who supported participants to make behaviour change, use online resources, optimise medication and improve adherence. Participants in the control arm received usual care. Primary and secondary outcome measures: Cost-effectiveness measured by net monetary benefit at the end of 12 months of follow-up, calculated from incremental cost and incremental quality-adjusted life years (QALYs). Productivity impacts, participant out-ofpocket expenditure and the clinical outcome were presented in a cost-consequences framework. Results: 641 participants were randomised¡325 to receive the telehealth intervention in addition to usual care and 316 to receive only usual care. 18% of participants had missing data on either costs, utilities or both. Multiple imputation was used for the base case results. The intervention was associated with incremental mean per-patient National Health Service (NHS) costs of σ138 (95% CI 66 to 211) and an incremental QALY gain of 0.012 (95% CI.0.001 to 0.026). The incremental cost-effectiveness ratio was σ10 859. Net monetary benefit at a cost-effectiveness threshold of σ20 000 per QALY was σ116 (95% CI.58 to 291), and the probability that the intervention was cost-effective at this threshold value was 0.77. Similar results were obtained from a complete case analysis. Conclusions: There is evidence to suggest that the Healthlines telehealth intervention was likely to be costeffective at a threshold of σ20 000 per QALY.
Generic and disease-specific estimates of quality of life in macular degeneration: mapping the MacDQoL onto the EQ-5D-3L
Purpose: The macular degeneration quality of life (MacDQoL) instrument is a validated condition-specific measure of quality of life in patients with macular degeneration. This paper presents the first mapping algorithm to predict EQ-5D from responses to the MacDQoL instrument. Methods: Responses to the MacDQoL and EQ-5D-3L instruments from 482 patients were collected from the IVAN multicentre trial of two alternative drug treatments for neovascular age-related macular degeneration. Regression specifications were estimated using OLS, censored least absolute deviation, Tobit and two-part models. Their predictive performance was assessed using mean squared error. An internal validation sample based on a random selection of 25 % of patients was used to assess the performance of the model estimated on the remaining 75 % of patients. Results: A two-part model had the best predictive performance on the full sample. The covariates of this model include responses and weighted impact scores for all 23 condition-specific domains of the MacDQoL, and responses to a general MacDQoL quality of life question. The selected models were successful at predicting means and standard deviations of target populations, but prediction is weaker at the upper and lower extremes of the EQ-5D-3L distribution. Conclusion: The mapping algorithms provide a means of predicting EQ-5D-3L index scores from MacDQoL scores, and could facilitate cost-effectiveness analyses when the latter but not the former are available to researchers. Further validation of the performance of the algorithms using external data would provide a means of establishing the robustness of the algorithms.
Study protocol for an evaluation of the effectiveness of 'care bundles' as a means of improving hospital care and reducing hospital readmission for patients with chronic obstructive pulmonary disease (COPD)
Background: Chronic Obstructive Pulmonary Disease is one of the commonest respiratory diseases in the United Kingdom, accounting for 10 % of unplanned hospital admissions each year. Nearly a third of these admitted patients are re-admitted to hospital within 28 days of discharge. Whilst there is a move within the NHS to ensure that people with long-term conditions receive more co-ordinated care, there is little research evidence to support an optimum approach to this in COPD. This study aims to evaluate the effectiveness of introducing standardised packages of care i.e. care bundles, for patients with acute exacerbations of COPD as a means of improving hospital care and reducing re-admissions. Methods / Design: This mixed-methods evaluation will use a controlled before-and-after design to examine the effect of, and costs associated with, implementing care bundles for patients admitted to hospital with an acute exacerbation of COPD, compared with usual care. It will quantitatively measure a range of patient and organisational outcomes for two groups of hospitals - those who deliver care using COPD care bundles, and those who deliver care without the use of COPD care bundles. These care bundles may be provided for patients with COPD following admission, prior to discharge or at both points in the care pathway. The primary outcome will be re-admission to hospital within 28 days of discharge, although the study will additionally investigate a number of secondary outcomes including length of stay, total bed days, in-hospital mortality, costs of care and patient / carer experience. A series of nested qualitative case studies will explore in detail the context and process of care as well as the impact of COPD bundles on staff, patients and carers. Discussion: The results of the study will provide information about the effectiveness of care bundles as a way of managing in-hospital care for patients with an acute exacerbation of COPD. Given the number of unplanned hospital admissions for this patient group and their rate of subsequent re-admission, it is hoped that this evaluation will make a timely contribution to the evidence on care provision, to the benefit of patients, clinicians, managers and policy-makers. Trial registration: International Standard Randomised Controlled Trials - ISRCTN13022442- 11 February 2015
Cost-effectiveness of telehealth for patients with depression: Evidence from the Healthlines randomised controlled trial
Background: Depression is a prevalent long-term condition that is associated with substantial resource use. Telehealth may offer a cost-effective means of supporting the management of people with depression. Aims: To investigate the cost-effectiveness of a telehealth intervention ('Healthlines') for patients with depression. Method: A prospective patient-level economic evaluation conducted alongside a randomised controlled trial. Patients were recruited through primary care, and the intervention was delivered via a telehealth service. Participants with a confirmed diagnosis of depression and PHQ-9 score $10 were recruited from 43 English general practices. A series of up to 10 scripted, theory-led, telephone encounters with health information advisers supported participants to effect a behaviour change, use online resources, optimise medication and improve adherence. The intervention was delivered alongside usual care and was designed to support rather than duplicate primary care. Cost-effectiveness from a combined health and social care perspective was measured by net monetary benefit at the end of 12 months of follow-up, calculated from incremental cost and incremental quality-adjusted life years (QALYs). Cost-consequence analysis included cost of lost productivity, participant out-of-pocket expenditure and the clinical outcome. Results: A total of 609 participants were randomised - 307 to receive the Healthlines intervention plus usual care and 302 to receive usual care alone. Forty-five per cent of participants had missing quality of life data, 41% had missing cost data and 51% of participants had missing data on either cost or utility, or both. Multiple imputation was used for the base-case analysis. The intervention was associated with incremental mean per-patient National Health Service/personal social services cost of £168 (95% CI £43 to £294) and an incremental QALY gain of 0.001 (95% CI −0.023 to 0.026). The incremental cost-effectiveness ratio was £132 630. Net monetary benefit at a cost-effectiveness threshold of £20 000 was −£143 (95% CI − £164 to −£122) and the probability of the intervention being cost-effective at this threshold value was 0.30. Productivity costs were higher in the intervention arm, but out-of-pocket expenses were lower. Conclusions: The Healthlines service was acceptable to patients as a means of condition management, and response to treatment after 4 months was higher for participants randomised to the intervention. However, the positive average intervention effect size was modest, and incremental costs were high relative to a small incremental QALY gain at 12 months. The intervention is not likely to be cost-effective in its current form.
Cost-effectiveness modelling of telehealth for patients with raised cardiovascular disease risk: evidence from a cohort simulation conducted alongside the Healthlines randomised controlled trial
Objectives: To investigate the long-term cost-effectiveness (measured as the ratio of incremental NHS cost to incremental quality-adjusted life years) of a telehealth intervention for patients with raised cardiovascular disease (CVD) risk. Design: A cohort simulation model developed as part of the economic evaluation conducted alongside the Healthlines randomised controlled trial. Setting: Patients recruited through primary care, and intervention delivered via telehealth service. Participants: Participants with a 10-year CVD risk ≥20%, as measured by the QRISK2 algorithm, and with at least 1 modifiable risk factor, individually randomised from 42 general practices in England. Intervention: A telehealth service delivered over a 12-month period. The intervention involved a series of responsive, theory-led encounters between patients and trained health information advisors who provided access to information resources and supported medication adherence and coordination of care. Primary and secondary outcome measures: Cost-effectiveness measured by net monetary benefit over the simulated lifetime of trial participants from a UK National Health Service perspective. Results: The probability that the intervention was cost-effective depended on the duration of the effect of the intervention. The intervention was cost-effective with high probability if effects persisted over the lifetime of intervention recipients. The probability of cost-effectiveness was lower for shorter durations of effect. Conclusions: The intervention was likely to be cost-effective under a lifetime perspective.
A systematic review of matrix-assisted laser desorption/ionisation time-of-flight mass spectrometry compared to routine microbiological methods for the time taken to identify microbial organisms from positive blood cultures
Bloodstream infections are a significant source of mortality and morbidity. Patient outcomes are improved by rapid identification of the causative pathogen and administration of appropriate antimicrobial therapy. Matrix-assisted laser desorption/ionisation time-of-flight (MALDI-TOF) mass spectrometry has recently emerged as an alternative to microbiological identification. It is important to establish whether the costs of MALDI-TOF are justified by more timely identification and appropriate therapy, reduced length of stay and reduced hospital costs. We undertook a systematic review of the literature comparing MALDI-TOF and routine methods for the identification of the aetiological agent in patients with known or suspected bloodstream infection. The primary outcome of the review was the ‘time to identify’ organisms. Information on related measures such as ‘time to appropriate antimicrobial treatment’ and downstream hospital cost was also collected where reported. Ten of 775 articles identified met the inclusion criteria. All included studies were observational. MALDI-TOF identification was at least 24 h faster than routine methods in most circumstances. MADLI-TOF was associated with a reduction in downstream hospital costs and length of stay in studies reporting these outcomes. The observational studies reviewed provide evidence of potentially substantial time savings of MALDI-TOF in pathogen identification and instigation of appropriate therapy, which may also reduce hospital stay. Due to the small number of studies, all at relatively high risk of bias, this cannot be considered as definitive evidence of the impact of MALDI-TOF. More and better evidence, including impact on patient health and cost-effectiveness, is required.
A Multisource Process Evaluation of a Community-Based Healthy Lifestyle Programme for Child and Adolescent Obesity †
Whānau Pakari is a healthy lifestyle assessment and intervention programme for children and adolescents with obesity in Taranaki (Aotearoa/New Zealand), which, in this region, replaced the nationally funded Green Prescription Active Families (GRxAF) programme. We compared national referral rates from the GRxAF programme (age 5–15 years) and the B4 School Check (B4SC, a national preschool health and development assessment) with referral rates in Taranaki from Whānau Pakari. We retrospectively analysed 5 years of clinical data (2010–2015), comparing referral rates before, during, and after the Whānau Pakari clinical trial, which was embedded within the programme. We also surveyed programme referrers and stakeholders about their experiences of Whānau Pakari, analysing their responses using a multiple-methods framework. After the Whānau Pakari trial commenced, Taranaki GRxAF referral rates increased markedly (2.3 pretrial to 7.2 per 1000 person-years), while NZ rates were largely unchanged (1.8–1.9 per 1000 person-years) (p < 0.0001 for differences during the trial). Post-trial, Taranaki GRxAF referral rates remained higher irrespective of ethnicity, being 1.8 to 3.2 times the national rates (p < 0.001). Taranaki B4SC referrals for obesity were nearly complete at 99% in the last trial year and 100% post-trial, compared with national rates threefold lower (31% and 32%, respectively; p < 0.0001), with Taranaki referral rates for extreme obesity sustained at 80% and exceeding national rates for both periods (58% and 62%, respectively; p < 0.01). Notably, a referral was 50% more likely for referrers who attended a Whānau Pakari training half-day (RR = 1.51; p = 0.009). Stakeholders credited the success of Whānau Pakari to its multidisciplinary team, family-centred approach, and home-based assessments. However, they highlighted challenges such as navigating multidisciplinary collaboration, engaging with families with complex needs, and shifting conventional healthcare practices. Given its favourable referral trends and stakeholder endorsement, Whānau Pakari appears to be a viable contemporary model for an accessible and culturally appropriate intervention on a national and potentially international scale.
Participant and caregiver perspectives on health feedback from a healthy lifestyle check
Introduction: The usual output following health consultations from paediatric services is a clinical letter to the referring professional or primary care provider, with a copy sent to the patient's caregiver. There is little research on how patients and caregivers perceive the letter content. We aimed to: first understand child, young people and caregiver experiences of and preferences for receiving a health feedback letter about the child/young person's health measures within a healthy lifestyle programme; and second to provide a set of recommendations for designing letters to children, young people and their families within a healthy lifestyle programme. Methods: This qualitative study, informed by Kaupapa Māori principles, included focus groups of children aged 5–11 years and young people aged 12–18 years who were participants in a healthy lifestyle programme in Taranaki, Aotearoa New Zealand and of their respective caregivers (total n = 47). Discussions were audio-recorded, transcribed and analysed using thematic analysis. Findings: Key themes were identified: letters sometimes acted as ‘discourses of disempowerment’—some participants experienced a lack of safety, depersonalisation with medical jargon and ‘feeling like a number’. Participants described the need for acknowledgement and affirmation in written communication—health feedback should include validation, choice regarding content, respectful tone and a strengths-based approach to health messages. Interpretation: Letters to referrers, copied to families, can be perceived as disempowering, and participant and caregiver perspectives of content should be considered. This study challenges conventional practice in communicating health feedback with broader implications for written communication in healthcare. We propose separate letters aimed at the child/young person and their caregiver that offer choice in the information they receive. The administrative burden of multiple letters can be mitigated by advances in digital health. Patient Contribution: This study originated in response to feedback from service users that current health feedback was not meeting their needs or expectations. Patient perspectives, especially from children, are rarely considered in the generation of clinic letters from health professionals. Participants were child participants in the community-based clinical service and their caregivers, and care was taken to represent the demographic backgrounds of service users. Collection and interpretation of Māori data were led by researchers who were local community members to ensure prioritisation and preservation of participant voice. Where possible, results are illustrated in the text by direct quotes from participants, whose identities are protected with a pseudonym.
In safe hands: child health data storage, linkage and consent for use
While there is potential for societal benefit from linkage and integration of large datasets, there are gaps in our understanding of the implications for children and young people, and limited inclusion of their views within this discourse. We aimed to understand the views and expectations of children, young people and their parents/caregivers in Aotearoa New Zealand regarding child health data storage, linkage and consent for use. This qualitative study included 24 Maori and non-Maori children, young people and their families across five focus groups, recruited from a community-based health service. A mixed Maori and non-Maori research team facilitated participant recruitment and data collection. Child, adolescent and parent/caregiver groups were held separately. Sessions were audio-recorded and the verbatim transcripts were analysed thematically. We identified three themes: (i) I am more than a number: seeing patients as people; (ii) In safe hands: data as power; and (iii) What are your intentions with my data? Consent as an active relationship. A key challenge was the reductive and stigmatizing potential of data integration for minoritised groups. Hypothetical discussions of data sharing and linkage were contingent on trust between the participant and the health professional, with negotiated data ownership. Consent was conceived as an active relationship needing renewal and renegotiation as children reached adulthood. Current consent processes for ongoing use of child data require further deliberation. Without a strong ethical and child rights-based approach to issues of child health data management, consent and linkage, we risk exacerbating health inequities and experiences of breach of trust.
The need to nurture Aotearoa New Zealand’s healthcare workforce
This commentary examines the ethical significance of recently published research demonstrating the extent to which healthcare workers experienced stress and increased challenges in the workplace due to inadequate access to personal protective equipment (PPE) during the first COVID-19 surge in Aotearoa New Zealand. The inadequate state of New Zealand’s PPE stockpile and distribution system at the beginning of the pandemic was a critical signal, a “canary in the coalmine”, of broader challenges facing the New Zealand healthcare system, particularly for healthcare worker safety and wellbeing. As New Zealand reforms its health system with the aim of improving access to and equity of care, an opportunity exists to apply critical lessons learnt from the COVID-19 pandemic about the need to prioritise the wellbeing of the healthcare workers we are dependent upon to deliver that care. Failure to apply this new knowledge will see the system similarly unprepared for future public health emergencies, which are likely to be imminent, and potentially with healthcare workers less willing to accept the burdens placed on them. The Nurture Framework, which has emerged from the voices of healthcare workers within this research, should be adopted as part of health reforms and ongoing emergency preparedness planning. Trust, transparency, respect and safety, the four values of the Framework, are fundamental for all workers who contribute their skills, knowledge and time to our healthcare organisations.
End-user acceptability of personal protective equipment disinfection for potential reuse: a survey of health-care workers in Aotearoa New Zealand
Background: The COVID-19 pandemic has highlighted personal protective equipment (PPE) supply, distribution, and disposal issues worldwide. Calls to conserve PPE stocks and increase supply resulted in the rapid development of potential disinfection methods, with the possibility of improvements in medical waste reduction. However, how receptive health-care workers are to PPE reuse remains unknown. We aimed to examine the views of health-care workers who used PPE during the first COVID-19 wave in Aotearoa New Zealand, in relation to acceptability of PPE disinfection and reuse. Methods: In this multi-methods survey, health-care workers in New Zealand, were invited via a multimodal recruitment strategy to complete a survey regarding use of PPE during the first COVID-19 wave. Gender question options were male, female, gender diverse, or prefer not to say. Demographic differences in self-reported PPE reuse and acceptability were examined. The survey included closed (single-response, multi-response, ranking, and Likert-scale questions) and open-text questions. Any open-text comments were analysed with thematic analysis. The survey was built and deployed using Qualtrics software. Findings: 1411 health-care workers completed the survey between Oct 7 and Nov 30, 2020. 1397 participants had gender data available (1140 [82%] female and 257 [18%] male) and 995 (74%) of 1347 were of New Zealand European ethnicity. PPE reuse was common and reported by 628 (45%) of the 1411 participants, with 396 (63%) of the 628 reporting reusing PPE multiple times in 1 day. Acceptability of the concept of PPE disinfection for potential reuse was high overall (1196 [85%] of 1411) but varied depending on the type of PPE. Thematic analysis confirmed that PPE reuse was already occurring and respondents recognised the potential benefits of reduced medical wastage and increased PPE supply. Important caveats for consideration included the availability of scientific evidence, level of negotiated risk, and trust in the organisation undertaking PPE disinfection, with clear communication about decontamination processes being crucial to acceptability. Interpretation: PPE reuse occurred frequently during the first wave of COVID-19 in New Zealand. Although support for the disinfection of PPE for reuse was high, the success of any future programmes to reuse PPE will require meaningful engagement and clear communication with health-care workers. Further research into PPE disinfection safety and logistics is warranted, alongside the development of standard operating procedures and clearly communicated policies for the end user, should this more sustainable health-care practice be planned for adoption in certain settings. Funding: New Zealand Ministry of Business, Innovation and Employment (COVID-19 Innovation Acceleration Fund) and the Medical Assurance Society Foundation.
Learning from healthcare workers' experiences with personal protective equipment during the COVID-19 pandemic in Aotearoa/New Zealand: a thematic analysis and framework for future practice
Objectives Safety and welfare are critical as pandemic-related demands on the healthcare workforce continue. Access to personal protective equipment (PPE) has been a central concern of healthcare workers throughout the COVID-19 pandemic. Against the backdrop of an already strained healthcare system, our study aimed to explore the experiences of healthcare workers with PPE during the first COVID-19 surge (February-June 2020) in Aotearoa/New Zealand (NZ). We also aimed to use these findings to present a strengths-based framework for supporting healthcare workers moving forward. Design Web-based, anonymous survey including qualitative open-text questions. Questions were both closed and open text, and recruitment was multimodal. We undertook inductive thematic analysis of the dataset as a whole to explore prominent values related to healthcare workers' experiences. Setting October-November 2020 in New Zealand. Participants 1411 healthcare workers who used PPE during surge one of the COVID-19 pandemic. Results We identified four interactive values as central to healthcare workers' experiences: transparency, trust, safety and respect. When healthcare workers cited positive experiences, trust and safety were perceived as present, with a sense of inclusion in the process of stock allocation and effective communication with managers. When trust was low, with concerns over personal safety, poor communication and lack of transparency resulted in perceived lack of respect and distress among respondents. Our proposed framework presents key recommendations to support the health workforce in terms of communication relating to PPE supply and distribution built on those four values. Conclusions Healthcare worker experiences with PPE access has been likened to 'the canary in the coalmine' for existing health system challenges that have been exacerbated during the COVID-19 pandemic. The four key values identified could be used to improve healthcare worker experience in the future.
The Impact of a Family-Based Assessment and Intervention Healthy Lifestyle Programme on Health Knowledge and Beliefs of Children with Obesity and Their Families
Objective: To determine the impact of a family-based assessment-and-intervention healthy lifestyle programme on health knowledge and beliefs of children and families affected by obesity. Second, to compare the health knowledge of the programme cohort to those of a national cohort in Aotearoa/New Zealand (NZ). Design: This mixed-methods study collected health knowledge and health belief data in a questionnaire at baseline and 12-, 24-, and 60-month follow-up assessments. Health knowledge over time was compared with baseline knowledge and with data from a nationally representative survey. A data-driven subsumption approach was used to analyse open-text responses to health belief questions across the study period. Setting: Taranaki region, a mixed urban–rural setting in NZ. Participants: Participants (caregiver/child dyads) from the Whānau Pakari randomised trial. Results: A greater proportion of the cohort correctly categorised foods and drinks as healthy or unhealthy at 12 months compared to baseline for most questionnaire items. Retention of this health knowledge was evident at 24- and 60-month follow-ups. More than twice as many participants correctly reported physical activity recommendations at follow-up compared to baseline (p < 0.001). Health knowledge of participants was similar to the national survey cohort at baseline, but surpassed it at 12 and 24 months. Participant beliefs around healthy lifestyles related to physical functioning, mental and emotional wellbeing, and enhancement of appearance, and gained greater depth and detail over time. Conclusions: This study demonstrates the important role that community-level healthy lifestyle programmes can have in knowledge-sharing and health promotion.