Review of SIPHER-7 wellbeing indicators

The SIPHER (Systems Science in Public Health and Health Economics Research) Consortium examines the complex causal relationships between upstream policies and wellbeing, economic and equality outcomes, and in so doing, it needs a common set of wellbeing indicators. SIPHER-7 is a suite of seven wellbeing indicators developed for this purpose between October 2019 and February 2020. This note reports on a subsequent review conducted in March 2022, to improve the clarity of the item wording, and the link between SIPHER-7 and the UK Household Longitudinal Study (“Understanding Society”)

Patient preferences for pilonidal sinus treatments: a discrete choice experiment survey

Aim A range of treatments are available for pilonidal sinus disease (PSD), each of which has a different risk/benefit profile. The aim of this study was to collect patient views on which interventions they would rather avoid and which outcomes they most value for PSD. Method We conducted an online survey using the discrete choice experiment (DCE) method. The DCE task involved participants choosing the best treatment option when presented with a set of competing hypothetical treatment profiles. Participants with symptomatic PSD referred for elective surgery were recruited from 33 National Health Service trusts between 2020 and 2022. Collected DCE data were analysed using regression analyses. Results In all, 111 participants completed the survey. In the overall group, low risk of infection/persistence was the most important characteristic when making a treatment decision (attribute importance score 70%), followed by treatments with shorter recovery time with an attribute importance score of 30%. The results demonstrated that patients are willing to accept trade-offs between treatment recovery time and risk of infection/persistence. Patients above 30 years old are willing to accept a higher chance of treatment failure in exchange for rapid treatment recovery (risk tolerance between 22.35 and 34.67 percentage points). Conversely, patients in the younger age groups were risk averse and were only willing to accept a small risk of 1.51–2.15 in exchange for a treatment with faster recovery time. All patient groups appear to the reject the excision and leave open technique due to the need for protracted nursing care. Conclusion This study highlights the need for shared decision making when it comes to surgery for PSD

The impact of care farms on quality of life, depression and anxiety among different population groups : a systematic review

Care farming (also called social farming) is the therapeutic use of agricultural and farming practices. Service users and communities supported through care farming include people with learning disabilities, mental and physical health problems, substance misuse, adult offenders, disaffected youth, socially isolated older people and the long term unemployed. Care farming is growing in popularity, especially around Europe. This review aimed to understand the impact of care farming on quality of life, depression and anxiety, on a range of service user groups. It also aimed to explore and explain the way in which care farming might work for different groups. By reviewing interview studies we found that people valued, among other things, being in contact with each other, and feeling a sense of achievement, fulfilment and belonging. Some groups seemed to appreciate different things indicating that different groups may benefit in different ways but, it is unclear if this is due to a difference in the types of activities or the way in which people take different things from the same activity. We found no evidence that care farms improved people’s quality of life and some evidence that they might improve depression and anxiety. Larger studies involving single service user groups and fully validated outcome measures are needed to prove more conclusive evidence about the benefits of care farming

Patient decision‐making and regret in pilonidal sinus surgery: a mixed‐methods study

Aim Little is known about optimal management strategies for pilonidal sinus disease (PSD). We conducted a mixed‐methods study to understand why patients make, and sometimes regret, treatment decisions. Method We conducted longitudinal semi‐structured interviews at the time of surgery and 6 months later with 20 patients from 13 UK hospitals. Framework analysis was performed, and themes were mapped to (1) the coping in deliberation framework and (2) an acceptability framework. Results were triangulated with those from structured survey instruments evaluating shared decision‐making (SDM, best = 9) at baseline and decision regret (DR, most regret = 100) at 6 months. Results Nine of 20 patients were not offered a choice of treatment, but this was not necessarily seen as negative (SDM median 4; range 2–4). Factors that influenced decision‐making included previous experience and anticipated recovery time. Median (range) DR was 5 (0–50). Those with the highest DR (scores 40–50) were, paradoxically, also amongst the highest scores on SDM (scores 4). Burden of wound care and the disparity between anticipated and actual recovery time were the main reasons for decision regret. Conclusion To minimize regret about surgical decisions, people with PSD need better information about the burden of wound care and the risks of recurrence associated with different surgical approaches

Erratum to: Methods for evaluating medical tests and biomarkers

[This corrects the article DOI: 10.1186/s41512-016-0001-y.]

Erratum to: Methods for evaluating medical tests and biomarkers

[This corrects the article DOI: 10.1186/s41512-016-0001-y.]

Evidence synthesis to inform model-based cost-effectiveness evaluations of diagnostic tests: a methodological systematic review of health technology assessments

Background: Evaluations of diagnostic tests are challenging because of the indirect nature of their impact on patient outcomes. Model-based health economic evaluations of tests allow different types of evidence from various sources to be incorporated and enable cost-effectiveness estimates to be made beyond the duration of available study data. To parameterize a health-economic model fully, all the ways a test impacts on patient health must be quantified, including but not limited to diagnostic test accuracy. Methods: We assessed all UK NIHR HTA reports published May 2009-July 2015. Reports were included if they evaluated a diagnostic test, included a model-based health economic evaluation and included a systematic review and meta-analysis of test accuracy. From each eligible report we extracted information on the following topics: 1) what evidence aside from test accuracy was searched for and synthesised, 2) which methods were used to synthesise test accuracy evidence and how did the results inform the economic model, 3) how/whether threshold effects were explored, 4) how the potential dependency between multiple tests in a pathway was accounted for, and 5) for evaluations of tests targeted at the primary care setting, how evidence from differing healthcare settings was incorporated. Results: The bivariate or HSROC model was implemented in 20/22 reports that met all inclusion criteria. Test accuracy data for health economic modelling was obtained from meta-analyses completely in four reports, partially in fourteen reports and not at all in four reports. Only 2/7 reports that used a quantitative test gave clear threshold recommendations. All 22 reports explored the effect of uncertainty in accuracy parameters but most of those that used multiple tests did not allow for dependence between test results. 7/22 tests were potentially suitable for primary care but the majority found limited evidence on test accuracy in primary care settings. Conclusions: The uptake of appropriate meta-analysis methods for synthesising evidence on diagnostic test accuracy in UK NIHR HTAs has improved in recent years. Future research should focus on other evidence requirements for cost-effectiveness assessment, threshold effects for quantitative tests and the impact of multiple diagnostic tests

Patient preferences for pilonidal sinus treatments:A discrete choice experiment survey

Aim: A range of treatments are available for pilonidal sinus disease (PSD), each of which has a different risk/benefit profile. The aim of this study was to collect patient views on which interventions they would rather avoid and which outcomes they most value for PSD.Method: We conducted an online survey using the discrete choice experiment (DCE) method. The DCE task involved participants choosing the best treatment option when presented with a set of competing hypothetical treatment profiles. Participants with symptomatic PSD referred for elective surgery were recruited from 33 National Health Service trusts between 2020 and 2022. Collected DCE data were analysed using regression analyses.Results: In all, 111 participants completed the survey. In the overall group, low risk of infection/persistence was the most important characteristic when making a treatment decision (attribute importance score 70%), followed by treatments with shorter recovery time with an attribute importance score of 30%. The results demonstrated that patients are willing to accept trade-offs between treatment recovery time and risk of infection/persistence. Patients above 30 years old are willing to accept a higher chance of treatment failure in exchange for rapid treatment recovery (risk tolerance between 22.35 and 34.67 percentage points). Conversely, patients in the younger age groups were risk averse and were only willing to accept a small risk of 1.51–2.15 in exchange for a treatment with faster recovery time. All patient groups appear to the reject the excision and leave open technique due to the need for protracted nursing care.Conclusion: This study highlights the need for shared decision making when it comes to surgery for PSD

Patient preferences and current practice for adults with steroid-resistant ulcerative colitis: POPSTER mixed-methods study.

BackgroundCorticosteroids are a mainstay of the treatment of moderately severe relapses of ulcerative colitis, yet almost 50% of patients do not respond fully to these and risk prolonged steroid use and side effects. There is a lack of clarity about the definitions of steroid resistance, the optimum choice of treatment, and patient and health-care professional treatment preferences.ObjectivesThe overall aim of this research was to understand how steroid-resistant ulcerative colitis is managed in adult secondary care and how current practice compares with patient and health-care professional preferences.DesignA mixed-methods study, including an online survey, qualitative interviews and discrete choice experiments.SettingNHS inflammatory bowel disease services in the UK.ParticipantsAdults with ulcerative colitis and health-care professionals treating inflammatory bowel disease.ResultsWe carried out a survey of health-care professionals (n = 168), qualitative interviews with health-care professionals (n = 20) and patients (n = 33), discrete choice experiments with health-care professionals (n = 116) and patients (n = 115), and a multistakeholder workshop (n = 9). The interviews with and survey of health-care professionals showed that most health-care professionals define steroid resistance as an incomplete response to 40 mg per day of prednisolone after 2 weeks. The survey also found that anti-tumour necrosis factor drugs (particularly infliximab) are the most frequently offered drugs across most steroid-resistant (and steroid-dependent) patient scenarios, but they are less frequently offered to thiopurine-naive patients. Patient interviews identified several factors influencing their treatment choices, including effectiveness of treatment, recommendations from health-care professionals, route of administration and side effects. Over time, depending on the severity and duration of symptoms and, crucially, as medical treatment options become exhausted, patients are willing to try alternative treatments and, eventually, to undergo surgery. The discrete choice experiments found that the probability of remission and of side effects strongly influences the treatment choices of both patients and health-care professionals. Patients are less likely to choose a treatment that takes longer to improve symptoms. Health-care professionals are willing to make difficult compromises by tolerating greater safety risks in exchange for therapeutic benefits. The treatments ranked most positively by patients were infliximab and tofacitinib (each preferred by 38% of patients), and the predicted probability of uptake by health-care professionals was greatest for infliximab (62%).LimitationsThe survey and the discrete choice experiments with patients and health-care professionals are limited by their relatively small sample sizes. The qualitative studies are subject to selection bias. The timing of the different substudies, both before and during the COVID-19 pandemic, is a potential limitation.ConclusionsWe have identified factors influencing treatment decisions for steroid-resistant ulcerative colitis and the characteristics to consider when choosing treatments to evaluate in future randomised controlled trials. The findings may be used to improve discussions between patients and health-care professionals when they review treatment options for steroid-resistant ulcerative colitis.Future workThis research highlights the need for consensus work to establish an agreed definition of steroid resistance in ulcerative colitis and a greater understanding of the optimal use of tofacitinib and surgery for this patient group. A randomised controlled trial comparing infliximab with tofacitinib is also recommended.FundingThis project was funded by the National Institute for Health and Care Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 26, No. 41. See the NIHR Journals Library website for further project information