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

Treatment options for patients with pilonidal sinus disease:PITSTOP, a mixed-methods evaluation

Background:There is no consensus on optimal management of pilonidal disease. Surgical practice is varied, and existing literature is mainly single-centre cohort studies of varied disease severity, interventions and outcome assessments.Objectives:A prospective cohort study to determine:•disease severity and intervention relationship•most valued outcomes and treatment preference by patients•recommendations for policy and future research.Design:Observational cohort study with nested mixed-methods case study. Discrete choice experiment. Clinician survey. Three-stage Delphi survey for patients and clinicians. Inter-rater reliability of classification system.Setting:Thirty-one National Health Service trusts.Participants:Patients aged > 16 years referred for elective surgical treatment of pilonidal disease.Interventions:Surgery.Main outcome measures: Pain postoperative days 1 and 7, time to healing and return to normal activities, complications, recurrence. Outcomes compared between major and minor procedures using regression modelling, propensity score-based approaches and augmented inverse probability weighting to account for measured potential confounding features.Results: Clinician survey: There was significant heterogeneity in surgeon practice preference. Limited training opportunities may impede efforts to improve practice.Cohort study: Over half of patients (60%; N = 667) had a major procedure. For these procedures, pain was greater on day 1 and day 7 (mean difference day 1 pain 1.58 points, 95% confidence interval 1.14 to 2.01 points, n = 536; mean difference day 7 pain 1.53 points, 95% confidence interval 1.12 to 1.95 points, n = 512). There were higher complication rates (adjusted risk difference 17.5%, 95% confidence interval 9.1 to 25.9%, n = 579), lower recurrence (adjusted risk difference −10.1%, 95% confidence interval −18.1 to −2.1%, n = 575), and longer time to healing (>34 days estimated difference) and time to return to normal activities (difference 25.9 days, 95% confidence interval 18.4 to 33.4 days).Mixed-methods analysis: Patient decision-making was influenced by prior experience of disease and anticipated recovery time. The burden involved in wound care and the gap between expected and actual time for recovery were the principal reasons given for decision regret.Discrete choice experiment: The strongest predictors of patient treatment choice were risk of infection/persistence (attribute importance 70%), and shorter recovery time (attribute importance 30%). Patients were willing to trade off these attributes. Those aged over 30 years had a higher risk tolerance (22.35–34.67%) for treatment failure if they could experience rapid recovery. There was no strong evidence that younger patients were willing to accept higher risk of treatment failure in exchange for a faster recovery. Patients were uniform in rejecting excision-and-leave-open because of the protracted nursing care it entailed.Wysocki classification analysis: There was acceptable inter-rater agreement (κ = 0.52, 95% confidence interval 0.42 to 0.61).Consensus exercise: Five research and practice priorities were identified. The top research priority was that a comparative trial should broadly group interventions. The top practice priority was that any interventions should be less disruptive than the disease itself.LimitationsIncomplete recruitment and follow-up data were an issue, particularly given the multiple interventions. Assumptions were made regarding risk adjustment.Conclusions and future workResults suggest the burden of pilonidal surgery is greater than reported previously. This can be mitigated with better selection of intervention according to disease type and patient desired goals. Results indicate a framework for future higher-quality trials that stratify disease and utilise broad groupings of common interventions with development of a patient-centred core outcome set.Trial registrationThis trial is registered as ISRCTN95551898.FundingThis award was funded by the National Institute for Health and Care Research (NIHR) Health Technology Assessment programme (NIHR award ref: 17/17/02) and is published in full in Health Technology Assessment; Vol. 28, No. 33. See the NIHR Funding and Awards website for further award information

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

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 Paradyn Parallel Performance Measurement Tools

Paradyn is a performance measurement tool for parallel and distributed programs. Paradyn uses several novel technologies so that it scales to long running programs (hours or days) and large (thousand node) systems, and automates much of the search for performance bottlenecks. It can provide precise performance data down to the procedure and statement level. Paradyn is based on a dynamic notion of performance instrumentation and measurement. Unmodified executable files are placed into execution and then performance instrumentation is inserted into the application program and modified during execution. The instrumentation is controlled by the Performance Consultant module, that automatically directs the placement of instrumentation. The Performance Consultant has a well-defined notion of performance bottlenecks and program structure, so that it can associate bottlenecks with specific causes and specific parts of a program. Paradyn controls its instrumentation overhead by monitoring the c..