Emily Strong

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. Limitations: Incomplete recruitment and follow-up data were an issue, particularly given the multiple interventions. Assumptions were made regarding risk adjustment. Conclusions and future work: Results 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 registration: This trial is registered as ISRCTN95551898. Funding: This 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.

Aim: Pilonidal sinus disease is a common condition treated by colorectal surgeons. There is a lack of literature in the field to guide optimal management of this condition. As part of the PITSTOP study, we aimed to identify policy and research priorities to provide direction to the field.Method: Patients and surgeons were invited to participate. A ‘So what, now what’ exercise was conducted, informed by data from PITSTOP. This generated statements for research and practice priorities. A three‐round online Delphi study was conducted, ranking statements based on policy and research separately. Statements were rated 1 (not important) to 9 (important). Statements that were rated 7–9 by more than 70% of participants were entered into the consensus meeting. Personalized voting feedback was shown between rounds. A face‐to‐face meeting was held to discuss statements, and participants were asked to rank statements using a weighted choice vote.Results: Twenty‐two people participated in the focus group, generating 14 research and 19 policy statements. Statements were voted on by 56 participants in round 1, 53 in round 2 and 51 in round 3. A total of 15 policy statements and 19 research statements were discussed in the consensus round. Key policy statements addressed treatment strategies and intensity, surgeon training opportunities, need for classification and the impact of treatment on return to work. Research recommendations included design of future trials, methodology considerations and research questions.Conclusion: This study has identified research and policy priorities in pilonidal sinus disease which are relevant to patients and clinicians. These should inform practice and future research.

Aim: Research in pilonidal disease faces several challenges, one of which is consistent and useful disease classification. The International Pilonidal Society (IPS) proposed a four‐part classification in 2017. The aim of this work was to assess the validity and reliability of this tool using data from the PITSTOP cohort study.Method: Face validity was assessed by mapping the items/domains in the IPS tool against tools identified through a systematic review. Key concepts were defined as those appearing in more than two‐thirds of published tools. Concurrent and predictive validity were assessed by comparing key patient‐reported outcome measures between groups at baseline and at clinic visit. The outcomes of interest were health utility, Cardiff Wound Impact Questionnaire (CWIQ) and pain score between groups. Significance was set at p = 0.05 a priori. Interrater reliability was assessed using images captured during the PITSTOP cohort. Ninety images were assessed by six raters (two experts, two general surgeons and two trainees), and classified into IPS type. Interrater reliability was assessed using the unweighted kappa and unweighted Gwet's AC1 statistics.Results: For face validity items represented in the IPS were common to other classification systems. Concurrent and predictive validity assessment showed differences in health utility and pain between groups at baseline, and for some treatment groups at follow‐up. Assessors agreed the same classification in 38% of participants [chance‐corrected kappa 0.52 (95% CI 0.42–0.61), Gwet's AC1 0.63 (95% CI 0.56–0.69)].Conclusion: The IPS classification demonstrates key aspects of reliability and validity that would support its implementation.

Aim: Pilonidal sinus is a common surgical condition which impacts a young and economically active population. There are limited data to guide treatment in this condition. The aim of this work was to assess current practice.Method: A survey was developed as part of the PITSTOP study. It included questions on volume of practice, treatment preferences and training. The survey was delivered to consultant surgeons with a UK practice through social media, specialty surgical societies and through PITSTOP sites. Descriptive statistics were reported.Results: Of the 200 people who received a link to the questionnaire, 109 completed it (response rate 54.5%). Respondents treated a median of 15 patients per year, with 20% of these having recurrent disease. Estimates of recurrence were higher than reported in the literature and higher than in a survey 10 years ago. Nearly 50% of surgeons advocate nonsurgical treatment in some patients despite limited evidence. Two thirds practised interventions not favoured by guidelines, including excision and leave open and midline closure techniques. Invasive procedures tended to be favoured when minimally invasive procedures may be appropriate. Surgical training programmes were the key training setting for commonly offered procedures, with few other training opportunities reported. For some procedures, no formal training had been given.Conclusion: This survey highlights issues with quality in pilonidal surgery in the UK, with persistence of potentially outdated techniques, no consistent treatment escalation plan, a suggestion of under‐ or overtreatment of disease and a high perception of failure. This may relate to the current system of training and lack of evidence‐based guidance.

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.

Many eye movement desensitization and reprocessing (EMDR) therapists moved their practice online during COVID-19. We conducted surveys and interviews to understand the implementation and acceptability of online EMDR therapy. From 17 June to 2nd August 2021 an online survey was open to EMDR therapists from the EMDR Association UK & Ireland and EMDR International Association email lists, and, through them, their clients. Questions related to determinants of implementation (for therapists) and acceptability (for clients) of online EMDR. Semi-structured interviews were conducted with a sample of therapist respondents to provide a deeper understanding of survey responses. Survey responses were received from therapists (n = 562) from five continents, and their clients (n = 148). 88% of clients responded as being extremely or very comfortable receiving EMDR therapy online. At the initial point of ‘social distancing’, 54% of therapists indicated strong or partial reluctance to deliver online EMDR therapy compared to 11% just over one year later. Four fifths of therapists intended to continue offering online therapy after restrictions were lifted. Free-text responses and interview data showed that deprivation and clinical severity could lead to exclusion from online EMDR. Internet connectivity could disrupt sessions, lead to cancellations, or affect the therapy process. Therapists benefited from training in online working. Online EMDR is generally acceptable to therapists and clients, with reservations about digital exclusion, case severity, poor internet connectivity and the need for training. Further research is needed to confirm that online EMDR is clinically non-inferior to in-person working.

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.