Title: Improving treatment decision making in hand surgery
Funder: Department of Health and Social Care

Abstract: Background Dupuytren's disease (DD) is a common disorder that draws fingers into the palm. It affects quality of life, and consumes significant health resources, with around 16,000 DD operations a year in the English NHS. These comprise different interventions, varying from breaking fibrotic cords under the palmar skin that are responsible for joint contractures by agitating a needle through them (needle aponeurotomy), injecting collagenase into them, or cutting out disease surgically (fasciectomy, or dermofasciectomy if a skin graft is used).There is poorly understood variation in UK practice, with different intervention rates, varying interventions being used, and heterogeneity in surgeon preferences. There is limited comparative trial data between interventions, and outcome may be affected by patient factors, like comorbidities. It remains unclear which interventions are most appropriate for which patients.Aims This project aims to improve decision making about DD treatment, by understanding the variation in the treatment of DD in the NHS, and using validated PROMs in a new decision support tool.Plan The project will have four workstreams culminating in a newly-developed and assessed DD treatment decision support tool.Workstream 1 This will study and improve existing patient-reported outcome measure (PROM) questionnaires for further use in the project. If unsuitable, they will be replaced within the project. The validity of two existing PROMs, the Hand Health Profile (HHP) and the Unit Rhumatologique des Affections de la Main (URAM) will be studied. This will use classical test theory and item response theory validation techniques to assess whether they measure people appropriately. It will use existing cross-sectional data held in the British Society for Surgery of the Hand (BSSH) UK National Hand Registry. If indicated, they will be optimised prior to conducting a prospective cohort study. Workstream 2 This will develop understanding of patient and surgeon decision-making. A qualitative study of patients' decision-making about DD treatment will be conducted. It will use focus groups to build a conceptual framework, then apply this is semi-structured interviews, with framework analysis. Semi-structured interviews with surgeons will explore decision-making and levers and barriers to behaviour change. Framework analysis will be used. This will understand the factors influencing decision-making, and how to drive change effectively, to reduce variation. Workstream 3 The outcome of treatments will be studied. Refined HHP and URAM PROMs will be captured in a prospective cohort study, along with the recently-launched Patient-Reported Outcomes Measurement Information System Upper Extremity computerised adaptive test (PROMIS UE). PROM interpretability will be studied with these prospective data, and regression analyses will assess factors associated with outcome, as identified in a systematic review.Workstream 4 The results will be combined in a novel web-based computer program that uses patients' baseline PROM scores and demographics to display estimated outcomes of different treatments and highlight factors that may influence treatment decision-making.This will then be subjected to a multi-centre assessment in practice, from both patients' and surgeons' perspectives.Patient Benefits This project will deliver improved patient-centred assessment of DD, with better validated, interval-scaled measures. Good treatment outcome will be defined by patients, which will ensure that DD treatment quality is based on what matters to patients. By using data to support decision-making, it should improve access to appropriate and effective care for patients where this is not happening, and reduce the risk of undergoing unhelpful treatment. It should make NHS care for patients with DD safer and more effective.NHS Benefits This project is expected to improve patient satisfaction. It will make data-driven decision-making simpler and easier, yet also account for barriers to change. It is expected to reduce inappropriate intervention, which will increase system efficiency and improve care quality.

Lay abstract: Aims The aims are to understand the variation in Dupuytren's disease treatment in the NHS, and to use patient questionnaires to improve treatment decision-making.Background Dupuytren's disease causes the fingers to bend into the palm and not straighten. It affects up to 1 in 10 British people, with over 16000 treatments a year done in the English NHS. These vary between needle aponeurotomy, where lumpy disease under the palm skin is broken by passing a needle back and forth through it, collagenase injections to digest disease, or surgery to cut out disease. Surgery has risks and recovery can take longer. It can be difficult to choose the best treatment. We know that across the UK, there is variation in how likely people are to have treatment, and different surgeons prefer different types of treatment, but we do not know why. Many people may not receive the best treatment for them. Questionnaires exist asking about things people do with their hands, like the Hand Health Profile. These are commonly called PROMs. Some patients already complete PROMs before and after treatment in a national computer system. However, we may need to improve the PROMs used, or replace them. In one alternative called PROMIS the computer picks the fewest questions necessary. This is called a computerised adaptive test. In other areas, like knee arthritis, clinicians use similar questionnaires to advise patients of likely treatment benefit, by comparing with answers from people who already had treatment. We want to do this for Dupuytren's disease. Such a system may only help if we understand why there is variation in treatment at present.Methods The following is required: Studying existing PROMs to improve them, and alternatives to replace it if required (including the computerised adaptive test) Understanding why patients choose treatments, and why surgeons offer varying options Studying how people fare after treatment, so we have something to compare to in the computer programme Building and assessing a computer programme that predicts outcomes if the patient goes ahead with different treatments, and specific pros and cons of treatments for them. This will involve: Studying the answers to PROM questions already held in the computer system using specific statistics. This will help to decide whether the Hand Health Profile can be improved, by changing how the answers are marked. If it cannot be fixed, then this may show it needs replacing. Reviewing what studies have already looked for things that affect outcome, e.g. other medical problems, age, etc. Then, Start a new study capturing the improved PROMs and the alternative before and after treatment, to see what amounts to a meaningful improvement to patients. Following the review, we will also see what things affect outcome using statistical modelling. Run interview studies, in which whole conversations with individual patients and surgeons about relevant topics are recorded for analysis. This is to understand why patients choose different treatments, and why surgeons offer specific treatments. Then, Design a computer programme (Hand Decision Support HANDS Package) in which patients complete a questionnaire that is used to help predict the outcome of different treatments. It will also highlight additional factors to consider before deciding which treatment to have, such as the effect on their job during recovery. Then, Assess how surgeons and patients find the new computer programme in practice. Patient and public involvement Public volunteers and former patients have helped design this project. For example, the need to interview surgeons was identified by a volunteer. Two volunteers will join a Steering Committee that meets yearly to oversee the project, advising on progress. There will be Public and Patient Involvement in the preparation of literature like Patient Information Sheets for prospective participants, and will jointly design focus groups as part of one study. The British Dupuytren's Society is a national patient organisation. They have helped with project design and will help to publicise the findings of the studies.Dissemination The results of this work will be publicised to patients and the public using Twitter and websites like The British Dupuytren's Society website. We will present results at meetings of hand surgeons, hand therapists and researchers interested in patient questionnaires. We will write articles in open access scientific journals, which are available free.Impact We expect that this will improve the choice of treatment for thousands of NHS patients with Dupuytren's disease, and could be adapted to help other decisions, like whether a patient should be referred to a surgeon.

Research activity codes: 6.3 MEDICAL DEVICES
Health categories: MUSCULOSKELETAL