The direction of research is usually set by researchers or by associated commercial parties. We want to enable patients, carers, and the health and social care professionals who have a role in the management of common conditions affecting the hand and wrist to have their say. We aim to align future research in this area with what matters to everyone whose lives are affected and those who help and treat the people whose lives are affected.
The James Lind Alliance (JLA) process brings patient, carer, and health care professional groups together on an equal footing in a Priority Setting Partnership (PSP) to:
· identify unanswered questions about a health problem which is important to them;
· work as partners to prioritise the questions;
· produce a 'top ten' list of jointly agreed priorities as research questions to be presented to researchers and funders.
Our Project Protocol document outlines the process and sets out the aims, objectives and commitments of the PSP for Common Conditions Affecting the Hand and Wrist. It sets out how the project meets the principles established by the JLA. Our JLA Adviser has played a central role in helping the Steering Group establish this protocol and works to ensure that accountability and transparency are maintained throughout the project.
Stage 1 - Establishing the PSP
Stage 2 - Survey
Stage 3 - Data management
Stage 4 - Interim prioritisation
Stage 5 - Final prioritisation
Initial Survey / Checking Uncertainties
A survey was designed asking both clinicians and patients/carers which questions about common hand and wrist conditions they would like to see answered by future research. Almost 900 questions were submitted and subsequently collated into 59 research priorities.
An additional 8 research priorities were identified by an extensive and systematic review of published research uncertainties from Cochrane reviews and NICE/SIGN evidence based guidance.
The 67 longlisted research priorities were then rigorously checked against the evidence base, greatly facilitated by the HandSRev database of systematic reviews, mapped by topic and developed by the Centre for Evidence Based Hand Surgery. This confirmed that all 67 priorities were “uncertainties” as defined by the JLA.
Interim Priority Setting
The longlisted uncertainties were distributed for prioritisation to all respondents to the initial survey and publicised further by all partner organisations. Each respondent selected and ranked their top 10 uncertainties.
Ranking results from 261 individuals (41% patients/carers and 59% clinicians) were combined to rank the longlist. The top 30 uncertainties from this exercise, which included the top 10 priorities for both clinicians and patients, were shortlisted and taken forward to the final priority setting workshop.
The final workshop was held on 23rd May 2017 and attended by 12 clinicians and 9 patients - again purposefully sampled. Through a series of small and large group discussions facilitated by a group of JLA advisers, the uncertainties were ranked to identify the top 10 unanswered research priorities concerning common conditions affecting the hand and wrist, omitting a final numerical ranking owing to the diversity of conditions covered.
Can scar/fibrosis formation be manipulated to improve results following hand surgery/trauma?
The formation of scar tissue, broadly termed fibrosis affects all injured tissues, whether that injury is from an accident or following surgery. Fibrosis plays a key role in the development of stiffness following injury or surgery as well as in many systemic diseases affecting the hand. Scar free healing has long been a goal in surgical research.
In patients with Dupuytren's disease, what techniques give the best results in terms of function, recurrence and cost?
Dupuytren’s disease causes variable problems in the hand but commonly leads to the fingers being permanently drawn into the palm. There is no cure and the causative factors remain poorly understood. Non-surgical methods such as splinting, stretching and injections and surgery to divide, remove or skin graft the diseased tissue have all been tried. The most successful treatment in terms of function is not known.
In the treatment of common hand conditions, such as peripheral nerve compression syndromes (for example carpal tunnel syndrome), ganglia or arthritis of the fingers/thumb/wrist, do surgical interventions have a demonstrable benefit in patient reported outcome when compared with non-surgical methods or placebo (sham) surgery?
Hand surgeons treat a wide variety of common conditions with established operations that have become standard and recognised treatment. Whilst these operations are widely accepted as being successful in the treatment of these conditions, superiority over non-surgical methods has not universally been established.
Regarding patient and cost benefits, which interventions (for example movement preserving surgeries such as joint or cartilage replacement, fusion operations permanently stiffening the joint and novel therapies) give the best results in the treatment of painful joints in the hand/wrist?
Much development has occurred in recent years in the treatment of arthritic joints. Novel surgical techniques such as replacement of damaged cartilage or whole joints, are now possible in the hand and wrist. However, these techniques have minimal clinical research to support their use over more established surgical options such as fusing the joint.
What are the most effective non-surgical methods for treating early arthritis in the hand and fingers?
Arthritis affecting the small joints in the hand and fingers is very common. In many patients with early arthritis, surgery is often not considered as there may only be mild pain and deformity. As the condition progresses it can become more symptomatic. Can intervention in the early stages of the disease prevent progression to the later stages? Can the symptoms of early arthritis be successfully controlled with non-surgical techniques?
What interventions/treatments will have the most positive effect following nerve injury?
Once injured, the potential for nerves to heal themselves is limited. Subsequent function, in terms of feeling or sensation, and muscle power, is impaired and long-term outcomes are uncertain. Numerous surgical techniques and hand therapy adjuncts are available or in development, in attempt to improve these poor outcomes. The role of these techniques is yet to be explored.
What methods are most accurate, user friendly and demonstrate the best clinical utility in measuring patient reported outcomes in common hand conditions?
Our current ability to determine a “surgical success” is based upon how we measure the outcome following treatment. Patient reported outcome measures are a useful way to measure the overall status of the hand. Many such outcome measures exist but none is universally applicable and none has been developed to current standards. In order to determine whether our treatments work, we need an accepted proven method of measuring “success”.
Which hand therapy techniques enable the most efficient return to full function following surgery or injury?
Hand therapy (occupational therapy, physiotherapy and splinting) underpins the recovery following nearly all surgical treatments and injuries in the hand and wrist. Numerous specific techniques exist depending on the surgery/injury, with minimal evidence to show whether one method is superior to another or no treatment.
Which hand/finger/thumb injuries would benefit from surgical intervention over hand therapy or no formal treatment, considering both functional outcome and societal cost?
There is considerable variability across the UK, in the treatment of hand/finger/thumb injuries, with many treatments giving adequate results in the majority. It is essential that we know within the huge range of possible injuries which are best treated surgically or non-surgically, and by what method.
Which patients with acute ligament injuries to the wrist or chronic wrist/distal radio-ulnar joint (the joint on the little finger side of the wrist) instability benefit from surgical treatment rather than from non-surgical methods?
The wrist is a complex and poorly understood joint. Injuries to the ligaments vary in long-term outcome from return to full activity and no pain to unavoidable arthritis. Multiple treatments exist but none have shown superiority. It seems likely that appropriate patient and procedure choice are the key to a successful outcome in these conditions, whether acute or chronic.
Frequently asked questions
What is the James Lind Alliance?
The National Institute for Health Research (NIHR) funds the infrastructure of the James Lind Alliance (JLA) to oversee the processes for Priority Setting Partnerships (PSPs). PSPs aim to help patients, carers and health care professionals work together to agree which are the most important treatment uncertainties affecting their particular interest, in order to influence the prioritisation of future research in that area – in this case relating to common conditions affecting the hand and wrist.
What is the Common Conditions Affecting the Hand and Wrist (PSP)?
It is a partnership that brings together patients, carers and health and social care professionals to agree what research matters most for those experiencing common conditions affecting the hand and wrist.
How did the Partnership come about?
Professor Abhilash Jain initially proposed a PSP after his experience of his colleagues completing PSPs in other topics. The idea was supported by the BSSH Research Committee and the BSSH confirmed their financial support in April 2015. With the support of the BSSH Research Committee Ryan Trickett was elected lead clinician for the process and the steering group was recruited to ensure representation from as many aspects of the specialty were involved.
Who is involved in the Partnership?
Organisations and individuals have been invited to join the PSP representing the following groups:
· people who have had any hand or wrist problem that could be considered as a Common Condition Affecting the Hand and Wrist
· carers of people who have had any of the Common Conditions Affecting the Hand and Wrist
· medical doctors, nurses and professionals allied to medicine with clinical experience of treating Common Conditions Affecting the Hand and Wrist; particularly but not limited to hand surgeons, hand therapists, occupational therapist and physiotherapists.
Can other organisations still get involved?
Unfortunately no. The PSP is now complete.
How can organisations and the public find out more?
For more information or to get involved, email the James Lind Alliance Project Manager at the NIHR Oxford Biomedical Research Centre, Judith.Rogers@ouh.nhs.uk or call her on 01865 223298. You can also email Ryan Trickett directly at firstname.lastname@example.org .
How is research currently funded and prioritised?
Researchers and research funders predominantly determine which areas are researched. Often this is done with reference to current literature – to identify where the gaps in knowledge are. This is sometimes done with input from patients, carers, and health and social care professionals – although never in such a thorough and systematic way as will be achieved through this partnership. The PSP process will uniquely combine the input of patients, carers and health care professionals with a search of the literature.
What will happen to the “top 10” questions?
The “top 10” questions will be publicised and discussed at events where research funders will attend. The PSP will work with its stakeholders and partners to raise awareness of the priorities and try to get them funded as research projects. The questions will be considered by the National Institute of Health Research (NIHR) and other funding organisations when commissioning research.
This PSP is being co-ordinated by the James Lind Alliance “hub” Manager at the NIHR Oxford Biomedical Research Centre:
Judith Rogers –James Lind Alliance Assistant Project Coordinator
NIHR Oxford Biomedical Research Centre & Musculoskeletal Biomedical Research Unit
Oxford University Hospitals NHS Foundation Trust
Churchill Hospital | Joint Research Office |Block 60 | Headington | Oxford OX3 7LE
Tel: (01865) 223298| E-mail: Judith.Rogers@ouh.nhs.uk
Ryan Trickett – Lead Clinician Common Conditions Affecting the Hand and Wrist PSP