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Setting up a nurse-led patient forum to inform choice

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Linda Patten, RGN, is clinical nurse specialist; Dishan Singh, FRCS Orth, is consultant orthopaedic surgeon; Nick Cullen, FRCS Orth, is consultant orthopaedic surgeon; all at foot and ankle team; Sophie Wiggins is clinical audit lead; all at Royal National Orthopaedic Hospital NHS Trust, Stanmore, Middlesex.



Patten, L. et al (2008)

Setting up a nurse-led patient forum to inform choice. This is an extended version of the article in Nursing Times; 104: 5,34-35.

BACKGROUND: Patients offered hindfoot or ankle fusion surgery often find making the decision whether to accept the surgery stressful. We believed that much of this was due to inadequate information about the procedure and its outcomes, and decided to set up a fusion forum - a nurse-led informal group meeting to facilitate patients’ understanding of fusion procedures and help them to make informed choices about the proposed surgery.
AIM: The aim of this study was to evaluate the impact of patient forums.
METHOD: A questionnaire was distributed to the first 48 patients who attended the forum.
RESULTS: Ninety-six per cent - 46/48 - of respondents felt that the quality of information provided was excellent or good; none thought it was unsatisfactory. Patients were asked how valuable they had found meeting the ‘guest’ (a former patient). All those who answered the question thought that meeting the guest was excellent or good.
DISCUSSION: This process greatly increased patient understanding of arthrodesis. The consent process at the pre-admission clinic demonstrates that patients have more in-depth understanding of the operative procedure and more comprehensive knowledge of the whole process, the relative risks and benefits and the expected recovery time. Most research agrees that the provision of good-quality information before elective surgery facilitates patient involvement and may reduce post-operative complications (Walker, 2007).


Patients presenting to the Royal National Orthopaedic Hospital (RNOH) with severe ankle or hindfoot arthritis or deformity are often offered an arthrodesis (joint fusion). This is a major decision - the concept of a fused joint is complex and requires a degree of anatomical and surgical knowledge. It is often difficult for patients to understand the outcome of the procedure, and it is unusual for them to meet people in everyday life who have had fusions.

The signs and symptoms indicating the need to fuse a joint(s) are usually: extreme pain; disability; loss of mobility; and, consequently, poor quality of life. Fusion resolves the pain and therefore leads to greater mobility, although the joint itself still does not articulate as a healthy joint would.
The implications for patient care are primarily psychological, as fusing a joint to make it solid and immobile seems like an unnatural and disabling action, although patients will already have a marked degree of immobility/disability. Those offered the choice of an ankle arthrodesis or an ankle replacement in particular have great difficulty making an informed decision. It was because of this that the ankle fusion forum was established.
The traditional methods of addressing patient concerns in order to enable them to give informed consent for the procedure are discussion and providing an information sheet. Another method is to arrange for patients to talk to someone who has had a similar procedure, before arranging a follow-up consultation in the outpatient clinic.

The common concerns highlighted by patients are:

  • Does a fusion abolish all foot and ankle movements?

  • Does it cause a major alteration in gait, such as a limp?

  • Does it affect normal daily activities such as climbing stairs, driving and cycling?

  • Does it cure all pain/discomfort?

  • What are the long-term effects of the surgery?

  • How long does post-operative incapacity (time in plaster, level of mobility, time off work) last?

Even when considerable extra time is allocated for medical consultations with surgeons, patients can remain uncertain about what an ankle or hindfoot fusion entails and may be indecisive about the right or best way forward.
The foot and ankle team at the RNOH felt that many of the difficulties patients faced when making decisions about surgery stemmed from inadequate information about the procedure and its outcomes. We therefore proposed to set up a ‘fusion forum’ - an informal nurse-led discussion group to facilitate patients’ understanding and perception of fusion procedures. The aims were to:

  • Provide an environment outside the constraints of clinic time in which patients could improve their understanding of the process of fusion;

  • Provide more in-depth multimedia information about joint fusion;

  • Encourage an informal exchange of information with other patients;

  • Provide an opportunity to observe and question a ‘guest’ - a former patient who has had a fusion;

  • Answer questions that have arisen since patients’ initial consultation with a surgeon;

  • Educate on all aspects of peri-operative care (including the effects of smoking, walking aids and plaster cast protection);

  • Empower patients to make an informed choice about surgery.

This article describes our experience in setting up the forum, and reports the results of a questionnaire-based evaluation/audit of the first 48 patients seen. It also discusses the value of increasing patient knowledge and certainty about arthrodesis and improving the peri-operative experience.

Setting up the forum
The forum was set up in the RNOH, a specialist tertiary orthopaedic referral centre, which sees approximately 1,300 new patients a year, about half of whom present with hindfoot or ankle problems. The foot and ankle team consists of two orthopaedic surgeons, a fellow and two registrar surgeons and a clinical nurse specialist, as well as orthotists, physiotherapists and link nurses from various hospital departments.
Once patients’ need for more in-depth knowledge and information about an ankle or hindfoot fusion had been highlighted, we decided that a specialist nurse-led fusion forum would offer an efficient, high-quality platform for provision of information.
Patients who had previously had fusion surgery were contacted and a database was set up in which to store details of those who were willing to act as guests in the planned forums. The guests provided an opportunity for new patients to obtain first-hand feedback on issues such as:

  • How they had adjusted following their own fusion surgery;

  • What their range of movement, functional abilities and limitations were;

  • The effect of the procedure on pain.

They were also able to observe the guests’ gait first hand.

Patient education
Patients are seen as usual by the surgical team. Previously, those being considered for a midfoot/hindfoot/ankle arthrodesis were routinely counselled in clinic and given specific information leaflets on preparing for foot and ankle surgery and ankle or hindfoot fusion surgery, developed in the department.
Now, they are referred to the clinical nurse specialist (CNS), who arranges for them to attend a foot and ankle fusion forum, which takes place at around six-weekly intervals. The forum is run by the CNS but adopts a multidisciplinary team approach with involvement of ward foot and ankle link nurses, theatre staff, plaster technicians, pre-admission staff and outpatient staff, along with a physiotherapist and orthotist.
The informal group session consists of a multi-media presentation (PowerPoint presentation, videos, sawbone models) on the process of ankle/foot fusion, which is reinforced with verbal and written information. A guest with an arthrodesis attends the seminar and patients can observe them walking and the effect the procedure has had on their gait. Patients are also encouraged to question guests and the multidisciplinary team and discuss any concerns. The session lasts an hour and prospective patients have the chance to see and try out equipment they may need post-operatively, such as crutches or a K9 walker (a device used to offload patients’ body weight). They also have the facility to view radiographs showing the position of fused joints and orthopaedic hardware.

The first 48 patients who attended the ankle fusion forum were asked to complete pre and post forum questionnaires. The aim was to qualitatively assess the initial wave, to evaluate whether the forums are an effective addition to the usual pre-operative planning process.

Patients were asked to complete a questionnaire at the start of the session and at the end. The questionnaire was returned by 24 men and 24 women who attended the first six forums. The age range was 40-75 years.

Value of talking to a guest
Patients were asked how valuable they had found meeting the guest. Four did not respond to this question, but the remainder thought that meeting another patient who had undergone the procedure was excellent or good (Fig 1).
They were asked how helpful they found discussing their concerns with a former patient - again, four did not answer the question. The majority (96%, 42/44) of respondents said they had found meeting the guest useful. Over two-thirds (70%) felt that a video of a former patient would be as useful as meeting them in person.

Quality and clarity of information provided
The majority (96%, 46/48) of respondents felt that the quality of information was excellent or good. None thought it was unsatisfactory (Fig 2).
Ninety-eight per cent felt that their level of understanding of the presentation was excellent or good, and none felt their understanding was unsatisfactory.

Length of session
Respondents were asked whether they thought the session was too long, not long enough or just the right amount of time. Ninety per cent (43/48) felt it was just right. However, 10% (5/48) would have liked it to last longer (Fig 3).

Aspects of presentation that could be improved
Respondents were asked whether they felt any aspects of the presentation could be improved. Those who did were asked to suggest what these improvements should be, and 18% (8/44) made some suggestions:

  • Improve sound for patients with hearing difficulties;

  • Use a microphone;

  • Screen projection could be clearer; for example, the blinds could be drawn;

  • Only useful if triple-fusion patient was available;

  • Consider having more time for questions;

  • Video clips showing personal experiences of former patients and tips to cope at home;

  • Consider having a smaller group.

Additional comments
Respondents were asked whether they had any additional comments on the forum, and 26 comments were made. These were complimentary, but contained suggestions for improvements:
‘Thought it was an excellent session. If anything, [it] could have been a little longer and a video showing more of possible activity post-operation would be good.’ This was a particularly valued comment. A video has been produced and introduced into the ankle fusion forum session. A main benefit of this is that it depicts a patient who has undergone triple fusion, so it also addresses another comment from the questionnaires.
‘If the group was smaller I think it would allow more discussion and be less intimidating. However, very informative, well presented.’
‘This is a very helpful activity that encouraged me to go ahead with the operation.’
‘Excellent presentation - Linda [CNS] was extremely helpful and able to answer [the] majority of questions I had.’
‘Thank you. Helped me feel I wasn’t the only one having this surgery. Talking to people who had undergone the procedure was most helpful.’
‘Very well explained. I found all the information very well explained and considerably helpful.’
‘It’s been extremely useful to meet other patients who went through procedures and to chat with others who will.’
‘All the information needed without over-complication of medical jargon. Having the opportunity to speak to someone who has had the procedure was incredibly valuable. It has been far more informative than having a consultant explain the procedure and limitations.’
‘I think it’s a brilliant idea, very worthwhile.’
‘The presentation was perfect and satisfactory as it was presented in the language and terms understood by the nursing team as well as the patients.’
‘The session on foot and ankle was very interesting and very good.’
‘I will be very pleased to get it done and regain my mobility.’
‘Been brilliant to talk to post-op patients.’
‘Having the K9, Limbo [approved waterproof protective plaster cover] and anatomical models present was of great benefit.’
‘The whole thing was excellent, patient information was excellent. It was good to hear what information is given to patients so the nurses can say the same thing.’

Most research agrees that the provision of good-quality information before elective surgery facilitates patient involvement and may reduce post-operative complications (Walker, 2007). Communication is the key to enhancing the patient journey/pathway and often this proves to be problematic (Lack et al, 2003). Pre-admission, patient-focused education sessions in other fields of surgery - for example, for patients undergoing hip and knee arthroplasty in Finland - have been described (Johansson et al, 2007).
While there is no literature on seminars aimed specifically at patients considering foot and ankle arthrodeses, background reading on patient information in general offered an insight into some aspects (Mordiffi et al, 2003; Payne et al, 2000).
Although this was not primarily a research project, the methods of qualitative research and evaluation were based on Patton’s (2002) format.
Traditionally, patients had been counselled about fusion surgery in a one-to-one clinic setting with their surgeon. The fusion forum model involves multidisciplinary education including written information, multimedia presentations and interaction with post-arthrodesis patients.
The forums were set up to run on a rolling basis every six weeks. Feedback gained from patient evaluation questionnaires (immediately following the forum) and patient satisfaction surveys (carried out post-forum) have so far indicated that the forums have been successful and patients’ perception of fusion surgery has been positively influenced.
Indications so far (from database audit and hospital auditor facility) have shown that the majority who attend fusion forums have gone on to have surgery and have been satisfied with the outcome and post-operative care and support received. Indeed, many patients have themselves gone on to act as guests for subsequent patient fusion forums.
However, patient feedback did indicate that smaller group sizes would have been more beneficial and less intimidating. This has since been addressed and two extra sessions have been added to the annual calendar.
The evaluation forms have demonstrated that there is an extremely high level of satisfaction with the foot and ankle fusion forum. Comments suggest that patients find speaking to others who have undergone surgery particularly useful. Suggestions for improvements included making the presentation easier to hear and see, as well as having smaller groups - see patient comments in the Results section. These suggestions are invaluable in continuing to provide a quality patient-focused seminar and will be explored.

Lessons to learn
Planning and good organisation is paramount. It is vital to have a database not only of patients willing to act as guests, but also of all patients scheduled to have fusion surgery.
The environment needs to be relaxed and informal; patients need to feel that they can ask questions without fear of ridicule. The venue must be big enough to accommodate not only prospective patients but also companions. Many patients bring a friend or partner for moral support or to act as a ‘spare pair of ears’.
Patient information sheets on surgery and preparing for foot and ankle surgery are handed out at the fusion forum as standard procedure. Patients also have the opportunity to meet the multidisciplinary team (plaster technicians and foot and ankle link nurses). This has been very successful as patients recognise team members when attending for surgery and are more relaxed as a result.
It is useful to demonstrate and give patients product advice and literature, for example, protective cast covers to enable them to shower post-operatively without damaging the plaster. Demonstrations of how people cope immediately post-operatively with non-weight-bearing have also helped allay patients’ fears. They are shown crutches, zimmer frames and the K9 walker and this has proved to be an enormous practical benefit of these forums - patients do not usually have the advantage of this facility in most hospital settings. This allows the length of patient stay in hospital to be remarkably reduced, which has a positive psychological effect on their well-being and also reduces the risk of post-operative hospital-acquired infections.
PowerPoint presentations on the process of generic fusion, along with video clips and radiographic images depicting the position of metalwork, have helped patients’ understanding of the procedure. This information package on generic fusion surgery has been of tremendous value. Patients have responded well to this method of imparting information and have responded positively to these patient-focused fusion forums.
We hope that by highlighting the benefits of patient-focused forums, other nurses can set up similar services in different clinical settings.

The patient-focused fusion forum has a number of benefits. It:

  • Addresses patient concerns, such as gait issues;

  • Provides patients with the opportunity to meet people who have undergone the same or similar procedure;

  • Develops a support network for patients who are considering fusion procedures;

  • Empowers patients to make an informed choice about proceeding with fusion procedure(s);

  • Establishes and fosters a pre- and post-operative network and support forum for patients.

The forum not only offers patients the opportunity to make an informed choice about surgery but it also gives healthcare professionals the chance to dispel myths and fears surrounding midfoot/ankle/hindfoot fusion. It is useful in gaining patients’ informed consent, and in improving satisfaction and the patient journey. We recommend that other units adopt this practice to enhance and improve the whole patient experience.


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