Development of an interdisciplinary specialist facial pain management programme

Abstract

Aims:

This article aims to describe the development of a specialist chronic facial pain (CFP) management programme within an already well-established pain management service, including the content from a multidisciplinary perspective, and present preliminary descriptive 6-month outcomes from patients who have attended the programme.

Methods:

Authors used their clinical experience of working with people who have a diagnosis of CFP. They researched available literature, liaised with CFP support organisations and visited an existing UK-based CFP programme. Programme content was designed based on findings. The roles of pain interdisciplinary team members involved in delivering the programme are described, as well as a brief description of the structure of the programme and programme sessions provided by each discipline.

Results:

Clinical outcomes from programme participants were collected at assessment, end of treatment and 6 months post-treatment, which measured relevant outcomes for a pain management programme (PMP). Outcomes from 36 participants at both end of programme and 6 months following completion of programme demonstrate promising improvements. Qualitative data from patient satisfaction questionnaires completed at the end of programme suggest that providing a CFP-specific programme was beneficial for participants, with the main critique being that the programme sessions should be longer than 45 minutes.

Conclusion:

Attending a CFP-specific programme demonstrated positive 6-month changes in relevant outcome measures for people with CFP. With a small sample size, there is a need for further research into the effectiveness. It would also be beneficial to compare outcomes from the usual PMP treatment with people who have CFP, with outcomes from a CFP-specific programme.

Introduction

Chronic facial pain (CFP) has been described as ‘continuous, dull pain in the face, of greater than 6 months duration, with intermittent severe episodes’. ¹ A UK Biobank study conducted throughout 2006–2010 highlighted that facial pain was prevalent in 1.9% of the UK population, with 48% of this deemed to be chronic in nature. ² In an earlier study, 17% of those with CFP reported requiring time off work or being unable to carry out normal daily activities. ³ Individuals with CFP regularly seek help to better understand their pain and the often unknown aetiology can lead to feelings of being misunderstood by health services. ⁴

CFP has been linked to psychological factors, with higher levels of depression and perceived stress in those with CFP in comparison to acute facial pain.^5,6 Due to the associated psychosocial factors, psychosocial interventions have more recently been used as an effective treatment for CFP. In a brief cognitive behavioural therapy (CBT) programme for temporomandibular dysfunction-related pain, participants reported a reduction in pain, life interference and depressive symptoms in comparison to the standard treatment group (splint therapy plus soft diet and oral anti-inflammatory agents). ⁷ There is also evidence that CBT can improve how patients with CFP take control of their lives, by providing education on pain mechanisms, teaching pain coping strategies, relaxation, communication training and coping with acute exacerbations of pain. ⁸

There was limited research found pertaining to group-based programmes for CFP, and therefore limited guidance for the development of such a treatment. Pain management programmes (PMPs) across the United Kingdom are more commonly delivered in a group format, as outlined in the British Pain Society Guidelines (2013). ⁹ The guidelines further recommended that specialist programmes are developed for complex conditions, including CFP. Group therapy for other specialist pain groups has been largely successful, with participants finding it a normalising and beneficial experience to be in a group with others who have the same pain condition as them. ⁹

This article aims to describe how the Walton Centre Pain Management Programme team developed their specialist CFP programme, including the context and rationale for development and outlining the process and value of the multispeciality and interdisciplinary contribution to the service. There will be less detail about medical interventions discussed in this article, as when patients are referred for a PMP assessment, they have usually exhausted any medical and (in the case of CFP patients) dental interventions. In addition, the specific content of a group-based PMP for CFP patients will be described from a multidisciplinary perspective and the preliminary descriptive outcomes from patients who completed the first four CFP programmes will be presented.

Materials and methods

Process of development of the programme

The Walton Centre NHS Foundation Trust is a tertiary neurosciences hospital based in Liverpool. The trust offers specialist pain management services that deliver a variety of pain management support options including PMPs which are interdisciplinary group-based rehabilitation programmes that aim to reduce pain-related distress and disability and improve quality of life. In 2013, the British Pain Society updated their guidelines for PMPs and recommended that specialist programmes be developed for complex conditions, including CFP. ¹⁰ Prior to 2013, The Walton Centre Pain Management Service did not offer a specialist programme for CFP patients only, but had experience of working with patients presenting with CFP on their general PMP. There are two levels of general PMP offered – a less intensive 5-day programme which runs one full day per week for 5 weeks, and a more intensive 16-day programme which runs four full days a week for 2 weeks, followed by two full days per week for 4 weeks. In service review meetings, lead staff agreed that it would be beneficial to develop a specialist Chronic Facial Pain Management Programme (CFPMP) and a core team of clinicians with an interest in CFP was identified from within the overall pain management team to develop the programme. This team consisted of an occupational therapist, pain consultant, physiotherapist and psychologist.

At initial meetings, the team discussed their clinical experience of the needs of people with CFP from their respective professional opinion. Case notes of patients who had previously completed a PMP and who had a primary diagnosis of CFP were collected and reviewed to identify themes. The team reviewed these patients’ end of programme satisfaction questionnaires where there was a theme in the comments section about feeling different to the rest of their group members due to their CFP, particularly in terms of how their pain impacts differently on function – being generally more physically able but struggling with conversation, eating and the influence of environmental elements, and how some of the general programme elements such as exercise, target setting and activity management/pacing did not always cater to their needs. The team also liaised with CFP voluntary organisations and researched other CFP management programmes in the United Kingdom, as well as internationally.

The team had an opportunity to liaise with an Academic Clinical Lecturer in Oral Surgery from the Liverpool University Dental Hospital about his visit to The University of Kentucky Orofacial Pain Clinic. Representatives from the team also arranged a visit to the University College London Hospitals NHS Foundation Trust, Eastman Dental Hospital ‘About Face’ Pain Management Programme in November 2014. They met with clinical staff working on the programme to ask questions and observe some of their group programme sessions with the patients.

In developing the programme, the team had to consider available resources (time, staffing and accommodation) alongside clinical needs and inclusion and exclusion criteria. Patients with a primary diagnosis of headache and trigeminal neuralgia were excluded from the programme, as there is a different existing treatment pathway for these conditions. Consideration was also given to the general level of function of CFP patients versus patients with more widespread pain, and it was felt that a CFP PMP did not need to be as intensive as our 16-day PMP. Based on these factors, the team developed an 8-week, half day, interdisciplinary CFPMP for a group of 10 (maximum) CFP patients. Patients attended 4 × 45-minute group sessions during each morning over the 8 weeks. Each group session was facilitated by a different discipline and included education, guided practical work (such as exercise or meditation) and guided group discussion. The interdisciplinary team met each week to discuss each individual patient’s progress and actions for the next week. Patients were also invited to a 6-month follow-up session, which consisted of a morning session approximately 6 months after the finish date of their programme.

Programme content

Using the information gathered, pre-existing PMP sessions were modified to accommodate the specific needs of a CFP population. The programme was delivered by the above-mentioned disciplines, and topics covered on the programme included the following:

• Pain consultant: pain mechanisms, anatomy and medication.

• Occupational therapist: mindfulness, target setting and activity management, value-driven targets, work and employment, and communication.

• Physiotherapist: general exercise, facial relaxation, normal movement, Pilates and coping with flare-ups.

• Psychologist: values, thoughts, emotions, acceptance and commitment, and relationships.

Roles of pain interdisciplinary team members in facial pain management

Assessment process

Patients are referred to the Walton Pain Service from various sources, including the patient’s general practitioner (GP) or other national pain services. If a patient has been referred to our pain service and have a CFP diagnosis, they will most likely be triaged into the joint complex facial pain multidisciplinary team (MDT) clinic, where they will be medically assessed and treated as appropriate (see following section ‘Pain medicine’). It may be decided as part of this clinic to refer the patient on to the PMP team for an assessment for suitability to engage in a programme. All referred patients are invited to a morning session where they are assessed individually by an MDT of a clinical psychologist, a physiotherapist and an occupational therapist. The PMP assessment team was informed of the facial pain programme development and asked to consider referring patients with a CFP diagnosis to the CFPMP, if felt suitable. Each member of the team assesses a different element of the impact of the patient’s pain condition, and the individual assessments are described as part of the role descriptions below.

Pain medicine

The involvement of a pain consultant starts much before the commencement of PMP and well into the early stages of a patient seeking a diagnosis and cure. The basis of good treatment and rehabilitation is securing an accurate diagnosis and explaining it to the patient. To achieve this, the patients are assessed by a joint complex facial pain MDT which includes a pain consultant and a consultant oral surgeon, and are taken through assessments to rule out any sinister cause for the persistent pain in the orofacial territory.

The diagnosis and management of patients with facial pain can prove daunting, even to experienced clinicians as the causes are multiple, and misdiagnosis and mismanagement are very common. The mechanisms of neuropathic pain are very complex and research is still ongoing. A nerve injury can induce peripheral and central changes that contribute to persistent pain and abnormal sensation in the face or mouth. Through different mechanisms (inflammation, nociceptor activation and tissue injury), primary afferent fibres and central structures become sensitised. These processes are terminated under normal circumstances as tissues heal and inflammation improves. However, these multiple mechanisms can continue even if the primary afferent function is modified by disease, even in the absence of inflammation. While permanent loss or injury of primary afferent fibres (deafferentation) can result in peripheral neuropathic pain, direct damage to central nervous system structures results in central pain. On top of this facial pain presentation, other headache symptoms can coexist and super impose the facial pain, hence the typical ‘complexity’ of these conditions. Some common CFP diagnoses include painful post-traumatic trigeminal neuropathy, post-traumatic and post-intracranial surgery pain, central neuropathic facial pain, persistent idiopathic facial pain, burning mouth syndrome, trigeminal neuralgia and nervus intermedius neuralgia

These initial appointments involve exploring previous medical and/or dental interventions, and prescribing any other appropriate medical and/or dental interventions. This can include confirming the medications and doses previously trialled to reduce pain and may involve trial of topical or anti-neuropathic medications, with some patients needing strong opioids or if indicated, corrective dental treatments are suggested to be carried out by the patients’ general dental practitioner. This process of understanding that all potential medical and dental interventions have been explored helps patients to progress on the route of pain acceptance, and prepares them for embracing pain rehabilitation therapies, such as CFPMP. On the programme, the pain consultant delivers joint pain education sessions with specialist pain physiotherapy colleagues. Towards the end of the programme, when patients are better equipped with self-management techniques, a pain medication talk helps them understand and partake in reducing their pain medication. Hence, they become less reliant on the pain medication, and in some cases, come off it completely.

Physiotherapy

As part of the assessment process, patients are assessed for their willingness to engage with exercise. If a patient is to attend the programme, it is vital that they see the potential value of exercise and they feel that it is relevant to them and their needs. Baseline data on physical capabilities are collected, including sit to stands in 1 minute. On the CFPMP, the core aim of the physiotherapy sessions is to reduce the physical impact associated with CFP to enable patients to gradually and consistently increase physical activity despite their pain. In addition to the pain mechanism/anatomy session that is co-presented with a pain specialist consultant, there are also physiotherapist-led workshops on both posture and flare-up management, bringing focus on how best to minimise any activity avoidance during times of pain flare-up. Much of the exercise on the facial PMP is the same as would be found upon a standard PMP, but there are some key-specific differences. People living with facial pain often become trapped in a more sedentary lifestyle, and this of course impacts upon the well-being and capability of the whole body, so standard type PMP exercises are very relevant to the facial pain population. Specific physiotherapy provision for this population is made regarding awareness of abnormal facial muscle recruitment and the subsequent teaching of facial relaxation exercises. This includes education regarding posture and the over recruitment of muscle tone and the detrimental impact this can have upon the pain experience and an exercise that requires the patient to rest their tongue upon the roof of their mouth with the tip of the tongue resting on the back of the upper front teeth or resting between the upper and lower front teeth (molars gapped and lips gently meeting). This is the natural resting position of the tongue and adopting this position facilitates a reduction in tone within the muscles of mastication via what can be termed a reciprocal inhibition loop. There is also an increased focus on graded exposure to normal movement patterns in neck, shoulders, shoulder girdles and torso, as normal movement patterns in these areas have frequently been corrupted in unhelpful ways that can hinder physical performance and generate secondary symptoms.

Occupational therapy

The key role of the occupational therapy sessions is to enhance the occupational performance of those with CFP. At assessment, the occupational therapists use the Canadian Occupational Performance Measure (COPM)^11,12 to ask patients to describe their current level of function in daily life, including self-care, productivity and leisure activities and rate their performance and satisfaction with their top five most important occupational performance problems. This allows the occupational therapist to work with patients to identify potential targets, and through the CFPMP, help them find ways of adapting their approach to daily activity and life roles to enhance their performance. To develop the occupational therapy sessions on the CFPMP, the occupational therapy team identified typical occupational performance problems for people with CFP linked to function using their clinical experience. This included daily activities such as talking, eating, spending time outdoors in different weather conditions, concentration for work activities and self-care activity involving the face (such as shaving and brushing teeth). For our established PMPs, occupational therapists facilitate sessions in target setting and activity management, mindfulness and various workshops, including exploring value-driven targets, work and employment and communication. It was felt that all of these topics were particularly important given the typically identified occupational performance challenges of this client group. Emphasis was placed on the importance of transferring skills learnt in mindfulness sessions to accepting CFP, so as not to engage in activity avoidance, but instead to learn how to manage and pace activities in the presence of pain.

Psychology

PMPs are, in essence, a psychologically based treatment underpinned by principles of CBT. A key role of the clinical psychologist is to monitor patients understanding of these key principles and their progression through the PMP. Formulation of both their understanding of these principles as well as their natural coping style is a key element of this role. The process of formulation begins at initial assessment when the clinical psychologist gathers both qualitative and quantitative information related to patients circumstances, needs and coping style. In some cases, further outpatient psychology sessions may be offered prior to beginning the group treatment, which can facilitate further formulation. For example, in some cases, further sessions may be offered to gain a more complete formulation, or in other cases, a targeted piece of work may be undertaken to improve engagement on the facial PMP itself. Similarly, while patients attend the CFPMP, further refinement of formulation is facilitated through monitoring progress across the interdisciplinary team. For some patients, further individual psychology sessions are offered alongside the facial PMP, for example, to support a patient with a psychological difficulty which may not be addressed in the group setting. Within the clinical psychology sessions, time is spent helping patients reflect on the wider impact of chronic pain, their own natural coping style and associated psychological distress. Key to this is helping make links between thoughts, feelings, behaviours and physical factors. Patients are encouraged both to consider where there is scope to make positive adaptations to how they manage their situation, as well as helping them come to terms and adjust to the chronicity of pain. In this respect, themes of ‘acceptance’ and ‘identity change’ form a key focus of discussions. The psychology sessions themselves did not contain material that could be considered unique relative to more general PMPs; however, what was anticipated to be different was the specific ways in which facial pain affects individuals’ well-being which would be captured in the group discussions.

Outcome measures

Due to the multifaceted nature of the impact of CFP, and in accordance with the recommendations from IMMPACT for chronic pain clinical trials, various psychological, physical and functional outcome measures were administered to patients who attended the CFPMP. ¹⁸ These were given out at initial assessment, post-CFPMP (week 8 of the CFPMP itself) and at 6-month follow-up. Patients sign a consent form to say that they agree their anonymised outcomes can be used for research purposes. The measures included are the same as the measures used on the usual PMPs, and this can allow for comparison in future studies. Data were collected from using the following standardised outcome measures, full details of which are available from the associated references:

• Depression (Beck Depression Inventory Second Edition (BDI-II)). ¹³

• Pain Catastrophising (Pain Catastrophising Scale (PCS)). ¹⁴

• Pain-related Anxiety (Pain Anxiety Symptoms Scale (PASS)). ¹⁵

• Occupational Performance (COPM). ^11,12

• Pain-related Self-Efficacy (Pain Self-Efficacy Questionnaire (PSEQ)). ¹⁶

• Pain Acceptance (Chronic Pain Acceptance Questionnaire (CPAQ)). ¹⁷

• Pain Intensity and Pain Distress (Numerical Rating Scales (NRSs)). Pain intensity is rated from 0 (no pain) to 10 (the most intense pain imaginable), taking into account how you have felt over the last week. This commonly used method of rating pain intensity is reliable and valid. Pain distress is rated from 0 (no distress) to 10 (extremely distressed), taking into account how you have felt over the last week.

Patient satisfaction questionnaires were also administered at the end of the CFPMP. These included numerical ratings from 0 (not helpful) to 4 (very helpful), covering key components of the CFPMP. They also included open questions covering the least and most helpful elements of the programme as well as a question regarding patients’ preference for a CFP-specific PMP, a more general PMP or no preference at all.

Results

Data were collected from 36 patients with a diagnosis of CFP who attended assessment clinic, completed the 8-week interdisciplinary CFPMP and attended the 6-month follow-up appointment. Only data from these 36 patients at each time point are included, so for patients who did not attend 6-month follow-up, their assessment and end of course outcomes have not been included in analysis. The age range of patients was 20–73 years (mean age = 44.25 years) and the duration of their pain ranged from 10 months to 264 months (mean = 91.31 months). Twenty-two patients were female (38.9%) and 14 were male (61.1%). A question about employment status was asked at assessment, and 34 out of 36 answered this question. Thirteen patients (38.2%) were in employment at the time of assessment, six patients (17.6%) were retired, one (2.9%) was in education and the remaining 14 (41.1%) were unemployed.

Not all data were available at all time points, and this may be due to lack of full completion of questionnaires by patients. Data were analysed for the mean scores and standard deviations for pre, post and 6-month follow-up are presented in Table 1. This table demonstrates minimal important changes that indicate clinically significant improvements in mean scores for each outcome measure, from assessment to end of programme, and from assessment to 6-month follow-up post-programme. There are no significant changes in pain intensity and distress at the first time point, but a significant improvement in pain distress from assessment to 6-month follow-up, moving from the ‘moderate/severe’ category to the ‘mild/moderate’ category (−2.68). Similarly, although there is no significant reduction in BDI score at the end of the programme, there is a significant reduction from assessment to 6-month follow-up (−9.6). This indicates that the mean score has moved from the ‘moderate depression’ category at assessment to ‘mild depression’ at 6-month follow-up. Pain catastrophising did not demonstrate a significant change at either time point, whereas pain self-efficacy demonstrated a significant change at both time points (+10.62 and +10.97). There is no information available on the minimal important change required with the CPAQ. The measure states that higher scores indicate higher levels of acceptance ¹⁷ and scores increased by more than 15 points at both end of course and 6-month follow-up (+15.73 and +17.56). The COPM indicates significant improvements in both performance and satisfaction scores at both end of programme and 6-month follow-up (performance: +2.42 and +2.7 and satisfaction: +3.31 and +3.29). Both physical measures (sit to stand and 5-minute walk) did not indicate significant improvements at any time point.

Table 1.

Mean and standard deviation scores from outcome measures of CFP patients (n = 36) who attended assessment, completed the CFPMP and attended 6-month follow-up. Change in mean scores is highlighted as well as minimal important change (MIC) for each outcome measure.

	Pre-CFPMP mean score (standard deviation)	Post-CFPMP mean score (standard deviation)	Change in mean score from pre-CFPMP to post-CFPMP	Minimal important change (MIC)	Six-month follow-up (post-CFPMP) mean score (standard deviation)	Change in mean score from pre-CFPMP to 6-month follow-up post-CFPMP	Minimal important change (MIC)
Pain Intensity Numerical Rating Scale	7 (1.99)	6.28 (2.02)	−0.72	−1.5	6.29 (2.44)	−0.71	−1.5
Pain Distress Numerical Rating Scale	6.86 (1.97)	5.33 (2.43)	−1.53	−2	4.18 (2.35)	−2.68	−2
Beck Depression Inventory	24.36 (10.52)	19.44 (12.15)	−4.92	−5	14.76 (11.81)	−9.6	−5
Pain Catastrophising Scale	28.03 (11.68)	21.31 (13.03)	−6.72	−11	19.25 (12.11)	−8.78	−11
Pain Self-efficacy Questionnaire	20.6 (10.71)	31.22 (10.47)	+10.62	+10	31.57 (10.68)	+10.97	+10
Chronic Pain Acceptance Questionnaire Total	46.69 (14.59)	62.42 (18.25)	+15.73	Not identified	64.25 (16.23)	+17.56	Not identified
Canadian Occupational Performance Measure
Performance Score	3.39 (1.14)	5.81 (1.74)	+2.42	+2	5.66 (1.85)	+2.27	+2
Satisfaction Score	2.71 (1.36)	6.02 (1.98)	+3.31	+2	6 (2.2)	+3.29	+2
Sit to Stand	14.81 (9.05)	16.66 (8.15)	+1.85	+5	15.8 (7.44)	+0.99	+5
5-Minute Walk	290.75 minutes (130.94 minutes)	367.58 minutes (109.74 minutes)	+76.83	+96	355 minutes (128.95 minutes)	+64.25	+96

CFPMP: Chronic Facial Pain Management Programme; CFP: chronic facial pain.

Patient satisfaction questionnaires

Programme attendees completed a satisfaction questionnaire in their last week of the programme asking them to rank how helpful they had found individual aspects of the programme using a numerical rating scale (0 not helpful to 4 very helpful). They also had free text space to write down what the most and least helpful aspects of the programme were, and why. There was a tick box asking if they would rather attend a facial pain-specific programme, attend a programme with people who have various pain conditions or no preference. Finally, they were given open space to make any comments or suggestions for improvement of the programme. Satisfaction questionnaires were completed by 24 programme attendees. Twenty-two people (91.67%) ticked a box stating that they would prefer to attend a programme just for people with facial pain. The most helpful aspect of the programme was identified to be ‘Mindfulness’ by 11 respondents (45.83%), followed closely by 10 people (41.67%) saying that ‘meeting other people with facial pain’ was the most beneficial aspect. The main focus of comments about what was least helpful about the programme tended to relate to individual needs. For example, one participant stated that coping with flare-ups talk was not relevant to them as this is not the nature of their individual condition, and two people stated that the work and employment session was not relevant to them as they are retired/not working. Other comments around least helpful aspects of the programme related to difficulties with concentrating in sessions (two participants) and feeling like there was not enough time in sessions (two participants); however, 13 people (54.17%) left this section blank. When asked for suggestions for improvements to the programme, seven people (29.17%) suggested that the sessions should be longer in duration than 45 minutes.

Discussion

This article has aimed to describe the process of developing a CFP-specific PMP, and to present initial descriptive outcomes from running this programme. In their literature search prior to developing the programme, the authors found it difficult to find details of the structure and content of a similar programme. It is hoped that a detailed description of the process and content of such a programme will be helpful for other pain management services. The authors did not provide any detailed analysis of outcomes at this point, as they did not want to infer strong clinical opinions based on a limited sample size. However, preliminary data demonstrate significant improvements in mean scores at the end of the programme in pain self-efficacy and functional performance and satisfaction scores. There were also significant improvements in mean scores at 6-month follow-up for pain distress, depression, pain self-efficacy and functional performance and satisfaction scores, and increases in scores for pain acceptance at both time points. This suggests that the programme helped CFP patients who attended the programme to make significant changes in key areas in the long term. Pain intensity, catastrophising and physical measures (sit to stand and walking) did not demonstrate significant change in mean scores at either time point. It could be argued that pain intensity is not likely to change through attending a PMP, as the aim is not to change the pain itself, rather how the individual copes with the pain. The lack of improvement in physical measures matches with the team’s decision to make the CFPMP less intensive than our usual 16-day PMP, as it was anticipated from clinical experience that the level of physical function of CFP patients would be higher at baseline than those with more diffuse widespread pains, and therefore less physical gains to make. It is unclear why pain catastrophising scores did not demonstrate improvements, and this would warrant further research. Patient feedback is suggestive that delivering a programme that is tailored to the specific needs of people with CFP is beneficial, with the opportunity to interact with other people who have a CFP diagnosis. There were some limitations in developing the programme in terms of resources and time available, and this was reflected in patient feedback, where the main criticism of the programme was around limitations in session time. It would be helpful to compare the outcomes of a CFP-specific programme with outcomes of people with a diagnosis of CFP who attend a usual PMP along with people who have mixed chronic pain diagnoses. Caution needs to be exercised in replicating development of the described programme. It is recognised that this particular programme has been developed by an NHS England funded tertiary care level centre, by highly specialised clinicians who often deal with patients who have complex needs, and not all settings would be able to replicate this.

Conclusion

There could be benefits in other tertiary level pain services developing and providing a specialist CFP programme to address the specific needs of this population. There is a clear need for further development and clinical research into the effectiveness of multispeciality and interdisciplinary pain management approaches in CFP, when compared to treatment as usual. It would be informative to explore further in more detail the elements of pain management that are most beneficial to people with CFP.

Key findings

• Development of a CFP-specific pain management programme could be beneficial for patients with CFP.

• Access to a detailed description of the development process and content of such a programme will be helpful for other pain management services.