The absent health professional

A report by Arthritis Research UK The absent health professional The educational needs of nurses, allied health professionals and associate practitioners working with people with osteoarthritis or rheumatoid arthritis Sarah Ryan, Kate Lillie and Jo Adams 2013

Arthritis Research UK is the charity leading the fight against arthritis. We re the UK s fourth largest medical research charity and fund scientific and medical research into all types of arthritis and musculoskeletal conditions. We re working to take the pain away for sufferers with all forms of arthritis and helping people to remain active. We ll do this by funding high-quality research, providing information and campaigning. Everything we do is underpinned by research. This report arises from an education research grant funded by Arthritis Research UK, 2010 2011. The grant holders were Dr Sarah Ryan, Keele University, and Dr Jo Adams, University of Southampton. We re very grateful to all those who took part in the research. For more information on the projects we fund go to: www.arthritisresearchuk.org/research www.arthritisresearchuk.org

Executive summary 1 Overview of the project 4 Section I: Introduction and literature review 6 A. The most effective care pathway for people with OA or RA 1. OA care pathway 2. RA care pathway B. The educational needs of nurses, AHPs and APs working with people with OA or RA Section II: Methods 22 1. What we did 2. Focus groups: data collection 3. Survey: data collection 4. Ethical approval 5. Project steering group Section III: What we found 26 A. Focus Group 1: People with OA B. Focus Group 2: People with RA C. Focus Group 3: Rheumatology nurses and AHPs working with people with RA D. Focus Group 4: Non-rheumatology nurses, AHPs and APs working with people primarily with OA E. Survey results Section IV: Discussion of project findings 59 1. Key findings 2. Limitations of the study 3. Implications for the education and training of nurses, AHPs and APs References 65 Acknowledgements 68 Appendix 1: Arthritis training needs survey 69 Appendix 2: Members of the steering group 74 Appendix 3: Glossary 75

A note on the terminology used in this report (a) Associate practitioners (APs) refers to members of the healthcare team and/or members of the social care team who undertake tasks either delegated by, or under the supervision of, a registered professional to enhance the care of a person living with arthritis (RCN 2010). (b) Allied health professionals (AHPs) refers to all registered allied health professionals, including physiotherapists (PTs), occupational therapists (OTs) and podiatrists but not nurses (c) Rheumatology nurses and AHPs refers to nurses and AHPs who are employed solely to work with people with OA or RA. (d) Non-rheumatology nurses and AHPs refers to nurses and AHPs who are not employed solely to work with people with OA or RA but who will occasionally provide care to people with OA or RA. (e) Primary care nurses and AHPs refers to nurses and AHPs working within a GP surgery or health centre. (f) Multidisciplinary teams (MDTs) refers to rheumatologists, rheumatology nurses, AHPs and APs who are employed to work with people with OA or RA.

Executive summary Executive summary 1. Aim The aim of the study was to identify the educational needs of nurses, allied health professionals (AHPs) and associate practitioners (APs) working with people with osteoarthritis (OA) or rheumatoid arthritis (RA). Four focus groups were conducted with people with OA or RA, nurses, AHPs and APs and the findings from the focus groups informed the development of a national electronic questionnaire that was used to identify educational needs when caring for people with OA or RA. 2. Findings The main findings from the study were as follows: (a) Pain was the dominant overriding symptom identified by people with OA or RA yet there was a lack of service provision to help people manage their pain Pain was described by one participant with OA as like having radios on at different volumes. Participants perceived a lack of understanding from rheumatology nurses and AHPs regarding how debilitating the pain could be and the impact that the pain had on an individual, emotional and social level. People with OA or RA wanted to know how to manage their pain and to have someone to talk to when the pain had a negative effect on their mood. This help and support is not currently being provided. (b) People with OA or RA wanted access to information to maintain physical, psychological and social function People with OA or RA wanted access to information tailored to their individual needs to engage in self-management and maximise independence. This requires nurses and AHPs having conditionspecific knowledge and effective interpersonal skills. Rheumatology nurses and AHPs advocated a biopsychosocial approach when planning care. Arthritis Research UK 1

Executive summary The importance of patient support groups was identified in the provision of information and the contribution to the health and wellbeing of people with OA or RA (c) People with OA or RA wanted to access NHS services to maximise their independence but these were not available People with OA or RA referred to the absent health professional. They had limited or no access to physiotherapists (PTs) or occupational therapists (OTs) and in the case of people with OA no access to a nurse. They wanted access to nurses and AHPs to maximise their independence. People with OA felt there were no experts in OA and no service provision for people with OA. They wanted a specialist, an osteoologist, who would lead and develop OA services. Although rheumatology nurses and AHPs were confident that they had the knowledge and skills to manage the impact of OA and provide advice on how to self-manage pain, people with OA were not being offered the opportunity to access this expertise. Due to the lack of NHS OA services advice and care was sought from the private sector. (d) Implementing NICE guidelines was a myth rather than a reality Despite exercise being a core treatment in the NICE (2008) OA guidelines and recommended in the NICE (2009) RA guidelines, people with OA or RA reported a lack of access to nurses and AHPs with regard to obtaining information about what exercises to do and what exercise facilities to use in the community. All participants wanted to be able to access advice to make the process of maintaining their health easier. Some rheumatology nurses and AHPs did not feel they had the knowledge and skills to advise people with OA or RA on pain medication or on how to exercise. 3. What needs to be done? We need to campaign for services that are designed to help people with OA or RA manage their pain. Due to the lack of designated services nurses and AHPs are only likely to encounter people with OA when they consult for another 2 Arthritis Research UK

Executive summary medical reason, e.g. hypertension. We therefore need to educate nurses, AHPs and APs to have the knowledge and skills to provide advice on pain management and exercise whenever they encounter a person with OA. We need to provide innovative educational materials (e.g. case studies, interactive DVDs) and training on exercise and pain management that can be used within existing and new education programmes for nurses, AHPs and APs. To increase awareness of the care needs of people with OA a publicity campaign needs to be undertaken, centred around the message of the three e s: providing basic advice on Education, Exercise and Easing pain. We need to have regional champions who are nurses or AHPs who are sponsored by Arthritis Research UK to increase awareness of OA and RA amongst nurses, AHPs and APs. Further work needs to be undertaken to assess why people with OA or RA are not able to access rheumatology nurses and AHPs who have the knowledge and skills to care for their needs. Arthritis Research UK 3

Overview of the project Overview of the project 1. Background Arthritis Research UK has already funded (as the Arthritis Research Campaign, arc) an investigation into the clinical skills and knowledge required by rheumatology nurses and AHPs (Carr 2001). The findings from this national survey influenced and informed the content of several innovative postgraduate courses within rheumatology, including the Graduate Certificate in Rheumatology Practice and the MSc in Clinical Rheumatology Nursing. Since Carr s survey there have been many new clinical developments. The introduction of new therapeutic agents such as biologic drugs and the publication of evidence-based guidelines to optimise care for patients with OA or RA (NICE 2008, 2009) are examples. These developments have major implications for rheumatology nurses and AHPs who need to be aware of, and understand, the new clinical evidence before it can be disseminated and implemented. Also as more direct support and care is being provided by APs it is important to understand their educational needs. 2. Aim The aim of the study was to identify and define the educational needs of nurses, AHPs and APs working with people with OA or RA. 3. Methodology Stage 1: Focus groups were conducted with people with OA or RA, rheumatology and non-rheumatology nurses, AHPs and APs to identify the health and social care needs of people with OA or RA and the knowledge and skills possessed and needed by rheumatology and non-rheumatology nurses, AHPs and APs to provide effective care for people with OA or RA. Stage 2: The findings from the focus groups informed the development of an electronic questionnaire. This was distributed nationally to rheumatology nurses and AHPs and APs to identify their educational needs when working with people with OA or RA. 4 Arthritis Research UK

Overview of the project This is summarised in the table below. Stage of Project Participant Group Number of Participants Focus Group 1 People with OA 5 Focus Group 2 People with RA 8 Focus Group 3 Focus Group 4 Survey Rheumatology nurses and AHPs working with people with RA 5 Non-rheumatology AHPs and APs working with people with OA 5 Rheumatology nurses, AHPs and APs 162 4. Results One hundred and sixty-two respondents completed the survey. The largest occupational group was rheumatology nurses (58%). 55% of respondents spent over 50% of their time working with people with RA whilst only 7% of respondents primarily worked with people with OA. Twenty-three participants (including people with OA, RA, rheumatology nurses and nonrheumatology nurses, AHPs and APs) took part in the focus groups. Overall, respondents were more confident in their knowledge and skills in caring for people with RA rather than OA. Respondents were not confident in providing advice on exercise and pain medication for either condition, despite both these interventions being valued highly by all participants of the focus groups and an essential component of selfmanagement for all long-term conditions. 5. Conclusion There is a need to develop effective education materials for all nurses, AHPs and APs with an emphasis on the 3 e s: Education, Exercise and Easing pain. Arthritis Research UK 5

Section I Introduction and literature review Section I Introduction and literature review The vision of a National Health Service (NHS) built around patient need is a central principle for ongoing NHS reforms (DH 2000, DH 2011). Two factors that have been essential in supporting these changes have been a drive towards evidence-based care to ensure that services are focused on interventions that are known to be effective, and a recognition that the workforce needs to be trained and equipped to respond appropriately and flexibly to the new models of care as they emerge (DH 2011). It is suggested that the management of musculoskeletal diseases should be multidisciplinary, structured around the patient journey and defined as an integrated care pathway (DH 2006). Therefore the literature was explored to identify: 1. The most effective care pathway for people with OA or RA 2. The educational needs of all nurses, AHPs and APs working with people with OA or RA. A. The most effective care pathway for people with OA or RA There is a growing recognition of the need to integrate services to improve the care of people with long-term conditions like arthritis (King s Fund 2007). Initiatives such as the Musculoskeletal Service Framework (DH 2006) have been designed to develop a more systematic, evidence-based proactive approach to chronic disease management. The aim is to secure consistent, evidence-based care for all patients. For this reason the search strategy informing this review focused on pre-appraised evidence and guidelines for practice from reputable national organisations that support the provision of musculoskeletal care within the United Kingdom (UK), including the Department of Health (DH), National Institute for Health and Clinical Excellence (NICE), NHS Evidence, Cochrane Collaboration, King s Fund, Scottish Intercollegiate Guidelines Network (SIGN) and National Audit Office (NAO). Publications produced by patient organisations, including the Arthritis and Musculoskeletal Alliance (ARMA), and professional organisations (for instance, the Royal College of Nursing (RCN), College of Occupational Therapists (COT), College of Social Work (CSW) and the British Society for Rheumatology (BSR)) were also included in the search. 6 Arthritis Research UK

Section I Introduction and literature review The main inclusion criterion was that the guidance focused on the total care management of adults with OA or RA. Guidelines that focused only on specific pharmacological treatments, individual joints and children with musculoskeletal conditions were excluded. Guidance that was not specific to musculoskeletal care was also excluded (for instance, social work guidelines regarding the care of the elderly were omitted as there was no specific reference made to people with arthritis). Research published before 2000 was not included in this review. The findings from the literature review were integrated to identify the components of an optimal care pathway for (a) people with OA and (b) people with RA. 1. OA care pathway OA is a metabolically active process which can be described in terms of tear, flare and repair. The tear represents aetiological factors such as overuse, obesity or malalignment, the flare the role of inflammation in OA, and repair the repair processes in and around the joint (Porcheret et al 2011). It is estimated that 12% of people over the age of 65 years have symptomatic OA (Brouwer et al 2005). Osteoarthritis is more common in women, with the exception of hip OA in which men are equally affected (Doherty et al 2006). OA is the most common cause of disability in the UK (ARMA 2004a). The prevalence of OA in the UK is increasing as the population ages and obesity becomes more common, as both age and obesity are risk factors for arthritis (ARMA 2004a). However, it is important to note that OA is not an inevitable part of the aging process (NICE 2008, Birrell et al 2011). Although there is no known cure, treatment designed for individual patients can reduce pain, improve and/or maintain joint mobility and enhance quality of life (NICE 2008, Porcheret et al 2011). The OA Nation survey (n=1762) found that just over 80% of people with OA experienced constant pain or were limited in their scope to perform everyday tasks (Arthritis Care 2004), drawing attention to the need for nurses, AHPs and APs to be proficient in this area of care. Typically an individual had visited their general practitioner (GP) three or four times before the disease was diagnosed around 18 months after the symptoms first appeared. One in eight of the respondents had lived with the disease for over 25 years and many also had a concomitant medical condition (Arthritis Care 2004). Guidance regarding the effective care of people with OA relates to four key stages of a patient journey: pre-diagnosis, diagnosis, treatment and living well with OA. Arthritis Research UK 7

Section I Introduction and literature review (a) Pre-diagnosis Lifestyle advice on exercise and preventing obesity can promote joint health and reduce the incidence of OA: for instance, about half of all knee OA may be preventable (ARMA 2004a). Consequently there is a need to increase the awareness of OA in the general public (ARMA 2004a). The common misconception that OA is a slowly progressive disease that inevitably gets worse and results in disability over time and with increasing age must be challenged (NICE 2008). Increasing awareness of the early signs of OA should enable people to recognise symptoms and seek help in a timely and appropriate manner (ARMA 2004a). Accurate information promotes independence and self-management, allowing people with OA to be active partners in care and engage in decision-making, taking responsibility for their own musculoskeletal health including lifestyle measures such as weight loss and appropriate exercise (ARMA 2004b). (b) Diagnosis An accurate diagnosis is a pre-requisite to people receiving appropriate treatment. The diagnosis will arise from a comprehensive clinical history and musculoskeletal examination. In some instances blood tests and x-rays are required to exclude differential diagnosis, including other musculoskeletal diseases (NICE 2008, Map of Medicine 2010). At the time of diagnosis positive and constructive messages about choice of treatments, care providers and available services should be given (ARMA 2004a, NICE 2008, Map of Medicine 2010). An holistic assessment of the impact of OA on daily life should also be undertaken at the time of diagnosis (NICE 2008). This should not be restricted to the assessment of pain, mobility and other symptoms but should include an assessment of the impact on work and social role, the effect on mood and sleep and an exploration as to how the individual is coping (NICE 2008). Consideration should also be given to the patient s knowledge and thoughts about OA as this is an opportunity to ensure that individuals with OA have accurate, up-to-date information about the condition and treatment. (c) Treatment The aim of treatment is to reduce joint pain and stiffness and maintain and improve joint mobility to maximise quality of life and limit the progression of joint damage (Zhang et al 2008). Three core non-pharmacological interventions are recommended by NICE (2008) (see Box I.1). 8 Arthritis Research UK

Section I Introduction and literature review BOX I.1: Three core non-pharmacological treatments (NICE 2008) Exercise is considered to be a central tenet of care for almost everybody with OA irrespective of age, co-morbidity, pain severity and/or disability. It should include exercise that focuses on both local muscle strengthening and general aerobic fitness. Weight loss (when people are overweight or obese). Education written and verbal evidence-based advice about living with OA should be available. These three core interventions should be combined with adjuvant pharmacological and non-pharmacological measures as needed (NICE 2008, Zhang et al 2008, Map of Medicine 2010). Exercise For musculoskeletal health it is recommended that adults take 150 minutes of moderately intense aerobic physical activity throughout the week (WHO 2010). The risk of musculoskeletal injury for this level of activity is low, although it is suggested that people with musculoskeletal disease start with lower levels of exercise and gradually build up to this level to prevent injury (WHO 2010). The recommendation that individuals take 30 minutes of moderate activity on at least 5 days a week to promote joint health (NICE 2006) is also applicable for many individuals, although the advice for people with arthritis should take into account their individual needs, preferences and circumstances. Weight loss Weight management programmes should include behavioural change strategies to increase people s physical activity levels or decrease inactivity, improve eating behaviour and the quality of an individual s diet and reduced energy intake (NICE 2006). Education Involves access to appropriate information to enhance understanding of OA and to reduce the misconception that OA is inevitably progressive and cannot be treated. People with OA also need to have information on what services are available to them and how they can access existing services. Pharmacological treatments People with OA perceive pain as having the greatest detriment to their quality of life (Healey and Tyler 2010). Paracetamol and topical non-steroidal anti-inflammatory drugs (NSAIDs) are recommended as first-line pharmacological treatment due to their relative safety (NICE 2008). Recommended adjuvant pharmacological treatments include capsaicin, oral NSAIDs and COX-2 inhibitors, opioids and intra-articular corticosteroid injections depending on the individual s needs and situation (NICE 2008). Arthritis Research UK 9

Section I Introduction and literature review Non-pharmacological treatments There are a wide variety of recommended non-pharmacological treatments that support pain control and enhance mobility (Porcheret et al 2011). Transcutaneous electrical nerve stimulation (TENS) and thermotherapy have proven effectiveness (NICE 2008). Providing advice on the use of walking aids, knee braces and appropriate footwear can enhance mobility (Zhang et al 2008). Assistive devices, including tap turners, are useful to address specific problems with activities of daily living (NICE 2008). Surgery Joint-replacement surgery is indicated when there is refractory pain, stiffness and reduced function. Surgery should be offered before prolonged pain and functional limitations restrict quality of life (NICE 2008). It should be offered irrespective of age, gender, lifestyle or the presence of co-morbidity. The decision for surgical referral should be made by the person with OA and their clinician rather than the use of a specific scoring tool (NICE 2008). (d) Living well with OA Everyone with OA should have a regular treatment review where the focus is on developing individualised care plans that reflect the need of the individual (ARMA 2004a, NICE 2008), with rapid access to nurses and AHPs if symptoms worsen (ARMA 2004a). Services for people with OA need to be accessible to people with a range of disabilities, located in fully accessible buildings with disabled parking and good public transportation links and with indoor facilities including appropriate chairs in waiting rooms (ARMA 2004b, DH 2006). In addition people with OA may require support to enable them to remain in work, education and other socially important roles (ARMA 2004a). This often requires a co-ordinated approach between health services and other service sectors, including social care services, benefits offices and housing services (ARMA 2004b, DH 2006). Multidisciplinary support (see Box I.2) should be available to people living with OA at the time when it is required, and people need to know what services are available and how to access them (DH 2006, NICE 2008, Map of Medicine 2010, ARMA 2004b). There is significantly less emphasis on this aspect of care in the guidance regarding people with OA compared to that for people living with RA. 10 Arthritis Research UK

Section I Introduction and literature review BOX I.2: Multidisciplinary support Complementary therapists Dieticians GPs Nurses OTs Orthopaedic surgeons PTs Podiatrists As OA is common in the older age group many people will also be living with other co-existing conditions that need to be considered when planning and managing care (NICE 2008, Map of Medicine 2010). For example, a person s ability to adhere to exercise will be affected by many co-morbid conditions, including angina, chronic obstructive pulmonary disease, previous stroke or obesity (NICE 2008). Moreover co-morbidity can influence the choice of pharmacological treatments (notably if there is a history of duodenal ulcer, chronic kidney impairment, heart failure or liver problems). Advice on living with the condition should be integrated with information about how to access local support groups, helplines, and national charitable organisations that support people with OA (ARMA 2004b). The OA care pathway is summarised in Figure I.1. 2. RA care pathway RA is a chronic progressive inflammatory condition that causes pain, stiffness and inflammation of the joints with the potential for systemic manifestations. RA can impact on physical, psychological and social function, leading to disability and increased mortality. In England there are approximately 580,000 adults with RA, with 26,000 new cases of RA diagnosed every year (NAO 2009). Although the cause of the condition is unknown, there are a wide range of pharmacological and nonpharmacological interventions that can help the individual to manage their symptoms and reduce disability. As RA is a condition that affects individuals differently the care pathway that was used to underpin the literature review needs to be applied flexibly with regard to individual patient needs and preferences. The RA care pathway can be considered as four key stages of care: pre-diagnosis, diagnosis, treatment and living well with RA. Arthritis Research UK 11

Section I Introduction and literature review FIGURE I.1: OA care pathway OA care pathway Pre-diagnosis Information to enhance awareness about OA Diagnosis Clinical history and examination Treatment Education, weight management and exercise Living well with OA Optimising function (a) Pre-diagnosis As earlier identification of the condition and appropriate referral and treatment is associated with improved outcome and quality of life for people with RA, there is a need to increase awareness of the early symptoms of RA in primary care nurses and AHPs as well as members of the public. Raising public awareness would include providing lifestyle advice on exercise, the role of diet (drinking orange juice, reducing intake of red meat (Pattison et al 2004)), weight-management where appropriate and smoking cessation, as well as helping people know when to approach their GP when their symptoms first appear. People with RA often delay seeking help with early symptoms and on average visit their GP four times prior to diagnosis (NAO 2009). Referral to a rheumatologist is recommended for any person with suspected persistent synovitis or if any of the following criteria apply: (a) the small joints of the hand and feet are affected, (b) more than one joint is affected, or (c) there has been a delay of 3 months or longer between the onset of symptoms and seeking medical advice (NICE 2009, King s Fund 2009, ARMA 2009, Luqmani et al 2006). Effective communication is required between primary care and rheumatology services to reduce delays in diagnosis (NICE 2009, King s Fund 2010). A GP is likely to see less than one new case of RA a year (NAO 2009). Consequently greater emphasis is needed on the teaching of musculoskeletal conditions during GP training to enable the recognition of symptoms that could be indicative of RA (DH 2006, ARMA 2009, Luqmani et al 2006). Encouraging 12 Arthritis Research UK

Section I Introduction and literature review health commissioners to include the needs of people with RA in the Quality and Outcomes Framework (QOF) would increase GP accountability for the management of RA patients (ARMA 2009). (b) Diagnosis A comprehensive clinical history, physical assessment and clinical investigations including blood tests and radiological examinations aid the diagnosis of RA. The association between the early instigation of aggressive pharmacological treatment and an improved outcome in individuals with RA is well established. Optimum communication, including the establishment of easy referral pathways, between primary care and the rheumatology multidisciplinary team is required to reduce delays in diagnosis (NICE 2009, King s Fund 2009). The NAO (2009) recommends urgent referral to an early arthritis clinic for people with undifferentiated symptoms to speed up diagnosis. Following diagnosis it is recommended that the patient spend time with a named link member of the MDT to discuss the social and healthcare implications of the new diagnosis and to co-ordinate care management (Luqmani et al 2006, ARMA 2004b). Access to readily available sources of written and web-based information that has been assessed for quality and applicability as well as signposting people to local and national support groups where accurate, up-to-date information could be obtained should be available. (c) Treatment: the first 2 years The aim of treatment during the initial years is to control synovitis, maintain function, reduce symptoms, and foster and develop selfmanagement skills through a combination of pharmacological and non-pharmacological treatments (see Boxes I.3 and I.4). (d) Living well with RA (including treatment after the first 2 years) The aim of ongoing treatment is to minimise disease activity and to address complications (and associated co-morbidities). In addition strategies to optimise physical, psychological and social function will minimise the impact of RA on the individual s quality of life (Luqmani et al 2009). Ongoing treatment will involve regular medical review until synovitis is under control, at which stage an annual review is appropriate to assess the continued effectiveness of treatment and self-management strategies. The annual review will also involve the screening (and management) of co-morbidities. Specific activities of the annual review (NICE 2009) are shown in Box I.5. Arthritis Research UK 13

Section I Introduction and literature review BOX I.3: Pharmacological treatments during the first 2 years of treatment As soon as the diagnosis has been confirmed pharmacological treatment should be commenced. The emphasis should be on rapid and aggressive escalation of first-line treatment (diseasemodifying anti-rheumatic drug (DMARD) combination) with regular appointments to monitor effect and biological therapy commenced after the use of two DMARDs if control of synovitis has not been achieved (Luqmani et al 2006, NICE 2009, SIGN 2011) Short-term use of steroids to suppress early disease (NICE 2009, SIGN 2011), including intra-articular and intra-muscular steroid injections When disease control is achieved medication can be reduced to the minimum level needed to maintain control (NICE 2009, SIGN 2011) Symptom control with analgesia and NSAIDs to treat pain and stiffness (SIGN 2011) BOX I.4: Non-pharmacological treatments during the first 2 years of treatment Personalised care plans with patients highlighting what they perceive to be important, with a named contact person (King s Fund 2010, NICE 2009) Access to the appropriate members of the MDT. Lack of coordinated MDT services results in many people not receiving holistic care (NAO 2009) Occupational advice linked to the Department for Work and Pensions return-to-work advice (DH 2006), with the MDT supporting people returning to work (King s Fund 2010) Education and self-management strategies for fatigue and sleep, pain, anxiety, body image, exercise and rest, diet (weight loss if required) and specific joint care advice An early surgical opinion should be sought if there is persistent pain resulting from joint damage, worsening joint function and/or progressive deformity that has not responded to optimal non-surgical management (NICE 2009). 14 Arthritis Research UK

Section I Introduction and literature review BOX I.5: Activities of the annual review Assess disease activity and damage Screening, identification and management of co-morbidities including hypertension, ischaemic heart disease, osteoporosis and depression Check for complications such as vasculitis, disease of the cervical spine, lung or eye involvement Organise cross-referral within the MDT Assess the need for surgery Assess the effect RA is having on a person s life Take co-morbidities into account when selecting pharmacological treatments Patients with significant disability including medium high work instability should be reviewed annually to minimise general and work disability. The National Rheumatoid Arthritis Society (NRAS) reported in their ARMA Standards of Care: Patients Experiences (NRAS 2006) that only 4% of patients were reviewed annually by an occupational therapist and nearly 70% were reviewed less often. Similar statistics applied to nurses and other AHPs. The RA care pathway is summarised in Figure I.2. Arthritis Research UK 15

Section I Introduction and literature review FIGURE I.2: RA care pathway RA care pathway Pre-diagnosis Education about symptoms Diagnosis Clinical history, examination and investigations Treatment: first 2 years Controlling synovitis and managing symptoms Living well with RA Optimising physical and social function In conclusion the recommendations for an optimal care pathway for people with either OA or RA are detailed in Box I.6. BOX I.6: Recommendations The need to increase public awareness of OA and RA The need for early diagnosis An holistic assessment including the physical, psychological, spiritual, financial, and social (including employment) impact of arthritis Involving the patient in all aspects of their care Ensuring the patient has access to high-quality information regarding choice of treatments, care providers and available services The implementation of the pharmaceutical and nonpharmaceutical interventions recommended by NICE Regular or appropriate treatment review 16 Arthritis Research UK

Section I Introduction and literature review B. The educational needs of nurses, AHPs and APs working with people with OA or RA This section comprises an overview of the MDT, the main roles of nurses and AHPs (Box I.7), and the educational needs of particular groups under specific subheadings. The search strategy, for this section of the literature review, focused on information provided by national and/or professional bodies about the clinical roles and training needs of nurses and AHPs working with people with arthritis. Hence the websites of the British Health Professionals in Rheumatology (BHPR), RCN, Chartered Society of Physiotherapy (CSP), COT, CSW and the British Association of Social Workers (BASW) were searched. Information was also sought from national organisations that support the provision of musculoskeletal care within the UK, including the DH, NICE, King s Fund and NAO. 1. Overview of the MDT Core members of the MDT for people with RA include medical practitioners (including GPs, surgeons and rheumatologists), rheumatology nurses and other AHPs (including, PTs, OTs, pharmacists, dieticians and podiatrists). The main roles undertaken by rheumatology nurses and AHPs are listed by BHPR (BHPR 2012). These are given in Box I.7. People with OA often have less access to rheumatology nurses and AHPs and will make use of complementary professionals (such as osteopaths) and private PTs. APs APs are integral team members (DH 2008) and have an important role in supporting people with RA or OA. The role can vary depending upon the area in which they are employed as lack of regulation means that there is little standardisation of roles, competencies and educational qualification (RCN 2010). APs are frequently employed under a wide range of job titles and job descriptions (RCN 2010). Their role is to attend to the basic care needs of individual patients under the direction and supervision of nurses and AHPs but accountability for ensuring that guidelines are implemented will usually lie with the nurse or AHP (RCN 2010). Arthritis Research UK 17

Section I Introduction and literature review BOX I.7: Main roles of rheumatology nurses and AHPs Rheumatology nurse Provides education to patients and families to enable them to selfmanage condition and symptoms (including pain, stiffness and fatigue) Psychological support: ongoing from time of diagnosis Explanation of drugs and monitoring: enabling informed consent Co-ordinates care including running a telephone helpline Runs clinics for patients with RA Assessment, administration and ongoing management of patients receiving biologic and cytotoxic therapy Occupational therapist Aims to improve/maintain a person s ability to carry out daily life tasks Helps with adapting the environment, the activity and the individual s ability to engage with task Work interview, job analysis, work site assessments, work interventions including verbal and written advice, work reports, liaison with employers etc Provides orthotics Joint Protection and Fatigue Management Groups using educational/ cognitive behavioural techniques Physiotherapist Promotes appropriate exercise Works in conjunction with patients to achieve and maintain optimal function Detailed assessment of patient s current status, results discussed with patient to devise an individualised goal-orientated treatment plan Provides education and support for self-management Promotes independence with activities of daily living through physical modalities Pharmacist Promotes safe and effective use of medication in arthritis Responds to queries about combination of medication for co-morbid conditions Rationalises drug therapies: critical appraisal of healthcare resource utilisation Works with trials of new treatments and trial protocols continued/ 18 Arthritis Research UK

Section I Introduction and literature review /continued Dietician Translates the most up-to-date research on food, health and disease into practical guidance to enable people to make informed choices Assesses impact and evaluates progress due to change in diet Liaises with family to make dietary change practical and feasible Podiatrist Works in partnership with the patient to reduce foot pain, maintain/improve foot function and mobility and protect foot from damage Assesses lower limb musculoskeletal function and neurovascular status Advises on self-care of the feet and suitable retail footwear Provides foot orthoses, specialist footwear and intra-articular steroid injections 2. Educational needs of undergraduate nurses and AHPs Hewlett et al (2008) advocated that the nursing, physiotherapy and occupational therapy undergraduate curricula should include: Anatomy and physiology with respect to OA and RA (alongside routine clinical tests) Assessment (with a particular emphasis on an holistic approach, including the patient perspective) Management and intervention strategies Psychosocial issues involved in living with a long-term condition Patient education/self-management The roles of the MDT members The importance of students obtaining clinical experience through working with people with arthritis before qualifying is strongly emphasised as this experience can help students to understand what can be achieved by the multidisciplinary care of people with OA or RA (Hewlett et al 2008). It is further suggested that case studies can be a successful way of integrating education about OA or RA into the undergraduate curriculum. Arthritis Research UK 19

Section I Introduction and literature review 3. Educational needs of non-rheumatology nurses and AHPs Nurses and AHPs should be able to contribute to the care of people with long-term conditions, including arthritis (King s Fund 2005). The key multidisciplinary general guidance for nurses and AHPs is NICE Clinical Guideline 59: The care and management of osteoarthritis in adults (2008) and NICE Clinical Guideline 79: The management of rheumatoid arthritis in adults (2009). The three key areas for service and educational development to support this are (King s Fund 2005): 1. Improving nurses and AHPs skills to support self-management 2. Improving information (about disease and service availability) 3. Increasing flexibility to fit with patients other commitments. A core requirement for enabling people to self-manage their condition is a good relationship between nurses and AHPs and the patient with time for communication to ensure that people s own concerns are heard, discussed and incorporated into care planning (King s Fund 2005). It is suggested that education and training need to equip professionals to work with patients in the context of their own life experience, to encourage shared decision-making and to ensure that professionals also provide up-todate written information about disease progression and treatment options to enable people to absorb information at their own pace (King s Fund 2005). One area that is of particular importance in RA is that non-rheumatology specialists (especially but not exclusively GPs) are able to identify the signs and symptoms of the disease early and refer patients to specialist services as early treatment can improve patient outcomes in the long term (King s Fund 2009). 4. Educational needs of rheumatology nurses and AHPs As early as 2001 Carr proposed that as a minimum requirement rheumatology nurses and AHPs should attend a national, validated rheumatology-based course and that this should be combined with documented in-house supervision and training in clinical skills to assess clinical competency (Carr 2001). In practice there is little standardisation of educational requirements for rheumatology nurses and AHPs working with people with OA or RA but there are recommendations regarding the roles and responsibilities of specific professional groups endorsed by professional bodies. 20 Arthritis Research UK

Section I Introduction and literature review 5. Educational needs of APs caring for people with OA or RA APs are increasingly involved in the delivery of direct care to people with OA or RA. As yet there is no published evidence as to what the educational needs of APs are when delivering direct care to people with OA or RA. Arthritis Research UK 21

Section II Methods Section II Methods 1. What we did The aim of the study was to identify and define the educational needs of nurses, AHPs and APs working with people with OA or RA. To address this aim we: Conducted focus groups with people with OA or RA, rheumatology nurses and non-rheumatology nurses, AHPs and APs. The aim of the focus groups was to identify the health needs of people with OA or RA and the knowledge and skills required by nurses, AHPs and APs to address these needs. Used the data from the focus groups to design an electronic questionnaire and conducted a national survey of rheumatology nurses, AHPs and APs to identify the educational needs involved in caring for people with OA or RA. (a) Why we did what we did Previous research into the educational needs of rheumatology nurses and AHPs (Carr 2001) was carried out prior to the introduction of new therapies (such as biologic treatment) and new professional roles (nurse and AHP consultant roles); both of these advancements will have had an influence on educational needs. The amount of direct care provided by APs has increased, hence it is important to understand the needs of these practitioners (DH 2008, RCN 2010). There is also very little information from a service user perspective regarding the knowledge and skills people with OA or RA expect nurses and AHPs to have to address their physical, psychological and social care needs. (b) Recruitment (i) Focus groups Rheumatology nurses and AHPs were recruited via email communication with professional organisations: BHPR, RCN, COT, Rheumatology Physiotherapy Specialist Interest Group, Rheumatology Podiatry Association and the West Midlands Rheumatology Forum. APs were initially recruited via email communication with trade unions, social services, local authorities, Leonard Cheshire 22 Arthritis Research UK

Section II Methods organisation, Community Service Volunteers, British Association of Social Workers and professional organisations (including nursing, physiotherapy and occupational therapy). Unfortunately this resulted in only two potential participants, both of whom had RA and were seeking access to a support group rather than contributing to a research project. Consequently a member of the national steering group for the project used personal contacts to recruit APs. People with OA or RA were recruited through patient support organisations including Arthritis Care and NRAS. Recruitment was conducted via email contact, Facebook and Twitter. (ii) Survey The following organisations were asked to send an email invitation to their membership which contained an electronic link to the survey: Nursing and AHP organisations: BHPR, RCN Rheumatology Forum (RCNRF), COT, CSP Rheumatology Physiotherapy Specialist Interest Group, PRCA and Unison AP organisations: CSP associate membership and RCN associate membership Other organisations: Leonard Cheshire organisation, social services, local authorities and Community Service Volunteers 2. Focus groups: data collection Four focus groups were held to identify the educational needs of nurses, AHPs and APs (see Box II.1). Each focus group lasted between an hour and an hour and a half. The location and dates of the focus groups are detailed in Box II.2. BOX II.1: The focus groups Focus Group 1: Five people with OA Focus Group 2: Eight people with RA Focus Group 3: Two rheumatology nurses and one PT lecturer. One OT and one podiatrist contributed via telephone interviews. Focus Group 4: Non-rheumatology AHPs and APs: two OTs (working for social services), two OT APs and one orthopaedic PT Arthritis Research UK 23

Section II Methods Box II.2: Focus group locations and dates Focus Groups 1 and 2 were held at the London office of Arthritis Research UK in January 2011. Focus Group 3 was held at the Clinical Education Centre at Keele University in February 2011. Focus Group 4 was held at the Jean Mackie Centre in Dunfermline in May 2011. (a) Topic guides The topic guides used in the four focus groups consisted of two or three open questions (see Box II.3) that were used to stimulate discussion. This ensured that the information from the groups was participant-led rather than researcher-determined. (b) Data analysis All focus groups were audiotaped and typed verbatim. The data was analysed by two researchers and compared across all the groups to identify commonalities and differences. 3. Survey: data collection The findings from the focus groups were used to develop an electronic questionnaire (see Appendix 1) to be distributed to a wider audience of rheumatology nurses, AHPs and APs to identify educational needs. The recruitment strategy for the survey is explained in Section II.1(b). The questionnaire consisted of two case studies relating to a person with OA and a person with RA. The survey was conducted over 6 weeks. Once this period had ended the results were analysed using descriptive statistics. 24 Arthritis Research UK

Section II Methods BOX II.3: Topic questions Questions for people with OA or RA (Focus Groups 1 and 2) 1. What have been your key contacts (meaningful contacts) with nurses and AHPs? 2. Can you describe why these key contacts have been meaningful to you? 3. What are the key knowledge and skills that nurses and AHPs require to look after your needs? Questions for rheumatology nurses and AHPs (Focus Group 3) 1. What are the key health and social care needs of people with RA? 2. What knowledge and skills do nurses and AHPs need to address the needs of people with RA? Questions for non-rheumatology nurses, AHPs and APs (Focus Group 4) 1. What are the key health and social needs of people with OA? 2. What are your training needs to provide effective care for people with OA? 4. Ethical approval Ethical approval for the study was obtained from the Keele University Ethics Review Panel. 5. Project steering group A steering group consisting of national experts in this field was appointed to oversee the project (see Appendix 2). Arthritis Research UK 25

Section III What we found Section III What we found A. Focus Group 1: People with OA Five people living with OA participated in the focus group (see table). There were four women and one man. The women had lived with OA for over 10 years. The man had been diagnosed 7 years previously. Demographic Age Male/Female Duration of OA Information: Participant 1 59 Female 15 years Participant 2 41 Female Secondary OA from childhood inflammatory arthritis Participant 3 61 Female Over 20 years Participant 4 64 Male 7 years Participant 5 63 Female Since her late 40s Five main themes arose from the focus group (see Box III.1). Representative comments have been selected from the group and included in the text below (P1 = Participant 1 etc). BOX III.1: Themes from Focus Group 1 Theme 1: Theme 2: Theme 3: Theme 4: Theme 5: The impact of living with OA No experts in OA Being treated as an individual Living with pain The absent nurse and AHP 26 Arthritis Research UK

Section III What we found Theme 1: The impact of living with OA Participants referred to the loss of valued activities that had resulted from living with OA and the variability of symptoms and emotional response to living with a long-term condition, which included frustration and annoyance. I used to go to football and I was walking back and forth to the ground each day, that was every day, seven days a week, so I lost all that. I can t do that, I can t go there anymore and all sorts of things like that... Nobody can understand that it can differ all the time. (P4) I used to play golf. I haven t now for 18 months as I can t because of the hips. (P1) Knowing what you used to be able to do and you cannot now. It is not that you don t want to do it. You physically cannot do it. And it is very, very annoying. (P1) When you re in agony and you can t do what you used to do, you re dropping things, you can t walk very far, to be told it is just wear and tear is patronising. (P3) Theme 2: No experts in OA All participants felt there was an absence of service provision for people with OA which led to people having to rely on information that they had obtained themselves. There was an identified need to have designated specialist consultants who managed the care of people with OA. Four participants had seen a consultant either a rheumatologist or a back specialist but these consultants were not perceived as experts in OA. There s nobody that appears to be an expert in osteoarthritis. You ve got various people that work in mechanics of joints but nobody like a rheumatologist, an osteologist or what appears to specialise in that, and I think there really should be. There s so many of us! (P3) You don t get experts in OA. (P1) It s like someone says, just take your pill. It s age, wear and tear, it isn t improved. I would have liked to have been referred to some sort of consultant. (P4) Most participants felt that their condition was seen as something that was not important, they did not feel from their experiences that they could re-consult, and the lack of importance attached to living with OA was reflected in the absence of any ongoing care. Also there was no-one they could contact if the treatment that had been recommended such as exercise was not effective. I would have liked not to have been dismissed as if it was something silly like a boil. It was trivialised. (P3) Not to have been given the impression that I was not to come back and bother them with the condition again. I would like to have been told if it does get worse please come back and we will sort something out for you. (P3) Arthritis Research UK 27