Hitting the target in rheumatoid arthritis

Transcription

1 Hitting the target in rheumatoid arthritis This supplement has been funded by Abbott, with content led by members of the TRACK steering committee. Date of preparation: April 2012 AXHUR pager.indd 2 16/04/ :16

2 BOX 1 cover image: Alamy What is DAS28? For several years the Treat to Target concept has been adopted as best practice in the management of chronic diseases such as diabetes, hypertension and hypercholesterolaemia (National Institute for Health and Clinical Excellence (NICE) 2003, 2011, Williams et al 2004, Nathan et al 2009, Reiner et al 2011). Patients with these conditions have benefited from meeting their clinical and personal goals. There is mounting evidence that structured disease management using the treatment target of low-disease activity or remission results in better rheumatoid arthritis (RA) outcomes compared with traditional patient follow up (Grigor et al 2004, Goekoop-Ruiterman et al 2007, Verstappen et al 2007). DAS28 is a combined index measuring the disease activity in people with rheumatoid arthritis. The DAS28 technique allows clinicians to collect valuable information in daily clinical practice settings. DAS28 is based on: An assessment of 28 joints for joint line swelling and tenderness. A measure of general health using the visual analogue scale (VAS) score. The acute phase response calculated using either erythrocyte sedimentation rate (ESR) result or C-reactive protein (CRP) result tender joints swollen joints (Lin ESR) (Patient global VAS) = DAS28 DAS28 provides a number on a scale from 0 to 10 that indicates the current activity of the disease: Remission DAS28 <2.6. Low DAS28 <3.2. Moderate DAS to 5.1. High DAS28 >5.1. The overarching principles of Treat to Target in RA are simple (Smolen et al 2010): Patients and rheumatologists should make treatment decisions together. Treatment aims are to maximise long-term, health-related quality of life by effectively controlling symptoms, preventing joint damage, and normalising physical functioning and social interaction. Eliminating inflammation will facilitate the achievement of treatment goals. Disease activity should be measured regularly and therapy adjusted to optimise outcomes. In the UK, Treat to Target is in line with the NICE RA management guidelines (NICE 2009). Many centres have already embraced these guidelines and started to implement the associated principles. However, translating what a fall in the Disease Activity Score for RA (DAS28) (Prevoo et al 2005) means functionally to the patient is a difficult concept and personal goals are often not addressed appropriately (Box 1). Treat to Target principles The principles of Treat to Target are practical and attainable. However, escalation of and adherence to therapies to reach ambitious treatment targets can be difficult to achieve if patients do not understand how this approach can help to achieve personal goals. A recent study highlighted that the five most important factors that affect treatment decisions in RA differ hugely between patients and healthcare professionals (HCPs), and that there is a need for better communication to improve treatment planning (Van Hulst et al 2011). However, 85 per cent of patients do not fully understand what physicians tell them and more than 50 per cent of patients leave the clinic unsure of what they are supposed to do (Kaplan et al 1989), demonstrating an overall need to enhance patient and HCP communication. In addition to this many HCPs, in particular nurses, receive little formal consultation skills training and find it difficult to cover all the elements of the consultation in the time allocated. TRACK (Target, Review, Assess, Counsel, Keep records) is a programme that has been developed to help patients and HCPs work alongside each other to achieve the best outcomes in reducing the effects of RA on the patient s health and wellbeing. On the right TRACK One of the key roles of rheumatology nurses and HCPs is ensuring that patients fully understand every aspect of their treatment, and in particular 2 may 2 :: vol 26 no 35 :: 2012 NURSING STANDARD / RCN PUBLISHING

3 their treatment goals, as this can have a positive effect on whether or not they achieve these targets and maintain focus over the long term. Nurses understand the benefits of treating to a target and helping patients to achieve the best disease control possible; for some patients this may mean clinical remission, for others this may be low-disease activity. Regardless of clinical treatment goals, by involving patients in their treatment plan HCPs increase the likelihood that patients will remain engaged and that appropriate expectations are set. Therefore, liaising with the patient and setting goals that meet his or her needs encourages improved commitment to health outcomes. What is TRACK? The five-step TRACK programme is an easy way to ensure nurses treat to target as effectively and consistently as possible. Historically, nurses in particular have had little training in clinic consultation skills; many have developed these while in post and experience an ongoing struggle to manage the time constraints of the appointment systems. TRACK helps here by providing a systematic, structured consultation that streamlines the process and enables HCPs to make the best use of consultation time. For patients, TRACK provides a useful structure to reassure them that they have control of their RA. With the appropriate care and support, TRACK encourages patients to become active participants in their care and to ensure that all aspects of management are covered during consultations. The TRACK acronym provides a prompt to recall the structure and steps of the consultation. The five core principles of TRACK are: 1. Target Clinical goals need to fit with patients personal goals so that a treatment plan can be realistic and successful. Setting achievable short-term goals can be more motivational to patients than daunting long-term targets and, with careful planning, ultimately achieve the same benefits. The main aims of setting targets are to: Regularly evaluate disease activity status. Make treatment changes. Discuss progress with the patient. Encourage compliance with the treatment plan. Manage patient expectations. By setting clinical and personal goals in parallel, patients can connect the dots between the clinical measures of disease improvement (for example, the DAS28 score) and the extent to which they can achieve goals in their personal life by adhering to their treatment plan. 2. Review Asking patients to identify the three most important aspects of their treatment between each check-up helps to prioritise discussions during the clinic visit. It is important to identify why patients are or are not achieving their treatment goals and find ways to help them change their behaviour and attitudes if necessary. Potential barriers to treatment success could be: Coping with changes in disease activity. The impact of RA on life, work, health, activity and family. Concerns about drugs, their side effects and changes to existing treatments. Concerns about referral to other specialists and follow-up arrangements. When patients achieve their personal goals they need to set new ones to maintain a sense of control over their RA. 3. Assess Regular disease assessment is integral to helping patients achieve their clinical targets and personal goals and to feel in control of their RA. It is vital that patients understand why their HCP is measuring their DAS28 score, as well as how the different elements of this score can be affected. Clinic appointments should be used to monitor and record disease activity, optimise treatments and enhance the patient experience; it also ensures compliance with the recommended NICE approach to patient-centred care (NICE 2009). It is important to note that there is great variation among RA assessors (Grunke et al 2010). Ensuring standardised assessment, as encouraged by programmes such as TRACK, can reduce inconsistency in DAS28 scoring and in the consultation itself and help to ensure that all RA patients receive the best standard of care possible. Clinic resources are available as part of the Treat to Target programme, which aims to improve consistency in measuring tender and swollen joints, thereby improving interpretation of the DAS28 score across centres. NURSING STANDARD / RCN PUBLISHING may 2 :: vol 26 no 35 ::

4 Patient group feedback 4. Counsel Patients need to feel confident that they are receiving the best treatment as this helps to relieve the stress and anxiety that can exacerbate symptoms (Stojanovich and Marisavljevich 2008). Carefully explaining every aspect of RA management is crucial in helping patients to achieve and maintain their treatment targets and manage their expectations. Clear communication between nurses and patients from the very first visit allows HCPs and patients to work together and agree a plan for trouble-shooting any scenarios they may face, such us sudden disease flares or side effects to treatment. Proactively planning for potential scenarios will enable patients to react quickly and involve their HCP earlier if needed. As a result, HCPs are able to intervene at crucial points and redirect patients appropriately. At the same time, it is important to discuss the timescale for improvement and potential change in disease activity from the onset so patients can set their expectations appropriately. Every patient has individual needs and these will change according to how long they have been living with their RA and the level of understanding about their condition. 5. Keep records As well as keeping a full account of all aspects of patient consultations and revisiting notes regularly, patients should be encouraged to keep their own records about any disease-related issues that might occur outside the clinic so that these can be discussed in future consultations. These could include: Medication issues. Details of particularly bad or good days. Unexpected achievements demonstrating effective disease control. Details of any extra GP or HCP visits. By asking patients to keep records, nurses are involving them in monitoring their progress. Nurses remind them of their clinical and personal goals, which help keep their expectations grounded in their own situation and based on their personal progress. Many people with rheumatoid arthritis tell us that their consultations can feel rushed and that often they don t feel heard by their physician. Patients want more time to talk about the impact of treatment and how their disease affects everyday life. Resources such as TRACK which align clinical treatment targets with patients personal goals enable healthcare professionals to maximise the limited time they have with their patients, meeting everyone s needs and helping patients to feel heard. Clare Jacklin, director of external affairs, National Rheumatoid Arthritis Society The TRACK resources The Rheumatoid Arthritis Patient TRACKer developed to encourage the patient to set targets and, with the guidance of HCPs, identify the steps to achieve these goals alongside their best clinical outcome. This helps patients work towards gaining confidence in achieving their longer-term goals. Consulting Skills: Optimising your time with the patient developed to complement the patient TRACKer and provide HCPs with the support and resources they need to make the best use of consultation time. This time is essential for helping patients to understand and manage their disease on a daily basis however, there are a lot of topics to cover and time is often a challenge. Bringing TRACK into clinical practice Many rheumatology departments have set up escalation clinics where the patient is reviewed 4 may 2 :: vol 26 no 35 :: 2012 NURSING STANDARD / RCN PUBLISHING

5 monthly to implement the Treat to Target guidelines (Smolen et al 2010). It is vital that patients fully understand the importance of disease control, the need for rapid escalation of therapy, and that they are fully informed to participate in shared decision making. Implementing the TRACK resources at each clinic visit offers a standardised approach to the assessment and management of RA to achieve the best outcome for the patient. In clinic, the TRACK Consulting Skills resource helps to: Support nurses and patients in achieving clinical and personal goals. Structure consultations. Improve adherence to therapy. Assist nurses and patients to make decisions together. A successful consultation will identify the patient s concerns, expectations, priorities and goals. Good communication skills and listening to patients is essential to ensure they leave the clinic with a clear management plan that they fully understand and a date for the next follow-up appointment. The date of the next appointment should be written down. The Consulting Skills resource details techniques and skills that can easily be implemented in consultations to help improve communication with patients. Effective communication skills have been shown to improve patients understanding of their illness and adherence with treatment, thereby improving patient outcomes and satisfaction (Silverman et al 1998, Back et al 2005). One of the important elements of a successful consultation is establishing a good relationship with the patient. This begins before the patient has entered the consulting room, so nurses should be fully prepared with notes, test results, information leaflets and TRACK documentation. The beginning of a consultation is crucial because it is the initial step in building rapport and can cement a good patient relationship (Silverman et al 1998). Always introduce yourself, explain your role and check you have the right patient. Make sure that patients have the opportunity to speak; a study by Beckman and Frankel (1984) demonstrated that doctors interrupted the patient s opening statement within an average of 18 seconds. Patients derive meaning from the way in which the message is communicated through voice tone, facial expression and body cues (Roter 2004). Think about non-verbal behaviour: Maintain good eye contact to indicate interest. Adopt a forward facing position to show active engagement. Ask open-ended questions to enable patients to share the full impact of their RA and their treatments. Examples of open-ended questions include: What, if anything, is worrying you?, How are you coping? and How can we improve your treatment plan? Allowing patients time to communicate during the consultation develops rapport and enables patients to feel understood, valued and supported. Patient involvement is central to the Treat to Target guidelines and patients have many questions to ask during a consultation. However, patients often leave an appointment forgetting to ask certain questions. Using the patient TRACKer the nurse can focus on the three main issues or concerns that the patient has written down to be discussed at that visit. Patient involvement in decisions regarding treatment is vital, particularly regarding medication. Britten et al (2000) found that not exploring the patient s thoughts and preferences led to misunderstandings and non-adherence to medication. Patient involvement can have a significant impact on achieving disease control and patients reaching their personal goals. An example of a useful question is: Are you experiencing any problems with your medication? This type of question allows patients to express any concerns about side effects or difficulties with taking the medication. It is important to understand how the patient is feeling and there are some examples of phrases in the booklet that can be used to demonstrate empathy. Many nurses have difficulty ending a consultation and there are also good tips on how to do this. For example, a well-managed closure should indicate that the interview is about to end. Start by summarising what you have discussed, going over the main points and the agreed management plan. Set a date for follow up and advise on what to do if they need further guidance or if their disease flares. The following case study illustrates how using TRACK can benefit nurses and patients in clinical practice. Case study At presentation Julie is a 40-year-old housewife, married with a five-year-old daughter. Until recently, Julie was fit and well. She was seen in a rheumatology clinic following referral from her GP having had a six week history of painful, swollen hands, wrists, feet and right knee. The pain and swelling was having a considerable effect on her daily activities and she was finding it hard to keep up with her NURSING STANDARD / RCN PUBLISHING may 2 :: vol 26 no 35 ::

6 work and social commitments. She was taking paracetamol 1g four times daily and ibuprofen 600mg three times daily with food. Blood tests before her appointment showed that she had elevated erythrocyte sedimentation rate (ESR) 58 and C-reactive protein levels. Serum rheumatoid factor was strongly positive. Clinical examination confirmed the diagnosis of rheumatoid arthritis and it was recommended that she started methotrexate (MTX) 15mg once weekly and hydroxychloroquine (HCQ) 400mg daily. She was also referred to the rheumatology nurse specialist for treatment and to start the education process. At first nurse-led clinic Julie attended her first appointment with the nurse specialist and was provided with information about RA and the importance of setting a treatment target, and personal goals. TARGET DAS28 score <3.2 The nurse explained DAS28 to Julie who was asked to consider this over the next month and note down her most important personal target. Methylprednisolone 120mg was given intramuscularly to reduce inflammation and relieve pain. Information on drugs, how they work and their side effects was provided. An explanation that the aim of treatment is to reduce disease activity to its lowest level or to induce remission was included. Julie was encouraged to think about personal goals and, together with the nurse, to think about how these relate to her clinical targets. ESR: 58 VAS: 90 COUNSEL Discussed Julie s ideas, concerns and expectations about treatment. Referred to occupational therapy for: daily living activities assessment and advice; splinting and joint protection advice; energy conservation and relaxation therapy; physiotherapy for help regarding range of movement exercises; wax therapy to hands. Information given regarding other points of contact and information including National Rheumatoid Arthritis Society (NRAS). REVIEW Discussed Julie s current limitations, lifestyle and daily activities to reinforce the process of goal setting. KEEP RECORDS Julie was given: An RA Patient TRACKer including helpline numbers for the rheumatology department and NRAS. A date for review in four weeks. Notes completed reflect fully the content of the consultation. ASSESS DAS28: 7.63 Tender joints: 19 Swollen joints: 15 6 may 2 :: vol 26 no 35 :: 2012 NURSING STANDARD / RCN PUBLISHING

7 Putting TRACK into each consultation Julie received a copy for written reinforcement and review. At escalation clinic one month later TARGET: Before developing RA, Julie had been a keen walker and now she wanted to take part in a sponsored walk with her daughter. But, she could not see how this would be possible given her current health status. The small steps approach was adopted. Short-term, achievable goals to measure progress and achieve overall goal were set. REVIEW DAS28: 6.05 Tender joints: 13 Swollen joints: 10 ESR: 33 VAS: 50 Julie was coping well with MTX and HCQ with no obvious side effects. There was some relief of swelling and pain following intramuscular steroid injection, but both knees were acutely swollen with evidence of quadriceps muscle wasting. Blood monitoring results were satisfactory. Both knees were aspirated and clear fluid removed, and triamacinolone 40mg in 2ml 1% lidocaine was injected into each knee. Quadriceps strengthening exercises were recommended and demonstrated. The patient was advised to increase the MTX dose to 20mg weekly. A review was arranged for four weeks later. Further follow up one month later DAS28: 5.31 Tender joints: 10 Swollen joints: 7 ESR: 30 VAS: 30 Julie is feeling much improved. She says her joints are starting to improve, particularly those in her hands, the swelling in her knee has reduced and she is working on strengthening her quadriceps by doing static exercises three times a day. She can get out of a chair more easily and has managed to walk to the local shop a few times. Review one month later DAS28: 5.53 Tender joints: 12 Swollen joints: 8 ESR: 28 VAS: 33 Julie visited the physiotherapist and was given a course of hydrotherapy that she was keen to continue with at the local swimming pool. Treatment options were discussed because she had been on MTX 20mg for two months, her DAS28 was still elevated and she fulfilled criteria for anti-tumour necrosis therapy (anti-tnf) in accordance with NICE guidelines (2010). Anti-TNF therapies were discussed, as well as their mode of action and potential side effects. A follow-up visit was arranged for a month later and a plan was made to add in therapy if no improvement was seen. Review one month later DAS28: 6.01 Tender joints: 13 Swollen joints: 10 ESR: 31 VAS: 50 Julie s knees had become swollen again and she was feeling quite low from not achieving her goals. She felt she was moving backwards instead of forwards. A review of goals showed she had kept up with her exercises and was still swimming. Her goals were reinforced. Julie decided to start a new therapy as she felt that time was moving on and she was getting worse. Anti- TNF therapy was initiated in accordance with NICE guidelines (NICE 2010). Review one month later DAS28: 4.29 Tender joints: 9 Swollen joints: 4 ESR: 15 VAS: 11 Julie was happy with how well she felt. Her fatigue was much improved and her DAS score was discussed with regard to achieving personal goals. She has walked a mile recently and was keen to increase the distance. A new goal of three miles was set with the aim of her gradually increasing her walking distance, with rests if needed. Julie was considering taking part in an eight mile sponsored walk around the local reservoir for NRAS. NURSING STANDARD / RCN PUBLISHING may 2 :: vol 26 no 35 ::

8 Final review one month later DAS28: 2.08 Tender joints: 0 Swollen joints: 2 ESR: 10 VAS: 50 Julie was assessed as responding to therapy according to NICE (2009) guidelines. The sponsored walk was due to take place the following week and Julie s sponsorship form was full. Achieved clinical target: DAS28 <3.2 New clinical target of maintaining remission DAS <2.6 set Conclusion The role of HCPs, pain management and ongoing goal assessment are essential to ensure that patients with RA have the best opportunity to control their symptoms. The consultation is the precise point when clinical and personal goal-setting should happen and the TRACK resources support HCPs to do so. The resources help structure the consultation so HCPs make the best use of the consultation time with the benefits feeding directly back to the patient. TRACK ensures that patients are well informed and identify realistic treatment goals with HCPs. It also allows HCPs the opportunity to discuss and advise on the patient s expectations. Kate Gadsby, advanced rheumatology educator, The Royal Derby Hospital; Janice Mooney, senior lecturer, school of nursing sciences, University of East Anglia For further information about TRACK, or to request copies of the TRACK resources, contact your local rheumatology specialist nurse or Abbott Medical Information on: ; ukmedinfo@abbott.com Copyright RCN Publishing Company Ltd All rights reserved. No part of this book may be reproduced, stored in a retrieval system or transmitted in any form or by any means, electronic, mechanical, photocopying, recording or otherwise, without prior permission of the publisher. RCN Publishing Company Ltd The Heights Lowlands Rd Harrow Middlesex HA1 3AW ISBN: References Back AL, Arnold RM, Baile WF, Tulsky JA, Fryer-Edwards K (2005) Approaching difficult communication tasks in oncology. CA: A Cancer Journal for Clinicians. 55, 3, Beckman AB, Frankel RM (1984) The effect of physician behavior on the collection of data. Annals of Internal Medicine. 101, Britten N, Stevenson F, Barry C et al (2000) Misunderstandings in prescribing decisions in general practice: qualitative study. British Medical Journal. 320, 7233, Goekoop-Ruiterman YP, de VriesBouwstra JK, Allaart CF, Van Zeben D, Kerstens PJ, Hazes JM, et al (2007) Comparison of treatment strategies in early rheumatoid arthritis: a randomized trial. Annals of Internal Medicine. 146, 6, Grigor C, Capell H, Stirling A, McMahon AD, Lock P, Vallance R et al (2004) Effect of a treatment strategy of tight control for rheumatoid arthritis (the TICORA study): a single-blind randomised controlled trial. Lancet. 364, 9430, Grunke M, Antoni CE, Kavanaugh A et al (2010) Standardization of joint examination technique leads to a significant decrease in variability among different examiners. Journal of Rheumatology. 37, 4, Kaplan SH, Greenfield S, Ware JE Jr (1989) Assessing the effects of physician-patient interactions on the outcomes of chronic disease. Med Care. 27, (3 Suppl), S Nathan DM, Buse JB, Davidson MB, Ferrannini E, Holman RR, Sherwin R, Zinman B (2009) Medical management of hyperglycaemia in type 2 diabetes mellitus: a consensus algorithm for the initiation and adjustment of therapy: a consensus statement from the American Diabetes Association and the European Association for the Study of Diabetes. Diabetologia. 52, 1, National Institute for Health and Clinical Excellence Technology Appraisal 60 (2003) Guidance on the Use of Patient-Education Models for Diabetes. com/7fn76ek (Last accessed: March ) National Institute for Health and Clinical Excellence Clinical Guidance 79 (2009) Rheumatoid Arthritis: Quick Reference Guide. tinyurl.com/cfbg3ls (Last accessed: March ) National Institute for Health and Clinical Excellence Technology Appraisal 195 (2010) Adalimumab, Etanercept, Infliximab, Rituximab 8 may 2 :: vol 26 no 35 :: pager.indd 1 and Abatacept for the Treatment of Rheumatoid Arthritis after the Failure of a TNF Inhibitor. (Last accessed: March ) rheumatoid arthritis to target: recommendations of an international task force. Annals of the Rheumatic diseases. 69, 4, National Institute for Health and Clinical Excellence Clinical Guidance 127 (2011) Hypertension: Clinical Management of Primary Hypertension in Adults. tinyurl.com/bu6bc22 (Last accessed: March ) Stojanovich L, Marisavljevich D (2008) Stress as a trigger of autoimmune disease. Autoimmunity Reviews. 7, 3, Prevoo M, Van Hof T, Kuper H et al (1995) Modified disease activity scores that include 28-joint counts development and validation in a prospective longitudinal study of patients with rheumatoid arthritis. Arthritis & Rheumatism. 38, 1, Reiner Ž, Catapano AL, De Backer G, Graham I, Taskinen M-R, Wiklund O et al (2011). ESC/EAS Guidelines for the management of dyslipidaemias. European Heart Journal. 32, 14, Roter D (2004) Patient-centered communication. British Medical Journal. 12, 328, E Silverman JD, Kurtz SM, Draper J (1998) Skills for Communicating with Patients. Radcliffe Medical Press, Oxford. Smolen JS, Aletaha D, Bijlsma JWJ et al (2010) Treating Van Hulst LT, Kievit W, Van Bommel R, Van Riel PL, Fraenkel L (2011) Rheumatoid arthritis patients and rheumatologists approach the decision to escalate care differently: results of a maximum difference scaling experiment. Arthritis Care and Research. 63, 10, Verstappen SM, Jacobs JW, Van der Veen MJ, Heurkens AH, Schenk Y, Ter Borg EJ et al (2007) Intensive treatment with methotrexate in early rheumatoid arthritis: aiming for remission. Computer assisted management in early rheumatoid arthritis (CAMERA, an openlabel strategy trial). Annals of the Rheumatic Diseases. 66, 11, Williams B, Poulter NR, Brown MJ, Davis M, McInnes GT, Potter JP et al (2004) Guidelines for management of hypertension: report of the fourth working party of the British Hypertension Society, 2004-BHS IV. Journal of Human Hypertension. 18, 3, NURSING STANDARD / RCN PUBLISHING 16/04/ :15