Achieving patient engagement in multiple sclerosis : a perspective from the multiple sclerosis in the 21st Century Steering Group

journal homepage: www.elsevier.com/locate/msard Available online at www.sciencedirect.com REVIEW Achieving patient engagement in multiple sclerosis: A perspective from the multiple sclerosis in the 21st Century Steering Group Peter Rieckmann a, n , Alexey Boyko b , Diego Centonze c , Irina Elovaara d , Gavin Giovannoni e , Eva Havrdová f , Otto Hommes g , Jurg Kesselring h , Gisela Kobelt i , Dawn Langdon j , Jacques LeLorier k , Sarah A Morrow l , Celia Oreja-Guevara m , Sven Schippling n , Christoph Thalheim o , Heidi Thompson p , Patrick Vermersch q a Sozialstiftung Bamberg Hospital, Bamberg, Germany b Moscow MS Centre, Russian State Research Medical University named by NI Pirogov, Moscow, Russia c Università di Roma Tor Vergata, Rome, Italy d Tampere University Hospital, Tampere, Finland e Blizard Institute, Bart's School of Medicine and Dentistry, London, UK f General Faculty Hospital, Charles University, Prague, Czech Republic g European Charcot Foundation, Molenhoek, The Netherlands h Kliniken Valens, Valens, Switzerland i European Health Economics, Spéracèdes, France j Royal Holloway, University of London, Egham, UK k CHUM Research Centre, Montreal, Quebec, Canada l Western University, London, Ontario, Canada m University Hospital San Carlos, Madrid, Spain n Universitätsspital Zürich, Zürich, Switzerland o Rehabilitation in MS (RIMS), Brussels, Belgium p Northern Ireland Neurology Service, Portadown, UK q University Hospital of Lille, Lille, France Received 30 October 2014; received in revised form 30 January 2015; accepted 21 February 2015 http://dx.doi.org/10.1016/j.msard.2015.02.005 2211-0348/&2015 The Authors. Published by Elsevier B.V. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/). Abbreviations: CIS, clinically isolated syndrome; CPS, control preference scale; DMTs, disease modifying therapies; JCV, JC virus; MRI, magnetic resonance imaging; MSDS 3D, Multiple Sclerosis Documentation System 3D; MSIF, Multiple Sclerosis International Federation; NABs, neutralizing antibodies; NEDA, no evidence of disease activity; OCD, obsessive-compulsive disorder; OCT, optical coherence tomography; PROs, patient-reported outcomes; RIS, radiologically isolated syndrome; SCHIP, State Children's Health Insurance Program; T2T, treat-totarget; WHOQoL-BREF, World Health Organization Quality of Life instrument (short form) n Correspondence to: Department of Neurology, Sozialstiftung Bamberg Hospital, Bamberg, Germany. Tel.: +49 951 503 13601. E-mail address: [email protected] (P. Rieckmann). Multiple Sclerosis and Related Disorders (2015) 4, 202–218 KEYWORDS Multiple sclerosis; Patient engagement; Shared decisionmaking; Care; Management Abstract While advances in medicine, technology and healthcare services offer promises of longevity and improved quality of life (QoL), there is also increasing reliance on a patient's skills and motivation to optimize all the benefits available. Patient engagement in their own healthcare has been described as the ‘blockbuster drug of the century’. In multiple sclerosis (MS), patient engagement is vital if outcomes for the patient, society and healthcare systems are to be optimized. The MS in the 21st Century Steering Group devised a set of themes that require action with regard to patient engagement in MS, namely: 1) setting and facilitating engagement by education and confidence-building; 2) increasing the importance placed on QoL and patient concerns through patient-reported outcomes (PROs); 3) providing credible sources of accurate information; 4) encouraging treatment adherence through engagement; and 5) empowering through a sense of responsibility. Group members independently researched and contributed examples of patient engagement strategies from several countries and examined interventions that have worked well in areas of patient engagement in MS, and other chronic illnesses. The group presents their perspective on these programs, discusses the barriers to achieving patient engagement, and suggests practical strategies for overcoming these barriers. With an understanding of the issues that influence patient engagement in MS, we can start to investigate ways to enhance engagement and subsequent health outcomes. Engaging patients involves a broad, multidisciplinary approach. &2015 The Authors. Published by Elsevier B.V. This is an open access article under the CC BYNC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/). Contents 1. Introduction ............................................................... 203 2. Methods.................................................................. 203 3. What is patient engagement? .................................................... 204 4. Why is patient engagement so important?............................................. 204 5. What influences patient engagement? ............................................... 205 6. Achieving patient engagement .................................................... 206 6.1. Theme 1: setting and facilitating engagement by education and confidence-building .............. 206 6.2. Theme 2: patient-reported outcomes: increasing the importance placed on QoL and patient concerns . . . 208 6.3. Theme 3: providing credible sources of accurate information............................. 209 6.4. Theme 4: encouraging treatment adherence through engagement.......................... 210 6.5. Theme 5: empowering through a sense of responsibility ................................ 211 7. Discussion................................................................. 211 Conflict of interest statement....................................................... 212 Acknowledgments .............................................................. 215 Appendix.................................................................... 215 References .................................................................. 215 1. Introduction In 2011, the multiple sclerosis in the 21st Century initiative wasestablished;itisledbyaSteeringGroupofinternational experts in MS treatment and management, and by patient group representatives. The initiative seeks to define MS treatment and standards of care for the 21st century, develop a minimum standard of care internationally, and motivate the MS community to align standards of care and challenge the current treatment paradigm. Towards that aim, the Steering Group developed overarching principles to guide management andimproveoutcomesforpeoplewithMS,whichwere published in their 2012 consensus statement (Rieckmann et al., 2013). Among those principles, the group identified the patient-centric elements as requiring the most urgent action –in particular, the topic of patient engagement in MS. 2. Methods Two workshops were held to identify themes related to patient engagement that the group felt were of particular importance in the field of MS. In addition to the original Steering Group members, the workshops involved a diverse pool of important stakeholders in MS care including neurologists, an MS nurse, a health economic specialist, a patient group representative, a neuro-rehabilitation specialist and a neuropsychologist. Five themes were prioritized through discussion and debate, and they constitute the basis of this publication. 203Achieving patient engagement in multiple sclerosis: A perspective from the multiple sclerosis in the 21st Century Group members independently researched and contributed examples of patient engagement strategies from several countries. Through two additional videoconferences, the group examined interventions that have been successful in areas of patient engagement –not merely in the field of MS, but also in other chronic illnesses that may have overlapping issues with MS. In this publication, the group presents their perspective on these programs, discusses research demonstrating the barriers to achieving patient engagement, and provides practical strategies for overcoming these issues. 3. What is patient engagement? While advances in medicine, technology and healthcare services continue to offer promises of longevity and improved quality of life (QoL), reliance on the patient's knowledge, skills and motivation to access these benefits is increasing. The reasons for this may lie in the need to streamline health services and minimize burden on healthcare providers, fragmented healthcare delivery systems, and the movement away from a paternalistic/authoritarian style of healthcare arising from evidence that patients have better health outcomes when they play a role in their own healthcare (Center for Advancing Health, 2014). The US Center for Advancing Health defines patient engagement (sometimes known as ‘patient activation’)as‘actions individuals must take to obtain the greatest benefit from the healthcare services available to them’(Center for Advancing Health, 2014). Certainly, with a chronic illness such as MS where novel therapies will most likely influence multiple body systems, a multidisciplinary approach for effective healthcare management is crucial. As such, a ‘linchpin’is required to ensure the various sources of care and treatment are coordinated; the concept of patient engagement asserts the patient as that linchpin. Just as patients are required to change their role from healthcare ‘receiver’to ‘engager’, the role of the healthcare professional also needs to evolve from being a ‘provider’of healthcare to become a ‘motivator’and ‘supporter’ of patients to help them achieve this. 4. Why is patient engagement so important? Patient engagement can be practiced at the macro (system), meso (institution), and micro (medical encounter) levels. However, only some patients will wish to be involved at macro or meso levels. Patient engagement is particularly important in a chronic illness such as MS, which necessitates lifelong therapy. Patients face decisions relating to treatment, interventions and services available, and QoL (Heesen et al., 2011;von Puckler, 2013). Previously, interferon beta or glatiramer acetate therapy was the mainstay of treatment for MS, (National Collaborating Centre for Chronic Conditions, 2004) and their side effects were well known, reversible, predictable, and treatable (Coyle, 2009). However, in the last 10 years, new treatments have emerged which, although beneficial from an efficacy or ease of administration perspective, also have the potential to cause serious side effects (Girouard and Soucy, 2011;Kieseier et al., 2011). It is imperative that these evolving risks and their relationship to clinical benefit are taken into account by the patient (Clanet et al., 2014). Patients can play an integral role in improving the quality, safety, and cost of healthcare interventions. As such, the patient has been described as the ‘greatest untapped resource in healthcare’, and patient engagement termed ‘the blockbuster drug of the century' (Chase, 2013). Furthermore, the importance of patient engagement as an essential component of high quality healthcare has been recognized worldwide (Department of Health, 2005a; Aljumah et al., 2013;Institute of Medicine 2014,2012; Chow et al., 2009). The list of parameters shown to be influenced by patient engagement is extensive and includes improved clinical outcomes, reduced healthcare consumption and improved service quality (Department of Health, 2005a;Chow et al., 2009;Institute of Medicine, 1999;Jha et al., 2008;Meterko et al., 2010;Glickman et al., 2010; Isaac et al., 2010;Charmel and Frampton, 2008;Pietrolongo et al., 2013;Heesen et al., 2013;Coulter, 2012). Improved clinical outcomes shown to equate with patient engagement include improved treatment adherence, faster recovery and reduced mortality rates (Department of Health, 2005a; Chow et al., 2009;Institute of Medicine, 1999;Jha et al., 2008;Meterko et al., 2010;Glickman et al., 2010;Isaac et al., 2010;Charmel and Frampton, 2008;Pietrolongo et al., 2013;Heesen et al., 2013;Coulter, 2012) An analysis of 41800 veterans with myocardial infarction showed that better patient-centered care was associated with a lower hazard of death over a 1-year study period (HR: 0.992; 95% CI: 0.986–0.999) (Meterko et al., 2010). When patients are engaged with their healthcare, both reduced healthcare consumption (including improved health service efficiency, fewer diagnostic tests and referrals, decreased use of healthcare services and lower annual charges) and patient preference towards less aggressive/ costly courses of treatment are seen (Department of Health, 2005a;Chow et al., 2009;Institute of Medicine, 1999;Jha et al., 2008;Meterko et al., 2010;Glickman et al., 2010;Isaac et al., 2010;Charmel and Frampton 2008; Pietrolongo et al., 2013;Heesen et al., 2013;Coulter, 2012). For example, patients who are properly informed about their treatment options are less likely to opt for expensive elective surgical procedures where other options exist (Isaac et al., 2010). Improved service quality is observed when patients are engaged, and can include improved communication and health literacy, greater confidence in treatment decisions, decreased malpractice claims, higher hospital staff retention rates, more satisfied patients, and reduced patient–physician discordance (Department of Health, 2005a;Chow et al., 2009;Institute of Medicine, 1999;Jha et al., 2008;Meterko et al., 2010;Glickman et al., 2010;Isaac et al., 2010;Charmel and Frampton, 2008;Pietrolongo et al., 2013;Heesen et al., 2013;Coulter, 2012). In Stamford Hospital, 18 months after implementing a structured approach to patient-centered care, the employee satisfaction rate increased from the 33 rd to the 60 th percentile (Charmel and Frampton, 2008). With so much to be gained from patient engagement, efforts to promote this untapped resource are paramount. P. Rieckmann et al.204 5. What influences patient engagement? Understanding of patient engagement in MS is in its infancy but the factors influencing engagement appear complex and diverse. One cross-sectional survey of 199 MS patients in Southeast USA, identified that MS-related QoL and MSrelated self-efficacy correlated significantly with patient activation in MS patients (r=0.42, Po0.01 and r=0.50, Po0.01, respectively). Depression had an inverse correlation (r=0.43; Po0.01) (Goodworthetal.,2014). Studies in other disease areas have demonstrated further elements that may play a role. One review reported five categories of factors influencing engagement: patient-related (patents' knowledge/beliefs, demographic characteristics, emotions and coping style); illness-related (symptoms, treatment plan, patient's prior experience, illness severity); healthcare professional (HCP)-related (HCPs’knowledge and beliefs, HCP role); healthcare setting-related (primary or secondary care); and task-related (medical knowledge required and whether the required patient behavior challenges clinicians' clinical abilities) (Davis et al., 2007). Table 1 Interventions shown to support shared decision-making and health literacy a . Intervention Potential benefits Shared decision-making Patient decision aids Increased patient involvement in decisions Better understanding of treatment options More accurate perception of risks Improved quality of decisions Does not increase patient's anxiety Health coaching Reduced mortality Reduced risk factors Improved health status Question prompts Increased question-asking in consultations May increase patients' knowledge and understanding May empower patients and improve satisfaction Does not necessarily increase length of consultations Self-management education and support Improved patient knowledge and understanding Improved confidence and coping ability Improved health behaviors Improved social support May improve adherence to treatment recommendations May improve health outcomes May reduce hospital admission rates Health literacy Personalized patient information (paper and electronic) reinforced by professional or lay support Improvements in patients’knowledge and understanding of their condition Increased sense of empowerment Greater ability to cope with the effects of illness Improved patient satisfaction May lead to improvements in health behavior May contribute to better health outcomes Telephone counseling and help lines Less social isolation Improved self-efficacy and satisfaction Reduced mortality and fewer hospitalizations for some patient groups May improve diagnostic accuracy May contribute to improved health status and better QoL Motivational interviewing Better adherence to treatment recommendations Improved health behavior Reduced risk factors Improved health outcomes a Reproduced and adapted from Coulter et al. Patient engagement–what works? The Journal of Ambulatory Care Management 2012;35:80-9 (Coulter, 2012). Where the evidence is less strong, this is indicated by including may in the list of potential benefits. 205Achieving patient engagement in multiple sclerosis: A perspective from the multiple sclerosis in the 21st Century 6. Achieving patient engagement Understanding the issues that influence patient engagement in MS will facilitate investigation into how these might be overcome. 6.1. Theme 1: setting and facilitating engagement by education and confidence-building A prerequisite to helping a patient become engaged is the establishment of an effective, caring and mutually respectful patient–physician relationship; patients consistently say that good communication with their doctors boosts their confidence with the healthcare process (von Puckler, 2013; Duffy et al., 2004). People prefer to be treated by clinicians who are empathetic listeners and who are good at informing, advising, and educating them (Coulter, 2005;Keating et al., 2002). Moreover, the main independent predictors of patient satisfaction are patients’perceptions of communication and partnership, and a positive approach by the doctor (Little et al., 2001). One study demonstrated that therapist responsiveness in the first two sessions of therapy relates to three measures of early patient engagement in treatment. Using videotapes and data from the NIMH (National Institute of Mental Health) Treatment of Depression Collaborative Research Program (TDCRP), an instrument was developed to measure therapist responsiveness in the first two sessions of Cognitive Behavior Therapy and Interpersonal Psychotherapy. A factor measuring positive therapeutic atmosphere, and a global item of therapist responsiveness, predicted both the patient's positive perception of the therapeutic relationship after the second session and the number of patient's remaining in therapy for more than four sessions. A negative therapist behavior factor also predicted early termination (Elkin et al., 2014). Engagement is vital from the day of diagnosis,(Solari 2014) when the MS patient and their physician embark on a unique journey together and the emotional burden on both parties is high (Solari, 2014). Consequently, the collaborative nature of that initial process and the success in instigating clear, honest communication can determine whether the future relationship will be one of trust and respect and how positively the patient will be involved in their health decisions and management. There is growing acknowledgment that healthcare professionals require effective communication and conflict management skills,(Ha and Longnecker, 2010) despite some receiving little or no focused training in these areas. Some studies point to the need for further empowerment of MS physicians to gain better patient communication skills (Pietrolongo et al., 2013;Kasper et al., 2011;Kasper et al., 2008). Encouragingly though there is evidence that communication skills training is becoming more visible in medical education. Such training is well established in medical schools across the UK, Europe and the USA (Hausberg et al., 2012). In the USA, communication skills feature prominently in clinical skills examinations and are incorporated into residency programs and maintenance certification of practicing physicians (Makoul 2003). Various practical strategies have been proposed to optimize physician–patient communication. Simple conversational and listening techniques can be helpful, eg sitting down during a consultation, attending to patient comfort, establishing eye contact, listening without interrupting, showing attention with nonverbal cues such as nodding, allowing silences while patients search for words, acknowledging and legitimizing feelings, explaining and reassuring during examinations, and asking explicitly if there are other areas of concern. The provision of ‘prompt sheets’encourages patients to ask questions about their treatment options, patients can be encouraged to bring a list of questions to their clinic visits. Directing patients to access their medical notes promotes transparency and trust, and improves information recall. Tools such as www.myopennotes. org provide help in achieving this and, in fact, the patient's right to access their medical notes has been legalized in France through the Kouchner Act, 2004 (http://lelien.typepad.fr/ association_le_lien/2007/12/accs-aux-inform.html). However, patients with low levels of health literacy may find this initially challenging. A ‘road map’or a set of goals that both physician and patient wish to achieve can be developed and amended throughout the disease course. Shea (2006) also describes a number of useful techniques, such as: learning the patient's belief set; familiarization with the patient's family history/ cultural beliefs to discover underlying motivations; providing the patient with a sense of collaboration in the health decision process; and learning the patient's opinion towards taking medication in general (Shea, 2006). In addition, reliable, up-to-date publications and guidance to support physicians in communicating with their patients are provided by the MS Society. Coulter (2012) also provides initiatives that have proven beneficial (Table 1)(Coulter 2012)andTable A1 (Appendix) provides examples that support the use of these initiatives. The Adopt One! Challenge http://mindthegap. smarthealthmessaging.com/2013/08/13/the-adopt-one-challen ge-the-first-step-to-better-patient-engagement-patient-experie nces-2/ allows physicians to obtain a comprehensive baseline assessment of their patient communication skills, measure how their skills compare with best practice, and access online skills development tools. The program encourages physicians to commit to adopting one new patient-centered communication skill over the course of 12 months and provides online training and resources needed to help them achieve this goal. Current management guidelines underline the importance of educating and supporting the MS patient. National Institute for Clinical Excellence (NICE) guidelines recommend implementing an education program that takes into account the different aspects of the disease and incorporates guidance on the level of communication, provision of emotional support, encouragement of autonomy/self-management and provision of support to family and carers; http://www.nice.org.uk/ nicemedia/live/10930/46699/46699.pdf. The European MS Platform's Code of Good Practice (http://www.emsp.org/ attachments/article/134/1code08.pdf) stresses the impor tance of accessible information, informed advice and emo tional support, and suggests self-help education programs be provided for patients and their carers. The concept of ‘therapeutic patient education’has also been enshrined in French law (article 84, Hospitals, Patients, Health and Terri tory, Law No. 2009-879 of 21 July 2009) and is officially recognized as an integral part of patient care. Specifically, it mandates that patients must receive specialized education related to their condition, which can be delivered by trained ‘peer educators’. P. Rieckmann et al.206 Table 2 Research and development studies evaluating the symptoms of MS that commonly impact on QoL and HR-QoL in MS patients. Study Outcome measured Findings related to the impact on patient QoL/HR-QoL Vision impairments (Galetta et al., 2012) EDSS: visual function Visual dysfunction in benign MS was as marked as that in typical MS and accounted for a substantial degree of disability and loss of QoL (Galetta et al., 2012). (Mowry et al., 2009) Low contrast letter acuity Specific visual disorders measured by low contrast letter acuity may influence QoL (Mowry et al., 2009) Gait and mobility impairments (Van Asch 2011) Anonymous online survey on walking and mobility 45% of patients reported mobility difficulties within 1 month of diagnosis, 93% within 10 years. These had a profound effect on independence, employment, loss of earning, HRQoL and ADLs (Yildiz 2012) Online 5-question survey evaluating walking speed Impaired walking speed affected ADLs and avoidance of: walking to the nearest shop (53%), cleaning the home (46%), crossing the street (31%), walking to the post box (29%), visiting neighbors (24%) Sexual dysfunction (Nortvedt et al., 2001) SF-36 Health Survey Present in up 91% of MS patients. May be a direct reflection of MS neurological impairments, side effects of treatments, or indirect changes in sexual responsiveness due to other MS symptoms (eg fatigue, depression, bowel and bladder dysfunction, mobility issues, etc) (Burks et al., 2009). Patients with sexual dysfunction scored lower on all 8 subscales of SF-36, after adjustment for EDSS (Nortvedt et al., 2001). Most significant effects on QoL: perceived social functioning, vitality, perceived general health, depression, ability to form intimate relationships (Burks et al., 2009) (Burks et al., 2009) None (overview) Mental health problems (Hart et al., 2005) MSQoL-54, Ryff's Scales of Psychological Well-being: depression Depression affects HR-QoL, possibly more than physical disability/symptoms. Treatment of major depression significantly improved psychological well-being (Phillips et al., 2009) Emotional Regulation Questionnaire, WHOQoLBREF: emotional adjustment Failure to use effective emotional reappraisal strategies reduced all aspects of QoL (Kern et al., 2009) Symptom Checklist-90-R: psychological distress Psychological distress in MS patients is associated with neurological disability, but is also present in patients with minimal or no neurological disability. Psychological distress is an independent predictor for MS-related QoL Cognitive dysfunction (Rao et al., 1991) A comprehensive neuropsychological test battery Cognitive dysfunction impacted many aspects of daily functioning, eg work, social and avocational activities, sexual dysfunction, performance of household tasks, psychopathology (Rao et al., 1991). 207Achieving patient engagement in multiple sclerosis: A perspective from the multiple sclerosis in the 21st Century 6.2. Theme 2: patient-reported outcomes: increasing the importance placed on QoL and patient concerns MS patients rank their QoL as lower than the general public, and lower than those with other chronic diseases (Rudick et al., 1992;Riazi et al., 2003;Burden of illness of multiple sclerosis, 1998). The wide-ranging effects of MS impact an individual's QoL at psychological, physical, social and financial levels, throughout all stages of the disease (Miller and Allen 2010; Mitchell et al., 2005). However, clinical focus on MS has relied heavily on the Expanded Disability Scale Score (EDSS) –a measure of disease activity weighted towards the physical, especially mobility, aspects of the disease (Kurtzke, 1983). More recently, however, the importance of MS outcome assessment from the patient's perspective has been recognized. Patient-reported outcomes (PROs) include information provided by the patient that reflects their functioning health and wellbeing from their perspective, including how the disease and medical interventions impact on their QoL. PROs introduce a more holistic approach to disease management by incorporating outcomes affecting the patient across many aspects of their QoL. The diverse subjective symptoms associated with loss of QoL are difficult to quantify, hence discrepancies arise between patient and physician perceptions over which domains of health are the most crucial (Rothwell et al., 1997). Nonetheless, patients report symptoms earlier and more frequently than clinicians do,(Basch, 2010) and patients’reports are more highly concordant with overall health status than clinicians’ reports (Basch, 2010). Integrating PROs into clinical practice has the potential to capture those benefits and enrich the clinical encounter (Miller and Allen, 2010). Table 2 (continued ) Study Outcome measured Findings related to the impact on patient QoL/HR-QoL (Fernandez et al., 2011) MS International QoL Questionnaire (MuSiQoL) Cognitive dysfunction is a major factor in determining QoL in MS (Rao et al., 1991; Fernandez et al., 2011) Limitations in a patient's work and social activities correlated with cognitive decline, independent of the degree of physical disability (Amato et al., 2001) (Amato et al., 2001) A neuropsychological test battery Attention deficit (Phillips et al., 2009) Cognitive Failures Questionnaire: attentional lapses Attentional failures –predicted variance in all aspects of QoL (WHOQoL-BREF) Bladder and bowel problems (Vitkova et al., 2013) Bladder Control Scale, Bowel Control Scale, Incapacity Status Scale Bladder dysfunction is associated with a poorer HR-QoL in MS patients even if they have had MS for a relatively short time Fatigue (Zwibel 2009) Review of PubMed searches on multiple contributors to QoL in MS Fatigue is present in 75–95% of MS patients (Zwibel 2009). Affects physical and mental components of QoL, independent of disability. Impairs vocational abilities and stamina for physical activity; primary cause of MS-related unemployment (Zwibel 2009;Nogueira et al., 2009) (Nogueira et al., 2009) Fatigue Severity Scale Pain (Svendsen et al., 2005) SF-36: pain Pain in MS is associated with pressure pain threshold, cold allodynia, abnormal temporal summation, and mechanical or thermal hyperalgesia. Pain patients scored lower in all dimensions of SF-36 compared with pain-free and healthy subjects Sleep disturbances (Merlino et al., 2009) Pittsburgh Sleep Quality Index (PSQI), Charlson Comorbidity Index (CCI), SF36 Italian version Poor sleep present in almost 50% of MS patients. Independent predictor of QoL on various measures of QoL. Can result from pain, bladder and sexual dysfunction and other clinical conditions P. Rieckmann et al.208 The major factors contributing to health-related QoL (HRQoL) of the MS patient include the ability to perform activities of daily living (ADLs), patient well-being, satisfaction with life, and the impact of disease-related symptoms on these parameters (Burden of illness of multiple sclerosis, 1998). Table 2 shows the results from selected studies that have investigated the symptoms of MS that commonly impact on QoL and HR-QoL in MS patients. The challenge to the physician is to identify a management plan to address the range of symptoms impacting each individual's QoL. To date, numerous PRO QoL measures have been developed specifically for MS,(Vickrey et al., 1995;Cella et al., 1996;Ritvo et al., 1997;Hobart et al., 2001;Ford et al., 2001;Doward et al., 2009;Meads et al., 2009) but no particular measure has gained wide popularity or consensus (Solari, 2005). There are practical considerations when incorporating a PRO measure into clinical practice. These include deciding which measure to use and the frequency with which it should be conducted, finding an appropriate setting and mode of administration, identifying aids to interpret the data, achieving the ‘buy-in’of institute staff and patients, sourcing and maintaining appropriate equipment, minimizing disruption to healthcare delivery, and allowing sufficient time for implementation. Both digital-based technology and more traditional interview methods may have a role in PRO measurement and should be evaluated for acceptability in the environment in which they are to be used. The Multiple Sclerosis Documentation System 3D (MSDS 3D) is an innovative computer-based documentation system being used successfully in clinical practice in Germany to integrate data provided by the patient, the MS nurse and the physician (Schultheiss et al., 2012;Ziemssen et al., 2013). Incorporation of PRO QoL measures in clinical practice is likely to escalate as our understanding of them increases. Already, they have been included as a central element of healthcare evaluation and health service evaluation, disease registries, epidemiological studies, drug R&D, and clinical trials (Riazi, 2006). 6.3. Theme 3: providing credible sources of accurate information Considering the complexity of MS disease pathology and the intricacy of the management options available, provision of trusted, accurate and relevant information is paramount to an MS patient (von Puckler, 2013). A recent Cochrane review determined that information provision to people with MS increased disease-related knowledge with no negative side effects (Köpke et al., 2014). In 65% of clinic visits the patient's desire for health information is underestimated (Waitzkin, 1984). One study highlighted a deficit between the information patients were receiving and the amount of information they actually wished to receive from various sources. While the amount of information provided by MS societies and MS specialist nurses was considered close to ideal, many patients wished to receive significantly more information from GPs, eye specialists, neurologists, and from education sessions (Matti et al., 2010). Unsurprisingly, mass media, rather than interpersonal information sources, are the first route of information accessed by many people with MS concerns (Marrieetal.,2013). However, understandably, many patients haveconcernsaboutthequality of that information (Marrie et al., 2013). One study showed that the most trusted information source was the physician, with 98% reporting that they trusted a physician ‘some’or ‘alot’ (Marrie et al., 2013). In another study, two-thirds of patients were reluctant to discuss internet information with their physician (Hay et al., 2008). Therefore, some patients are exposed to information that is not reliable, and of which their physicians are not aware, nor able to provide their reaction or opinion (Ball and Lillis, 2001;Potts and Wyatt, 2002). A possible barrier to discussing internet-derived information is fear of perceived lack of confidence in the physician. Consequently, the MS physician needs to be prepared to open discussions regarding the accuracy and reliability of this source of information from the first consultation, and to reassure the patient that they are open to discussing information they access. Internet-based information can help bridge the gap between doctor and patient and elevate the level of dialog. However, lack of quality control of such information has led to the development of health website evaluation tools to help direct patients to accurate sources of information. These tools have revealed excellent websites that can meet nearly all of the information needs of people with MS (Harland and Bath, 2007). To our knowledge, there is currently no widely acknowledged quality certification for MS websites, although these do exist in other disease areas. One such scheme undertaken by a French rheumatoid arthritis (RA) patient organization provides a quality rating for RA websites that is arbitrated by both health pro fessionals and patients (http://www.polyarthrite-andar.com/ article171.html). This is possibly an area for future focus in MS. Patients can be supported to self-regulate the information they access and how they interpret it. Some websites provide useful commentary by MS experts, helping patients interpret trial data and understand their likely impact (http://multi ple-sclerosis-research.blogspot.co.uk/). The Multiple Sclerosis International Federation (MSIF) has published guidance for patients on issues to consider when assessing online content regarding MS,(Shaw, 2014) which includes: check who is responsible for developing the content of the website and consider their reasons for providing the information; check whether the content seems reliable, complete and current, and check against other sources; check that the website presents a broad and unbiased view in an easy-to-read format; check that the website's privacy policy and disclaimers are clear and accessible; even if a website looks professional it does not mean it is, check its credentials; check the website's country of origin; treatments or services may not be available in every country. As well as the risk of misinformation, unfettered access to MS information has the potential to overwhelm a patient and cause them anxiety. To help avoid this, information regarding MS can be sensitively phased or layered in topic, rate and complexity, depending on the desire and needs of the individual patient. Modern technology allows an effective and cost 209Achieving patient engagement in multiple sclerosis: A perspective from the multiple sclerosis in the 21st Century -efficient way to achieve this. Giovannoni's ‘tube map’for MS care highlights what information and support is required throughout all stages of the disease (Fig. 1). Owing to the complexity of MS, helping a patient to improve their health literacy –the capacity of the patient to obtain, process and understand basic health information and services needed to make appropriate health decisions –is beneficial. Interventions associated with improved health literacy are shown in Table 1 (Coulter, 2012). However, the impact of information is greater when accompanied by verbal reinforcement by a physician (Coulter, 2012)–and the MS physician and their medical team are in the ideal position to act as a trusted sounding board for a patient with MS. One way of supplementing the education and support provided by physicians and MS nurses is through specialist MS group therapeutic education programs, which can take the form of group seminars or workshops, and may reinforce disease and treatment information, physical rehabilitation and psychological counseling. They have been shown to improve patient coping strategies, patient satisfaction, psychological difficulties, QoL and treatment persistence (Colpaert, 2010;Gallien et al., 2014;Mazaheri et al., 2011; Rat, 2013). These may represent a resource-effective way of providing additional information to MS patients, but analysis on cost-effectiveness and ways to ensure uptake across sub-populations are required (Plow et al., 2010). 6.4. Theme 4: encouraging treatment adherence through engagement With the availability of disease-modifying therapies for MS, problems with adherence to these complex treatment regimens under chronic conditions have been observed (Klauer and Zettl, 2008). In developed countries, treatment adherence among patients with MS is a mere 41% (Steinberg et al., 2010). Considering that lack of adherence to interferon beta treatment in MS correlates with a loss of efficacy, higher relapse rate and higher utilization of health resources,(Steinberg et al., 2010) this remains an area for concern for treating physicians (Martin et al., 2005). The causes of non-adherence in MS are complex and are reported to include forgetting medication, MS-related disability affecting ability to medicate, patient disagreement with need for treatment, cost, poor social support (Girouard and Soucy, 2011;Martin et al., 2005;Lugaresi et al., 2012;Cerghet et al., Fig. 1 Multiple sclerosis tube map. a Redrawn and adapted with permission of Professor Gavin Giovannoni. © Gavin Giovannoni. The schematic demonstrates the breadth of information required by the MS patient throughout the course of their illness. To optimize the impact, information can be layered to a rate and depth relevant to the individual patient. Forthcoming versions of the tube map will include such layering. P. Rieckmann et al.210 Kasper J, Heesen C, Köpke S, Fulcher G, Geiger F. Patients' and observers' perceptions of involvement differ. Validation study on inter-relating measures for shared decision making. PLoS One 2011;6:e26255. 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