|Ahead of print publication
Patient support groups in rheumatic diseases: An evolving and essential component of patient care
Siew Houy Chua1, Liu Hong Eow2, Kok Wei Poh1
1 Department of Internal Medicine, International Medical University, Seremban, Negeri Sembilan, Malaysia
2 Department of Rheumatology, Hospital Tuanku Ja'afar Seremban, Negeri Sembilan, Malaysia
|Date of Submission||06-Apr-2022|
|Date of Acceptance||27-May-2022|
|Date of Web Publication||20-Sep-2022|
Siew Houy Chua,
Department of Internal Medicine, International Medical University, Jalan Rasah, Bukit Rasah, 70300 Seremban, Negeri Sembilan
Source of Support: None, Conflict of Interest: None
Patient support groups, also known as patient advocacy organizations, offer instrumental, emotional, research opportunities and even fundraising to support patients, families, and caregivers affected by certain diseases. The support groups offer therapeutic benefits, not only medically, but also psychosocial aspects of the patients. They serve to increase disease awareness among the patients, public and health professionals which results in promoting patient empowerment in self-management and improving the overall support network for the patients. Rheumatic diseases are often chronic, progressive autoimmune conditions which commonly cause physical symptoms, functionality disability, psychological, social, and economic impact on the patients' lives. However, limitations such as lack of access to local support groups especially with the rare diseases, and difficulty in sustaining a group due to funding and leadership issues, do exist. This article focuses on the role of the patient support group in complementing the medical treatment provided by health professionals among patients with rheumatic diseases and ways to enhance the sustainability of patient support group.
Keywords: Chronic diseases, online support group, rheumatoid arthritis, social support, telemedicine
| Introduction|| |
Patient support groups, also known as patient advocacy organizations, bring together people with common experience and concerns to provide resources for patients, families, and caregivers affected by certain diseases. Commonly, the resources offer not only informational but instrumental and emotional support serve to bridge the gap between professional medical treatment and the need for psychosocial support. These groups also create opportunities for clinical and scientific research, referrals to expert healthcare providers, raising public awareness, especially on rare diseases and fundraising.
The mental health consumer movement in the 1970s was the first to strongly influence the implementation of support groups. Psychiatry patients initiate groups to improve patient rights, reduce stigma and discrimination, and promote peer-run services as an adjunct to medical care. By 1980s, support groups for mental health concerns were linked with government and professional organizations, which results in increased funding and infrastructure to sustain the groups. Support groups then quickly expand to other chronic diseases, and currently, support groups are commonly available to people with common physical and mental health conditions.
Majority of the rheumatic diseases are chronic, progressive autoimmune conditions which commonly give rise to not only physical symptoms and functional disability, but also psychological, social, and economic impacts on the patients' life., An estimated 10% of individuals affected by psoriasis have had suicidal ideations, a prevalence surpassing many other medical conditions. Systemic lupus erythematosus (SLE), an invisible illness as a result from unseen symptoms, often lack social support and sufferers are vulnerable due to such inadequacy. While the main goal of treating rheumatoid diseases is to achieve disease remission, discussing other coping strategies such as physical, mental, and social activities appear to be overlooked sometimes. It is also important to treat the patient with recognition of the many psychosocial factors that accompany these illnesses. Professionals are valued for their expertise in diagnosing and providing medical treatments, however, they are not the sole player in ensuring well-being among these affected persons. Many studies showed that fellow patients were capable of sharing practical information and personal experiences about treatment procedures and outcomes, and strategies for symptom self-management through support groups. A group of RA patients felt that through the support group, they had received benefit and improvement in their emotional health, disease self-management, decrease isolation, improved support and understanding which may positively contribute to the quality of life. Furthermore, patients also perceive improvements in disease severity and quality of life by encountering support groups. In a study among psoriasis patients, increased level of participation in support groups was linked to improvement in quality of life using validated measures such as the Dermatology Life Quality Index which covers multiple aspects of patients' life such as symptoms, feelings, capability in carrying out daily activities and work, along with satisfaction over personal relationships and treatment.
This article focuses on the role of patient support groups in complementing the medical treatment provided by health professionals among patients with rheumatic diseases and ways to enhance the sustainability of patient support groups.
| Type of Support Patients Need|| |
The two main types of support patients with chronic illnesses need are instrumental and psychosocial support. Instrumental support focuses on sharing information and personal experiences about the disease among people affected by a similar condition. Psychosocial support refers to the strengthening of psychological resources and social support needed to manage the illness. The psychological dimension includes the internal, emotional, and thought processes, feelings and reactions; and the social dimension includes relationships, family and community network, social values, and cultural practices.
There is limited study on what specific support patients with rheumatic diseases desire. Recent research indicates that self-management support does not necessarily need to be disease specific since disease type only had a small effect on self-management tasks and an even smaller effect on support needs. It should be noted that patient support needs are unique and may change over time. Two main factors that contribute to this uniqueness are (i) disease-related factors, such as disease stage and severity; (ii) individual-related factors, such as cultural background, ethnic, and gender. For example, patients in early stage of diagnosis focus on information about the disease and treatment available while psychosocial support becomes more important in the later phase. Patients who are symptom free do not require support in dealing with such consequences compared to symptomatic or relapse patients.
| Instrumental Support|| |
Considering the majority of rheumatic diseases are chronic illnesses that last for decades, patient education is of upmost importance. Handling out written information and telling patient what to do are merely enough to adjust life to the medical condition. Generic advice given by the health-care professionals can be difficult to follow in view of ethnic and cultural diversity among our patients. This can be overcome by peer support through patient support group where fellow patients can share practical information (in lay terms) such as treatment procedures and side effects, strategies for symptom self-management and their personal experiences in interaction with health-care professionals. Information acquired should be integrated into their thoughts while making treatment-related decisions and lifestyle changes to improve quality of life. Many group members share that before participating in a group, they had never met another person with rheumatoid arthritis, lupus, spondyloarthritis, or myositis. Newly diagnosed members often comment on the profound experience of learning from veteran members, who share their personal journeys and strategies for coping through patient support groups.
| Psychosocial Support|| |
Fellow patients are an important source of support, not only by sharing their own lived experiences but also by fulfilling psychosocial needs. They can show sympathy and provide emotional support.,, Knowing that others may experience the same hardship provided comfort, hence alleviate feeling of anxiety and reinforce self-confidence and empowerment. There is some evidence that support group members may experience improved emotional well-being, and that they may be more likely to make behavior changes required to self-manage or cope effectively with their medical condition.
| Support Group Models|| |
Various models exist for patient support groups, such as face-to-face peer-led, professional-led or peers coaches support group, telephone-based, and web- and E-mail-based programs. Group in all its permutations - psychosocial, support, education, peer, skill-based, self-help, and others - offers unique therapeutic features.
Many patient support groups use peers to benefit the participants. Peer mentoring introduces patients as coaches who can share their experiences about their disease with other patients who are affected by the same condition. As people themselves who are living with a certain disease, they serve as an excellent role models especially in sharing their knowledge in self-management as a complementary method of patient education. Peer mentoring also provide the patients a platform to digest information given by the healthcare professionals and discuss sensitive topics that are not easily discussed in the clinic due to time constraint. Furthermore, patients feel that peer mentoring can provide additional understanding and recognition by getting confirmation as to whether what they experience is “normal.” A telephone peer coaches program among RA patients showed a trend of improvement in quality of life using the self-reported health questionnaire SF-12 PCS. However, the professionals are concerned about the accuracy of the information shared and a potential loss of objective information transmission by the peer mentor.
Does the model of the patient support group matter the outcome? A study conducted by Giles showed that there were no significant differences in overall quality of life between patients participating in online and traditional face-to-face support group. On the other hand, online support group offers anonymity and avoid the embarrassment factor for patient to be involved in group interactions. This is evidenced by a high level of engagement in online support groups among psoriasis patients with severe skin condition.
| Role of Patient Support Groups in Rheumatic Disease|| |
A 2016 multidisciplinary European League Against Rheumatism task force included evidence-based recommendations for incorporating patient education as an integral component of standard care for people with inflammatory arthritis. Patient education can help patients in making the right decisions about adjustments in their treatment and in developing the necessary “self-management” behaviors. The most successful educational programs emphasize the attainment of a daily routine of self-management activities and pay attention to physical exercise, coping, self-efficacy, and problem-solving strategies. Taal et al. showed that the patient group program led by nurses specialized in rheumatic diseases, physiotherapists, or social workers, gave beneficial effects of education on knowledge, outcome expectations, self-efficacy function, the performance of relaxation exercises, physical exercises, and self-management activities.
The rheumatology department at the Royal Wolverhampton NHS Trust established a Patient Participant Group, the Rheumatology User Group in 2010, with the purpose of ensuring that patients and carers were involved and informed of decisions on the range, content, quality, and delivery of rheumatology services. The group chaired by allied health professional and membership of a consultant, service and nurse managers, and patients. Examples of positive patient-led actions include staff training, review of educational literature, representation to trust management meetings, and patient-led educational initiatives. This model has produced a sustainable and productive Patient support group, leading to improvements in care quality, service development, patient safety initiatives, and helped service funding.
Many rheumatological conditions have a period of flares and of remission, involve symptoms that are not physically evident to others (e.g., fatigue, myalgia, fever), hence, they have been described as “invisible illness.” These patients are vulnerable to ineffective support and negatively impact on adjustment, which can have a direct and indirect impact on their health. While the patient support group can help to promote disease awareness among the health professionals and public, this will help patients to feel that their illness is better understood and that negative feeling such as disbelief and lack of social support can be reduced. Brennan and Creaven reported that low public awareness of SLE appears to contribute to feelings of invisibility for patients, leading to loneliness and isolation, creating difficulties in all aspects of their lives.
Malaysian SLE Association or “Persatuan SLE Malaysia” was set up in 1994 by concerned doctors and patients to help people suffering from SLE by promoting the understanding of SLE and related Mixed Connective Tissue Disease among medical professionals, patients, their families and the community at large. Information leaflets, newsletters, public forums, doctors' forums, and publicity through television, radio, and the print media were provided to increase the awareness of the diseases.
Research in rheumatology disease has brought about major advances in finding the causes as well as treatments for various rheumatic conditions resulting in reduced morbidities and mortalities. The Arthritis Foundation of USA, founded in 1948, is the only national none-profit organization that supports the more than 100 types of arthritis and related conditions. The Arthritis Foundation has multiple service points located throughout the country. It is the largest private, not-for-profit contributor to arthritis research in the world. The foundation helps people in pursuing public policy and legislation; and conducting evidence-based programs to improve the quality of life for those living with arthritis. Versus Arthritis UK is another charity organization leading the fight against arthritis by funding high-class research, providing information, and campaigning.
Support groups for rare diseases
Support groups are common and widely available for common chronic diseases such as cancer, diabetes, and heart disease. Common diseases' support groups are frequently organized and delivered by professionals. In rare diseases, such as scleroderma, however, professionally organized support services are typically not available or readily accessible. Peer-led support groups, on the other hand, face challenges such as lacking experienced group facilitator and poor sustainability. Scleroderma and Raynaud's UK is an example of the patient support groups located throughout the UK. The groups are led by dedicated leader, who is a volunteer and someone who has been affected by one of these conditions. Their objectives are to (a) improve awareness and understanding of Scleroderma and Raynaud's, (b) provide access to high quality evidenced-based information and support, (c) ensure the equity of access to treatments, (d) fund innovative and ground-breaking research in precision medicine, early detection, quality of life and understanding the cause.
| How to Enhance Sustainability of Patient Support Groups?|| |
Online support group
The advancement in telecommunication and social media has offered new ways for patients to interact other than the traditional face-to-face facilities. This approach is not novel, however, there has been a dramatic rise in the use across all fields, especially during the COVID-19 pandemic. Several online-based interventions such as web-based rehabilitation, online social support group, and online outpatient consultation are available to people with rheumatoid arthritis across the world.,, The online-based support system can generally be divided into asynchronous (patients can leave questions and comments and assess the materials later, such as Facebook group and web-based discussion forum) and synchronous (e.g., a real-time session with peers or professional staff). They can also be either peers-moderated, expert-moderated, or none. These different methods of communication have their specific role in supporting the patients. For example, an asynchronous platform such as an online forum or Facebook group can allow patients to assess materials and others' concerns at any time of the day or allow them to post theirs in anonymity. On the other hand, the synchronous session can simulate a face-to-face session where patients can participate in any place.
One of the major advantages of an online-based system is eliminating the need of travelling to the facilities. This provides a solution to patients with locomotion difficulty or geographical barriers. In addition, with the majority of rheumatic disease patients are being immunocompromised, social avoidance behavior further deter people from physical gathering during the COVID-19 pandemic. Hence, an online-based system would provide an alternative way to continue all possible and necessary consultations and therapies. A study on an online interactive tool with personalized information and communication platform helps to reduce stress and improve self-efficacy among participants with rheumatoid arthritis; although did not significantly affect psychological empowerment, acceptance, and pain management.
Online support system can also overcome the embarrassment constraints with its anonymity features., A study among the psoriatic patients showed a high level of engagement by people with very severe psoriasis (>20% of body surface area affected), which contradicts previous reports that individual with extensive disease are more likely to adopt avoidance behaviors and less inclined to seek social support. However, greater anonymity may be associated with less credibility, poor engagement, and low satisfaction.,,, Nevertheless, it is crucial to assess these results with care as many factors determine the effectiveness of an online or virtual support group; such as the role of a moderator, the presence of expertise, engagement of other participants, personal preference of different platform, and frequent contact with passive participants.,,, Therefore, a qualitative study would provide a better insight than a quantitative study. A more personalized approach including tailored feedback, dynamic content, and a combination of synchronous and asynchronous approaches could help participants to get involved. Participants who did not contribute to the online discussion could still benefit from the session. Therefore, “pure listeners” should still be encouraged to participate in online forums but get in touch with them once in a while to get them involved.
Another key challenge to the online platform is sorting out misguided information., The presence of misguided information could lead to dropping out of standard therapy, uptake of proven therapy, and loss of trustworthiness on the platform. The presence of an expert or professional moderator could help to reduce the risk of misinformation by intervening whenever misinformation is identified., Physicians should brief beforehand regarding the potential misinformation and frequently discuss with the patients about their progress involved in any social support group.
Physicians should be aware of the availability of social support groups around their community along with the availability of online-session and to explore with patients regarding their preferred choice. There should not be a generalized view on the online social platform but rather to understand the specific role and the themes involved in each platform. It is essential for physicians to explore the nature and the technique used in each online platform before recommending to maximize the benefit of the recommended support groups and prevent misguided information. Physicians should also check with their patients if they have attended any other online support group or learned anything new from the internet; so that any misinformation can be intervened early.
Important barriers to sustaining support group exist, including the lack of access to local support groups, burden to peer leaders, and a lack of confidence among health professionals about the ability of some groups to meet patient need successfully. Training and educational programs for support group leaders could provide the necessary information and skill to improve the ability of systemic sclerosis (SSc) peer support group leaders to lead sustainable, effective support groups; reduce the emotional and physical toll on leaders; and encourage new leaders to set up a support group where none exists, physically or via online. In partnership with the national SSc organizations, the Scleroderma Patient-centered Intervention Network has developed a training program to improve patient support group leaders' confidence and self-efficacy to carry out their leadership roles.
Other pressing concerns raised by study group participants were securing institutional buy-in and funding; engaging multidisciplinary partners; developing group focus and content; and, not insignificantly, addressing novice facilitators' feelings of inadequacy in a new role. One approach to consider is a pilot group. Over time, a grant-funded program that demonstrates positive outcomes may succeed in securing a line in its organization's budget. Practices can also partner with or adapt other organizations' programs, or access expertise through those whose missions align with yours. These may include hospitals, disease-specific education, and advocacy organizations, as well as social service agencies and social work or psychology departments of universities. Professional associations may also be able to provide guidance and/or recommend group consultants to deliver staff training and supervision.
Potential future development
Metaverse, a digital world accessed by virtual reality or augmented reality technologies, where users can enter a digital world for social activities or even into a virtual workplace. Big Tech companies such as Microsoft and Meta (previously known as Facebook) are getting involved in developing their own Metaverse., Therefore, this could provide the healthcare industry with a new platform including a virtual social support group. This virtual social support group could simulate a face-to-face session to a much greater extent than ever before; including a realistic office design, group therapy where everyone can interact, and the ability to “walk around.”
| Conclusion|| |
Patient support groups in rheumatic diseases, by large, are known to be associated with improvement in overall well-being. However, the models of support system should be personalized to encourage patient engagement and program effectiveness. Further qualitative studies should be encouraged to explore ways in overcoming the sustainability limitations.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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