Patient's Perspective

‘Solving the Myth’

Is ‘remission’ all about calculating disease activity scores? Do we need more drugs in our armamentarium or work on improving compliance? How well do our patients understand their illnesses? Are they able to cope? Do doctors overprescribe? The answers have multiple layers, and are not easy. The first and only step to understand their perspectives better is to engage with them and understand their predicament. Often in a busy OPD, we get lost in counting the joints, particularly in a rheumatoid patient, and forget that the disease has effects beyond joints. About 10–58% of patients have compliance issues. This could be multifactorial, but an imperative reason is lack of disease perception. The enigma of cure still lures them. They are not aware of how long the disease would last. Is it short-lived? They are taken aback by the cyclical nature of the disease, because they are caught unawares. We need to educate them and address this paucity of knowledge about their disease. We need to help them get rid of their fear of the unknown. It is essential to learn about some of the common issues patients face before we move to specific issues. We should not miss the larger picture in an attempt to be too focused.

A lot of emphasis and efforts are being made to educate patients and involve them in decision-making. In fact, EULAR has come up with guidelines for better patient education (PE), participation and recommendations for training for health professionals in delivering PE across Europe. The concept of shared decision-making has become an indispensable part of management.

In order to understand them better, the Gujarat Rheumatology Association organized a patient welfare program entitled Gujarat Rheumatology Initiative for Patient Welfare (GRIP): a program by the people, for the people with GReat Immune Power.

The patient partners, support group representatives, and patients themselves took center stage. It was aimed at making it interactive and help patients understand the concepts of shared decision-making, better engagement, forming support groups, and patient partners. Before the event, a small survey was conducted to understand the beliefs of patients about their illness, concern and beliefs about medications using the self-administered Brief Illness Perception Questionnaire (Brief- IPQ) and Beliefs about Medicines Questionnaire (BMQ).

Figure 1: Beliefs about medication—Assessment of needs and concerns associated with the use of medications.

Figure 1 highlights the difference between the need for a particular medication for their disease (necessity) and concern about potential adverse consequences of using immunosuppressive drugs. Most patients rated necessity beliefs higher than concerns, which indicates positive views about disease-modifying drugs. But this might not be the true reflection, as the data were limited. The computed overall score derived from the Brief-IPQ was high, suggesting a more threatening view of the illness. Was this a driving force? This needs a more detailed evaluation to comprehend various components that make IPQ.

The program started with an introduction on autoimmune diseases. An insight into disease pathogenesis helped them to understand the burning question, why and how does the disease occur? Why me? This was followed by a demonstration of a typical journey of a patient in India and issues with wrong signposting. The biggest challenge is the improvement of patient–doctor engagement and equal participation of patients in delivering better care. An interactive session with the panelists helped in clearing myths surrounding these diseases and addressing a few questions such as:

a) Can it be cured? A tricky question, but the concept of remission was discussed. The control of disease with available medications and physiotherapy was discussed. A need for more awareness and disease education with early diagnosis and management was highlighted, as it will improve the chances of taking a patient close to ‘cure.’

b) The importance of a balanced diet and weight was highlighted. There are no restrictions on diet, except for patients with gout, who need to cut down on alcohol, red meat, and processed food.

c) Is it contagious? No, it is not.

d) Other important issues sich as impact on pregnancy and future generations were discussed, and the significance of keeping the disease in control for six months before conception was emphasized.

e) The importance of family education was also stressed.

Patients drew inspiration from each other’s stories, as the platform also allowed patients to detail their journey in their own words. A few queries from one patient were answered by another, thus encouraging discussion and better patient–patient engagement.

Patient support groups and leaders further highlighted how important it is for patients to be active in decision-making. They highlighted the concept of patient partners and the need for support groups. This will help them deal with issues on their own and work toward better solutions. The functionality and difficulties of patient support groups were touched upon, and patients were encouraged to be part of these.

The program ended with feedback from patients with a plan to conduct a three-monthly meet, moving from a general overview to disease-based themes. This was an effort of the Rheumatology Association of Gujarat (RAG) and involved Sjogrens’ India and Antardhwani (ankylosing spondylitis) as patient support groups.

The Indian Rheumatology Association has created a patient welfare cell, and a team is working on building educational material and videos for patients that can be used across the country with gradual availability of these in regional languages. The success of any such program largely depends on active patient participation. The long-term aim is to increase awareness about the disease at the national level and improve the typical journey of a patient. It is time to move hand in hand with the aim of ensuring a better patient–doctor and patient–patient relationship, as patients and professionals both bring different skills, values, and experiences to research and care.

Avinash Jain, MD, DM (SGPGI, Lucknow)