A Shared Decision-Making Tool for Achieving Low Disease Activity and Improving Quality of Life

Living with ankylosing spondylitis (AS), psoriatic arthritis (PsA), rheumatoid arthritis (RA), or any chronic illness can be challenging when it comes to reaching low disease activity. But the good news is that there are treatments available to help manage your symptoms and improve your quality of life. 

Working closely with your doctor is crucial to finding the right treatment plan that fits your unique needs and goals. This may involve setting attainable goals like attending an upcoming event, going on a planned vacation, returning to work, or simply being able to perform daily activities without the burden of chronic pain. Together, you and your doctor can work towards achieving these goals and improving your quality of life. 

To help guide your conversations with your doctor, we suggest using a shared-decision making tool as a starting point for productive discussions about achieving optimal disease control. While the term “optimal disease control” may not be part of your regular vocabulary, it simply refers to the process of reducing symptoms and improving your overall quality of life. 

Remember, your doctor is there to support you and work with you to find the best treatment options available. Don’t hesitate to discuss any concerns or questions you may have, and together, you can create a personalized treatment plan that works best for you. 

Step 1: Define Your Treatment Goals and Lifestyle Considerations

The first step is to think about what goals you want to achieve with your treatment — and then prioritize them so you can communicate them clearly with your doctor.  

Keep in mind that it’s okay to modify your goals along the way, depending on how your disease progresses, whether you have any co-occurring conditions, and changes in your short- and long-term lifestyle goals. By integrating both medical and personal objectives, you can work with your doctor to develop a more comprehensive treatment plan that better supports your overall well-being. 

Some common medical goals include: 

• Reducing pain and stiffness
• Improving joint function and mobility
• Preventing joint damage
• Achieving remission or low disease activity
• Minimizing side effects from treatment

Lifestyle goals and considerations include: 

• Maintaining or improving physical fitness and activity levels
• Managing work and daily responsibilities
• Balancing personal and social life, including hobbies and relationships
• Prioritizing mental health and well-being, including managing stress and anxiety
• Addressing dietary and nutritional needs
• Ensuring quality sleep and rest
• Planning for future health care needs, such as surgery or specialized care

Step 2: Share Your Priorities and Preferences

Clearly communicate your medical and lifestyle goals, as well as any concerns or challenges you’re facing. This helps your doctor tailor treatment recommendations that align with your personal needs and objectives. 

For example, consider the way the medication is administered. Is it given as a pill versus injection versus infusion? Which one feels most comfortable for you and fits best with your lifestyle and priorities. For example, if you have a busy schedule or travel frequently, taking a pill may be more convenient for you than having to schedule regular injections or infusions.  

Step 3: Discuss Treatment Options

There are many different medications and treatment approaches available. Some examples include: 

• Nonsteroidal anti-inflammatory drugs (NSAIDs) 
• Glucocorticoids (steroids) 
• Disease-modifying antirheumatic drugs (DMARDs)  
• Conventional synthetic DMARDs 
• Methotrexate 
• Biologic DMARDs  
• TNFi biologics  
• IL-6 
• Targeted Synthetic DMARDs 
• Janus kinase inhibitors (JAKi) 
• Biosimilars 
• Physical therapy and exercise 
• Lifestyle modifications 
• Surgery in severe cases 

Discuss the benefits and risks of each option and help you choose the best treatment plan for you. It’s important to ask questions, express any concerns you may have, and seek clarification on aspects that directly affect your daily life or long-term plans. 

Step 4: Monitor Your Progress

Regular monitoring of disease activity is important to ensure that your treatment plan is working effectively. Depending on your condition and individual patient factors, your rheumatologist may use various disease activity measures to assess disease activity. Being aware of these and discussing with your physician is important 

• Ankylosing Spondylitis Disease Activity Score (ASDAS): A composite measure that assesses disease activity in ankylosing spondylitis based on spinal pain, patient global assessment, peripheral joint involvement, and CRP levels. 
• Clinical Disease Activity Index (CDAI): A composite measure that assesses joint tenderness and swelling, patient and physician global assessments, and CRP levels. 
• Disease Activity Score (DAS): Another composite measure that assesses joint tenderness and swelling, patient global assessment, and CRP levels or erythrocyte sedimentation rate (ESR). 
• Health Assessment Questionnaire (HAQ): A measure that assesses the impact of rheumatic disease on a patient’s ability to perform daily activities. 
• Patient-Reported Outcomes Measurement Information System (PROMIS): A set of questionnaires that assess different aspects of patient-reported outcomes, such as pain, fatigue, and physical function. 
• Routine Assessment of Patient Index Data (RAPID): A composite measure that assesses disease activity based on 5 domains: physical function, pain, patient global assessment, swollen joint count, and CRP levels. 
• Simplified Disease Activity Index (SDAI): A composite measure that assesses joint tenderness and swelling, patient and physician global assessments, CRP levels, and tender joint count. 

Step 5: Adjust Treatment as Needed

It is not uncommon that your current treatment plan might not be meeting your goals or is causing side effects that are impacting your quality of life. If this is happening to you, it may be time to discuss adjusting your plan with your doctor. This can involve trying a different medication or combination of medications, or even evaluating your lifestyle habits. Eating nutritious foods, getting regular exercise, and reducing stress can help manage arthritis symptoms and improve the effectiveness of medication.  

Step 6: Have Patience with the Journey

It’s completely understandable to feel fearful, sad, and anxious about adjusting your treatment plan. Making changes to your treatment can be a difficult and emotional process, especially when you’re dealing with a condition like AS, PsA, or RA. However, it’s important to remember that your journey to finding the right treatment is not always a linear one. Sometimes, it takes a few tries to find what works best for you.  

It’s also important to remember that this is not a failure on your part. What works for one person may not work for another. Your doctor is your partner in this journey and is there to help guide you toward the treatment plan that works best for you, your symptoms, and your lifestyle goals.   

Step 7: Be Open About Complementary Treatment

It’s understandable and normal that you are using or may be looking for additional ways to manage your symptoms. It’s important to be open and honest with your doctor, who can help you make informed decisions that are right for you.

Step 8: Don’t Settle for Subpar Treatment

Finally, it is important to advocate for yourself and not settle for subpar treatment. If you feel that your treatment plan is not adequately managing your symptoms or achieving your goals, bring up your concerns, ask questions, and even reference a drug you saw advertised somewhere.  

 If you think your doctor isn’t fully understanding your concerns or motivations for seeking a change in treatment, that’s a different story — it might be time to seek a second opinion from a different provider. Check out these signs that you’re seeing the right rheumatologist for your health needs.  

Check Out Remission Possible

Our Remission Possible podcast is dedicated to guiding and supporting you on your mission to take back your life and control symptoms. In each episode, we’ll share inspiring stories from patients who are succeeding in their mission and discuss how patients and doctors can work together to better understand the optimal course of treatment for different chronic conditions while keeping personal goals and lifestyle choices in mind. Listen now.  

This article was made possible with support from AbbVie.