Patients & Families

Patient Priorities in Research

Testimonial
“Life as I once knew it seemed to be fading off in a distant shore. I was a strong, vibrant woman and I found myself in the most challenging position you can imagine. Getting a diagnosis of Lupus SLE, Rheumatoid Arthritis, and having a stroke to the left side of the brain was overwhelming. This was the moment of limitations, restrictions, and pain.”
-- Sylvia Faircloth

Research Priorities among Parents and Families of Children with Rheumatic Disease

The goal of project was to improve the relevance of research to patients and families. To understand the most important priorities of patients and families, a survey was emailed to patients and family members who belonged to Cure JM Foundation, the Arthritis Foundation (AF) and the Lupus Foundation of America (LFA). The survey was also posted to those organization’s social media sites. The survey results not only involved JM, JIA, and lupus patients and families in more aspects of research activity, but also helped to frame the national and global research agendas for these diseases.

Parents, patients (13-years old and older), family and friends were included in the survey. They responded to the open-ended survey for Cure JM, AF and LFA. emerged from the open-ended survey responses and were distinguished further through small focus groups. Then, research themes were identified for Cure JM, AF, and LFA, and final surveys were made and distributed through the organizations’ listservs and social media sites. For this survey, respondents were asked to rank the research topics that were most important to them, and the seven most important themes were identified for each disease group. The three research themes common across all disease groups was 1) medication side effects, 2) disease flare and 3) genetic/non-genetic explained.

 

Table 1. Number of research topics created.

  Cure JM AF LFA
Number of Research Themes Identified 23 28 16

 

Table 2. Results from final ranking survey. Top seven priorities from each group, ranked from highest to lowest priorities.

AF Cure JM* LFA*
1. Genetic/Environmental causes of the disease 1. New Treatments 1. Genetic/Environmental causes of the disease
2. Personalized medicine 2. Flares (triggers, prevention, treatment) 2. Quality of life
3. Medication side effects 3. Medication side effects 3. Medication side effects
4. Growth and development 4. Standards to measure disease activity and/or remission 4. Pain management
5. Flares (triggers, prevention, treatment) 5. Genetic/Environmental Etiology 5. Long-term health/prognosis
6. New Treatments 6. JM complications ( i.e. rash, calcinosis, lipodystrophy) 6. Fatigue
7. Pain management 7. Risk of other autoimmune diseases 7. Flares (triggers, prevention, treatment)

*For Cure JM and LFA, cure was the highest ranking priority. Our aim for this study was to identify research priorities other than cure and thus we eliminated these from the final results.

 

This was a project conducted for the patient-powered rheumatology research network, PARTNERS (Patients, Advocates, and Rheumatology Teams Network for Research and Service), to identify and prioritize research areas based on feedback from families and patients with juvenile myositis (JM), juvenile idiopathic arthritis (JIA) and lupus.