Survey results are in: What do Puerto Rican arthritis patients want in an online community?

To read this in Spanish Click here

Puerto Rican Foundation for Rheumatic Diseases (FER) Symposium, San Juan, Puerto Rico

Puerto Rican Foundation for Rheumatic Diseases (FER) Symposium, San Juan, Puerto Rico

In November 2014, CreakyJoints conducted a survey at the 3rd annual Puerto Rican Foundation for Rheumatic Diseases Symposium (Fundación Puertorriqueña de Enfermedades Reumáticas) in San Juan, Puerto Rico. The symposium brought together arthritis patients and their family members along with rheumatologists and other health providers to talk about how best to manage this chronic disease.

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CreakyJoints staff members Research Associate Roma Padalkar and Dr. Ben Nowell, Director, Patient-Centered Research, attend FER Symposium

 

CreakyJoints is the most popular arthritis online community in the world—but that’s in English. We’re now looking to also serve Spanish speaking and Latino arthritis patients. To help us in our goal, we asked FER Symposium attendees about what types of resources they would like to see on the CreakyJoints website. The questionnaire was available in both Spanish and English. 

 

Los resultados de la encuesta  (The results of the survey)

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Of the approximately 700 people who attended the symposium, 355 completed the CreakyJoints survey, with 264 self-identifying themselves as patients.

Here’s a breakdown of the arthritis-related conditions reported by the patients:

  • Rheumatoid Arthritis 40.2%
  • Osteoarthritis 39.4%
  • Fibromyalgia 28.8%
  • Osteoporosis/Osteopenia/low bone mineral density: 27.7%
  • Lupus 12.5%
  • Other 8.3%
  • Ankylosing Spondylitis 5.7%
  • Psoriasis: 4.5%
  • Inflammatory Bowl Disorder 4.5%
  • Psoriatic Arthritis: 4.2%
  • Don’t Know 1.9%
  • Juvenile Idiopathic Arthritis 1.1%
  • Myositis 1.1%
  • Scleroderma 1.1%
  • Gout 0.8%

 

Of the 355 patients, family or friends of patients, and healthcare providers who took the survey, making resource materials available in Spanish was most important.

Here’s what survey respondents want to see in an online community:

  • Reading materials in Spanish 77.7%
  • Information about arthritis treatments and medications in Spanish 55.8%
  • Updates about policies for arthritis-related healthcare in Puerto Rico 49.9%
  • An online community of arthritis patients communicating in Spanish 49.0%
  • Patient resource and assistance materials in Spanish 44.8%
  • A tool to track my arthritis symptoms to show to my doctor 34.1%
  • Being part of research to help improve arthritis treatments 31.8%
  • Being an advocate to fight for patients’ rights in Puerto Rico 29.3%
  • Reading blogs from other patients about living their life with arthritis 23.9%
  • A free service that reminds me to refill my prescription 23.4%
  • A free service that reminds me of my doctor appointments 21.4%

 

As a majority of the survey respondents want information about arthritis in Spanish, CreakyJoints will not only work to provide resources such as advocacy and legislative updates and educational information in Spanish but offer online places for patients to communicate with each other such as a message board for people to discuss in Spanish.

Thanks to a majority of the patients who took the survey also listing contact information such as an email address or phone number, CreakyJoints has been able to stay in contact with these patients via texts and emails. Moving forward we will seek their feedback and suggestions.

 

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CreakyJoints attended the 3rd annual Puerto Rican Foundation for Rheumatic Diseases symposium in collaboration with the Puerto Rican Foundation for Rheumatic Disease to better understand the needs Spanish speaking and Latino arthritis patients. 

CreakyJoints has been contracted to create a research registry containing information about patients in the United States with Rheumatoid Arthritis, Psoriatic Arthritis, and Spondyloarthropathies such as Ankylosing Spondylitis, as part of the Patient Centered Outcomes Research (PCORI) CreakyJoints® “Arthritis Power,” the AR-PoWER Patient-Powered Research Network  This registry will be unique in the method of data collection (via smartphones) and puts the patient at the forefront of research in what PCORI has termed “patient-centered research.”  This registry aims to accurately represent those who suffer from this disease, which includes the Latino population.

 

More photos from the FER conference

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