Survey will help study mental health needs for rare patients in US & UK

A new survey has been released to study the mental health needs of people with rare diseases, and patients with all rare diseases from the United States and United Kingdom are welcome to try it.

The survey is the brainchild of Frank Rivera, a patient with Stronger Than Sarcoidosis, a Long Island based support group for people with sarcoidosis. Frank has been active in the rare community for years, and saw the need for a patient driven/patient facing survey on the often understudied and mental health needs of people with rare diseases like sarcoidosis. 

To design and run the survey, Frank has teamed with Unboxed Psychology, a behavior science consulting firm based in the United Kingdom. Together they've produced a basic needs assessment survey people can answer online in about 10 minutes. While participants agree to provide basic information, participant confidentiality is secured and the data is only seen by Stronger Than Sarcoidosis and Unboxed Psychology.

According to Frank, patients need more opportunities to be heard by their support organizations about their mental health needs. "One thing I really want to do with the results is turn it into a white paper to show the patient organizations some of the unmet needs and where they have an opportunity to help more." 

The survey can be accessed through the QR code shown here or this survey link. 

If you have questions you can also contact Frank Rivera at fjr311@gmail.com 

Starting the care journey isn't always simple 

Source: United Kingdom National Health Service National Genomics Education Program

Rare disease patients will often be seen by numerous healthcare professionals across several different specialties, all of whom may offer diverging opinions or diagnoses. This usually involves multiple appointments that are geographically dispersed, often with little communication between services – which can lead to an incorrect diagnosis or even delivery of the wrong treatment. This experience is so common within the rare disease community that it has its own name: the diagnostic odyssey

A person living with an undiagnosed condition will often have no relief from symptoms during their journey to diagnosis. They may also face doubts and dismissal from healthcare professionals. Emotions and challenges experienced can include:

• feelings of isolation, fear and stress;

• deterioration of physical and mental health;

• financial difficulties;

• impacted career and education opportunities; and

• breakdown of personal and/or familial relationships.

In working out how best to support someone with a rare condition, there is often a process of trial and error. As rare diseases present with so many unknowns, it is important that healthcare professionals  work together to deliver the best possible outcome for the patient.

It's important to remember that, from the patient’s perspective, receiving a diagnosis is not the only thing that matters: the way the diagnosis is obtained and delivered, and the ways which the patient is supported through the process, are both crucial to improving the rare disease patient experience and health outcomes.