Welcome to AiArthritis Voices 360. This episode join your host, Tiffany, as she and co-host Simon Stones discuss the prevalence and logistics of living with multiple conditions. Most health systems have moved away from a model where General Practitioners are managing all aspects of patient care to a model that places more emphasis on specialists and a depth of expertise in a specific disease. The downside to this is it has created a system where patients must be their own Care Coordinators, yet most have no experience or ...
Welcome to AiArthritis Voices 360. This episode join your host, Tiffany, as she and co-host Simon Stones discuss the prevalence and logistics of living with multiple conditions. Most health systems have moved away from a model where General Practitioners are managing all aspects of patient care to a model that places more emphasis on specialists and a depth of expertise in a specific disease. The downside to this is it has created a system where patients must be their own Care Coordinators, yet most have no experience or understanding of how to do this. What can be done to change the system? What can you do in the meantime to ensure that your health is not slipping through the cracks? Tune in to this week’s episode to find out.
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AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Show Notes: Episode 18 – “Living with Multiple Conditions”
00:52 - Tiffany welcomes listeners and co-host, Simon Stones
01:58 - Today’s topic is living with multiple conditions
02:20 – Tiffany’s primary diagnosis is Non-Radiographic Axial Spondyloarthritis, but she also has comorbidities such as Bechet’s Disease and possibly Sjogren’s Syndrome
03:25 - If you have been sick for a while without an explanation, a diagnosis can be a relief
04:27 - Simon was diagnosed with Juvenile Idiopathic Arthritis at age 3 and has no memory of his life before Arthritis
07:06 - At 10, Simon was diagnosed with Slipped Capital Femoral Epiphyses
08:30 - Sometimes secondary conditions can be masked by the symptoms of the primary diagnosis, even when under the care of specialists
09:23 - Patients assume that their specialists will catch new problems, but there is a high risk of new symptoms being dismissed as part of the existing diagnosis
09:45 - Every patient is an expert in their own body and must advocate if they know their symptoms are something to be explored
13:20 - In his teenage years, Simon’s diagnosis was modified to include Psoriatic Arthritis or Undifferentiated Axial Spondyloarthritis
14:50 - In the UK, no biologic therapies are approved for adults with JIA, so patients must have a new diagnosis so they can have access to medication
15:32 - Managing multiple complex diagnoses in a complex medical system can be very complicated
16:51 - Around 12 years old, Simon developed symptoms of Crohn’s Disease, but the symptoms and markers were attributed to his JlA diagnosis
19:03 - Doctors may be reluctant to order tests that are unpleasant for pediatric patients. Parents may need to advocate strongly for their children if they believe something is wrong.
26:02 - Medicine should be evidence-based and not vary wildly from one doctor to the next
27:10 - A comorbidity is the presence of two related diseases (like Rheumatoid Arthritis and Cardiovascular Disease or Psoriatic Arthritis and Psoriasis) where one is the index disease*
27:33 - Multimorbidity is the presence of multiple diseases without the presence of a specific index disease and requires more holistic treatment
29:23: Some people will combine terminology of related diseases (ex: Lupus and Rheumatoid Arthritis = Rupus)
29:40 - Multiple Autoimmune Syndrome (MAS) is a term many doctors and patients use to refer to the presence of 3 or more autoimmune diseases
30:56 - Simon read a study that asserted that 25% of the general population of rheumatology patients has 2 or more diseases, but Simon’s experience would suggest it may be much higher than that
33:13 - Gathering more data would be helpful
34:52 - The actual rarity of having only one autoimmune disease impacts clinical trials because patients with comorbidities and multimorbidities are all excluded from clinical trials
38:17 - When you have multiple diagnoses and multiple specialists, you may need to become your own coordinator of care
39:04 - Pediatric specialists seem to be better about coordinating with each other, but adult specialists often rely on the patient to report what they have been told by their other specialists
41:10 - If you are not advocating for yourself and managing your own care, you run the risk of important warning signs being missed
41:55 - General practitioners used to be very involved in managing patient care across multiple specialities, but that is no longer happening
42:43 - Healthcare systems now really could benefit from moving to a coordinated care model
46:02 - Obtaining health records can be very difficult because patient data is the property of the hospital or doctor’s office instead of the patient
49:40 - Patient advocates should unite to tackle the problem of inconsistent patient data and data ownership
54:27 - The system needs to change, and it can result from grassroots efforts
55:00 - Decision-making processes about reforming the healthcare systems must include patient voices
55:17 - Patients often have the best solutions to healthcare systemic problems because we know exactly what we need to make things work better and reduce waste
56:13 - Tiffany thanks Simon for co-hosting today’s episode
56:52 - If you have an opinion on this topic, IFAA wants to hear from you!
57:08 - If you would like to take a seat at the table, visit us on social medias @IfAiArthritis on all platforms or email us @ podcast@aiarthritis.org
*An index disease is a primary or core disease with a significant impact on the development of a comorbidity
