Welcome to Relatable Rheumatology: From Stories to Studies, a podcast where we explore the personal experiences of people living with rheumatic diseases and the latest research evidence on the pathway to diagnosis and challenges around it, what research is telling us about rheumatic diseases and strategies to manage it and the latest cutting-edge treatment and therapeutics.
In this podcast, we invite patients to share questions or concerns that they encountered during their journey, and we welcome experts in relevant fields to describe the research evidence, novelties in clinical practice, and new evidence and technology to address these concerns and questions.
This podcast is hosted by Dr. Ben Nowell and Dr. Shilpa Venkatachalam and is a co-production by the Global Healthy Living Foundation and HCP Live.
Learn more at ghlf.org/relatable-rheumatology/ (https://ghlf.org/relatable-rheumatology)
“Why does chronic pain affect the whole person?”
In our third episode of Relatable Rheumatology: From Stories to Studies, we explore chronic pain and our expanding understanding of its impact on both body and mind. To examine chronic pain from a “whole-person” perspective, we will discuss how pain thresholds change, how emotions intersect with bodily sensations, and what all of this means for chronic pain treatment using pharmacological and non-pharmacological approaches.
We are joined by Dr. Beth Darnall, Professor of Anesthesiology, Perioperative and Pain Medicine at Stanford University's School of Medicine and Director of Stanford Pain Relief Innovations Lab and Tien Sydnor-Campbell, a patient advocate who lives with rheumatoid arthritis and osteoarthritis and who is a medically retired, body-centered psychotherapist and former body worker with 25 years of clinical experience.
This podcast is co-produced by the Global Healthy Living Foundation and HCP Live.
Additional Resources:
(1.) https://creakyjoints.org/chronic-pain/ (https://creakyjoints.org/chronic-pain/)
Pain Explained: An Online Package to Better Understand and Manage Chronic Pain.
Created with the support of The Patient Centered Outcomes Research Institute (PCORI)
(2.) https://pubmed.ncbi.nlm.nih.gov/35486218/ (https://pubmed.ncbi.nlm.nih.gov/35486218/)
Cannabis for Rheumatic Disease Pain: a Review of Current Literature
Nowell WB, Gavigan K, L Silverman S. Cannabis for Rheumatic Disease Pain: a Review of Current Literature. Curr Rheumatol Rep. 2022 May;24(5):119-131. doi: 10.1007/s11926-022-01065-7. Epub 2022 Apr 29. PMID: 35486218.
(3.) https://pubmed.ncbi.nlm.nih.gov/29717254/ (https://pubmed.ncbi.nlm.nih.gov/29717254/)
To treat pain, study people in all their complexity
Darnall B. To treat pain, study people in all their complexity. Nature. 2018 May;557(7703):7. doi: 10.1038/d41586-018-04994-5. PMID: 29717254.
(4.) https://pubmed.ncbi.nlm.nih.gov/34541966/ (https://pubmed.ncbi.nlm.nih.gov/34541966/)
Psychological Treatment for Chronic Pain: Improving Access and Integration: Improving Access and Integration.
Darnall BD. Psychological Treatment for Chronic Pain: Improving Access and Integration. Psychol Sci Public Interest. 2021 Sep;22(2):45-51. doi: 10.1177/15291006211033612. PMID: 34541966; PMCID: PMC9970761.
(5.) https://www.amazon.com/Healing-Time-BodyMind-Black-Womxn/dp/1950279308/ref=sr_1_1?qid=1687534449&refinements=p_27%3ATien+Sydnor-Campbell&s=books&sr=1-1 (https://www.amazon.com/Healing-Time-BodyMind-Black-Womxn/dp/1950279308/ref=sr_1_1?qid=1687534449&refinements=p_27%3ATien+Sydnor-Campbell&s=books&sr=1-1)
It's Healing Time for the BodyMind of Black Womxn: How to Live a Life You Love and Love the Life You Live Paperback – November 14, 2020 by Tien Sydnor-Campbell
(6.) https://www.amazon.com/EveryBODY-Has-Story-BodyMind-Journal/dp/B0BFJDS714/ref=sr_1_2?qid=1687534449&refinements=p_27%3ATien+Sydnor-Campbell&s=books&sr=1-2 (https://www.amazon.com/EveryBODY-Has-Story-BodyMind-Journal/dp/B0BFJDS714/ref=sr_1_2?qid=1687534449&refinements=p_27%3ATien+Sydnor-Campbell&s=books&sr=1-2 )
EveryBODY Has A Story: A Body Mind Journal Paperback – September 14, 2022 by Tien Sydnor-Campbell (Author)
Learn more at ghlf.org/relatable-rheumatology/
See omnystudio.com/listener (https://omnystudio.com/listener) for privacy information.
12 Jun 2023
Vein Truth? Blood Work in Rheumatoid Arthritis Diagnosis, Treatment, and Monitoring
“What should I be paying attention to in my RA-related blood work?”
In our second episode, we will be exploring blood work in rheumatoid arthritis (RA) and how lab results are viewed and used by someone living with RA and by an expert rheumatologist. We are joined by Dr. Liana Fraenkel, attending rheumatologist at the Berkshire Medical Center and Adjunct Professor of Medicine at Yale University, and Deen Allen, a PhD in cosmetic chemistry and patient advocate who lives with RA. We also go on site at the EULAR 2023 conference in Milan, Italy, where Dr. Nowell presents his research and interviews RA patients Deb Constien and Eileen Davidson about the topic. Although blood work provides useful information about RA disease, it has limitations. With future innovations, blood work may be able to tell us much more.
This podcast is a co-production by the Global Healthy Living Foundation and HCP Live.
Additional Resources:
(1.) https://onlinelibrary.wiley.com/doi/abs/10.1002/acr.25187 (https://onlinelibrary.wiley.com/doi/abs/10.1002/acr.25187)
Nowell WB, Venkatachalam S, Gavigan K, et al. OP0288-PARE Patient Perceptions of Rheumatoid Arthritis Blood Work and Utility of a Test Predicting Response to New Medication: A Cross-Sectional Survey in the ArthritisPower Registry. Annals of the Rheumatic Diseases. 2023;82:188.
(2.) https://learn.creakyjoints.org/ra-tests/ (https://learn.creakyjoints.org/ra-tests/)
A Patient’s Guide to Understanding Rheumatoid Arthritis Testing & Monitoring – CRP, ESR, Vectra, and More: Learn about the main RA blood tests and what they can — and can’t — reveal about your health
(3.) https://nras.org.uk/resource/blood-matters/ (https://nras.org.uk/resource/blood-matters/)
Blood Matters: A guide to the blood tests used in managing rheumatoid arthritis and adult juvenile idiopathic arthritis
(4.) https://pubmed.ncbi.nlm.nih.gov/25365085/ (https://pubmed.ncbi.nlm.nih.gov/25365085/)
Pincus T, Gibson KA, Shmerling RH. An evidence-based approach to laboratory tests in usual care of patients with rheumatoid arthritis. Clin Exp Rheumatol. 2014 Sep-Oct;32(5 Suppl 85):S-23-8. Epub 2014 Oct 30. PMID: 25365085.
(5.) https://pubmed.ncbi.nlm.nih.gov/19962617/ (https://pubmed.ncbi.nlm.nih.gov/19962617/)
Pincus T, Sokka T. Laboratory tests to assess patients with rheumatoid arthritis: advantages and limitations. Rheum Dis Clin North Am. 2009 Nov;35(4):731-4, vi-vii. doi: 10.1016/j.rdc.2009.10.007. PMID: 19962617.
You can also check out one of CreakyJoints articles on the matter here: https://creakyjoints.org/eular-2023/rheumatoid-arthritis-blood-work-study/ (https://creakyjoints.org/eular-2023/rheumatoid-arthritis-blood-work-study/)
Learn more at ghlf.org/relatable-rheumatology/ (https://ghlf.org/relatable-rheumatology)
See omnystudio.com/listener (https://omnystudio.com/listener) for privacy information.
23 May 2023
Making the Invisible Visible: Using Patient-Reported Outcomes in Research
In our first episode, we will be exploring how the lived experience of someone managing a condition like rheumatoid arthritis can systematically be documented via the use of what we call Patient Reported Outcome Measures.
Joining us to explore this topic are Dr. Susan Goodman, Professor of Clinical Medicine at Weill Cornell Medicine, Director of the Integrative Rheumatology and Orthopedics Center of Excellence, and Medical Chief and Research Director of the Combined Arthritis Program Hospital for Special Surgery, and Shelley Fritz, who is an educator and patient advocate who lives with rheumatoid arthritis and several co-morbidities.
This podcast is a co-production by the Global Healthy Living Foundation and HCP Live.
Additional Resources:
(1.) https://ard.bmj.com/content/71/11/1855.long (https://ard.bmj.com/content/71/11/1855.long)
Bartlett 2012 “Identifying core domains to assess flare in rheumatoid arthritis: an OMERACT international patient and provider combined Delphi consensus” from the OMERACT RA Flare Working Group where patients identified fatigue as an important concern
(2.) https://arthritis-research.biomedcentral.com/articles/10.1186/s13075-019-2076-7 (https://arthritis-research.biomedcentral.com/articles/10.1186/s13075-019-2076-7)
Gavigan 2020 – in particular look at Figure 6 – that’s really the one related to PROs, including RAPID3 and how well they measure patients’ off the cuff response about how they are feeling
(3.) https://arthritis-research.biomedcentral.com/articles/10.1186/s13075-021-02430-0 (https://arthritis-research.biomedcentral.com/articles/10.1186/s13075-021-02430-0)
Nowell 2021 “Which patient-reported outcomes do rheumatology patients find important to track digitally? A real-world longitudinal study in ArthritisPower”
(4.) https://pubmed.ncbi.nlm.nih.gov/30927515/ (https://pubmed.ncbi.nlm.nih.gov/30927515/)
Yun 2020 – this was a good study of ArthritisPower data to show how you can predict certain PROs using other PROs, meaning you don’t have to always ask patients every single measure, so it can save some time and burden on patients responding to questions
Learn more at ghlf.org/relatable-rheumatology/ (https://ghlf.org/relatable-rheumatology)
See omnystudio.com/listener (https://omnystudio.com/listener) for privacy information.
23 May 2023
Trailer
Hosts Dr. Ben Nowell and Dr. Shilpa Venkatachalam describe their objective and format for the Relatable Rheumatology podcast, and they offer examples of topics for upcoming episodes.
This podcast is a co-production by the Global Healthy Living Foundation and HCP Live.
Learn more at ghlf.org/relatable-rheumatology/ (https://ghlf.org/relatable-rheumatology)
See omnystudio.com/listener (https://omnystudio.com/listener) for privacy information.
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