Exploring Patient-Provider Discordance in ISM Symptom Assessment
Welcome to the latest Allergy, Asthma & Immunology Innovations podcast. Our hosts Payel Gupta, MD, and Kortney are joined by Michael Blaiss, MD, for The Itch Review, a series to talk about allergy and immunology research, breaking it down into simple terms.
This episode looks at how patients and advanced practice providers see the impact of a rare disease called indolent systemic mastocytosis (ISM) on quality of life. The hosts review “Patient and Advanced Practitioner Perspectives on Symptom Burden and Symptom Management in Indolent Systemic Mastocytosis,” published May 4, 2025 in The Journal of the Advanced Practitioner in Oncology.
The study asked: Do people living with ISM and the advanced practice providers (APPs) who treat them agree on how bad the symptoms are and how well the disease is controlled?
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Thank you to Blueprint Medicines for sponsoring this episode.
Are patients and advanced practice providers on the same page with ISM?
This study looks at whether patients and the APPs who care for them understand ISM in the same way. Here’s what we cover in the episode:
- What is ISM? ISM is a rare condition where the body makes too many mast cells. These cells can cause itching, diarrhea, pain, or even serious allergic reactions (anaphylaxis).
- What is symptom burden? Symptom burden means how much symptoms bother someone and make daily life harder.
- What did the study ask? Patients and advanced practice providers (like nurse practitioners and PAs) answered questions about symptoms and how ISM is treated.
- What did the study find? Only 24 out of 100 patients felt their ISM was under control. But 76 out of 100 providers thought their patients were doing well.
- What symptoms were hardest to manage? Patients and APPs didn’t always agree.
- Why does this matter? Improve communication between patient and healthcare professionals.
Timestamps for the podcast on ‘Living with ISM’
01:30 – Why we’re covering a cancer journal article
04:00 – What ISM is and how it affects you
07:53 – What “symptom burden” means
09:54 – Why they surveyed patients and providers
11:21 – How the survey was done
17:29 – Who answered: patients and APs
20:41 – Big finding: patients vs. providers disagree
23:47 – Symptoms that cause the most trouble
27:13 – Using a tool to track symptoms
31:30 – Things that trigger symptoms
34:08 – Dr. Blaiss’s top lesson
34:40 – Dr. Gupta’s simple tips
