Ep. 118 The ISM Disconnect: Do Patients and Providers Agree on Symptom Control?
Part of the series: The Itch Review
LISTEN TO EPISODE 118: Apple Podcast • Spotify • Amazon Music
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Do patients and their healthcare teams view the impact of indolent systemic mastocytosis on quality of life in the same way?
In this episode of The Itch Review, we unpack key findings from a May 4, 2025, descriptive study from The Journal of the Advanced Practitioner in Oncology, “Patient and Advanced Practitioner Perspectives on Symptom Burden and Symptom Management in Indolent Systemic Mastocytosis.”
Is there a disconnect between what patients feel and what providers think when it comes to indolent systemic mastocytosis (ISM)? A new study suggests yes, revealing a mismatch between how patients and advanced practitioners (APs) perceive disease control and what that means for care. This episode dives into whether research like this could help bridge the gap between patient experience and clinical perspective.
What we cover in our episode about indolent systemic mastocytosis symptom burden:
Understanding ISM: What makes indolent systemic mastocytosis a unique multisystem condition?
Symptom burden explained: Frequency, severity, duration, distress, and functional interference.
Patient vs practitioner views: Understanding the most impactful symptoms differs from patient to AP.
Practical tools: The Indolent Systemic Mastocytosis-Symptom Assessment Form (ISM-SAF) is a validated instrument that can be used to determine symptoms and severity.
Barriers and solutions: Why tracking symptoms is hard and how clinics can improve coordination.
AP-focused Toolkit: Resources to help nurse practitioners, PAs, and pharmacists provide patient-centered ISM care.
The Itch Review - ISM Symptom Burden Disconnect Infographic
Listen now! Apple Podcast • Spotify • Amazon Music
The Itch Review, hosted by Dr. Gupta, Kortney, and Dr. Blaiss, explores allergy and immunology studies, breaking down complex research in conversations accessible to clinicians, patients, and caregivers. Each episode provides key insights from journal articles and includes a one-page infographic in the show notes for easy reference.
Timestamps
Our episode reviews a study that asks if patients and providers see indolent systemic mastocytosis (ISM) the same way.
01:30 Why an oncology journal published this ISM survey
04:00 What is indolent systemic mastocytosis?
07:53 What does “symptom burden” mean in ISM
09:54 Study goal: patient vs. AP perspectives
11:21 Survey design and steering committee
17:29 Who took the survey: 53 patients, 50 APs
20:41 Main result: control-perception gap
23:47 Top symptoms reported by patients and APs
27:13 How ISM-SAF tracks daily symptoms
31:30 Common triggers: stress, foods, temperature
34:08 Dr. Blaiss’s key clinical takeaways
34:40 Dr. Gupta’s practice recommendations
