# Life after Recovery in Adult Thrombotic Thrombocytopenic Purpura (TTP): Let's Hear It from the Survivors

> **NIH NIH K01** · UNIVERSITY OF OKLAHOMA HLTH SCIENCES CTR · 2020 · $132,410

## Abstract

PROJECT SUMMARY/ABSTRACT. Acquired autoimmune thrombotic thrombocytopenic purpura (TTP) is a
rare disorder characterized by acute episodes of systemic microvascular thrombosis. TTP is more common in
women, occurs during the child-bearing years, and rarely occurs in children <18 years of age. With early
recognition and plasma exchange treatment, 78-90% of patients will survive their acute episode. Long-term
adverse health outcomes in adults following recovery from TTP are under recognized. We have documented in
the Oklahoma TTP Registry that survivors have an increased prevalence of major depression, decreased
health-related quality of life, minor cognitive impairment, and a decreased life expectancy compared to the
general population. However, current guidelines on the management of TTP focus on the long-term risk for
relapse with no mention of patient-reported outcomes (PROs).
We propose to utilize rigorous qualitative methods to determine from survivors the most important long-term
outcomes that impact their daily routines during remission (Aim 1), which fills an existing gap by identifying
specific PROMIS® PROs that should be evaluated following recovery. Currently, there are no published studies
on PROMIS® instruments or the preferred mode of administration in TTP patients; therefore, we will determine
the feasibility of administering PROMIS® instruments online in a TTP population, including recruitment of TTP
patients from the United States Thrombotic Microangiopathy Consortium (Aim 2). Understanding the TTP
patient preference will assist in integrating these PROMIS® instruments into routine clinical care. Finally,
although it is becoming more common to integrate PRO assessments in routine clinical care, a barrier to
successful integration is that clinicians are often unsure how to interpret PRO results in a clinically-meaningful
way. Clinical severity cut-points such as `mild', `moderate' or `severe' may be more easily understood in a
clinical setting than a comparison to a normative population. We propose to create clinical threshold levels for
PROMIS® scores (Aim 3) which fills an existing gap by reducing an implementation barrier for hematologists
using PROMIS® assessments to manage long-term outcomes. The rationale for the proposed study is that it is
expected to yield important new insights into impairments during clinical remission of TTP and extend clinical
interpretability of PROMIS® measures to include a new disease area (TTP).
Dr. Terrell is an Assistant Professor of Epidemiology at the University of Oklahoma Health Sciences Center.
Her additional training proposed under the current career development plan will enhance her ability to become
an independent NIH-funded clinical epidemiologist with training and experience in qualitative methodology and
the theory and application of the measurement science of PROs.

## Key facts

- **NIH application ID:** 9898431
- **Project number:** 5K01HL135466-04
- **Recipient organization:** UNIVERSITY OF OKLAHOMA HLTH SCIENCES CTR
- **Principal Investigator:** Deirdra R Terrell
- **Activity code:** K01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2020
- **Award amount:** $132,410
- **Award type:** 5
- **Project period:** 2017-04-18 → 2022-03-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/9898431

## Citation

> US National Institutes of Health, RePORTER application 9898431, Life after Recovery in Adult Thrombotic Thrombocytopenic Purpura (TTP): Let's Hear It from the Survivors (5K01HL135466-04). Retrieved via AI Analytics 2026-05-23 from https://api.ai-analytics.org/grant/nih/9898431. Licensed CC0.

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