Impact of Primary Chronic Immune Thrombocytopenia and Thrombopoietin Receptor Agonists Treatment Instructions on Daily Living: Results of a Multinational Cross-Sectional Survey.
{"title":"Impact of Primary Chronic Immune Thrombocytopenia and Thrombopoietin Receptor Agonists Treatment Instructions on Daily Living: Results of a Multinational Cross-Sectional Survey.","authors":"Jaap Jan Zwaginga, Srikanth Nagalla, Marie Linden, Marjo Hannele Lindberg, Caroline Kruse, Mervyn Morgan, Cecilie Yssing, Donatella Decise, Milica Putnik, Carly Rich","doi":"10.2147/PPA.S505337","DOIUrl":null,"url":null,"abstract":"<p><strong>Purpose: </strong>Thrombopoietin receptor agonists (TPO-RAs) are second-line treatments for people with immune thrombocytopenia (ITP). A survey was conducted to evaluate the understanding of and adherence to TPO-RA treatment instructions, and to determine the impact of ITP and TPO-RAs on daily living.</p><p><strong>Patients and methods: </strong>Cross-sectional, self-administered, online survey conducted from September 2023 to April 2024. Respondents were aged ≥18 years, diagnosed with primary chronic ITP, and prescribed a TPO-RA in the last 12 months and for ≥3 months.</p><p><strong>Results: </strong>In total, 221 respondents were voluntarily recruited by patient organizations and completed the survey. Over one-third (37%) of respondents were given ≥5 specific instructions on medication use (eltrombopag 58%; avatrombopag 24%; romiplostim 9%). Taking treatment at the same time each day/week was most common. Eltrombopag-treated respondents were given the most instructions about food: timing of medication relative to meals (72%), timing of meals relative to medication (65%), and the restriction (44%) or avoidance (69%) of certain foods. Despite this, nearly one-third (32%) of eltrombopag-treated respondents ate when/what they wanted at times, and 64% would prefer to have a TPO-RA with no food/drink restrictions. Compared to before ITP diagnosis, living with ITP negatively impacted ≥1 daily activity or mental health in 89% of respondents, most commonly travelling (for pleasure [69%]). Approximately one-third (36%) experienced an improvement or no change in ≥1 daily activity or mental health after TPO-RA treatment initiation. Eating habits, sleeping, exercise/sport and mental health were markedly worsened by treatment with a TPO-RA. Avatrombopag and eltrombopag had the highest rates of any reported improvements across daily activities/mental health.</p><p><strong>Conclusion: </strong>This real-world international survey showed that people with ITP may experience a negative impact on their daily activities and mental health from their condition. Treatment with some TPO-RAs may also impair specific activities, likely influenced by administration routes and dietary restrictions.</p>","PeriodicalId":19972,"journal":{"name":"Patient preference and adherence","volume":"19 ","pages":"2445-2458"},"PeriodicalIF":2.0000,"publicationDate":"2025-08-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12358140/pdf/","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Patient preference and adherence","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.2147/PPA.S505337","RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2025/1/1 0:00:00","PubModel":"eCollection","JCR":"Q2","JCRName":"MEDICINE, GENERAL & INTERNAL","Score":null,"Total":0}
引用次数: 0
Abstract
Purpose: Thrombopoietin receptor agonists (TPO-RAs) are second-line treatments for people with immune thrombocytopenia (ITP). A survey was conducted to evaluate the understanding of and adherence to TPO-RA treatment instructions, and to determine the impact of ITP and TPO-RAs on daily living.
Patients and methods: Cross-sectional, self-administered, online survey conducted from September 2023 to April 2024. Respondents were aged ≥18 years, diagnosed with primary chronic ITP, and prescribed a TPO-RA in the last 12 months and for ≥3 months.
Results: In total, 221 respondents were voluntarily recruited by patient organizations and completed the survey. Over one-third (37%) of respondents were given ≥5 specific instructions on medication use (eltrombopag 58%; avatrombopag 24%; romiplostim 9%). Taking treatment at the same time each day/week was most common. Eltrombopag-treated respondents were given the most instructions about food: timing of medication relative to meals (72%), timing of meals relative to medication (65%), and the restriction (44%) or avoidance (69%) of certain foods. Despite this, nearly one-third (32%) of eltrombopag-treated respondents ate when/what they wanted at times, and 64% would prefer to have a TPO-RA with no food/drink restrictions. Compared to before ITP diagnosis, living with ITP negatively impacted ≥1 daily activity or mental health in 89% of respondents, most commonly travelling (for pleasure [69%]). Approximately one-third (36%) experienced an improvement or no change in ≥1 daily activity or mental health after TPO-RA treatment initiation. Eating habits, sleeping, exercise/sport and mental health were markedly worsened by treatment with a TPO-RA. Avatrombopag and eltrombopag had the highest rates of any reported improvements across daily activities/mental health.
Conclusion: This real-world international survey showed that people with ITP may experience a negative impact on their daily activities and mental health from their condition. Treatment with some TPO-RAs may also impair specific activities, likely influenced by administration routes and dietary restrictions.
期刊介绍:
Patient Preference and Adherence is an international, peer reviewed, open access journal that focuses on the growing importance of patient preference and adherence throughout the therapeutic continuum. The journal is characterized by the rapid reporting of reviews, original research, modeling and clinical studies across all therapeutic areas. Patient satisfaction, acceptability, quality of life, compliance, persistence and their role in developing new therapeutic modalities and compounds to optimize clinical outcomes for existing disease states are major areas of interest for the journal.
As of 1st April 2019, Patient Preference and Adherence will no longer consider meta-analyses for publication.