Impact of primary chronic immune thrombocytopenia and thrombopoietin receptor agonists treatment instructions on daily living: results of a multinational cross-sectional survey

Zwaginga, J.J.; Nagalla, S.; Linden, M.; Lindberg, M.H.; Kruse, C.; Morgan, M.; Yssing, C.; Decise, D.; Putnik, M.; Rich, C.

doi:doi:10.2147/PPA.S505337

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%),...Show morePurpose: 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.Show less

Leiden University Scholarly Publications

View statistics

Documents

In Collections

Impact of primary chronic immune thrombocytopenia and thrombopoietin receptor agonists treatment instructions on daily living: results of a multinational cross-sectional survey