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How do patients and physicians perceive immune thrombocytopenia (ITP) as a disease? Results from Indian analysis of ITP World Impact Survey (I-WISh)
PURPOSE: Immune thrombocytopenia (ITP) is primarily considered a bleeding disorder; its impact on patients’ health-related quality of life (HRQoL) is under-recognized. We aimed to assess how aligned patient and physician perceptions are regarding ITP-associated symptoms, HRQoL, and disease managemen...
Autores principales: | , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Springer International Publishing
2022
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8933602/ https://www.ncbi.nlm.nih.gov/pubmed/35303181 http://dx.doi.org/10.1186/s41687-022-00429-y |
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author | Chakrabarti, Prantar George, Biju Shanmukhaiah, Chandrakala Sharma, Lalit Mohan Udupi, Shashank Ghanima, Waleed |
author_facet | Chakrabarti, Prantar George, Biju Shanmukhaiah, Chandrakala Sharma, Lalit Mohan Udupi, Shashank Ghanima, Waleed |
author_sort | Chakrabarti, Prantar |
collection | PubMed |
description | PURPOSE: Immune thrombocytopenia (ITP) is primarily considered a bleeding disorder; its impact on patients’ health-related quality of life (HRQoL) is under-recognized. We aimed to assess how aligned patient and physician perceptions are regarding ITP-associated symptoms, HRQoL, and disease management in India. METHODS: Patients and physicians (hematologists/hemato-oncologists) from India who participated in the global ITP World Impact Survey (I-WISh) were included in this subgroup analysis (survey). Physicians were recruited via a local, third party recruiter in India. In addition to completing a survey themselves, physicians were asked to invite consulting patients on a consecutive basis to complete a survey. All surveys were completely independently by the respondents online in English. The respondents took 30 min to complete the questionnaire. Patients also completed the newly developed ITP Life Quality Index (ILQI) that included 10 questions on the impact of ITP on the following: work or studies, time taken off work or education, ability to concentrate, social life, sex life, energy levels, ability to undertake daily tasks, ability to provide support, hobbies, and capacity to exercise. RESULTS: A total of 65 patients and 21 physicians were included in this study. Average disease duration from diagnosis-to-survey-completion was 5.3 years. The most severe symptoms reported by patients at diagnosis were menorrhagia (15 of 19 patients [79%]), anxiety surrounding unstable platelet counts (17 of 28 patients [61%]), and fatigue (27 of 46 patients [59%]); these were also the key symptoms they wanted to be resolved. In contrast, physicians perceived petechiae (19 of 21 patients [90%]), bleeding-from-gums (8 of 21 patients [86%]), and purpura (16 of 21 patients [76%]) as the most common symptoms. While the important treatment goals for patients were healthy blood counts (42 of 65 patients [65%]), improved QoL (35 of 65 patients [54%]), and prevention of worsening of ITP (33 of 65 patients [51%]), physicians’ goals were reduction in spontaneous bleeding (17 of 21 physicians [81%]), better QoL (14 of 21 physicians [67%]), and symptom improvement (9 of 21 physicians [43%]). More than half the patients reported that ITP affected their work life/studies, social life, and energy levels, thereby negatively impacting their QoL. Patients were almost entirely dependent on family and friends for support. CONCLUSIONS: This survey highlights the substantial discrepancy in patients’ and physicians’ perceptions regarding ITP-associated symptoms and treatment goals in India. Based on the identified gaps, educating physicians on aspects of ITP beyond bleeding, and highlighting patients’ under-recognized symptoms/needs through support-systems should be prioritized in the future. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s41687-022-00429-y. |
format | Online Article Text |
id | pubmed-8933602 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2022 |
publisher | Springer International Publishing |
record_format | MEDLINE/PubMed |
spelling | pubmed-89336022022-04-01 How do patients and physicians perceive immune thrombocytopenia (ITP) as a disease? Results from Indian analysis of ITP World Impact Survey (I-WISh) Chakrabarti, Prantar George, Biju Shanmukhaiah, Chandrakala Sharma, Lalit Mohan Udupi, Shashank Ghanima, Waleed J Patient Rep Outcomes Research PURPOSE: Immune thrombocytopenia (ITP) is primarily considered a bleeding disorder; its impact on patients’ health-related quality of life (HRQoL) is under-recognized. We aimed to assess how aligned patient and physician perceptions are regarding ITP-associated symptoms, HRQoL, and disease management in India. METHODS: Patients and physicians (hematologists/hemato-oncologists) from India who participated in the global ITP World Impact Survey (I-WISh) were included in this subgroup analysis (survey). Physicians were recruited via a local, third party recruiter in India. In addition to completing a survey themselves, physicians were asked to invite consulting patients on a consecutive basis to complete a survey. All surveys were completely independently by the respondents online in English. The respondents took 30 min to complete the questionnaire. Patients also completed the newly developed ITP Life Quality Index (ILQI) that included 10 questions on the impact of ITP on the following: work or studies, time taken off work or education, ability to concentrate, social life, sex life, energy levels, ability to undertake daily tasks, ability to provide support, hobbies, and capacity to exercise. RESULTS: A total of 65 patients and 21 physicians were included in this study. Average disease duration from diagnosis-to-survey-completion was 5.3 years. The most severe symptoms reported by patients at diagnosis were menorrhagia (15 of 19 patients [79%]), anxiety surrounding unstable platelet counts (17 of 28 patients [61%]), and fatigue (27 of 46 patients [59%]); these were also the key symptoms they wanted to be resolved. In contrast, physicians perceived petechiae (19 of 21 patients [90%]), bleeding-from-gums (8 of 21 patients [86%]), and purpura (16 of 21 patients [76%]) as the most common symptoms. While the important treatment goals for patients were healthy blood counts (42 of 65 patients [65%]), improved QoL (35 of 65 patients [54%]), and prevention of worsening of ITP (33 of 65 patients [51%]), physicians’ goals were reduction in spontaneous bleeding (17 of 21 physicians [81%]), better QoL (14 of 21 physicians [67%]), and symptom improvement (9 of 21 physicians [43%]). More than half the patients reported that ITP affected their work life/studies, social life, and energy levels, thereby negatively impacting their QoL. Patients were almost entirely dependent on family and friends for support. CONCLUSIONS: This survey highlights the substantial discrepancy in patients’ and physicians’ perceptions regarding ITP-associated symptoms and treatment goals in India. Based on the identified gaps, educating physicians on aspects of ITP beyond bleeding, and highlighting patients’ under-recognized symptoms/needs through support-systems should be prioritized in the future. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s41687-022-00429-y. Springer International Publishing 2022-03-18 /pmc/articles/PMC8933602/ /pubmed/35303181 http://dx.doi.org/10.1186/s41687-022-00429-y Text en © The Author(s) 2022 https://creativecommons.org/licenses/by/4.0/Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) . |
spellingShingle | Research Chakrabarti, Prantar George, Biju Shanmukhaiah, Chandrakala Sharma, Lalit Mohan Udupi, Shashank Ghanima, Waleed How do patients and physicians perceive immune thrombocytopenia (ITP) as a disease? Results from Indian analysis of ITP World Impact Survey (I-WISh) |
title | How do patients and physicians perceive immune thrombocytopenia (ITP) as a disease? Results from Indian analysis of ITP World Impact Survey (I-WISh) |
title_full | How do patients and physicians perceive immune thrombocytopenia (ITP) as a disease? Results from Indian analysis of ITP World Impact Survey (I-WISh) |
title_fullStr | How do patients and physicians perceive immune thrombocytopenia (ITP) as a disease? Results from Indian analysis of ITP World Impact Survey (I-WISh) |
title_full_unstemmed | How do patients and physicians perceive immune thrombocytopenia (ITP) as a disease? Results from Indian analysis of ITP World Impact Survey (I-WISh) |
title_short | How do patients and physicians perceive immune thrombocytopenia (ITP) as a disease? Results from Indian analysis of ITP World Impact Survey (I-WISh) |
title_sort | how do patients and physicians perceive immune thrombocytopenia (itp) as a disease? results from indian analysis of itp world impact survey (i-wish) |
topic | Research |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8933602/ https://www.ncbi.nlm.nih.gov/pubmed/35303181 http://dx.doi.org/10.1186/s41687-022-00429-y |
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