Article

Mental Health and Treatment in Patients with Immune Thrombocytopenia (ITP); Data from the Platelet Disorder Support Association (PDSA) Patient Registry

Authors:
  • Platelet Disorder Support Association
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Abstract

Background and Aims Patients with Immune Thrombocytopenia (ITP) may have bleeding because of low platelet counts; many also have reduced quality of life (QoL). Course of therapy can vary by duration and severity of disease but includes steroids and thrombopoietin receptor agonists [TPO-RA]. Both symptoms of ITP and side effects from treatments impact patient QoL, commonly anxiety and fatigue. In 2017, PDSA in collaboration with the National Organization for Rare Diseases launched the ITP Registry to understand patient characteristics, their disease, disease management, and QoL. Here, we describe the QoL for registrants, as it relates to mental health and therapy options. Methods The registry contains five questionnaires covering patient demographics, medical history and diagnostic information, treatments, and QoL in adults and children. Patients are asked to update their responses every six months to document the natural history of ITP. As of February 2019, 538 patients completed in total 1,975 surveys. Not all patients enrolled completed all five surveys; 385 patients completed the survey on treatment, and 310 patients completed the survey on quality of life in adults. Results Registry respondents (n=385) reported use of 16 different treatments to manage their ITP. The most commonly used medications were prednisone (65%), IVIG (42%), and rituximab (33%); 10% of participants reported no use of medication. Most patients reported significant anxiety and fatigue as a result of ITP. 89% of patients (n=276) were fatigued within the past week. 47% of participants reported feeling like they needed help with their anxiety within the past week, 53% of participants reported finding it hard to focus on anything because of anxiety during the same time period. Participant degree of fatigue did not differ based on medication type; similarly, no trend was seen in frequency of fatigue based on treatment type. The number of participants using and not using steroids reported similar rates of fatigue (p=0.674). The same was true comparing on and off TPO agents and fatigue (p=0.682). Conversely, participant anxiety differed significantly based on medication type. Patients who reported anxiety while taking steroids was significantly greater than patients who reported anxiety while using TPO-RAs (p < 0 .00001). QoL reported as poor or fair in 20% of affected patients (80% of participants reported QoL as good, very good, or excellent) did not differ significantly by medication type (steroid use compared to total p=0.889; TPO agent compared to total: p=0.435). Discussion Patients with ITP feel the impact of disease beyond the physical manifestations like bleeding and bruising, extending to the emotional impact of ITP. In part this is due to the uncertainty of symptoms, treatment efficacy and fear of the unknown. This is reflected in the high rates of anxiety experienced by patients while receiving steroids. Patients with newer ITP may have higher levels of anxiety due to their new diagnosis and uncertainty of disease course and are commonly treated with steroids first. Conversely, fatigue is not correlated with treatment type. Surprisingly, despite high levels of fatigue and anxiety, 4/5 respondents still report at least good quality of life. This could be in part because patients become acclimated to living with their disease, or a belief that their ITP could manifest more severely. Additionally, treatments of ITP which increase the platelet count (not confirmed here) may improve overall QoL even though fatigue and anxiety do not disappear or may even be increased as shown by the more than 4/5 respondents who report these. Further studies may clarify the complex nature of QoL, anxiety and fatigue in ITP. Disclosures Kruse: Novartis: Consultancy; UCB: Honoraria; Amgen: Research Funding; Argenx: Research Funding; Dova: Research Funding; Novartis: Research Funding; Momenta: Research Funding; Principia: Research Funding; Octapharma: Research Funding; CSL Behring: Research Funding; UCB: Research Funding. Bussel:GSK: Honoraria, Membership on an entity's Board of Directors or advisory committees; Tranquil: Honoraria, Membership on an entity's Board of Directors or advisory committees; Rigel: Consultancy, Honoraria, Membership on an entity's Board of Directors or advisory committees; RallyBio: Consultancy, Honoraria, Membership on an entity's Board of Directors or advisory committees; Kezar Life Sciences: Consultancy, Membership on an entity's Board of Directors or advisory committees; Physician Education Resource: Speakers Bureau; 3S Bio: Speakers Bureau; Regeneron: Consultancy, Honoraria, Membership on an entity's Board of Directors or advisory committees; argenx: Consultancy, Honoraria, Membership on an entity's Board of Directors or advisory committees; Dova Pharmaceuticals: Consultancy, Membership on an entity's Board of Directors or advisory committees; UCB: Consultancy, Honoraria, Membership on an entity's Board of Directors or advisory committees; Amgen: Consultancy, Honoraria, Membership on an entity's Board of Directors or advisory committees; Momenta Pharmaceuticals: Consultancy, Honoraria, Membership on an entity's Board of Directors or advisory committees; Novartis: Consultancy, Honoraria, Membership on an entity's Board of Directors or advisory committees, Speakers Bureau.

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... This could be partially attributed to the fact that the average disease duration from the time of diagnosis to survey completion was 5.3 years, implying that most patients evaluated in this analysis had chronic ITP. It is often speculated that patients with newly diagnosed ITP have higher anxiety levels due to the uncertainty associated with their disease course [23]. ...
Article
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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.
... It is often speculated that patients with newly diagnosed ITP have higher anxiety levels due to the uncertainty associated with their disease course. [22] The assessment and improvement of HRQoL parameters generally require a multidimensional approach and should be tailored for the patient, while taking into account the healthcare system, cultural, and economic backgrounds of individual countries. [23] In this subgroup analysis among patients from India, the ILQI questionnaire scores showed that daily life was severely impacted by ITP, with more than half the patients reporting that their work life, education, concentration levels, social lives, and energy levels were negatively affected. ...
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Background: 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). 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 (15/19;79%), anxiety surrounding unstable platelet counts (17/28;61%), and fatigue (27/46;59%); these were also the key symptoms they wanted to be resolved. In contrast, physicians perceived petechiae (19/21;90%), bleeding-from-gums [(8/21;86%), and purpura (16/21;76%) as the most common symptoms. While the important treatment goals for patients were healthy blood counts (42/65;65%), improved QoL (35/65;54%), and prevention of worsening of ITP (33/65;51%), physicians’ goals were reduction in spontaneous bleeding (17/21;81%]), better QoL (14/21;67%]), and symptom improvement (9/21;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. Educating physicians on aspects of ITP beyond bleeding, and highlighting patients’ under-recognized symptoms/needs through support-systems may bring about a meaningful change.
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