Shared decision making for immune thrombocytopenia (ITP) treatment: Data from the ITP natural history study registry

Abstract Introduction: Immune thrombocytopenia (ITP) is an autoimmune bleeding disorder associated with an increased risk for bleeding. Various treatment strategies exist for ITP; however, it is unknown how frequently patients are involved in shared decision-making (SDM) related to their care. SDM is a cornerstone of modern patient-centered care, emphasizing a collaborative approach among clinicians, patients, and caregivers to make informed decisions about clinical management. Aim: To summarize the extent of SDM use among patients with ITP in the context of treatment decisions. Methods: Prospective data from 123 participants with ITP were collected between October 1, 2024 - May 1, 2025, using the Physician Satisfaction survey in the ITP Natural History Study Registry through the Platelet Disorder Support Association (PDSA). Survey responses from individuals under 18 years of age were provided by a legal caregiver. Data was analyzed with descriptive statistics, chi-squared analysis, and Fischer exact tests. Results: Half of the participants (61/123) indicated that they had been with their ITP-treating provider for more than five years. The median age of survey completion was 45 years (range 10-80); <28 years (11%) to 29-44 (29%) to 45-59 (26%) to 60 or greater (34%). Most individuals lived in the US (77%); other countries included Canada (12%), UK (6%), and Australia (2%). An additional 3% were from other countries. The majority were being treated by a hematologist (85%, 106/123). Of the 123 participants, more than half (63%, 77/123) reported a physician only as their managing ITP provider, 27% (33/123) reported having both a physician and nurse practitioner (NP), 7% (8/123) reported their ITP was managed only by an NP. Only 4% (5/123) reported a different combination of providers managing their ITP, including being seen by a holistic alternative specialist. Participants reported that at least sometimes their provider would be supportive of them trying new supplements, vitamins, and herbal remedies (89%; 68/84). This was more likely for participants who had been with their HCP for >5 years compared to those who had been with their provider for <1 year (p = 0.020). Participants reported their emotional and non-physical symptoms were addressed at least sometimes (76%; 84/110). This was more likely for a > 5-year relationship with the HCP than those with a shorter relationship (p = 0.030). Most patients (89%) were ’always/most times’ happy with the care given. Participants reported that their HCPs are ’always/most times’ attentive (93%), trustworthy (91%), and respectful (96%). They also reported that HCPs are ’always/most times’ taking time to explain (94%), asking about patient opinions/concerns regarding medical treatments (94%), and providing all available treatment options (73%) and their risks (77%). Quality of life is discussed ’always/most times’ by ITP HCPs (74%). Participants reported that PDSA support groups and programs are rarely discussed as options (2%). SDM appeared to be uniformly a priority among ITP HCPs (89%), regardless of the type of HCP, and length of time with their HCP. There was a non-significant trend towards SDM reported the most among those seeing a nurse practitioner (100%, NP only; and 84%, NP + physician) compared to those seeing a physician only (74%). There was also a non-significant trend towards SDM reported to be less common among individuals < 60 years of age compared to those under age 60 years (73%, 33/45 vs 85%, 60/71). Conclusion: SDM empowers individuals with ITP to take charge of their health. While limited by small sample size, we demonstrated that longer provider relationships were linked to more support for supplements and discussion regarding non-physical symptoms. We also highlight that SDM occurs frequently and perhaps can be enhanced by multidisciplinary teams that include both a provider and an NP, allowing for greater visit time. SDM appeared not as high for participants > 60 years, perhaps due to more comorbidities, and thus may have fewer treatment options to choose from, highlighting the need for greater educational resources and support for elderly patients. HCPs should also consider including patient support groups and programs in their treatment discussions to further support patients and their families in managing their condition, as many of these have decision-aid tools available.

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