US study highlights key gaps in mental health support for those with iTTP
Despite specialized care, over 80% of patients report anxiety or depression
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People diagnosed with immune thrombotic thrombocytopenic purpura (TTP) in the U.S. report significant unmet healthcare needs, particularly related to mental health support and relapse prevention, a new survey-based study found.
Despite most patients being followed by specialists and regularly monitored, more than 80% reported anxiety or depression and fear of relapses. Meanwhile, fewer than one-third were referred to a mental health professional, the data showed.
Reported barriers to care included healthcare-related anxiety and “major” financial and health insurance issues, according to the researchers.
“This survey confirms previous findings that relapses are a leading concern for iTTP survivors,” the researchers wrote, noting that “it also confirms the high burden of new [coexisting conditions] … following the diagnosis of TTP.”
The team said this work highlights “challenges that impact access to high-quality care for rare diseases spanning access to care, care coordination, and providers’ knowledge gaps.” More than one-third of respondents said they delayed care “due to issues with payment, including high deductibles, unaffordable copays, and [the] necessity of paying out-of-pocket,” the researchers noted.
The study, “Unmet healthcare needs in immune thrombotic thrombocytopenic purpura survivors,” was published in the journal Research and Practice in Thrombosis and Haemostasis.
TTP is marked by the formation of small blood clots in blood vessels, caused by a deficiency of the ADAMTS13 enzyme, which regulates blood clotting. In immune TTP, the immune system produces antibodies that prevent ADAMTS13 from working correctly.
As many as 40% of patients experience disease relapses
Despite advances in treatment, which have significantly improved disease outcomes, recent studies indicate that as many as 40% of patients may experience relapse, or a new attack after previous remission. Patients may also develop psychiatric, cognitive, and cardiovascular complications.
Now, to learn more about access to relapse-prevention treatment among people with iTTP in the U.S., a quartet led by researchers at Johns Hopkins University School of Medicine in Baltimore conducted a survey-based study.
Their study enrolled 281 iTTP patients with a median age of 47. A vast majority (92%) were women, and nearly three-quarters were white individuals. About two-thirds were married or had a partner and worked full or part time. Slightly more than 80% had some college or higher education.
After their iTTP diagnosis, a significant proportion of patients reported being diagnosed with new coexisting conditions, including depression, among 40%, high blood pressure, experienced by 32%, and headache, for 34%. About one-quarter of patients reported stroke.
More than 80% of respondents reported having new concerns with anxiety or depression related to their TTP diagnosis, and 93% were worried about having a relapse. However, just 30% were referred to a mental health professional, according to the researchers.
Findings show ‘need for trauma-informed care’
When asked about their general health, most participants (82%) said it was worse or much worse after their iTTP diagnosis. A minority — about 5% of respondents — reported slightly better or much better health.
Additionally, more than 83% of the patients indicated they were followed by a TTP specialist, who generally discussed relapse risk and symptoms, and what to do in the event of experiencing a relapse. However, fewer than half reported receiving guidance regarding relapse prevention, the researchers noted.
While most patients received routine blood analysis at least once every three months, in about 20% of cases, blood work occurred once a year or less frequently, per reports.
About 22% of the participants said healthcare anxiety was a barrier to care, which, according to the researchers, is not surprising and highlights “highlighting the need for trauma-informed care among clinicians who care for this patient population.”
Given that the survey respondents were white women with high degree of educational attainment, these findings likely underestimate the degree of barrier to care in populations with more socioeconomic disadvantage.
Other barriers to care included financial and insurance issues, with about 70% of participants slightly to very worried about paying their medical bills, and 35% having delayed medication doses due to financial constraints. Some patients also reported issues with transportation having time off work.
“Given that the survey respondents were white women with high degree of educational attainment, these findings likely underestimate the degree of barrier to care in populations with more socioeconomic disadvantage,” the scientists wrote, noting that the low number of male respondents and those of “disadvantaged socioeconomic status” make these findings “particularly concerning.”
“Future studies are needed to evaluate healthcare access and experiences in more socioeconomically, educationally, and racially diverse populations to adequately capture the full scope of barriers to care among iTTP survivors,” the team concluded.
