Binary Gender Differences in Quality of Life and Social Supports Among Individuals with Immune Thrombocytopenia (ITP): Data from the ITP Natural History Study Registry

BACKGROUND AND AIMS

Immune thrombocytopenia (ITP) is an autoimmune bleeding condition characterized by low platelet count and a range of bleeding risks. Patients with ITP often report their quality-of-life (QoL) is negatively impacted by fatigue, mental health, and changes in their physical appearance. Research on impact of sex differences on QoL for ITP patients is limited. Studies show the importance of social support systems for patients with rare disease, but variation in social support between male and female ITP patients have not been reported. Using patient inputted registry data, we highlight binary gender differences in social support and ITP disease impact on survey participants overall health related QoL.

METHODS

This is a prospective cohort study of self-reporting adults with ITP registered in the ITP Natural History Study Registry. Data were collected using responses from three surveys within the Registry up to July 3, 2023. Participants were included in the study if they completed all three surveys. Data was analyzed with descriptive statistics and chi-squared tests. Majority of questions asked were based on a Likert scale. Responses were divided into the following categories: ‘Social Supports’, ‘Physical health’, ‘Emotional health’, and overall health related QoL (HRQoL).

RESULTS

Four hundred and sixty participants were included in the study; 358 (78%) were females over 18 years of age and 102 (22%) were males over 18 years of age. Most participants were from the US (382; 83%) and between ages 18-100 years (mean age 47 years).

Social Supports: Women and men reported similar levels of social support. Within the prior seven days, 280 (90%) females and 80 (79%) males reported they had someone to listen to them ‘often’ or ‘always’ (n = 354 (females), 102 males). Two hundred and seventy-nine (78%) females and 77 (72%) males reported they had someone to confide in ‘often’ or ‘always’ (n = 354 (females), 102 males), and 233 (63%) females and 71 (71%) males reported they had someone in their life who understands them ‘often’ or ‘always’ (n = 355 (females), 102 males).

Physical health: Women reported significantly more limitations in activities due to physical health compared to men (85; 23% vs 8; 8%; p = .0004) (n = 358 (females); 102 (males). Women reported higher average fatigue levels (109; 19% vs 15; 14%; p = .0015), and greater frequency of feeling tired compared to men (207; 58% vs 27; 27%; p = .00001).

Emotional health: Women reported significantly higher levels of negative mental health ‘often’ or ‘always’ impacting mood and ability to think compared to men (201; 57% vs 38; 38%; p = .000618) (n = 356 (females); 102 (males), and reported being bothered ‘often’ or ‘always’ by emotional problems such as feeling anxious, depressed, or irritable, more than men (76; 21% vs 12; 12%; p = .032).

Overall HRQoL: Men reported overall HRQoL as either ‘very good’ or ‘excellent’ more than women (179; 50% vs 59; 59%). The difference was not statistically significant.

CONCLUSION

Our study demonstrates adult females and males with ITP have differences in reported HRQoL. Both reported similar levels of social support, such as having someone who understands their problems and can listen. Despite this, females reported higher frequencies of being limited in doing various activities, feeling tired, mental health struggles, and emotional problems. This study offers novel insight into experiences between adult women and men with ITP. Comparisons with non-ITP participants would be helpful to include in future studies to investigate whether sex differences in HRQoL are in fact due to the ITP itself. Future treatment plans may consider which HRQoL factors are impacted most by ITP and could tailor management approaches accordingly.