Illness Perceptions and Heath Related Quality of Life in Patients with Primary Immune Thrombocytopenia
Authors: Lekarakou Christina E , Bertsias Antonios , Diamantopoulos Panagiotis T , Mantzourani Marina , Bouchla Anthi , Chatzileontiadou Sofia , Kanellou Peggy , Gakopoulos Athanasios , Katrinakis George , Psyllaki Maria , Pappa Vasiliki , Papaioannou Maria , Liapi Dimitra , Delimpasi Sosana , Papadaki Helen A , Koulierakis George , Pontikoglou Charalampos G 
Published: December 2024

Introduction
Immune thrombocytopenia (ITP) is a rare disease characterized by low platelet counts and increased risk of bleeding, often resulting in reduced health-related quality of life (HRQoL). The term “illness perceptions” (IP) encompasses the patients' beliefs about the various components of their illness, including its identity, consequences, timeline, concern, coherence, emotional representations, causes, personal and treatment control. IP has been demonstrated to exert an influence on HRQoL in a range of disorders. This study aimed to explore, for the first time to our knowledge, the IP of ITP patients and their association with HRQoL.
Methods
A cross-sectional study was conducted from October 2022 to March 2024 among adult patients with persistent or chronic ITP attending the Hematology Outpatients Clinic at six tertiary hospitals throughout Greece. The Brief Illness Perception Questionnaire (B-IPQ) and the EuroQoL (EQ-5D-5L, EQ-VAS), were used to assess IP and HRQoL, respectively. The data pertaining to patients' characteristics, demographics, clinical information and platelet counts were subjected to descriptive statistical analysis. The relationship between HRQoL and IP was examined using Pearson's correlation coefficient. Correlations between 0.4 and 0.6 were deemed to be moderate, while those below 0.4 were considered weak. A correlation coefficient between 0.6 and 0.8 indicates a strong association. The level of statistical significance was determined by a p-value&lt; 0.05.
Results
The study included sixty patients diagnosed with primary ITP. The median age of the patients was 59 years (range: 20-92) and the male to female ratio was 0.76. The majority of patients had chronic ITP (88.3%) and did not experience active bleeding (83.3%). Τhe median platelet count was 121×10^9/L (interquartile range: 80-204x10^9/L). The majority of patients (78.3%) received treatment with Eltrombopag or Romiplostim. The B-IPQ total score indicated that the overall perceived threat from the disease was slightly low. Regarding IP, the patients demonstrated a good understanding of their condition and did not report significant symptoms of ITP. The participants expressed a strong belief that the administered treatment could control their disease and demonstrated a moderate positive perception of their own capacity to manage their illness. On the other hand, they lacked a clear perception regarding the extent to which ITP affected their lives and were convinced that their illness would persist for an extended duration. Patients were concerned about their illness and demonstrated a moderate belief that ITP caused negative emotions, including fear, anger and anxiety. The majority of patients (62.71%) lacked knowledge regarding the cause of ITP. Some attributed the cause, at least partly, to stress/anxiety (47.46%), sadness (20.34%), fatigue (16.95%) or SARS-CoV-2 vaccine (11.86%). The EQ-5D-5L and the EQ-VAS scores indicated that the patients' HRQoL ranged from moderate to satisfactory. Weak negative statistical correlations were identified between the EQ-5D-5L Index total score and the time-line (r=-0.261, p=0.044), the illness consequences (r=-0.289, p=0.025), and the emotional representations (r=-0.312, p=0.015). Furthermore, a moderate negative statistical correlation was observed between the EQ-5D-5L Index total score and the IP total score (r=-0.415, p=0.001). Conversely, a weak positive statistical correlation was identified between the EQ-5D-5L Index total score and personal control over the disease (r=0.377, p=0.003). A weak negative statistical correlation was identified between the IP total score and the EQ-VAS scale (r=-0.271, p=0.036).
Conclusion
These preliminary findings suggest that IP may be linked to HRQoL in patients with ITP. Further investigation of these relationships is necessary to gain a deeper understanding of IP, its potential impact on patient outcomes, and the development of interventions aimed at improving patient HRQoL.