PERCEPTIONS OF THALASSEMIA PATIENTS' ON THALASSEMIA AND ITS TREATMENT- A QUALITATIVE EXPLORATION

Author(s)

Ismail wI1, Hassali MA2, Saleem F3, Farooqui M4
1Faculty of Health Sciences University Technology MARA, Penang, Malaysia, 2School of pharmaceutical sciences, Universiti Sains Malaysia, Penang, Malaysia, 3Unversity of Bolochistan, Quetta, Pakistan, 4Qassim University, Qassim, Saudi Arabia

OBJECTIVES: This study aimed to investigate the perception of Thalassemia patients towards Thalassemia and its treatment. METHODS: Qualitative methodology was adapted to collect in-depth information from consented Thalassemia patients who were recruited from the Thalassemia society, Kedah, Malaysia from May to July 2015. After obtaining institutional ethical approval, patients with different types of Thalassemia from the three major ethnic groups in Malaysia namely Malay, Chinese and Indians were approached. Twenty one semi-structured interviews were conducted. All interviews were audiotape, transcribed verbatim and translated into English for thematic content analysis. RESULTS: A total of 3 themes were identified from the interview analysis: 1) belief the causes of thalassemia, 2) self-belief of the effectiveness of conventional therapies for thalassemia treatment, and 3) personal self-belief regarding conventional therapies adverse effect.  A fear of side effects was main reasons given for delay and seeking treatment but the perceptions were reported to change after receiving treatment with success of the treatment when effective management and technology to reduce the side effects had been experienced. Participants also reported that there were fears with the complication of blood transfusion after receiving blood. It’s because transfusion related complications become major source of morbidity. CONCLUSIONS:  This study provides basic information about thalassemia patients’ perceptions towards Thalassemia and its treatment. The findings can help to design effective educational programs to enhance awareness and acceptance of Thalassemia screening at an earlier stage.

Conference/Value in Health Info

2016-09, ISPOR Asia Pacific 2016, Singapore

Value in Health, Vol. 19, No. 7 (November 2016)

Code

PSY16

Topic

Patient-Centered Research

Topic Subcategory

Patient-reported Outcomes & Quality of Life Outcomes

Disease

Systemic Disorders/Conditions

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