Development and validation of an instrument to measure informational needs of breast cancer patients in Sri Lanka

Background: Breast cancer is the second most common cancer in the world and the commonest in Sri Lanka. The provision of relevant and accurate information in a social-culturally appropriate manner will lead to proper understanding of the disease and treatment options.  Objectives:The aim of this study was to develop and validate the Sri Lankans’ Informational Needs Assessment Questionnaire of Breast Cancer (SINAQ-BC). Methods: Item generation was through review of literature and using qualitative research techniques among stakeholders.  Thus developed and pretested 69 item SINAQ-BC was administered through interviews to 150 women at least 18 years of age who have been diagnosed as having breast cancer within the period of one year prior to the study and Exploratory Factor Analysis (EFA) was used for further item reduction. Internal consistency reliability and acceptability were also assessed. Results: Exploratory factor analysis determined that 58 items should be retained in the questionnaire and that they be best organized into five subscales lab elled as disease, diagnosis, treatment, physical care and psychosocial care. SINAQ-BC showed good internal consistency reliabilities with Cronbach’s alpha of 0.76 to 0.93.An average 30 minutes (+5 mins) was taken to complete the SINAQ-BC and it did not require any additional explanations demonstrating its acceptability. Conclusion: The SINAQ-BC demonstrated to be a valid and reliable tool to assess informational needs of breast cancer patients.It is recommended to be used to determine informational needs of women with breast cancer and as a tool to assess effectiveness of educational interventions.