An Exploratory Study on Identification and Analysis of Unmet Information Needs of Korean Women with Breast Cancer : Applying the Concept of Information Needs

Abstract

Due to the development of medical technologies and preventative measures, survival rate of cancer improved greatly during last several decades. However, cancer diagnosis is still depicted as a period of crisis. As cancer is a threatening experience full of uncertainty to patients themselves, it creates a huge gap of knowledge which results in needs of information. However, previous studies on cancer patients have implied that patients are feeling that they lack needed information to deal with their disease during survivorship.

Importance of identifying patients information needs has been emphasized in the context of patient empowerment and patient centeredness by many studies. However, even though information needs are known to have one of the highest unmet needs among patient needs, identifying whether needed information is met or unmet did not have much attention in contrast to assessing information needs. Identification of specific categories or types of unmet information needs and their differences associated with patient or contextual factors were not researched thoroughly.

This study aimed to identify unmet information needs of breast cancer patients as they are reported to constitute one of the largest female cancer survivor groups. Study participants were recruited from a private hospital located in Seoul. Patients who have diagnosed with breast cancer and who were over 30 years old was eligible for this study. Patients were recruited from outpatient cancer treatment and consultation centers, cancer education center, and ob-gyn inpatient clinic.

In order to measure information needs and needs-weighted unmet information needs of patients, a survey tool called Toronto Information Needs Questionnaire-Breast Cancer was used. TINQ-BC included 49 items of information which was classified into 5 domains of information. To examine influencing factors of unmet information needs, Wilsons information model presenting variables that prevents successful achievement of information was applied. Demographic, disease, psychological and cognitive, interpersonal, and environmental factors were analyzed.

Results of analysis on the priority of information needs and needs-weighted unmet needs showed difference. While treatment and physical domain scored high in needs, psychosocial and disease had high scores in unmet needs. Treatment and disease domain ranked the lowest scores in unmet needs. When comparing needs of patients according to their socio-demographic factors, there was no significant differences among classified groups. However, unmet needs showed difference according to the marital status. Among disease factors, both needs and unmet needs showed significant difference according to the time since diagnosis and treatment status.

Furthermore, multiple regression analysis was conducted based on independent variables suggested by Wilsons model. Among patients general characteristics, education level, marital status, and treatment status were identified as significant variables. When these socio-demographic and disease factors were controlled, presence of companion in hospital, which is included in the interpersonal characteristic, was found to be an influencing factor.

Through this study, differences in unmet needs of information according to patient characteristics and influencing variables could be identified. Even though there are several limitations regarding representativeness of sample and the range of information, it still has value for initiating a study specified on unmet information needs of patients for the first time in Korea. Verifying whether needs are met or unmet and how it is related with patient factors will be able to help tailor and customize information provision and improve qualities of supportive and patient centered care for patients.