Information needs of patients with oral epithelial dysplasia
Objectives
The aim of this study was to determine whether the information needs of patients with oral epithelial dysplasia (OED) were met and to explore what information these patients require.
Study Design
Patients with OED were invited to complete the newly developed Oral Epithelial Dysplasia Informational Needs Questionnaire (ODIN-Q). ODIN-Q is a 35-item tool, which was developed by adopting an existing valid and reliable instrument that explores the information need of patients with potentially malignant disease elsewhere in the body and using input from OED experts. The questions were then formulated and tested for content validity by clinicians (n = 12) and patients (n = 5), with unclear, irrelevant, redundant, and unacceptable items omitted. The final 35-item ODIN-Q includes 2 scales: (1) amount of information already received (too much, enough, not enough, and none); and (2) degree of importance of the information (very, yes, not very, not at all).
Results
Twenty-four patients (11 males, 13 females) with different degrees of OED (mild = 15; moderate = 4; severe = 6) agreed to participate in this pilot study. The analysis showed unmet information needs with regard to the potential role of human papilloma virus (HPV); effects on job/career; community/patient support groups; genetic testing, where applicable; and complementary/alternative treatment options. However, the latter 2 items were considered less important on a degree-of-importance scale. All other items were believed by the participants to be important. The highest importance was given to items relating to screening and early detection, fear of progression to cancer, OED grades and the risk of mouth cancer, and what OED is, respectively. Based on ODIN-Q scores, 8 participants (33%) demonstrated unmet information needs. These patients indicated that one-on-one meetings that included one or more health care professionals and printed materials were the most appropriate means of receiving information to address this unmet need for information. A specialist in the management of OED was the favored professional for such one-on-one meetings.
Conclusions
The newly developed ODIN-Q can help address the needs and preferences concerning tailored and timely provision of information. The psychometric properties of the instrument now will be assessed in a large cohort of patients to confirm its validity and reliability.
Abstract
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Abstract
Introduction
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