Informational needs of gynecologic cancer survivors

Abstract

Objectives: In preparation for the launch of a gynecologic oncology survivorship program, this study looked at the informational needs of women with gynecologic cancers. Although studies have touched on some of these needs, no published literature has investigated the comprehensive informational needs of gynecologic oncology patients within all sites of gynecologic cancers.

Methods: A needs assessment, consisting of a self-administered questionnaire, was conducted at an ambulatory gynecologic oncology clinic from August 2010 to March 2011. This study investigated the informational needs of patients, including the importance of information, the amount desired, and the preferred mode of delivery. Informational needs were grouped into six domains: medical, practical, physical, emotional, social, and spiritual.

Results: 185 surveys were analyzed and the majority of the respondents were Caucasian (77%) and over the age of 50 (66%). Forty-nine percent of respondents were diagnosed with ovarian cancer, and there was an even distribution between newly diagnosed patients (38%), those in long-term follow-up (27%), and those with recurrent disease (37%). Overall, respondents placed more importance on receiving medical information (P<0.01). The three preferred education modalities were; pamphlets, one-on-one discussions with health care professionals and websites. Age, education, and disease site were associated with differing informational needs.

Conclusions: This study has highlighted the most important informational needs of patients with gynecologic malignancies in our patient population. This information may guide the development of clinical survivorship programs and educational resources for patients in the future.