Optimizing Patient Education of Oncology Medications: A Patient Perspective

Abstract

The medication information needs of patients with cancer have been primarily studied using quantitative methods and little qualitative research on this topic exists. The purpose of this study was to explore patients' perspectives of optimal oncology medication education provided to patients at the Nova Scotia Health Authority (NSHA). Adult (≥ 18 years) outpatients in medical, gynecological and hematology oncology at NSHA were invited to participate in focus groups, which were audio-recorded, transcribed and analyzed thematically. Three focus groups, including 21 outpatients, were conducted. Four major themes were identified: (1) preparing for what lies ahead consisted of: readiness to receive information, anxiety over the unknown, setting expectations and patients supporting one another; (2) bridging the information gaps was made up of gap in provision of patient education, gap in continuity of patient education, and gap in trustworthy information; (3) understanding the education needs of the patients was comprised of sources of information, education timing and setting, prioritizing information needs, and individuality; and (4) experience within the health care system encompassed: interactions with health care professionals, willingness to ask questions, patient satisfaction, and financial implications. This study identified previously unknown patient education needs and also supported ideas reported in the literature. This data will guide the strategies that will be used to optimize the delivery of oncology medication education at our facility and other health care institutions.

Optimizing patient education of oncology medications: A quantitative analysis of the patient perspective

“…A 28-question questionnaire was developed based on previous research, and the clinical expertise of members of the investigational team. 10 The questionnaire was assessed for face validity and readability by 10 patients who met study inclusion criteria. The questionnaire was also reviewed and discussed with Queen Elizabeth II Health Sciences Centre (QEII HSC) oncology pharmacists.…”

“…This result was surprising as the literature generally shows that oncology patients are not highly satisfied with the education they receive. 3,[9][10][11][12][13][14] Since participants were asked questions about the education they received in the past, followed by questions asking about their education preferences, habituation bias where respondents provide the same answers to questions that are worded in similar ways may be present. This could have played a role in the high degree of similarity seen between the education participants received and their expressed education preferences.…”

“…[4][5][6][7][8] Despite this, cancer patients frequently report that they receive inadequate information and feel that their education needs have not been met. 3,[9][10][11][12][13][14] The current oncology medication education model at the Nova Scotia Health Authority (NSHA) varies by hospital, department and healthcare provider. Typically, patients receive education from their oncologist when they are diagnosed and from nurses while receiving treatment.…”

Educational Program in Complementary and Alternative Medicine for Cancer Self-Help Groups

“…Reliable CAM information, especially on the web, is rare, and accordingly most patients with cancer perceive their level of CAM information as unsatisfactory [22, 23]. Consequently, patients prefer to be informed about CAM by their oncologists or physicians and to share their decision-making processes with them [3, 24], but this is rarely implemented in cancer centers [25, 26]. Patients do not dare to disclose their CAM needs during medical consultation because they fear a negative impact on the doctor-patient relationship or feel not to be taken seriously [23, 24].…”

“…Patients do not dare to disclose their CAM needs during medical consultation because they fear a negative impact on the doctor-patient relationship or feel not to be taken seriously [23, 24]. If they disclose their CAM needs, they often experience that their oncologists are not competent enough in terms of CAM [2, 23, 25, 27]. To summarize, the majority of cancer patients have a need for professional counseling to select reliable and evidence-based CAM information [28].…”