Informational needs of gastrointestinal oncology patients

Abstract

Objectives In response to the dearth of consumer health information for patients with gastrointestinal cancers, this study examined the informational needs of these patients to build a plan for future resource development. Although studies have examined informational needs of some such cancers, no published literature has investigated the comprehensive informational needs across all sites of gastrointestinal cancer. Methods A cross‐sectional needs assessment comprising a self‐administered questionnaire was conducted at an ambulatory gastrointestinal oncology clinic in Toronto, Canada. Patient informational needs were measured, including importance of information, amount desired and preferred mode of delivery. Informational needs were grouped into six domains: medical, practical, physical, emotional, social and spiritual. Results Eighty‐two surveys were analysed. The majority of the respondents were male (53.8%), over the age of 50 (77.8%), and born outside of Canada (51.9%). While many did not speak English as a child (46.3%), and do not speak English at home (22.2%), nearly all indicated comfort with receiving health information in English (97.5%). The majority of respondents were college educated (79.3%) and married (73%). Multiple cancer types were reported; the most common being colorectal (39%), followed by pancreatic (12%) and cancers of the gallbladder or bile duct (12%). Overall, respondents placed highest importance on medical information (P < 0.001). Preferred education modalities were pamphlets, websites and one‐on‐one discussions with health‐care professionals. Conclusions This study highlights the principal informational needs of patients with gastrointestinal malignancies, along with preferred modality for information delivery. This information will guide the development of educational resources for future patients.

The Prevalence and Nature of Supportive Care Needs in Lung Cancer Patients

“…Participants completed a survey package that included the Supportive Care Needs Survey Short Form 34 (scns-SF34) 19 , an in-house developed information needs survey (8 items) 20,21 , the MD Anderson Symptom Inventory (mdasi) 22 , an adls questionnaire 23 , and a quality-of-life subscale from the European Organisation for Research and Treatment of Cancer's qlq-C30 questionnaire 24 . Surveys were completed by participants in the outpatient lung cancer clinic.…”

“…A modified instrument originally designed by content experts in Patient Education and Survivorship at Princess Margaret Cancer Centre for previous work in other cancer sites was therefore used 20,21 . That 8-item tool was designed specifically to assess patient preferences for various potential information needs (for example, drug coverage, legal issues, sick leave from work, symptom management, etc.).…”

Internet Information for Patients on Cancer Diets - an Analysis of German Websites

“…Cancer patients and caregivers increasingly demand information about the disease, prognosis, symptoms, therapies, and treatments [1,2,3,4,5]. During the course of the disease, patients first request information about the illness itself and about new developments and cancer clinics, and then ask for information about symptom control, how to cope with potential future symptoms, and treatment options such as complementary and alternative medicine (CAM) [5,6,7].…”

“…While there are many sources through which patients can get information, the personal contact with a physician is usually the preferred primary source [1,3,4,11]. However, even though a personal relationship with an oncologist is favored, poor patient-doctor relationships caused by a lack of empathy and time on the side of the healthcare providers as well as the use of medical language oftentimes hinder a successful exchange of information and may lead to dissatisfaction on the side of the patient [10,11,12,13].…”

“…Nonetheless, patients want to take on an active and equal role in making joint healthcare decisions with their physicians, for which basic knowledge is fundamental [1,4,7,14,15]. In addition to conventional treatments, patients also seek information about alternative therapies [16,17].…”