C4
Identifying patients information needs in upper gastro-intestinal (UGI) cancer
Angus McNair1, Sara Brookes1, Paul Barham2, Christopher Streets2, Richard Krysztopik4, Andrew Hollowood2, Paul Kinnersley3, Jane Blazeby1
1University of Bristol, UK, 2University Hospitals Bristol NHS Foundation Trust, Bristol, UK, 3Cardiff University, UK, 4Royal United Hospital Bath NHS Trust, Bath, UK
Background
Evidence suggests that patients with cancer want as much information as possible, but little is known about the amount and type of detail required throughout treatment for UGI cancer. The aim of this study was to assess the information needs of patients undergoing curative treatment for oesophageal or gastric cancer.
Method
Patients were surveyed with a validated 48-item questionnaire, assessing the importance of different types of information in subscales: information about the cancer (the nature, process and prognosis, 9 items), tests (7 items), treatments (16 items), physical (8 items) and psychosocial effects (8 items). Participants responded to each question with a score ranging from one (not important) to five (extremely important). Scores were generated for each type of information subscale using published algorithms, and are presented as mean scores between 0 and 100. Clinical and socio-demographic variables were recorded and their associations with reported information needs examined.
Results
Some 224 patients were recruited, of whom 136 (103 oesophageal, 33 gastric) responded (61%). Patients felt that information about the cancer itself and about the treatment was of most importance (mean subscale scores 76 and 75 respectively). Of lesser importance was information about physical effects, tests and psychosocial issues, although up to 105 (77%) patients still reported at least one item in these scales as very important or extremely important. Univariable analyses demonstrated that age, social class, educational level, ASA grade and cancer stage were not associated with information needs. Female sex was strongly associated with greater cancer, test, treatment and psychosocial information needs (p<0.02 for all), remaining significantly associated in the multivariable model.
Conclusion
Patients with UGI cancer value information highly, particularly about the disease itself and the details of treatment and side effects.
