Abstract
Background: Patients diagnosed with cancer experience a significant influx of health care information while continuing to demonstrate understanding deficit regarding their disease and health. This knowledge deficit can negatively impact a patient’s acute and long term health care experience. By identifying patient information deficits and needs, health care providers may be better able to provide targeted education to patients and families.
Aims: The aim of this study is to evaluate the impact of a patient centered cancer symposium on knowledge level, reported symptom burden, and desired information from a broad population of cancer patients.
Methods: Surveys were distributed to the attendees of the third annual Mayo Clinic “Living with Cancer” patient symposium in January 2014. While 700 individuals registered for the event, only individuals with a past or present cancer diagnosis were asked to participate. Surveys included demographic data in addition to a questionnaire evaluating disease comprehension, symptom burden, desired information and desired role in the health care decision making process.
Results: 75 patients completed the pre-intervention and post-intervention survey. There were slightly more female participants (60.2%). Disease types included 40% hematologic malignancies, 27% breast cancer, 20% prostate cancer and 13% other. The majority of patients were greater than 3 years from cancer diagnosis (62%).
Baseline Patient Understanding:
Most respondents reported understanding their disease quite a bit (54%) or very much (30%). Respondents reported the majority of their knowledge regarding their disease came from their oncologist (56%), oncology nurse (24%), previous symposiums (22%), or the internet (15%).
Most respondents reported “quite a bit” or greater comprehension of screening tests (75%), monitoring disease response to treatment (70%), monitoring disease recurrence (70%), treatment options (67%) and treatment side effects (73%). There was no consensus among participants regarding understanding or limiting risk factors, symptoms associated with disease relapse, fatigue and pain management, navigating the health care system, financial considerations, or confidence in their primary care physician’s involvement in their cancer or post-cancer care.
A large proportion of attendees reported “quite a bit” or greater desire for increased information/understanding regarding their disease (83%), risk factors (83%), nutrition (80%), screening tests (69%), and management of fatigue (69%) and stress (68%).
Knowledge Improvement Durable at 3 months:
There was improvement in 18 of 20 areas of self-reported knowledge. This was noted in increased percentage of respondents reporting “quite a bit” or greater comprehension, especially in areas of disease risk factors(55%pre vs 63%post), disease side effects(55%pre vs 63%post), and health care navigation(53%pre vs 69%post).
The reported desire for “quite a bit” or more increased understanding on various topics did decrease post symposium regarding their disease(87.9% pre vs 68.9%post), disease risk factors(86.3%pre vs 64.0%post), screening tests(74.7%pre vs 63.3%post), and nutrition(78.4%pre vs 64.9%post)(all p<0.05). There was no significant decrease in the desire for increased understanding managing stress and fatigue.
Summary: Demonstrated in this study, individuals choosing to attend a patient-centered cancer symposium, seek to improve an already solid knowledge base. Study participants indicate a significant desire for increased information on all topics, even those with sufficient level of knowledge reported. This indicates that some cancer patients’ thirst for knowledge is difficult to quench, and may benefit from recurrent education opportunities. The improvement in almost all topics assessed indicates a patient centered symposium is an effective method to provide information to patients regarding the spectrum of cancer health management.
No relevant conflicts of interest to declare.
Author notes
Asterisk with author names denotes non-ASH members.
