Living with Cancer: An Educational Intervention in Cancer Patients Can Improve Knowledge Deficit

Background: A diagnosis of cancer leads to significant information requirements to facilitate health care decision making, understand management options, and health care system navigation. Many patients demonstrate a knowledge deficit that can lead to decreased quality of life and poor health care compliance.  This study sought to evaluate the impact of a patient centered cancer symposium on knowledge level, symptom burden, and desired information in a broad population of cancer patients.

Methods: Surveys were distributed to attendees of the Mayo Clinic “Living with and Surviving Cancer” patient symposium in January 2015. A follow up survey was sent to participants 3 months after the symposium. Surveys included demographic data, questionnaire evaluating disease comprehension, symptom burden, desired information and quality of life.

Results:  

Demographics: 113 patients completed the pre-intervention survey. Average age of participants was 64.7 years. Disease types represented included hematologic malignancies (N=50), specifically multiple myeloma (N=24), lymphoma (N=17), leukemia (N=6), MPN/MDS (n=3), as well as solid tumor malignancies (N=77).  Highest knowledge topics were disease (80%), screening tests (74%), and monitoring tools (72%).  Lowest knowledge topics were financial management (13%), legal issues (13%), and pain management (35%).  

Pre and Post Analysis: Of the 113 initial participants, 79 patients completed the pre- and post-symposium surveys.  In the post-symposium setting significant improvement was noted in understanding of disease (pre 80% vs post 92%), treatment options (pre 60% vs post 76%), nutrition (pre 68% vs post 84%) and legal issues (pre 15% vs post 32%).  

Non-significant knowledge improvement was noted in areas of risk factors and symptoms, screening/monitoring tools, disease side effects, managing stress/fatigue, end of life decision making and health care navigation.

Most patients desired increased understanding regarding disease, screening tests, nutrition, and stress and fatigue management. The level of patient reported desire for information of these topics decreased in the post-symposium setting, statistically significant decrease noted in 4 of 5 topics assessed.

In hematology patients who completed pre and post surveys (N=36), a higher level of baseline knowledge was reported regarding disease understanding (89%), tools monitoring response (83%) and recurrence (75%), symptoms (83%), relapse symptoms (64%) and treatment options (72%).  In this group the decrease in desire for information was less prominent in the post-symposium setting.

Discussion: This data demonstrates improved patient reported understanding on a variety of topics with durable response at 3 months.  A majority of patients reported adequate baseline knowledge of many topics prior to the symposium but also a desire of increased cancer specific information.  Knowledge deficit in cancer care includes disease specific topics, social stressors and health care navigation.  The percentage of participants reporting a high desire for more information remained high but did decrease, suggesting decreased knowledge deficit in the post-symposium setting.   Patient education should strive to be accessible, all-inclusive and reactive to patient needs.

Table 1:  Reported “quite a bit” or “very much” understanding and desired information regarding cancer care
	Pre	Post	P-value
	N=79(%)	N=79(%)
I understand…
How to manage financial considerations of my disease/treatment	39(51)	41(53)	0.85
How to manage my pain	24(34)	23(32)	0.81
Risk factors that can lead to my disease	37 (49)	42 (56)	0.56
How to navigate the health care system	43(55)	47(60)	0.56
How to manage fatigue	38(50)	43(56)	0.54
Process of making end of life decisions	33(47)	41(53)	0.52
Screening tests	60 (76)	63 (81)	0.5
Symptoms associated with relapse	35(45)	42(54)	0.27
Disease symptoms	54(70)	60(76)	0.2
Tools monitoring recurrence	49(62)	56 (72)	0.19
Tools monitoring response	56(71)	63(81)	0.15
How to manage stress	46(60)	56(71)	0.12
Legal issues of my disease	11(15)	24(32)	<0.05
Treatment options	47(60)	60(76)	<0.05
What to eat	49(68)	66(84)	<0.05
My disease	62(80)	71(92)	<0.05
I desire increased understanding…
Of my disease	59(77)	53(70)	0.4
Of managing stress	50(65)	35(51)	<0.05
Regarding  nutrition	64(84)	54(70)	<0.05
Of the screening tests	62(79)	43(57)	<0.05
How to manage fatigue	54(72)	42(54)	<0.05