Knowledge About Hereditary Cancer of Women with Family Histories of Breast, Colorectal, or Both Types of Cancer
- First Online:
- Cite this article as:
- Campacci, N., de Lima, J.O., Ramadan, L. et al. J Canc Educ (2015) 30: 167. doi:10.1007/s13187-014-0663-5
- 129 Views
Usually, the mass media do not address hereditary cancer and their risk factors, nor are these topics discussed at the community level. We used an informative guide on cancer and hereditary cancer, followed by a questionnaire on these topics to investigate the relevant knowledge among women at high risk for hereditary breast and/or colorectal cancer from a population-based cohort. The cohort was composed of 81 Brazilian women with positive family histories of breast and/or colorectal cancer. Strauss and Corbin’s Grounded Theory was used for qualitative analysis. The average age of the cohort was 49.9 years old. Three participants (3.9 %) were illiterate, 45 (59.2 %) had attended elementary school, 14 (18.4 %) had secondary school, and 14 (18.4 %) held higher education degrees. A total of 47 (54.3 %) volunteers were unable to fully understand the information provided in the guide because they did not know the meaning of words such as metastasis, malignant, hereditary, sporadic, or oncogenetics. Notwithstanding, the acceptance of the educational tool utilized was satisfactory, and it enhanced the volunteers’ interest in a better understanding of cancer and heredity. Thereby, we concluded that the low knowledge of this important subject and the unawareness about fundamental terms required for the comprehension of this specific type of neoplasm made us believe that the use of the informative guide can provide a great value when used previously to the genetic counseling consultations. Besides, educational tools of easy understanding should be part of everyday clinical practice, from primary to specialized patient care.
KeywordsHereditary cancerCancer educationKnowledge on hereditary cancerGenetic counseling
Few services exist in Brazil that specializes in the diagnosis and prospective monitoring of individuals with hereditary cancer predisposition syndromes (HCPS) and their relatives. These services were created to monitor the high-risk families identified at oncological care centers, most of which are located in teaching hospitals or private institutions. In addition, the cost of assistance is still high at private Brazilian Institutions, thereby limiting its access [1, 2]; furthermore, the teaching hospitals that offer this type of care are exclusively located in large urban centers (mostly state capitals). Thus, remote populations do not have access to this specialized health care .
In addition, due to its significant socioeconomic and sociocultural heterogeneity, the general population ignores the existence and relevance of these services, which also restricts access to specialized diagnosis and HCPS management services .
The significant social and cultural heterogeneity of Brazil, as well as the poor availability of oncogenetic services and their heterogeneous distribution across this large country, results in an overall lack of knowledge regarding hereditary cancer. Besides, discussions of oncogenetics and strategies to prevent hereditary cancer are rare in primary and hospital-based care settings . In addition, the mass media rarely address hereditary cancer and its risk factors, nor are these topics discussed at the community level; thus, they fall into oblivion despite their importance . Finally, a lack of knowledge among health professionals regarding this subject hinders its dissemination across the general population.
A study conducted in an oncogenetic outpatient clinic in the interior of São Paulo, Brazil revealed that people are not acquainted with the potential risk factors of hereditary cancer (e.g., age and family history); furthermore, they believe that this risk is the same across all individuals . Even individuals with cancer are not aware of their increased risk for recurrence compared with the general population. In addition, many health professionals are not aware that age and family history are risk factors for hereditary cancer .
The development and use of educational materials in everyday clinical practice should be encouraged to enhance the interaction between services and the community, so that the latter can play an active role in improving quality of life. When strategies are specifically formulated for a particular community, learning becomes important and coherent and leads to the encouragement of self-care and health promotion. These strategies indicate that health education may minimize risks and facilitate the formulation of preventive strategies centered on oncogenetics.
The present study investigated the knowledge of women with family histories of breast, colorectal, or both types of hereditary cancer, regarding these cancers and their risk factors, using an informative guide distributed before their first genetic counseling appointment.
The current study recruited a convenience sample of 81 women older than 18 years, users of the Barretos Cancer Hospital Prevention System (breast and cervical cancer prevention unit), located at Barretos, São Paulo, Brazil. Those women were from the general community, identified through a 3-question questionnaire, regarding personal and family history of breast and/or colorectal cancers (unpublished results), applied at the Prevention Unit of the Barretos Cancer Hospital. Women should have at least one positive answer to the following questionnaire: (1) personal history of breast and/or colorectal cancer before the age of 50 years old; (2) first or second degree relatives with breast, ovarian or colorectal cancer before the age of 50 years old; (3) three or more first- or second-degree relatives with cancer before the age of 50 years old.
The participants were recruited prior to their first contact with the institutional Oncogenetics Department, to ensure that their knowledge was not influenced by the information provided during genetic counseling. Interviews were organized in four stages: (1) application of the consent form, (2) Mini Mental State Examination (MMSE) application, (3) educational material distribution, and (4) filling of a questionnaire to assess the Questionnaire to Assess the Informative Guide (QA).
Basically, the women who agreed to participate signed an informed consent form, previously approved by the research ethics committee of the Barretos Cancer Hospital. A trained and qualified nurse (article’s first author) conducted all interviews individually.
After the signature of the consent form, the interviewer applied the Mini Mental State Examination test (MMSE test). The MMSE is a simple and quick test that any health professional can apply, which measures patients’ cognitive, spatial-temporal orientation, and memory abilities . The score range was in accordance with literacy: illiterate had a cutoff of 13; individuals with elementary school had a cutoff of 18, and for those individuals that had secondary school the cutoff was 26. If the participant obtained a score lower than expected for their literacy, the next step was not engaged, once it could indicate a cognitive problem for understanding and not lack of knowledge.
Following the application of the MMSE, an educational guide (the “Informative Guide”) was provided to participants; a nurse read the guide aloud to illiterate patients. This guide was composed of relevant topics for genetic counseling, including (1) definition of cancer, (2) differences between hereditary and sporadic cancers, and (3) risk factors for hereditary cancer. In addition, the guide included explicative figures.
Next, the QA questionnaire was applied to investigate patient knowledge concerning hereditary cancer and to evaluate the structure of the educational material (i.e., whether it aided in understanding the hereditary cancer and their risk factors). The QA was self-administered (or not) depending on participant literacy. The QA included the following questions: (1) How well did you understand the Informative Guide? (Answers: I. Fully understood; II. Did not fully understand) (2) Were there one or more words that you did not understand or had never heard before? (Answers: I. Yes; II. No) (3) In the case of affirmative answer in the second question, which fs) was (were) difficult to you? 4. Do the figures in the Informative Guide facilitate its understanding? and (5) If you so desire, add additional information or suggestions regarding to the Informative Guide.
Following the QA, participants spoke with a nurse about health education, regarding cancer and heredity, to have their initial doubts elucidated and to critically examine the significance of prevention.
First, data corresponding to the quantitative variables were described as means and standard deviations (SD), and the qualitative variables were tabulated in frequency tables.
Relationships between the understanding of the Informative Guide, the volunteer educational level, and the presence of difficult/unknown words were assessed using the chi-square (or Fisher’s exact) test. The age and MMSE score comparison between the participants who fully understood the Informative Guide, and those who did not, was performed using Student’s t-test for independent samples. The level of significance was established at 0.05, and quantitative analyses were performed using SPSS 19.0.
The qualitative data were assessed using Strauss and Corbin’s  Grounded Theory methodology, which is composed of thematic coding, followed by categorization based on the data trends.
The sample was composed of 81 women with family histories of cancer that were actively recruited at their routine preventive tests (e.g., mammogram and cervical cancer screenings). All women included had family histories of breast, colorectal, or both types of cancer, as established by a questionnaire about family history of cancer applied to all the women who performed preventive exams at the Barretos Cancer Hospital (data not shown). This appointment was scheduled because their family history suggested HCPS and it was previous to the first genetic counseling appointment.
The average age of the sample was 49.9 years old (SD = 11.3) and ranged from 19 to 73 years. All volunteers resided in the state of São Paulo. Three participants (3.9 %) were illiterate, 45 (59.2 %) had only attended elementary school, 14 (18.4 %) had attended secondary school, and 14 (18.4 %) held higher education degrees.
The average MMSE score was 25.3 (SD = 2.7), ranging from 17 to 30, and it was classified according to the educational level. For those illiterate women, the average MMSE was 22.0, for those with elementary school was 25.3, for those with secondary school and with graduate degree were 26. For those women who did not fully understand the QA, the MMSE score had an average of 25, and ranged from 17 to 28. For those who completely understood the information guide, the average MMSE score was 27 and ranged from 18 to 30.
Did not fully understand
Most difficult/unknown words
Figures helped with understanding?a
Regarding the relation between MMSE scores and the understanding of the Informative Guide, we could see that those individuals reporting fully comprehension regarding the informative material also had higher MMSE scores.
The relationships among understanding the Informative Guide, education level, difficulty with vocabulary, MMSE score, and age
Fully understood, n (%)
Not fully understood, n (%)
Structure of the Informative Guide:
“The written text doesn’t scare us. It’s not alarming. The colors convey serenity, and it’s easy to understand.” (Participant no. 32)
“The brochure layout is very good; it’s easy to understand and self-explanatory.” (Participant no. 09)
“The font size is rather small, and I don’t quite understand [it] yet. (Participant no. 26)
“The information is conveyed using common language. That makes [understanding] it easier.” (Participant no. 35)
“At times, the figures are more important than the written text.” (Participant no. 05)
Stimulation of preventive actions:
“I should perform breast cancer screening tests and so should patients more than 50 years old.” (Participant no. 31)
“The Informative Guide is great because it helps us take better care of ourselves. It also helps [us] take care of the family.” (Participant no. 11)
Concern regarding the understanding of cancer and heredity:
“The Guide is very useful for patients who need to understand cancer better as a whole. I didn’t properly know; now I do.” (Participant no. 15)
“This explanation is very good, and it helps one understand what this disease is that causes us so much doubt and sorrow.” (Participant no. 02)
“I didn’t know it has something to do with the family; no one had ever told me that. However, I had some suspicions: I was sure that my cancer was hereditary.” (Participant no. 71)
“The fact that age is influential was a surprise to me. No one had ever told me that.” (Participant no. 78)
Concern for future generations:
“It will be good mostly for children to understand what might happen to them in the future and what is happening to their relatives right now.” (Participant no. 01)
“By knowing this [information], I might ensure a better future for my children and even my grandchildren.” (Participant no. 80)
It is known that a positive family history of cancer is a very important constitutional risk factor for hereditary cancer. On the other hand, it is also known that people have very little or even no knowledge about their own cancer risk and the risk factors he/she is exposed. The aims of this study were to evaluate the knowledge of a general women population group, at-risk for hereditary cancer, about this type of cancer and to provide an easy access to that knowledge through a hereditary cancer educational guide with simple terms, in order to be able to take better decisions during Genetic Counseling meetings, based on the acquired knowledge.
The present study gave us a first impression of the knowledge that individuals from the general population (i.e., not those who receive care at a high-risk cancer outpatient clinic) at-risk for hereditary cancer have about this condition. As mentioned before, this impression was conveyed using an educational tool called the “Informative Guide” and a questionnaire composed of items concerning its content. In addition, the previous application of the MMSE allowed us to establish whether the difficulties in understanding the guide were due to cognitive problems, volunteer lack of knowledge, or flaws in the Informative Guide itself.
Although 54.3 % of the volunteers reported not having fully understood the information provided in the Guide (mostly due to problems with its vocabulary), the answers provided to QA no. 5 indicated that the “overall idea” of the guide was properly understood.
The words that the volunteers considered difficult are among the everyday vocabulary of physicians. The present study suggests that the use of these words hinders the establishment of a satisfactory doctor-patient relationship and patient understanding of the disease process, including the information conveyed by health professionals, which eventually results in non-adherence to treatments and preventive actions. Two reasons might account for the lack of knowledge regarding the meaning of certain words and the action of oncogenetics as a whole. First, the mass media and the health care professionals do not disseminate the cancer prevention services centered in oncogenetics. Approximately 5 to 10 % of all cancer cases are hereditary, and a history of cancer significantly increases the risk of developing this disease sometime in life, compared with the general population . Thus, the early identification of families at-risk and the formulation of preventive strategies are necessary. However, most Brazilian hospitals do not yet routinely provide this modality of specialized assistance or even refer at-risk patients to centers with this kind of specialty. Therefore, a large fraction of the country’s population is unaware of these services. Second, the significant cultural, economic, and social heterogeneity of Brazil might directly or indirectly influence the citizens’ level of knowledge and understanding of the topics that this study addresses.
The above explanations might influence the population’s lack of knowledge regarding the risk factors for hereditary cancer (e.g., family history and early age at diagnosis). Another study conducted with a different Brazilian sample found that age was not acknowledged as a risk factor for cancer . Even more disturbing, some of the volunteers in that study were not aware of the existence of hereditary cancer. These findings suggest that health professionals must improve their engagement concerning educational strategies and actions, in order to awake a critical reflection in their patients regarding their family histories, and the need to seek specialized care. It is also likely that many health care professionals do not have adequate knowledge about features of hereditary cancer or the importance of genetic risk assessment.
Speaking with a nurse, after the formal interview, was important to many volunteers, because they understood the relevance of reporting their family histories. The lack of assessment of the volunteers’ knowledge on hereditary cancer, after the nurse intervention or even after the genetic counseling session, was a limitation of the present study. However, the current study was designed to assess participant acceptance of the Informative Guide and their level of knowledge about its content, what can modulate our health education program and encourage these patients to seek information concerning cancer and heredity.
We found a significant relationship between understanding the information provided in the guide and volunteer education level (p = 0.021). According to previous studies, low education levels are associated with reduced searches for disease prevention and control actions and increased rates of hospital admissions (particularly in cases of chronic disease) and mortality [12, 13]. Because most of our population only completed an elementary education, health promotion teams should concentrate their efforts on educational actions focused on prevention and oncogenetics. However, high education levels do not necessarily denote proper knowledge. In fact, previous studies have shown that even people with high education levels often have no knowledge or understanding of their medical condition [14–16]. Therefore, we hypothesize that the use of an educational tool that is easy to apply for health professionals, and accessible among patients (regardless of their education level) would enhance their understanding of important terms and notions related to their health condition.
Lubitz et al.  showed that the use of colloquial vocabulary and simple analogies in education materials, as well as illustrations, enhances the understanding of complex subjects and improves the communication between patients and health professionals. These findings match our proposal of a simple and illustrated tool that facilitates the general population’s access to knowledge and provides support materials to professionals engaged in general health education, as well as educational strategies aimed at preventing and controlling cancer in particular.
Kinney et al.  studied the education activities performed among groups of Latinos residing in the USA (including 51 female participants) via a large-scale social project involving community leaders. The results showed that none of the participants had heard of genetic testing, and the various beliefs that the participants manifested suggested various approaches to genetic counseling. These results stressed the need for health professionals to adjust their actions to particular target populations (i.e., to “speak in the same language”). When the human aspects are understood and encompassed using a holistic approach, we are able to elaborate specific education resources for specific populations. These resources might include the use of colloquial language, analogies and figures to facilitate an understanding of the information conveyed, to increase the closeness between health professionals and patients, and to create a safe environment to clarify confusion and provide psychological support .
The improvement in the understanding on hereditary cancer and its risk factors achieved by merely reading an information brochure emphasizes the need to formulate educational strategies to disseminate information to the general population. By increasing the awareness of the risks to which people are exposed, as well as the available prevention and management strategies, our actions should focus on true health promotion rather than the mere treatment of disease.
This study allowed us to evaluate the knowledge about hereditary cancer in an at-risk population for hereditary cancer through the use of a simple educational guide, before the genetic counseling interview. Probably explained by the lack of knowledge of many health care professionals and the media’s carelessness on the subject, it was observed that the majority of individuals did not understand the information contained in the educational guide, mainly due to the presence of words considered by them as difficult.
Furthermore, participants showed, through comments exposed in the open question, prior unawareness about some risk factors for cancer, such as the presence of a positive family history. Lack of comprehension of the language used and lack of knowledge on major hereditary cancer risk factors certainly may interfere with the outcome of genetic counseling interview. Finally, it is worth to point out that, even having individuals that did not completely understand the informative guide, all women engaged in this study evaluated it as positive, emphasizing the need of easy access to cancer related knowledge at all care health levels, be it primary, secondary or tertiary.
The Informative Guide used in the present study awoke in participant an interest in knowledge regarding cancer and its prevention. The interest manifested in participants’ statements emphasizes the relevance of using education materials in healthcare services.
The present study allowed us to detect that (1) the lack of disclosure by health professionals and media about the existence and importance of hereditary cancer and risk factors associated with it, (2) the existence of few specialized services in genetics and cancer, and (3) the restricted access of the general population to that information, negatively impact on the knowledge about hereditary cancer. The real identification of this problem, where women at high risk for breast cancer are unaware of their risk, will help us on the creation of educational guidelines and educative materials to be used on the genetic counseling visits as well as on everyday clinical practice, from primary to specialized patient care.
This study was funded by Barretos Cancer Hospital.