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The Breast 28 (2016) 156e160

Contents lists available at ScienceDirect

The Breast
journal homepage: www.elsevier.com/brst

Original article

Breast cancer patients' information needs and information-seeking


behavior in a developing country
Khalil Kimiafar a, Masoumeh Sarbaz a, *, Soudabeh Shahid Sales b, Mojtaba Esmaeili c,
Zohre Javame Ghazvini a
a
Department of Medical Records and Health Information Technology, School of Paramedical Sciences, Mashhad University of Medical Sciences, Mashhad,
Iran
b
Cancer Research Center, Mashhad University of Medical Sciences, Mashhad, Iran
c
Reza Radiotherapy Oncology Charity Center, Mashhad, Iran

a r t i c l e i n f o a b s t r a c t

Article history: Breast cancer is the most common cancer in women both around the world and in Iran. By studying the
Received 13 February 2016 information needs of patients with breast cancer, the quality of the information provided for them can be
Received in revised form improved. This study investigated the information needs of breast cancer patients and their information-
29 April 2016
seeking behavior.
Accepted 26 May 2016
Methods: This cross-sectional study was conducted from March to June, 2015. The research population
was 120 women diagnosed with breast cancer and informed about their disease who referred to
oncology outpatient clinics at a specialized cancer hospital and a radiotherapy oncology center in
Keywords:
Information seeking behavior
Mashhad (the only specialized cancer centers in eastern and northeastern Iran).
Breast cancer Results: Average participant age was 46.2 years (SD ¼ 9.9). Eighty-five percent of patients desired more
Information literacy information about their disease. Results showed that the attending physician (mean ¼ 3.76), television
health channel (mean ¼ 3.30), and other patients (mean ¼ 3.06) were the most popular sources of in-
formation for breast cancer patients. Patients stated their strongest reasons for using information sources
as achieving a better understanding of the disease (mean ¼ 3.59), less anxiety (mean ¼ 3.92), and cu-
riosity to learn more about the disease (mean ¼ 3.66), sequentially. Results further indicated that disease
management (mean ¼ 4.18) and nutritional options during treatment (mean ¼ 4.14) were the most often
mentioned areas in which patients required information, while knowing the progress rate of their dis-
ease was the least (mean ¼ 3.73).
Conclusion: It seems necessary to have a good, organized plan to provide breast cancer patients with
information and increase their information literacy, one of their undeniable rights.
© 2016 Elsevier Ltd. All rights reserved.

Introduction growth in the rate of breast cancer cases [4]. According to a recent
study in Iran, 6160 cases of breast cancer are diagnosed annually,
Among all cancers, breast cancer causes a large number of and around 1063 of them result in death [3]. The annual rate of new
mortalities and is one of the first ten causes of death in women breast cancer cases in Iran is predicted to reach 15,000 by the year
around the world [1]. It is the most common cancer in women both 2030 [4].
around the world and in Iran [2], accounting for 24.2% of all cancer In recent decades, more attention has been given to having
cases in Iran [3]. Asian countries such as Iran have reported a recent cancer patients actively participate in their care process. Different
patients have different treatment priorities and request different
amounts and types of information about their disease [5]. The
* Corresponding author. Department of Medical Records and Health Information participation of patients in making decisions about their disease
Technology, School of Paramedical Sciences, Pardis Daneshgah, Azadi Square, depends on their being provided with enough suitable information
Mashhad, Iran. Tel.: þ98 51 38846725; fax: þ98 51 38846728. [6].
E-mail addresses: Kimiafarkh@mums.ac.ir (K. Kimiafar), Sarbazm@mums.ac.ir Patients with breast cancer have many information needs [7].
(M. Sarbaz), shahidsalesS@mums.ac.ir (S. Shahid Sales), esmaeilimojtaba@yahoo.
Most patients have no clear concept of cancer at the time of
com (M. Esmaeili), javamez2@mums.ac.ir (Z. Javame Ghazvini).

http://dx.doi.org/10.1016/j.breast.2016.05.011
0960-9776/© 2016 Elsevier Ltd. All rights reserved.
K. Kimiafar et al. / The Breast 28 (2016) 156e160 157

diagnosis and require information to better understand and fight Questionnaire design
their disease [8]. Their needs for information stem from their
having incomplete information and a lack of understanding about The questionnaire was designed based on factors identified in
their current situation [6]. Considering patients' needs for infor- the published literature and included seven parts: (a) demographic
mation will assist them in making informed decisions and will in- characteristics: gender, age, marital status, education level, occu-
crease their satisfaction in choosing treatment options. Creating pation, residence; (b) patient attitude toward information; (c) in-
logical expectations in patients empowers them to cope with formation sources used by patients; (d) reasons for using
cancer [9,10]. Providing enough information to patients may raise information sources; (e) patients' information needs; (f) the degree
their level of participation, improve the quality of care [11], relieve of patient trust in information sources; (g) problems patients faced
some anxiety about cancer and its treatment process, correct false while obtaining information about their disease. Patient attitude
beliefs, increase patient adherence to treatment recommendations, toward information was assessed using yes/no questions, the next
establish better relationships between physicians and patients, five parts rated on a five-point Likert scale (1 ¼ very low to 5 ¼ very
improve one's mental health [12], and increase satisfaction levels high), and one open-ended question: “In general, what is your
among patients [13]. opinion about the accessibility to the medical information?”. The
Recent studies have shown that, despite increasing awareness validity of the questionnaire was analyzed using the content anal-
and knowledge among clinicians about the information needs of ysis method (literature review and expert opinions), and reliability
cancer patients, many patients still feel that they do not get enough was assessed using the testeretest method (r ¼ 0.78).
information or have received information that is unclear and not
understandable [12,14,15].
Studies have also indicated that patients use other information Data analysis
sources, such as the Internet, books, and other patients, to meet
their information needs [16,7]. Statistical analysis was performed on this data using the t-test
Many cancer patients would like as much information as and the chi-squared test. Data was analyzed using SPSS 11.5 soft-
possible about their disease, treatment options, the rehabilitation ware. The “cut off” used for the P value was 0.05.
process, side effects, and possible outcomes of their disease.
However, the type of information they request will change over
time [8,13]. Results
By studying the information needs of breast cancer patients, the
quality of the information provided for them can be improved. The Baseline characteristics
present study investigated the information needs of breast cancer
patients and their information-seeking behavior. The important The average participant age was 46.2 years (SD ¼ 9.9). The
points of the present study are the simultaneous consideration majority of patients were married (90.8%); 65.5% had less than a
given to the information sources of breast cancer patients, the high school education, 76.7% lived in urban areas, and 91.7% were
evaluation of patient trust in each source, the information needs of housewives.
patients, and problems in meeting these needs in a developing
country.
Patient information-seeking

Methods Results concerning patient attitude toward information indi-


cated that 45% of patients had previous experience in seeking in-
Study design formation about breast cancer; only 10.2% of them sought
information before their diagnosis. Eighty-five percent of patients
This cross-sectional study, approved by the Ethics Committee of desired more information about their disease. There was a signifi-
Mashhad University of Medical Sciences (Code: 931529), was con- cant relation between information seeking and age. Younger pa-
ducted from March to June, 2015. The research population was tients (46 years) had a higher tendency to seek information
women diagnosed with breast cancer and informed about their (P ¼ 0.036).
disease who referred to oncology outpatient clinics at a specialized Results showed that the attending physician (mean ¼ 3.76), the
cancer hospital and a radiotherapy oncology center in Mashhad television health channel (mean ¼ 3.30), and other patients
(the only specialized cancer centers in eastern and northeastern (mean ¼ 3.06) were the most popular sources of information used
Iran). by breast cancer patients. Pamphlet or brochure (mean ¼ 1.70) and
Oncology physicians in the outpatient clinics identified eligible hospital e-mail (mean ¼ 0) were the least used sources (Table 1).
patients who were then provided with information about the study. Results also identified a significant correlation between use of a
Those who agreed by implied consent to participate were given a book and age; older patients used fewer books as information
questionnaire. sources than younger patients (P ¼ 0.008).
Responses regarding the degree of patient trust in information
sources revealed that patients trusted their attending physician the
Sample most (mean ¼ 4.32), followed by the television health channel
(mean ¼ 3.30) and other television channels (mean ¼ 3.60).
The questionnaire was offered to 150 women with breast can- Patients stated their strongest reasons for using information
cer; 120 patients completed the questionnaire, giving an 80% sources as achieving a better understanding of the disease
response rate. The inclusion criterion was having breast cancer (mean ¼ 3.59), less anxiety (mean ¼ 3.92), and curiosity to learn
(regardless of age or level of education). Those patients unable to more about the disease (mean ¼ 3.66), sequentially. It should be
take part in the study because of tiredness caused by chemo- noted that the weakest reason for using information sources was
therapy, unwillingness due to mental problems, foreign language- that it had been suggested by their attending physician
speaking patients, and men with breast cancer were excluded. (mean ¼ 2.13).
158 K. Kimiafar et al. / The Breast 28 (2016) 156e160

Table 1
Information sources used by patients (rated from 1 (very low) to 5 (very high)).

Information sources Very high High Medium Low Very low Mean
N (%) N (%) N (%) N (%) N (%)

Attending physician 46(38.3) 37(30.8) 7(5.8) 3(2.5) 20(16.7) 3.76


Other physicians 12(10) 6(5) 8(6.7) 8(6.7) 62(51.7) 1.94
Nurses 13(10.8) 6(5) 9(7.5) 10(8.3) 60(50) 2.00
Radio 11(9.2) 12(10) 22(18.3) 4(3.3) 46(38.3) 2.35
Television health channel 27(22.5) 23(19.2) 28(23.3) 4(3.3) 21(17.5) 3.30
Other television channels 20(16.7) 20(16.7) 25(20.8) 7(5.8) 29(24.2) 2.95
Books 10(8.3) 9(7.5) 14(11.7) 6(5) 54(45) 2.09
Pamphlet or brochure 7(5.8) 3(2.5) 7(5.8) 6(5) 59(49.2) 1.70
Journals 4(3.3) 2(1.7) 7(5.8) 10(8.3) 64(53.3) 1.53
Newspaper or magazine 7(5.8) 5(4.2) 9(7.5) 8(6.7) 66(55) 1.73
Internet 15(12.5) 5(4.2) 11(9.2) 6(5) 62(51.7) 2.04
Friends 13(10.8) 9(7.5) 9(7.5) 7(5.8) 55(45.8) 2.12
Family members 23(19.2) 15(12.5) 17(14.2) 3(2.5) 42(35) 2.74
Other patients 30(25) 10(8.3) 22(18.3) 8(6.7) 28(23.3) 3.06
Hospital e-mail 0 0 0 0 0 0

Patients' information needs Discussion

Results indicated that information on disease management Patient information-seeking


(mean ¼ 4.18) and nutritional options during treatment
(mean ¼ 4.14) were the most mentioned needs of patients, while The findings of this study indicated that breast cancer patients
knowing their disease progress rate was the least (mean ¼ 3.73) would like to know more about their disease. A study in Sweden
(Table 2). There was a significant relationship between the need to showed that almost half of patients demand more information
know the cause of the disease (P ¼ 0.022) and the need to know about their disease [13]. Findings from recent studies have shown
their disease progress rate (P ¼ 0.073) and patient education level. that the level of satisfaction with information felt by breast cancer
Less-educated patients needed less information about the cause patients has a positive relationship with their health-related
and progress rate of their disease than more educated participants. quality of life [13].
Results identified the most important problems patients faced The findings of this study showed that the patients' most
in obtaining information about their disease were little familiarity important source of information is their attending physician; this
with medical terminology (mean ¼ 3.73), little familiarity with result is similar to previous studies [10,17,18]. Information source
information sources (mean ¼ 3.42), and the inaccessibility of reli- selection depends on success in accessing the desired information
able information sources (mean ¼ 3.30). in the fastest and most appropriate way [19,20].
There was a significant correlation between having little famil- An interesting and important issue noted in the present study
iarity with medical terminology and the inaccessibility of infor- was that Iran's national television Health Channel, dedicated to
mation in one's native language and education level. Less-educated broadcasting health information, played a major role in providing
patients had more problems in this regard. patients with information. This channel ranked second, behind
Results of the open-ended question about the accessibility of attending physician and before other healthcare providers, as the
medical information indicated that some patients were satisfied most reliable information source. So, directors and planners of TV
with their attending physicians while others desired more infor- channels should pay more attention to provide evidence-based
mation about their disease. Patients suggested a need for improving content based on the specific needs of patients.
the provision of information by physicians and nurses, particularly One important patient information source highlighted by the
in the areas of how to live happily, keep spirits up, and increase results of this study was the experiences and knowledge of other
emotional and psychological support. Some participants (40%) patients. Therefore, the attitudes and knowledge (right or wrong)
were not satisfied with how the nurses gave them information and of current breast cancer patients will affect the beliefs and attitudes
notices about their next treatment sessions. of new patients.

Table 2
Patients' Information needs with breast cancer (rated from 1 (very low) to 5 (very high)).

Primary needs for seeking information Very high High Medium Low Very low Mean
N (%) N (%) N (%) N (%) N (%)

Disease management 55(51.9) 31(29.2) 11(10.4) 2(1.9) 7(6.6) 4.18


Nutritional options during treatment 55(51.9) 30(28.3) 10(9.4) 3(2.8) 8(7.5) 4.14
Disease recovery methods 53(51) 30(28.8) 10(9.6) 2(1.9) 9(8.7) 4.12
The best approach to treatment 57(50.4) 34(30.1) 10(8.8) 3(2.7) 9(8) 4.12
Psychological care during treatment 50(48.5) 30(29.1) 11(10.7) 3(2.9) 9(8.7) 4.06
Diagnosis 47(44.3) 27(25.5) 11(10.4) 6(5.7) 15(14.2) 3.80
Cause of disease 56(50) 29(25.9) 10(8.9) 4(3.6) 13(11.6) 3.99
Side effects of treatment 49(46.7) 27(25.7) 15(14.3) 3(2.9) 11(10.5) 3.95
Specific drug information about the disease 49(46.7) 28(26.7) 10(9.5) 5(4.8) 13(12.4) 3.90
Stages of disease 50(46.7) 25(23.4) 16(15) 2(1.9) 14(13.1) 3.89
Find better therapeutic center 44(41.5) 32(30.2) 13(12.3) 2(1.9) 15(14.2) 3.83
Knowing their disease progress rate 43(41) 27(25.7) 14(13.3) 6(5.7) 15(14.3) 3.73
K. Kimiafar et al. / The Breast 28 (2016) 156e160 159

The Internet was ranked ninth as a source of information for The findings of the current study indicate that patients are not
breast cancer patients, and hospital e-mail was not used by patients satisfied with the performance of the nurses in providing them
at all. A study by Li et al. also indicated that the Internet was the with information. They prefer other information sources for gaining
least used information source [17]. However, Littlechild et al. more information about their disease. In contrast with the findings
claimed that more than half of breast cancer patients use the of this study, Li et al. mentioned that nurses received the highest
Internet to obtain information about their disease [7]. It seems that score for providing patients with suitable information [17]. There-
the lack of a suitable Internet infrastructure and sufficient content fore, since nurses have the most contact with patients [35,36], it is
on this disease in developing countries is the main reason patients suggested that nurses should train on how to provide patients with
do not use this source as much as others. However, suggesting the necessary information.
Internet as a source of information should be done with caution so The findings of this study indicate that patients suggest a need
that it will not be a cause of anxiety and confusion in patients [7]. for improving the provision of information, particularly in the areas
The current study showed that patients place the most trust in of how to live happily, keep spirits up, and increase emotional and
their attending physician among different sources of information. psychological support. Patients with breast cancer need not only
According to Esbensen et al. [21], this could be because enough medical care, but also psychological, social, and information sup-
suitable information is provided for patients by their physician. port. Psychosocial support is a crucial component to the quality of
Previous findings indicate that the quality of care for breast cancer cancer care, and patient needs in this area should be continually
patients can be improved by some interventions to enhance the evaluated [37]. Particular psychosocial issues associated with
physicianepatient relationship [22,23]. It is suggested that breast cancer include depression, anxiety, concerns about social
healthcare professionals spend more time listening to their patients stigma, body image, and changes in social roles. The kinds of psy-
and patients' interests [21]. chosocial support will vary based on available resources and ex-
perts; for example, peer support can be offered at a basic level,
Patients' information needs while at an advanced level, the goal would be to offer formal
counseling by a mental health professional [38].
In the current study, information about disease management Women with breast cancer in developing countries need psy-
and nutritional options during treatment were identified as the chological support [39], but unfortunately, supportive services are
most important information needs of patients. According to a study inadequate [40]. One reason may be the low-skilled healthcare
by De Bock, breast cancer patients consider information on the side workforces in this field. Many of these countries assign supportive
effects of treatment, the effects of long-term treatment, and prog- care to other professionals such as trained nurses. However, the
nosis to be very important issues [24]. In a study by Matsuyama, findings of some studies indicated a positive impact of applying
similar results were found; many patients would like a lot of in- these people to improve the quality of cancer care [37,39].
formation about their disease, treatment options, laboratory tests, While analyzing the results, some limitations should be
and self-care [8]. considered, such as the small sample size selected from a local area
One interesting finding in this study was that patients had a and the fact that most participants had less than a high school
great interest in information about nutrition during the course of education. Moreover, this study was restricted to female patients
their disease; this is a good hint for nutritionists and indicates the only, and the stage of cancer was not considered. More research
necessity of disseminating information regarding nutrition to this with a larger sample size and comparisons with other patient
group of patients. Malnutrition in cancer patients is a common groups are recommended.
issue [25]. In Iran, around half of the patients with cancer (53.1%)
experience some degree of malnutrition in different stages of their Conclusion
treatment [26]. Nutrition and diet can change the progress rate of
the disease, the response to treatment, and the survival rate of Generally, it seems that a good, well-organized plan to provide
patients [27,28,3]. Several studies have shown that obese women breast cancer patients with information and increase their infor-
have a greater risk of their breast cancer metastasizing to other mational literacy as one of their undeniable rights is necessary.
parts of their bodies [29,30]. A study in Spain performed on patients However, the implementation of these requirements and meeting
with locally advanced or metastatic cancer showed that 52% of the information needs of patients must be continually evaluated
patients are somewhat to severely malnourished and 97.6% need and monitored.
some kind of nutritional intervention or recommendations [31]. In
a study by Genton et al., 70% of breast cancer patients were very Conflict of interest statement
keen to obtain nutritional information and recommendations [32];
this result is consistent with the findings of the present study. Authors declare that they have no conflict of interest.
The current study also revealed that the most important prob-
lems of patients in seeking information were little familiarity with Acknowledgments
medical terminology and information sources and the inaccessi-
bility of reliable information sources. The results of a study by Cox The authors would like to thank the Research Deputy of Mash-
et al. also indicated that, even though most patients could read the had University of Medical Sciences for the financial and adminis-
information forms provided for them, they could not understand trative support of this study and the Cancer Research Center in
the content well enough to be able to follow the recommendations. Mashhad for their assistance in this study (Grant number: 931529).
They suggested that the educational content provided to patients
should be written in a suitable and clear language. Moreover,
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