1) Patients’ desire to seek information and its determinants:
14 articles had studied the patients' desire to seek information. All of these studies have shown that the majority of breast cancer patients tend to have information about their disease. (4,9,24,37,57,59,65,66) Breast cancer patients compared to those with other types of cancer are more likely to seek information actively. (37,59,62) It has also been reported that a significant percentage of breast cancer patients don’t want to receive detailed information and are merely inclined to have the information they need. Also, a smaller percentage of them are willing to receive bad news and information. (32) Personal history, perceived need to information, ethnicity, education and marital status are among the determinants but age, religion, employment and income have not shown to have relationship with patients' preference for seeking information. (24,37,39,65,72)
2) Cancer knowledge of patients: Although a study from Malaysia has reported the studied patients’ knowledge as poor (40), the majority of studies have reported that a significant percentage of breast cancer patients have an acceptable degree of knowledge about the disease. Also, a considerable percentage of patients think that they have knowledge about their disease. Studies show that higher education and income are associated with better knowledge. (30,52,54) Some factors such as ethnicity, race, education and the patients’ sources of information affect their cancer knowledge. (69) Surprisingly, although greater perceived knowledge is favorable, but it have some negative consequences. A study has shown that patients’ perceived knowledge about prevention is one of the reasons for not using messages related to breast cancer prevention. (30,52,54) So it seems that perceived cancer knowledge can affect patients’ information behavior. In the other words, it can act as a predictor of patient’s information seeking behavior.
3) Information seeking experience:
- Experience of information seeking: In the reviewed studies, between 45% and 93% of the participants had reported previous information seeking experience. (4,52,57,72) A large percentage of patients also, had occasionally looked for information. (9)
- Average time spent on seeking information and its associated factors: One study has reported this matter. The study reported that participants spent an average of 32 minutes on the online information seeking in a period of 4 months. (34) Factors such as unmet and perceived informational needs, functional well-being, health self-efficacy, emotional well-being, negative emotions, participation in health care, information competence, barriers to seeking information and perceived social support have significant association with the mean time spent on searching information by the participants. (34,40)
- Information seeking at different stages of disease: Current literature shows that very few patients seek breast cancer information before disease diagnosis. This percentage had been reported in one study as 10.2% (1). Another study has shown that in the pre-treatment period, only 16% of its participants actively looked for information and the rest of them were moderately active (71.4%) or passive (12.6%). (62) In another study, the majority of patients (73%) reported that they had not searched for more information about their disease after the diagnosis (54).
Another study has reported that search for topics related to the breast cancer at stage III of the disease was more than that other stages which followed by stages II, I, 0 and IV, respectively. (9) Another study found that higher stages of the disease are associated with a reduction in the use of Internet to search information. (45)
- Thematic categories of sought information: Various studies have investigated the types of information searched by breast cancer patients. A summary of the findings of studies shows that the patients seek the following information:
- General information on cancer and its treatment: Breast cancer patients look for information about cancer and its treatment more than other information such as care providers or psychosocial consequences. This information includes laboratory tests and radiographies; treatment options, their advantages and disadvantages; medications; the best treatment; description of treatment and therapeutic procedures; treatment complications and treatment schedules; rehabilitation; complementary comments on proposed treatments by physicians; the process of recovery and its time frame; the probability of disease relapse and its spread to other parts of the body and the chance of survival. (9,24,30,32,4,45,47,67,70)
- Psychosocial management: A significant percentage of breast cancer patients are searching information about managing the effects of cancer on family and social life including the management of side effects; psychological support for overcoming disease; required personal and family care and the probability of losing job. (9,46,47,65)
- Care providers: Information about care providers such as the best physicians or hospitals is an important information category which is sought by patients. (9,30,67)
4) Determinants of information seeking: Some factors affect patients’ desire to seek information positively and some another negatively. Five studies have grouped all the affecting factors of information seeking behavior for online and non-online information as followings:
A) Contextual factors including healthcare structure, delivery of care, information environment factors and cross-cultural communication. (6)
B) Individual factors including demographic factors such as age (4,6), socioeconomic factors, health history, genetics, family medical history, culture, language, attitudes, intentions and behaviors, current health status and health literacy (6), education (6,45), race (8), having private insurance coverage and living with a partner. (45) Also, women with higher self-efficacy have more active role in seeking information. (42) Moreover, higher disease stages (45) could reduce the patients’ desire to seek online information. This one can be due to the reduced ability of patients to seek information as a result of their disease progression.
5) Patients’ reasons for information seeking:
A study has reported that having a better understanding of disease, reducing the anxiety and curiosity for learning are the most important causes of information seeking, while the physician advice is the less important one. (4) Another study reported that most patients seek information to protect and support themselves. They seek information to be able to control their status, to be supportive of themselves and to understand the physicians’ conversations better. (35)
6) Patients’ Informational needs:
- Common informational needs of breast cancer patients: The most important information that breast cancer patients need includes:
- Disease causes and risk including its heredity (44,46).
- General information about disease and its prognosis: includes information on screening and degree of invasiveness, progression of disease and the chance of recurrence (4,8,33,46,66,70).
- Information about treatment options: Includes information on the best treatment approach, benefits and side effects of treatments and their chances of success (1,11,12,27,37,50,54,58).
- Information about disease consequences: Includes information about the potential effects of cancer on life expectancy (58,11).
- Information about the management of side effects and self-care strategies: Includes some information about the management of cancer-related psychological issues such as anxiety and stress, self-care strategies, disease management and its negative effects at home, the diet, physical activity and tobacco use during the treatment periods, recovery methods and what the patients can do to help themselves (1,12,18,31,58).
- Information about the care providers and support groups: Includes useful information for finding the best care provider as well as the available support groups in the area (1,12,58).
- Financial information: Includes the amount of direct out of pocket payments in the course of treatment (11).
- Factors influencing patients’ informational needs: Although all cancer patients need some information about the disease, their informational needs are not same. It has been showed that some factors affect the informational needs of breast cancer patients. A study has reported that the spreading of cancer to other parts of body and the gross household income are among such factors. In another study, patients were asked about the informational needs at different stages of disease. Participants have stated that in the preoperative stage, much more information is not needed; but as they going forward in treatment spectrum, more detailed information is needed (7). Age, education, preferred level of control over decision-making and the patient's real role in decision making, having family history of illness, the time elapsed since the diagnosis of disease, religious beliefs, living with others or alone, income and education are other factors influencing the amount and types of information that is needed by patients (11,19,27,50).
7) Information sources:
- The most common sources of information using by patients:
The common information sources of breast cancer patients can be divided into 4 categories:
- Interpersonal sources: Interpersonal sources are the most used sources of information by breast cancer patients. The most commonly used interpersonal sources are physicians, nurses and other health professionals (1,3,4,6,22,38,54). Also, other breast cancer patients, face-to-face or online support groups, family members, spouses or partners, friends and colleagues are other interpersonal sources of information for such patients (3,4,6,10,13,22,24,28,39,42,43,44,47,48,53,54).
- Paper sources: Including magazines, brochures and pamphlets, newspapers, books, specialized journals and health exhibitions (1,3,4,5,22,38,39,54).
- Digital sources: Including television and radio (1,3,38,42,44,50,53,54).
- Websites: Cancer-related websites are the expanding sources used by breast cancer patients (10,12,24,38,44,47,50,51,53,54).
According to the findings of studies, it seems that health care providers are still the most common information sources for breast cancer patients, although the findings of studies are scattered among other information sources.
- Determinants of preferred information sources: Some factors affect patients' preferred information sources including cultural factors, race or ethnicity, language, age, education, participation rate in decision making and the type of treatment (3,44,50).
- Patients’ trust in information sources: A study has examined the patients’ trust in various information sources. According to this study, patients have the most trust in the attending physicians and health and other television networks (1). A study has reported that patients are cautious about unusual information provided by production companies (12). Another study has reported that 53% of participated patients are suspicious about the reliability of online information (60).
- Methods of providing information to patients by care givers: Care givers’ communication behavior with patients in terms of information providing includes the following 2 types:
1) Interactive information: Refers to the top disease-related issues that are considered as the most important ones by patients which should be provided by care givers.
2) Tangible information: Refers to specific informational sources such as books, pamphlets, medical records and the information of support groups for patients provided by care givers (5).
Also, cancer-related information can be provided for patients in 2 ways of explicit and implicit information introduction. In implicit introduction, physicians refer to the questions which patients previously brought up while in explicit manner physicians explicitly ask patients if they have any question about cancer-related information (17).
- Number of sources searched: In a study, the number of sources searched by patients has been examined. According to this study, each breast cancer patient, on average, seeks information from 2.5 ± 3.8 sources. This study also has shown that as the disease progresses, the number of informational sources which are searched by patients is reduced (6).
8) Information seeking style: Breast cancer patients, generally, use 2 different styles of information seeking: Narrative and Instructive information seeking (2,32,33). In this case, two studies have found that patients’ perception of social support can affect their information seeking style. Women with lower perceived social support use narrative form more than those with higher perceived social support (2,32).
Also based on the role of the patients, information seeking styles are divided into 3 categories:
1) Passive information seeking: Patients do not seek information, but they get the information that happened to pass their way.
2) Moderately passive information seeking: Patients seek information curiously or only to fill the gap of their knowledge.
3) Active information seeking: Patients seek information as a complementary viewpoint of their health care providers’ recommendations (3,32,43,46).
In this case, the results of studies show that although breast cancer patients seek information more actively before the treatment, but in the post-treatment phase they become passive recipient of information (43,46).
Also, breast cancer patients can be categorized in the following groups according to the amount of information they use in making their health decisions:
1) Information using phases for active information seekers:
- Patients are not aware of available information.
- Patients are aware of available information, but do not attempt to access it.
- Patients are aware of the available information and attempt to access it.
- Patients have access to available information, but are not able to use it.
- Patients have access to available information and are able to use it.
- Patients have access to available information, but do not use it to make their healthcare decisions.
- Patients have access to available information and use it to make their healthcare decisions.
2) Information using phases for passive information recipient:
- Patients do not receive information from informational sources.
- Patients receive information from informational sources, but do not use it.
- Patients receive information from informational sources and use it.
- Patients receive information from informational sources, but do not use it to make their health-related decisions.
- Patients receive information from informational sources and use it to make their health-related decisions (3).
9) Information seeking barriers: The most important problems for patients in seeking information are low familiarity with medical terminology; limited knowledge of informational sources and inaccessibility of sources; concerns about the quality of information and negative experiences in seeking information such as spending too much time to find the information they need, tending to have more information, problems related to the understanding of searched information and frustrating and disappointing feeling towards seeking information (1,15,36). A study has reported that higher level of education reduces the information seeking problems because patients with higher education are more familiar with medical terminology and have less linguistic problems (36).
10) Patient Satisfaction with sought information: Generally, 3 factors affect the patients’ satisfaction from information seeking including the sources of information, the amount of information received and the manner of giving information. One study reported that 40% of its participants were not satisfied with the manner of giving information by their nurses. The participants of this study stated that information giving by physicians and nurses, especially in regard to the mental and emotional supports, should be improved (1,60). However, some studies have reported a moderately good satisfaction of their participants from received information (14,24,51).
11) Outcomes/ Consequences of information seeking: According to the existing literature, information seeking experience is related to improved patient knowledge, more active participation in care decisions, improved self-care, empowerment, higher satisfaction, more activated daily life, better emotional well-being, better patient-physician relationship and even the better health outcomes (3,15,20,36,39,45).
12) Interest in sharing cancer information:
- The willingness of patients and care providers to share information: Sharing disease information with care providers has positive effects on the treatment and its outcomes trough creating a better understanding of the disease. A study has shown that care providers believe that it is necessary for them to have information about their patients’ physical and mental health factors (21). This study reported that most patients also tend to share their health information with the care providers (21). In addition to share information with the care providers, patients often share their health information with their family and friends, other patients, cancer survivors and other people who can help them (44). Patients try to discuss their information with others for some reasons such as to become more aware, ask for more information, actively engage in improving their health and satisfying their psychological and emotional needs (40).
- Common information types which interested to be shared: Breast cancer patients are mostly interested in sharing information about their height, weight, pain, nausea, constipation /diarrhea, fatigue, insomnia, heat flashes, hair loss picture, medication adherence, details of surgery, disease stage, survival history, wound image, breast image, diet, stress, anxiety, fear, loneliness, support seeking and having a good or bad day with their care providers.
Providers also wish to receive information on different topics including biometric factors, physical factors, constipation/diarrhea, hot flashes and medication adherence, patients’ dietary regimen and insomnia as well as psychological factors and support seeking.
Although this list can include many factors, it seems that a combination of information about a variety of factors can help the care providers to understand their patients better (21).
- Factors affecting patients' desire to share information: A study reported that the following factors affect patients' desire to share their disease information:
a) Patients' perceptions: Patients' perception of the desire of information recipients to receive information and their ability to help them
b) Cancer identity: Some patients consider cancer as a small part of life and, therefore, they can more easily share their cancer information with others.
c) Imposing problems on others: Patients’ unwillingness to impose their own problems on others and lack of desire for glory and grievance (21).
- Differences between patients’ and providers' preferences for sharing information: A study has shown that there are significant differences between the preferences of patients and care providers in sharing information. For example, patients and providers’ preferences of sharing some kinds of information, including hair loss images, breast images, psychological factors as well as patients' dissatisfaction from care providers are considerably different (21). Investigation of the causes of these differences and providing best solutions to reduce them can improve information sharing between patients and care providers which, in turn, will help the treatment process.
13) Emerging Information sources: Internet and mobile phones are newly expanded sources of information for patients. Today, internet is one of the most important sources of health information which strengths the patients’ empowerment process and helps them to manage their disease (34). Despite the expanding of Internet, healthcare providers continue to be the most important source of information for breast cancer patients and the use of emerging technologies is still limited (3,24,51,53,54,57). A study has reported that participants' awareness of the books is higher than that of websites. This study has found that interpersonal communication is used more than internet as an informational source (3). Another study reported that only 31% of its participants actively search for internet information and 14% of them passively received internet information (6). In another study from south Manchester on the using of internet for information about breast cancer about half of the participants have reported to use internet in seeking cancer information from which 73% have found it beneficial. This study also has confirmed those younger patients and those with a higher household income being most likely to search internet for their disease information. 3 other studies have reported that only 22, 28 and 17 percent of participants search disease information on the internet. It is notable that internet information searchers do not use retrieved information to make their health decisions at all times (17,22,54). For example, in a study that aimed to assess the level of awareness and use of 5 major American cancer websites, it had been reported that, despite good awareness, less than half of the patients had searched disease information on these websites. Also, of these, about half of them had used the retrieved information in their care decisions (3). However, a study has shown that the use of internet for seeking the disease-related information is expanding (30).
Patients can be divided into 2 groups based on their use of internet to seek disease information:
- Non-users: Those who do not use internet as a cancer information source.
- Users: Those who use internet as a cancer information source. This group is subdivided into followings:
- Lurkers: Those who read texts about their disease but rarely send a message.
- Posters: Those who both read internet texts and send messages.
Some factors such as age, race, living alone or with partner, cancer stage, information capability, patients’ confidence to the physician-patient relationship, perceived social support, perceived need for information, level of depression, knowledge and functional well-being are associated with patient placement in each of non-users or users groups (29,37).
Also, some factors have been reported to affect the breast cancer patients’ internet search. Age, language, education, disease stage, income and time elapsed since the diagnoses are among these factors. Studies show that seeking information via internet is more prevalent between patients with higher education, patients who have private insurance coverage and those live with a partner. Higher stage of the disease is also associated with a decline in the use of internet (3,30,54,56,57).
In general, the reasons for using Internet as an informational source by breast cancer patients include finding out more information such as more information about alternative treatments and more searching for information provided by physicians (60). The most barriers to internet search also include the lack of access, complexity of internet use (poor IT skills) (54) and the concerns about the validity of internet findings (17). At the same time, a study has reported that oncologists can encourage patients to use internet and help them to improve their internet skills (17).
About the type of information which the breast cancer patients search on the internet, studies show that the majority of patients search general information about disease and information related to the prevention, risk factors, disease prognosis, diagnosis and treatment options (54). It seems that breast cancer patients search for medical information on the internet more than information related to the management of the disease (56).
Mobile phone today is considered as a tool for information seeking, especially through receiving messages about the disease but studies show that the use of mobile phones to receive information in women with breast cancer is still low (4,6,38). A study has shown that only 10.6% of participants actively search information via cell phones (6). The most important barriers to using mobile phones include patient’s perceived knowledge of disease, limited access to mobile phones and lack of interest (38). Also, studies have shown that use of the mobile phones for disease information seeking is related to factors such as age, income, race, nationality and education. Women with lower age, higher income and higher education are more likely to use mobile phones to seek disease information (4,38).