Breast cancer patients might experience physical abnormalities anytime during the cancer continuum. Their information needs were often triggered by the appearance of symptoms of the primary tumor (eg, lumps, pain, or discharge) [9,26,28,31-33,36] because patients’ panic and uncertainty increased before diagnosis. Nine studies also reported side effects caused by the treatment (eg, irregular menstruation, arm complications, fatigue, sexual dysfunction, lymphedema, and pain) [25,27,29,30,32,34,35,37,38] that would last from the treatment to the survivorship stages and could lead to specific information needs.

Three studies suggested that doctors provided patients with several surgery choices and asked patients to quickly make treatment decisions (in phase 2), resulting in information needs about treatment [26,32,39]. During treatment (in phase 2), a patient wished that she had asked doctors more questions because she could not answer the queries of patients around her, indicating that other patients’ questions helped form information needs that some patients themselves were not aware of [36]. In the survivorship stage, a patient was asked questions by general people around her, which reminded her of the risk of a recurrence, leading her to go back to the clinic for a follow-up appointment [31].

Patients’ information needs were also triggered by subjective norms (“the belief that an important person or group of people will approve and support a particular behavior” [70]). For example, in phase 2, one patient reportedly requested copies of all her diagnostic results from the hospital [40], following the advice from a support group member.

Similar to the inquiries from others, problems could occur during appointments. For example, during the process of treatment decision making, the long waiting period between diagnosis and making a final treatment decision made it difficult for patients to remember all the information discussed, thus generating more information needs [25]. In addition, the doctors sometimes did not provide patients with enough information about breast cancer treatment options and simply made the treatment decision without discussion with the patient, which left the patient with more uncertainty [41]. The patients also had many questions (eg, who and how often should they see the doctor) as they transitioned from the cancer care group to the primary care physician shortly after treatment (in phase 3) [30,37]. Patients were also confused when health care professionals provided them with inconsistent information (eg, tamoxifen discontinuation) in the survivorship stage [30], triggering the need for more exact information. In a follow-up appointment (in phase 3), it was reported that the doctor’s indifferent attitude also led to patients’ anxiety and uncertainty when doing a routine examination [30].

Three studies reported that patients were concerned about information on prevention, including effectiveness of breast self-examination [40] in phase 2. Patients reported that they also needed information about prevention for family members [30,42,43] during the survivorship stage.

Etiology information was needed throughout the whole cancer journey. Four studies reflected on this type of information need. For example, patients wanted to know about internal and external factors (risk factors) before diagnosis in phase 1 [36] and phase 2 [40]. Patients also needed information on internal (genetic) [42,44] and external factors (possible carcinogens and environmental triggers) [44] in the survivorship stage in phase 3.

In the diagnosis and treatment phase (in phase 2), patients were concerned about specific biopsy procedures (arrangement, temporal sequence, and actual procedure) [45], pathologic results (results of the biopsy) [45], and precision and applicability of the examination tools [9]. They also wanted an explanation of technical terms related to the diagnosis (used to describe tumor types) [46], pathologic results (pathological stage or the type of breast cancer) [36,43,46], clinical stage [36,40], waiting time of diagnostic tests, and the corresponding impact on prognosis [47].

Patients wanted to know about the signs of breast cancer (symptoms of the primary tumor) [36] before diagnosis (phase 1). Information about the meaning of the corresponding symptoms was needed by patients who were undergoing a breast biopsy (in phase 2) [45]. They also needed to be informed of the symptoms of the side effects caused by the treatment [30,37] during phases 2 and 3. Eight studies also reported that patients were concerned about symptoms of a recurrence (symptoms of the primary tumor) [30,33,37,43,44,48-50] during phase 3.

Patients needing treatment information during the cancer continuum was commonly reported across studies (n=44): 23 studies found that patients needed treatment options while waiting for diagnosis results [45], shortly after receiving diagnosis results [36,40,51], and during the treatment decision process [8,9,26,28,31,32,34,39,40,42,46-48,52-59] such as popularity, advantages and disadvantages, risks, applicability, recovery time, comparison, cost, and optimal time of different treatment options in phase 2. Twelve articles also mentioned that patients wanted to be educated about the side effects of treatment [8,9,25,28,31,36,40,46,56,60] when considering the treatment decision. The information needs of patients during treatment preparation included details about treatment preparation [33,42,48,52] and treatment procedures [9,25,28,30,42,46,61,62].

During treatment, patients’ information needs focused on the side effects of treatment [25,47] and management of the side effects [8,25,38,40,46,49,50,53,60,63,64]. The studies also reported that patients needed details on the treatment options (alternative and complementary medicines and treatment) [25,65] and treatment procedures (eg, location of the pharmacy) during treatment [28,40,42,46,53,57,61]. In the survivorship stage, patients also paid attention to information on side effects [8,29,30,32,33,36-38,41,42,48] and management of side effects [25,30,35,37,43,48,49]. In phase 3, patients needed information about treatment options (eg, complementary and alternative therapies) [42,44,64,65] and treatment evaluation summaries [43,48]. In addition, patients wanted information about preventing a recurrence (eg, prevention-related policies, signs and symptoms of a recurrence, natural remedies to prevent recurrence, preventive health actions to minimize the risk of a recurrence) [30,33,37,41-43,49,52,61,66] in the survivorship stage.

Patients’ need for prognosis information included general survival rates [26,47,51,54] and the risk of a recurrence [27] in phase 2. Studies also found that patients desired information about the risk of complications [42], risk of a recurrence [31,46], and survival statistics of treatment regimens [55,59] when they made treatment decisions. In particular, patients needed to know the risk of a recurrence in phases 2 [47] and 3 [30,32,66].

Patients wanted to know how to communicate about the cancer with their family members in phase 2 [9,26,52,67,68]. Patients also needed information about the impact of treatment on their own body image [28,32,33,35,42,62,69], fertility (or menopause) [8,35], work [25,26], and psychology [8,26,64] in phase 2. In the survivorship stage, patients were concerned about the impact of treatment on work [44,52], intimate relationships [44,69], fertility (or menopause) [9,30,44], psychology [42,44,69], and body image [9,27,34,35,69]. In 26 studies, strategies to improve patients’ quality of life (eg, fertility preservation options, sex advice, instructions about diet and exercise, stress management, reconstruction) were important for patients in both phase 2 [9,26,27,35,38,39,47,51,53,56,60-62] and phase 3 [29,30,32,36,41-44,48,63,64,69].

Some patients needed information about recent breast cancer research findings [40] and clinical trials [47,65] in phase 2. In addition, medical breakthroughs (recent research findings), corresponding clinical trials [30], new treatment, and research developments [44] were requested in phase 3.

Patients generally needed information about insurance (eg, health insurance) in phases 2 [46] and 3 [30]. Five studies reported that patients sought information on financial support (eg, employment benefits, where to get help) during the survivorship stage [9,26,43,52,60].

Attitudes refer to the amount of affection for or against some object [71]. In this study, attitudes included affect, behavior, and cognition. Affect represented the strong feelings of breast cancer patients, such as being shocked and worried [28,57], while behavior described their readiness to receive information [25]. Cognition was the product of knowledge acquisition or application, such as an understanding of breast cancer.

Six studies showed that patients’ cognition and affect influenced the development of information needs. For example, some patients misunderstood the causes and risks of breast cancer, believing that they would not have breast cancer after a certain age [33] or after breastfeeding [36], and thus they did not seek information. Correct cognition of patients facilitated the development of their need for information. For example, patients went to see their physicians after discovering a lump or feeling pain [9,26,28]. Two studies showed that affect also influenced their information needs. For instance, some participants who found a lump and felt shocked immediately went to the hospital to seek medical advice [28,57], while those who were not worried about the lump only described the symptoms when they went to see their general practitioner for other diseases or they chose to completely ignore the lump [28].

In addition, some patients who believed that they were still in the process of receiving diagnosis results were not willing to process a large amount of information [25]. Patients who lacked behavior intention chose to avoid information [25], while other patients asked for various types of information [8,35,46,48].

Health literacy is defined as individuals’ ability to obtain, understand, evaluate, and apply health information, which can affect individual judgments and decisions on health care and disease prevention [72]. In the study, this category included health beliefs, health knowledge, and health styles, respectively, representing patients’ values toward breast cancer, awareness of cancer-related information in order to seek appropriate health services [73], and their coping strategies for breast cancer.

For example, one patient did not go to see a doctor after discovering a lump in her breast because she lacked health knowledge about the effect of screening tools (mistakenly believing that routine mammographic screening had a preventive effect), which inhibited the development of her information needs [33]. Relatively abundant health knowledge could promote the articulation of the need for information [33,40]. While one women who had a different health style also ignored the discovery of lump until she found that the lump was getting bigger 3 month later, other patients went to see a doctor immediately after feeling breast pain [33]. In terms of health beliefs, some of the patients suspected breast cancer immediately after finding the lump, but they were not worried or did not ask about it because of fatalism [28,33] whereas other patients sought further examination [9,26,34].

Eight studies reported that the patients’ age, education level, and financial situation moderated the formation process of their information needs. For example, young patients cared more about new treatments, research advances, and effects of treatment on fertility and career compared to older patients [8,25,44]. Younger patients also expressed a greater need for information about complementary therapies, dietary changes and exercise, possible carcinogens, and environmental factors of breast cancer because of their interest or a sense of control and comfort [44]. In contrast, some older patients had less need for information and considered that the less they knew, the less they were bothered about it [28]. In general, patients with a lower education level were more likely to trust doctors and be satisfied with the information provided by their doctors [40]. These patients believed that they did not need more information and had fewer information needs than other groups [40]. In terms of education levels, having a high education level had a beneficial effect on information needs and they independently researched areas such as medical terminology and medical information systems [40]. Furthermore, patients with lower economic status showed no concern about healthy diet information due to the high costs as well as the conflicts between a special diet and their family’s diet [42]. In contrast, others cared about natural health products and healthy dietary changes [57,64]. It was also found that worse economic status and older age inhibited their need for information on reconstructive surgery [42].

Disease status involved comorbidity and the clinical stage of patients. For patients with comorbidity, information on secondary prevention was needed to avoid complications [42]. For example, obese patients faced a higher risk of recurrence, and they needed targeted survival guidelines based on their physical condition [41]. Patients with advanced breast cancer also wanted to know about the experiences of other patients in the same clinical stage [60]. They also sought information or support related to the last will and testament and final arrangements [60].

The political and cultural environment refers to the social and cultural context characterized by a community’s values and beliefs [74]. Of the included studies, 6 suggested a moderating effect of cultural background and health care policy. Patients who were influenced by Chinese culture developed more information needs regarding specific recommendations on diet and exercise related to symptom management, promotion of rehabilitation, and prevention of recurrence [38,49] because of the traditional food therapy culture. Some Chinese patients reported no feeling about postoperative body changes because body image was not as important to them as returning home to take care of their families in the context of Chinese culture [33]. In contrast, patients in some other countries like Turkey [35] and Japan [32] attached great importance to the aesthetic needs of the female body image. In addition, for patients from some countries with religious beliefs like Turkey with strong opposition to abortion, the cultural beliefs directly affected the patients’ need for contraceptive information [35]. Patients in countries that had experienced changes in the national health care policy (eg, national cost curtailment policy) and corresponding adjustments in practice (eg, frequency of routine examinations) needed more targeted information on these changes [30].

In addition to the moderating variables described above, one study found that patients who had younger children often talked about the lack of personalized information for their kids [9]. They particularly needed targeted information on how to guide their communication about breast cancer with their children because they had difficulty finding age-appropriate information [9].

The synthesis revealed that patients’ attitudes greatly affected their information needs [9,25,28,46]. Numerous other studies have also verified this view. For instance, individual cultural beliefs, views on health and disease, and other factors could affect women’s dealing of early diagnosis [78,79], which is an essential strategy for preventing breast cancer [80,81]. Emotional distress may also affect patients’ ability to cope with the symptoms and treatment of cancer [82].

To date, doctors have not paid enough attention to the emotional pressure patients feel when confronted with a diagnosis and treatment of breast cancer [83]. Thus, social support (eg, support groups, online health communities, and eHealth mobile apps) can play an active role in assisting patients with stress management and providing high-quality care [84,85]. Health care staff can also provide psychological support for breast cancer patients [86] by providing more mental health information. They can also encourage patients to express their genuine emotions and be willing to listen [87]. Finally, it is necessary for medical staff to give full respect to patients and protect their privacy [61].

This study found that breast cancer patients’ information needs can be influenced by health literacy [28,33,34]. Patients with limited health literacy commonly had more unsatisfied information needs [88]. Health literacy could also influence patients’ cancer screening knowledge, attitudes, and behavior [89]. Inaccurate health beliefs or lack of health knowledge could lead to patients overlooking physical abnormalities, which could affect early detection and treatment of diseases.

People can often detect and treat breast cancer early by improving their health literacy. A higher level of health literacy can also promote effective communication with medical staff and increase patients’ engagement in medical decisions [90]. For patients, limited literacy is associated with a low education level and socioeconomic status [91]. For medical practitioners, the knowledge of prevention, causes, early symptoms, and self-examination methods could be communicated better through mass media to improve patients’ awareness [92]. Furthermore, educational materials on breast cancer prevention should be sensitive to health beliefs [93] to reduce women’s fears of breast cancer screening and fatalism toward the disease. Physicians and other health care providers should continue to give priority to patients’ quality of life when determining treatment plans as patients’ decisions may be influenced by health knowledge. Additional training would help doctors communicate more effectively with patients with low health literacy and reduce medical inequalities.

The significant increase in the number of breast cancer patients has resulted in diverse and complex information needs. For example, there were more unmet information needs among breast cancer patients who had a foreign native language background (eg, immigrants) [94]. Moreover, the age-specific information needs of younger breast cancer survivors is still far from satisfactory [95]. Therefore, tailored information is recommended to help subgroups of breast cancer patients cope with cancer and improve satisfaction levels [96].

As shown in Table 2, this synthesis reveals suggestions and implications for tailored information services. First, some studies suggested that information provided to younger patients could focus more on the impact of treatment on fertility [8,9,35,44], lifestyle, and career as well as corresponding coping strategies [25,44,52]. More detailed advice on diet could also be provided for patients including many Asian patients. Patients who have young children can also be educated on how to communicate with their children. If patients are adequately informed about body changes before treatment, those who care a lot about body image [32,35] might have more time to consider and prepare for the changes. Policy information should also be given to patients who live in a country with changing medical policies. For patients with comorbidities and other physical conditions, specific prevention and survival guidelines are vital. Since different treatment options have corresponding side effects, health prescriptions that are targeted to each type of treatment can be distributed to patients separately to help them improve symptom management.