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Information Needs of Women with Breast Cancer: A Review of the Literature

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Abstract

Introduction:

Breast cancer is one of the most common cancers and a serious concern for women's health. Providing sufficient information to these patients increases the level of their participation and improves the quality of their care. Therefore, given the high survival rate of this cancer, it is necessary to understand their information needs. The purpose of this study was to evaluate the information needs of women with breast cancer.

Material and Methods:

The study is a systematic review of the literature. A search of the databases of PubMed, Scopus, Science Direct and ProQuest has been conducted on studies published in English over the period 2010-2017. 2881 articles were retrieved and evaluated for title, abstract and full text and after eliminating duplicate and unrelated cases, 18 articles related to the purpose of the study were selected. The articles were then analyzed using content analysis.

Results:

Of the 2881 retrieved articles, 18 studies on the information needs of patients with breast cancer were finally reviewed. According to these studies, most information needs were in the areas of diagnosis and treatment (first rank), daily activities (second rank), disease acceptance and self-image (third rank), personal and family life (fourth rank) and sexual health (fifth rank). The most important information needs in the field of diagnosis and treatment was outcomes and side effects of treatment, in the area of daily activities on the impact of disease on social activity, in the area of disease acceptance and self-image was breast reconstruction, body appearance and need for consultation, in the area of personal life, cancer risk for the family and in the area of sexual health was the effect of cancer on sexual attraction were the most cited needs.

Conclusion:

Providing information to patients is one of the most important factors in supporting cancer care and understanding the information needs is the first step in seeking information. Patients with breast cancer are interested in receiving information that will help them understand cancer, make decisions about it, and manage their treatment.

INTRODUCTION

Breast cancer is the deadliest form of malignancy among women [1] and is a serious concern for women's health [2]. According to statistics from the International Agency for Research on Cancer, in 2012 there was a sharp increase in breast cancer [3]. The disease is more prevalent in developed and high-income countries due to the higher prevalence of risk factors, such as old age at first pregnancy, high calorie intake, and the use of alternative hormone therapies [4]. Prolonged illness or even physical consequences, psychological symptoms and deficiencies can diminish the quality of life. In fact, these patients may experience painful symptoms and complications for several years after diagnosis. Therefore, efforts to improve physical function and improve quality of life in these patients are a necessity [5].

According to the evidence, patients with breast cancer suffer from physical, mental and social problems that persist long after initial treatment. They therefore have a serious need for training, information and support over time [6]. On the other hand, women are an important foundation in any family and society, therefore, improving the quality of life of women with breast cancer not only improves their survival but also improves their family structure [5]. Therefore, efforts to empower these patients to raise their awareness, skills, and motivation to positively impact their health are needed to manage cancer-related problems, especially breast cancer, and to meet the information needs and improve the quality of life of these patients [7].

Empowerment by building confidence and providing information to patients to take care of themselves improves population health and encourages healthy behaviors and helps prevent long-term illness [8]. According to studies, patients are interested in receiving information to help them understand cancer, make decisions about it, and manage their treatment, and patients' satisfaction with the information needs is related to perceived quality of care, quality of life, mental health, and health improvement. [9]. Researchers concluded that appropriate information is a prerequisite for informed decision making [10]. According to Husson et al., providing information to patients is one of the important factors in support of cancer care and leads to increased ability to cope with the disease and improve, prepare patients for treatment, and increase adherence to treatment [11]. Other researchers argued that all patients should have access to sufficient information to plan and respond to their problems and to change them [12].

On the other hand, results of systematic review studies show that 6 to 93% of cancer patients reported providing sufficient information as an unmet need [11]. Survivors have also been shown to have poor health-related quality of life 2 to 5 years after diagnosis with high levels of unmet needs. There has also been evidence of increased depression and anger caused by the disease [13].

 To address these challenges, it is necessary to provide awareness, knowledge, skills and motivation to make a positive impact on patients' health status [14]. In addition, providing patients with relevant information and tailored to their needs can help them understand the expected results and deal with unexpected outcomes [12]. On the other hand, understanding information needs is the first step in seeking information [15].

Patients with breast cancer have a great deal of information needs [16]. According to studies, the information provided to them eliminates their anxiety and helps them make decisions. The amount and type of information a person receives varies according to the patient's information needs based on the disease, its stage, the patient's age, their culture and beliefs. If patients are more informed and involved in decision making, the results of patient care will be better [17]. Various studies have been conducted around the world to address the information needs of patients with breast cancer in different dimensions, including information needs assessment of women over 65 [18], women over 75 [19], women with advanced breast cancer [20], women with chemotherapy-treated breast cancer [21], women with breast cancer surgery [22], women with newly diagnosed breast cancer [23], women with lymphedema [24], women with breast cancer undergoing radiotherapy [25], women with menopause [26], and women with mastectomy [27] which in addition to a number of common needs have reported specific and unique needs. In this study, the goal is to identify the information needs of all these groups, to take a step toward prioritizing, comparing and classifying the information needs and to create conditions for improving the information available to patients.

MATERIAL AND METHODS

This study is a systematic review in which English articles on information needs of breast cancer patients with keywords informational needs, information needs, breast cancer, breast neoplasm, cancer, patient, from 2010 to 2017 were searched. PubMed, ProQuest, Scopus and Science Direct were searched. The search strategy is shown in Table 1 and the search result is in PRISMA chart (Fig 1).

Table 1

Search strategy

PubMed, Science direct, Scopus, ProQuest
A1 informational needs
OR information needs
A2 breast cancer
OR breast neoplasm
OR cancer
A3 Patient
Strategy (A1 AND A2 AND A3)

Inclusion and exclusion criteria

Inclusion criteria included: Access to the full text of the articles, relevance to the subject, English language and publication in the 2010-2017 timeframe and were performed solely on patients with breast cancer. In this study, all quantitative and quantitative part of mixed methods (quantitative-qualitative) studies on patients' information needs were included. Articles that included breast cancer patients in addition to patients with other types of cancer, abstracts of conferences, a letter to the editor, as well as articles exploring the views of non-patient groups, articles in a language other than English and articles on men with breast cancer, qualitative studies, and review studies were excluded.

Data extraction and analysis

Data were extracted and analyzed in four stages. After screening the article titles, the abstracts were reviewed. Then, the full text of the articles was reviewed and the articles were included in the final analysis according to the inclusion and exclusion criteria. Data were extracted by two authors using a data extraction form. The variables studied in each article for data extraction were: title, author, year of publication, method, study population and findings.

fhi-9-e30-g001.jpg

Fig 1

The process of the selection of the relevant studies

RESULTS

A total of 2881 articles were retrieved from the databases. After eliminating duplicate and irrelevant articles based on title, abstract and full text evaluation, finally 18 articles related to the purpose of the study were selected (Fig 1). Based on the survey, 18 out of the 16 studies were quantitative (cross-sectional descriptive-) and two were mixed methods (quantitative-qualitative).

In terms of countries studied, studies conducted in Asia included 7 studies (38.9%), European countries 6 studies (33.3%), American continents 3 studies (16.7%) and Australia 2 studies (9.5%). In terms of the study publication year, there has been a steady trend between 2011 and 2012. It declined in 2013 and then increased between 2013 and 2015 and again slightly decreased in 2016 (Fig 2).

fhi-9-e30-g002.jpg

Fig 2

Publication trends by years

The full results of the literature review are presented in Table 2, classification of information needs; Table 3, information needs of women with breast cancer (Quantitative Studies) and Table 4, Information needs of women with breast cancer (Quantitative-Qualitative Studies).

According to studies, information needs were categorized into six general categories and several subcategories (Table 2). Diagnosis and treatment (18 studies), comprising the largest percentage of studies, and then daily activities were ranked second (10 Studies), disease acceptance and self- image ranked third (9 studies), personal and family life ranked fourth (7 studies) and sexual health ranked fifth (5 studies). Seven studies were categorized in the “other needs” group.

In the field of diagnosis and treatment, the need for information on outcomes and side effects has been emphasized in 9 studies (50%), which constitutes the largest number of studies. According to studies, the most frequently reported information needs of patients after adverse events, were treatment options, probability of recovery and treatment, progression of disease and treatment plan. Other needs are of lesser importance to patients, but as an information needs have been requested from patients (Table 2). In the domain of daily activities, the need for information on the impact of the disease on social activity and daily activity in seven studies (38.9%) and self-care in four studies (22.2%), in the area of ​​disease acceptance and self-image, the need for information in the field possibility of breast reconstruction, body appearance, prosthesis and need for counseling and phobia counseling in each of the five studies (27.8%) were most common. In the area of ​​personal and family life, requiring information on cancer risk for the family in four studies (22.2%) and in the area of ​​sexual health, the need for information on the impact of sexual attraction and emotion was emphasized in three studies (16.7%). These were the most frequently requested information reported in the studies.

Table 2

Classification of information needs by six general categories

The main classes of information needs Subcategories Frequency
Diagnosis and treatment Side effects of treatment (9 studies), Treatment options (6 studies), Likelihood of cure/ treatment (5 studies), Progress of disease, Treatment plan (Each one has 4 studies), Disease management, Managing lymphedema, Hereditary in breast cancer, Health promotion (Each one has 3 studies), Follow-up after treatment, Stages of disease, Nutrition during treatment, Skin care, Drug information, The effects of treatment on the body, Symptoms(Each one has 2 studies), Medical examination results, Emotions related to the situation, Measures of rehabilitation, Benefits of treatment, Quality of life, Clinical test, Diagnosis, The best approach to treatment, Risk of metastasis or recurrence, The best treatment, Prevention of postoperative problems, Fatigue management, Severe disability, Causes, Duration of the treatment, How to be ready for treatment, The reason for selected treatment, Why there are cameras and computers in the treatment room and what they are used for, The reason for radiation therapy, Symptoms and prevention of postoperative problems, Description of the treatment, X-rays importance for the treatment, What will happen after treatment, Complementary treatment, Signs and symptoms of lymphedema, Port catheter, Possible effects of the disease, Genetic counseling, Being a carrier, Risk of breast cancer, Lymphedema, Importance of lymphedema, What happens on the first day, Adverse effect of treatment, Help and support at home, Breast examination, Postoperative hospital and home care practices, Rehabilitation services, How effective the treatment has been for other patients (Each one has one studies) 18 studies
Daily activity Effects of breast cancer on occupational life, daily activity (7 studies), Home self-care (4 studies), Shoulder and arm exercises, Exercise and sport (3 studies), Healthy Life style (one study) 10 studies
Disease acceptance and self- image Breast reconstruction, Body image and appearance, Prosthesis, Psychological care during treatment, Coping with fears (5 studies),
Presence of support groups / Available consultations (4 studies), Physical/ psychosocial services, Physical/ psychosocial issues (2 studies)
9 studies
Personal and family life Risk of breast cancer for sisters or daughters (4 studies), Effect of disease on family and friends (3 studies), Breastfeeding capacity, Fertility (2 studies), Effect of treatment on usual social activities or personal life, Contraception (one study) 6 studies
Sexual health The effect of breast cancer on body and sexual attractiveness (2 studies), The effect of breast cancer on sexual activities, Sexual outcome of the disease, Information for partner, Difficulties in being aroused, Pain during intercourse, Written information on sexual alteration, Difficulties in reaching orgasm, Anxiety about sex , Sexual well-being across stages of care, Sex aids and products, Irregular menstruation, Sexual well-being for couples, Partner satisfaction, Increased sensitivity, Physical changes, Loss of sensation, Relationship communication, How to talk about sex and intimacy (one study) 5 studies
Other The cost of treatment (2 studies), Insurance, working age, Better therapeutic center, Being reinsured about the future, Financial problems, The name of radiation oncologist, The roles of the different staff in the department, Who can provide me with information, Parking, Contact person at the time of lymphedema, Physical burden, Relationship changes, Where to go for support, How to talk to health professionals, Loss of identity, Appointment, Vacations and travel (one study) 7 studies

Table 3

Information needs of women with breast cancer (Quantitative studies)

fhi-9-e30-g003.jpg

Table 4

Information needs of women with breast cancer (Mixed method studies)

fhi-9-e30-g004.jpg

DISCUSSION

Information needs arise because of dissatisfaction with the status quo or a defect in the knowledge of the individual. The information needs of breast cancer patients are related to different factors. The present study showed that the trend of studies on the information needs of patients with breast cancer was declining and relatively constant between 2011 and 2013 and then increasing between 2013 and 2015 and slightly decreased in 2016. According to the present study, most information needs of women with breast cancer were in the field of diagnosis and treatment, which was mentioned in 100% of the studies. In this area, information about side effects (50%), treatment options (33.3%) and the probability of recovery or treatment of the disease (27.8%) was higher than the others.

The present study showed that women with breast cancer, with any culture and language, with any age group or country of residence in terms of level of development, prioritize their information needs in the field of diagnosis and treatment. These patients, regardless of cancer progression (metastatic or non-metastatic), treatment stage (initiation or end of treatment), type of treatment (whether radiotherapy or chemotherapy or surgery) or occupation (whether they are employed or housewives), information about diagnosis and treatment is their most important information need, indicating the importance of this area and its subcategories among these patients. Previous studies have also addressed this issue [10, 19, 26- 40].

Other important results in this study are the importance of familiarizing with the side effects of treatment and medication, its management and control and familiarity with different treatment options. Most newly diagnosed patients, either those who have received the first course of treatment and those whose cancer has progressed or are undergoing radiotherapy, are interested in having information about side effects of the disease, treatment, medication, and treatment options [18, 40-47].

According to the present study, information needs in the area of ​​daily activities were ranked second. The most important sub-categories in this area are the impact of the disease on social activity, daily activity and self-care, and occupation during the illness was a concern for employed women. Previous studies have also addressed this issue [48-50]. Interruptions during recovery can increase the burden of the disease and respond to this need is very important in initiating treatment [32]. Among the different patient groups, literate and employed women and survivors at the age of menopause were among the groups whose information needs on complementary therapies was important [32, 51]. In the Miyashita study, only 25.2% of participants received information about dietary supplements and alternative diets [52]. Based on previous studies, information sources for alternative and complementary therapies are outside the medical system [53] and participants preferred not to receive this information from medical professionals, and one quarter of study participants reported unmet needs on alternative and complementary therapies [54]. Patients receive complementary and alternative therapies on the recommendation of family and friends without sufficient information about complementary therapies [55]. Therefore, providing evidence-based counseling on complementary alternatives to meet the patients’ needs and designing guidelines to assist and clarify evidence is essential [56].

Self-care education was another priority for patients. Self-care is the behaviors that individuals use to manage and improve their health [57]. Self-care education has a long-term impact on people's health status [58]. Chiaranai showed that better self-care leads to better quality of life [59]. Williams also showed in his study that self-care assessment can be learned and has a positive effect on the management of adverse events and the patients’ participation in effective self-care [60].

Another result of this study was the need for information on the possibility of breast reconstruction, body appearance and the need for consultation in this area. Previous studies have also shown that women have a high level of body image problems and emotional responsibilities [61]. Symptoms of traumatic stress are more frequent in young women with breast cancer, those receiving post-operative treatment, and those with low self-efficacy [62]. Discomfort with the diagnosis and treatment of breast cancer disrupts women's emotional well-being, family and work life and reduces their quality of life [63]. They avoid social environments because of concerns about questions and people's curiosity. Social support plays a major role in helping women with breast cancer [64] and if they have adequate social support, disease management will be easier for them [65]. The support they receive from nurses during the diagnosis and treatment of illness is also important [64].

 According to the present study, breast cancer survivors are concerned about the impact of the disease on sexual feelings and attractiveness, decreased sexual activity and sexual outcomes resulting from the disease, and are also keen to have information on identifying support sites and how to talk to specialists [20, 21, 34, 37, 44, 66]. The result was the opposite of Lei's study, which showed that information about sexual attraction and body image was not of concern to patients at the Malaya University Center [10]. The impact of sexual changes lasts long after successful treatment and is often accompanied by physical and emotional side effects [67]. Studies have shown that women with breast cancer have lower levels of sexual satisfaction than healthy women [68]. According to research, the strongest predictor of consistent sexual problems after breast cancer is low sexual attractiveness [69]. Women who have poor body image after breast cancer have lower sexual satisfaction and are more dissatisfied with their sex [68]. While sexual intimacy makes cancer experiences more manageable and contributes to the recovery process [70], and it serves as an important factor for spouse closeness and quality of life in palliative care [71]. In their study, Stabile found that 87% of patients with breast and genital cancers considered the role of sexual health important in quality of life, but most reported lack of information in this regard [72]. Li found in his study that sexual health information needs were lower in priority than diagnosis, disease spread, and improvement [20] with one exception, in which it was reported that sexual attraction for newly diagnosed Malaysian women with breast cancer was reported as the second most important information needs [73]. Also, in Takahashi's study, information on treatment-related sexual changes was the most important sexual information needs for Japanese women [74]. In Gould's study, young women with breast cancer showed significant unanswered information needs related to premature menopause and sexual dysfunction [75]. Ussher's study showed that a wide range of sexual health information is needed to meet the specific needs of people with breast cancer, and 78% of patients found it important to have information about the impact of treatment on sexual health [37]. In one Australian study, only 30% of couples received sex information, the majority of whom were dissatisfied [75] and in the Ussher’s study, two-thirds did not receive the information they needed [37].

Nurses and health professionals can play a key and important role in addressing concerns about sex after breast cancer [76] but most of them not talk about sexual intercourse because of a lack of knowledge or experience or not accepting it as one of their duties. Therefore, it seems necessary to reinforce the problem of education by professionals [37].

One of the strengths of this study was to investigate the information needs of women with breast cancer in different age, cultural, social, and therapeutic situations. In future studies, it is suggested to examine the information needs of the population of men with breast cancer.

CONCLUSION

Having information about diagnosis and treatment is one of the most important information needs of women with breast cancer and on the other hand, it seems that the information provided by physicians is not always responsive to patients' concerns. Therefore, the need for long-term education and support of breast cancer patients seems to be essential. Dedicated clinics and groups for patient education after diagnosis, creating a space for face-to-face question and answer with care providers, free and fast access to complete and accurate information, creating, organizing, managing and updating dedicated web pages and Internet web sites related to topics and counseling services to patients and their families on disease, treatment, nutrition, complications, and depression management can help patients obtain adequate and appropriate information and meet their information needs.

ACKNOWLEDGEMENT

This article is part of the Master thesis supported by Iran University of medical sciences (IUMS/SHMIS_ 95/9311304010). The research ethics committee of Iran University of medical science confirmed the proposal of this study (IR.IUMS.REC 1395.9311304010).

AUTHOR’S CONTRIBUTION

The authors agree on this final form of the manuscript, and attested that all authors contributed in the final draft of the manuscript. 

CONFLICTS OF INTEREST

The authors declare no conflicts of interest regarding the publication of this study.

FINANCIAL DISCLOSURE

This project has been conducted by a grant from cancer research center of cancer institute of Iran (Sohrabi cancer charity, Grant No: 37350-202-01-97).

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