Abstract
Women with a family history of breast cancer, specifically among first-degree relatives (FDRs) such as daughter, mother and sister, face a two-fold higher risk of getting breast cancer than women with no family history. Current literature highlighted that these FDRs’ needs for factual information and emotional support were poorly met. Owing to a lack of local research, this cross-sectional survey study aimed to identify the information and support needs of FDRs of breast cancer women, their risk perception and self-care practices. Forty-one FDRs of breast cancer patients were recruited via convenience sampling. They completed a questionnaire comprising primarily the Information and Support Needs Questionnaire (ISNQ). In general they perceived information needs to be more important than support needs. The most important need identified was “information about breast cancer treatment.” Overall, only a few participants perceived that their needs were “met fully” both for information (
Keywords
Introduction
Breast cancer is the most common type of cancer diagnosed among Singaporean women. 1 Every year, more than 1.5 million women worldwide are diagnosed with breast cancer. 2 In Singapore, an estimate of one in three women were diagnosed with breast cancer between 2011 to 2015. 1 It is the most common cancer type among women, and accounts for the highest percentage of cancer deaths. 2 The key to successful treatment of breast cancer is early detection. 2 According to the American Cancer Society, the five-year survival rate declines as much as 20% from stage I to stage III and continues to decline rapidly as breast cancer proceeds to the next stage. 3
One of the major nonmodifiable risk factors is a family history of breast cancer, especially among first-degree relatives (FDRs), which refers to mother, sisters or daughters. 4 Women with family history of breast cancer have an estimated two-fold relative risk of developing breast cancer compared to those without. 4 Such inherent risk cause women to be fearful, anxious and distressed,5,6 which could result in an overestimation of their risk. 7 It was reported that women who are not well informed of their risk may engage in unnecessary investigation procedures and suffer emotional distress. 7
Current care management typically focuses on women who were diagnosed with breast cancer, not their FDRs who are at risk of developing breast cancer. This is despite indications from studies conducted outside of Singapore that FDRs desire more information on topics ranging from managing personal risk, preventive and health-promoting measures to treatment regimens.8–11 Owing to a dearth of research on this important aspect, both internationally and locally, more studies are required to understand the needs of the FDRs of breast cancer patients. It is crucial to fulfil the information and support needs of these high-risk FDRs to minimise the resultant emotional distress and empower them to take the necessary preventive measures. Therefore, this study aimed to: (a) identify the information and support needs of FDRs of breast cancer patients; and (b) to assess their perception of risk and self-care practices.
Methodology
This cross-sectional survey was conducted at Singapore General Hospital (SGH). Participants were recruited via information flyers available at SGH breast clinic and wards, as well as referrals from health care professionals (HCPs) caring for breast cancer patients who are relatives of the FDRs. The recruitment period was from August 2016 to August 2017.
A convenience sample of women who met the following inclusion criteria was recruited: (a) FDR whose mother, sister or daughter was newly diagnosed with breast cancer; (b) aged ⩾21 years; and (c) English speaking. FDRs who had been diagnosed with breast cancer or had benign breast lumps were excluded because of different baseline needs and health conditions.
A questionnaire consisting of the following five sections was administered to the FDRs:
family and health history,
breast self-care practices,
perception of the relative’s breast cancer,
interest in genetic testing, and
Information and Support Needs Questionnaire (ISNQ).
The ISNQ was developed and validated by Chalmers et al. to assess the information and support needs in FDRs of breast cancer patients. 12 The questionnaire has 18 items on information needs and 11 on support needs, rated using a four-point Likert scale on two scales. These two scales are the Importance Scale (response options 1 to 4 range from “not important” to “very important”) and Needs Met Scale (response options 1 to 4 range from “not met at all” to “fully met”). In addition, ISNQ examines how information and support needs had been met overall (response options 4 to 1 from “met fully” to “not met at all”). It also examines the women’s current and desired sources utilized for the fulfilling of their needs using a four-point Likert scale (ranging from “a lot” to “no information or support”).
Results
Forty-one FDRs participated and completed the survey with no drop-outs. Twenty FDRs declined to participate because they had no time or were not emotionally ready to discuss the topic. Data from sections 1 to 4 of the questionnaire are shown in Table 1. Mean age was 37.9 years old (SD = 10.4). The majority were Chinese (68.3%,
Demographics and responses for the first four sections of the questionnaire (
Percentage calculation was performed with total number of participants as denominator.
Missing data for one participant.
Scoring was performed on a Likert scale from 0 (will not get) to 10 (100% will get).
Most FDRs (61%;
Table 2 outlines the score of the 29 needs on the Importance Scale and Needs Met Scale of the ISNQ, ranked in decreasing order of importance. Among the 18 information needs, “Information about breast cancer treatment” was ranked as the most important. However, this need was only met fairly (mean 3.15; SD 0.75). Among the 11 support needs, FDRs identified “Regular examinations of my breasts by a knowledgeable HCP” as the most important (mean 3.20; SD 1.08), but was poorly met (mean 1.74; SD 1.12).
Scoring of each Information and Support Needs Questionnaire (ISNQ) item on the Importance Scale and Needs Met Scale with the corresponding ranking of the relative importance of each need.
Sequence of items is as reflected in the ISNQ. First 18 items are information needs and the latter 11 items (i.e. #19 onward) support needs.
Number ranking is in order of decreasing importance (i.e. first ranking is most important, 29th ranking is least important).
The number indicated for each item denotes the number of responses obtained (excluding missing field and the “not applicable” option).
FDRs perceived oncologists to be the most desired source of information and support. However, more than 70% of the FDRs reported receiving no or minimal information and support from the oncologists, leading to unmet expectations.
Discussion
The needs of the FDRs of breast cancer patients are an important aspect of cancer care management, yet they are often left unaddressed. This study found that as a whole, their needs for information and support were inadequately met, a finding that resonates with those of other studies.8–11 Between information and support needs, the FDRs ranked the former as more important, which is consistent with results from other studies as well. This suggests that FDRs require information most when dealing with the cancer diagnosis of their loved ones.8,9,11
“Information about breast cancer treatments” was ranked as the most important in this study, which agrees with the results of Andıç and Karayurt. 11 On the other hand, other studies reported information on personal risk, early screening and health-promoting practices as most important.8,9 For support needs, “regular breast examinations by health professionals” was ranked as the most important. This reflects the FDRs’ desire for active involvement of HCPs in their breast condition, which had also been highlighted in the literature.8,9
Given the increasing prevalence of breast cancer, FDRs must be empowered to practice early-detection measures. A mammogram is an effective screening tool that enables early detection to minimize the probability of undergoing more intensive cancer treatments, thus reducing mortality. 2 Most FDRs in this study were aware of the need to undergo a mammogram, implying the success of existing health-promoting efforts on mammograms. In contrast, BSE adherence was low; only 19.5% met the recommended frequency of monthly BSE for women aged 30 years and older. 13 Expectedly, BSE-related needs, such as “information and demonstration of BSE,” “reminders for BSE” and “support to help me carry out BSE on a regular basis” were reported to be insufficiently met, which may have contributed to FDRs’ low BSE adherence. BSE is one of the most effective early-detection measures, therefore FDRs should be empowered to conduct monthly BSE through education on the correct techniques. Future studies should examine reasons for noncompliance to monthly BSE and strategies to improve adherence.
Interestingly, a high proportion of FDRs in this study would consider genetic testing, potentially attributable to the relatively younger age of the FDRs studied. Studies showed that factors such as young age, high education level and high perceived risk were significantly correlated with uptake of genetic testing.14,15 However, another study reported that an initial high interest level may not translate to an actual high uptake because of the high cost of genetic testing and subsequent own insurability. 15 Therefore, in the future oncologists may consider assessing and educating FDRs on the need for genetic testing.
This study was limited by the small sample surveyed. However, this is the first study as far as we know that examines the FDRs’ needs in Singapore. Our study findings suggest that their needs were not met sufficiently. In SGH, there is a support group for breast cancer survivors and their loved ones, but the attendance of FDRs is poor. Therefore, there is a need to explore strategies to engage and increase their attendance in the support group. Essentially, a survey of a larger sample of FDRs is required to improve the generalizability of study findings. This can in turn enable HCPs to understand better and plan effective support and education programs for FDRs.
Conclusion
Health care providers are most ideally suited to fulfil the needs both of FDRs and their loved ones who are diagnosed with breast cancer. Care management should extend to FDRs by providing them accurate information and adequate support. This will facilitate both parties in coming to terms with the diagnosis, as well as reduce FDRs’ feelings of anxiety and distress arising from the perceived vulnerability to breast cancer.
There is a need to develop a platform for HCPs to engage the FDRs in discussing their risk and providing knowledge and support after the cancer diagnosis of their loved ones. FDRs are not only the pillar of support for their affected loved ones, but also to the health care system. Well-supported and empowered FDRs will allow for better decision making and greater engagement in health and self-care practices.
Footnotes
Acknowledgements
Authors would like to thank Associate Professor Yong Wei Sean for his advice, Ms Lee Zhao Mei Sharon, Ms Wu Liping, and Nursing Division of SGH for their support in this study. We would also like to thank Ms. Theresa Daphne Yong for her contribution in recruiting and data collection.
Funding
This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.
Availability of data and materials
The datasets generated during the current study are obtained from the written responses of the participants on a questionnaire.
Authors’ contributions
FA and SN researched literature, conceived the study and subsequently protocol planning and development. FA was involved in applying for ethical approval. YSL and NH were involved in patient recruitment and data collection. CSM was involved in data analysis. FA and CSM wrote the manuscript. All authors reviewed and edited the manuscript and approved the final version of the manuscript.
Conflict of interest
The authors declare that there is no conflict of interest.
Informed consent
Informed consent was taken and signed for every participant.
Ethical approval
Ethical approval for this study was obtained from the SingHealth Centralised Institutional Review Board (CIRB) (2015/2378).