Examining the information and support needs of first-degree relatives of breast cancer patients

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 (n = 2, 4.9%) and support needs (n = 3, 7.3%). Breast screening examination (BSE) adherence was low; only eight FDRs (19.5%) performed monthly BSE. They expressed the need to receive guidance from health care professionals on the proper techniques of BSE. In conclusion, the findings underscored the need for effective avenues to empower FDRs with information and support so they can better support themselves and their loved ones. This is essential to help them cope with the cancer diagnosis of their loved ones, while simultaneously engaging in early screening and health-promoting measures toward betterment of their own quality of life and health outcomes.

Keywords

Family education first-degree relatives high-risk women information and support needs oncology nursing

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%, n = 28) and had at least a tertiary education (68.3%, n = 28).

Table 1.

Demographics and responses for the first four sections of the questionnaire (N = 41).

Demographics, family and health history	Number (%)
Age, mean ± SD	37.9 ± 10.4
Race
Chinese	28 (68.3)
Malay	9 (22.0)
Indian	2 (4.9)
Others	2 (4.9)
Marital status
Married	22 (53.7)
Widowed/Divorced	0 (0.0)
Single	19 (46.3)
Education level
Primary	0 (0.0)
Secondary	7 (17.1)
Tertiary and above	28 (68.3)
Trade certificate	6 (14.6)
Number of biological offspring
No child	24 (58.5)
One child	5 (12.2)
Two and above children	12 (29.3)
Age of first offspring, mean ± SD	16.5 ± 10.2
Number of relatives with breast cancer
One	33 (80.5)
More than one	8 (19.5)
Relationship with breast cancer patient ^a
Participant’s mother	31 (75.6)
Participant’s sister	9 (22.0)
Participant’s daughter	0 (0.0)
Relative’s survival of cancer at present ^b
Yes	34 (85.0)
No	6 (15.0)
Self-care practices	Number (%)
Breast self-examination practice frequency
More than once a month	0 (0.0)
Monthly	8 (19.5)
A few times a year	13 (31.7)
Once a year	5 (12.2)
Does not examine	15 (36.6)
Last clinical breast examination conducted
More than four years ago	6 (14.6)
Within four years	17 (41.5)
Never done one	18 (43.9)
Mammogram
Done before	14 (34.1)
Never had one	27 (65.9)
Perceived frequency of mammogram
Once yearly	20 (48.8)
Every two years	5 (12.2)
Do not need at this age	15 (36.6)
Perception and impact of the relative’s breast cancer	Number (%)
Impact of cancer diagnosis
4 (A great deal)	25 (61.0)
3 (Somewhat)	15 (36.6)
2 (A little)	1 (2.4)
1 (Not at all)	0 (0.0)
Perceived risk of getting breast cancer, mean ± SD^c	5.9 ± 2.1
Interest in genetic testing	Number (%)
Undecided	7 (17.1)
Definitely would not	4 (9.8)
Possibly	26 (63.4)
Definitely	4 (9.8)

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%; n = 25) ranked that the breast cancer diagnosis of their loved ones had a great impact on them. When asked on their perceived risk of contracting cancer from 0 to 10 (0 = will not get; 10 = 100% will get), the most frequently reported score was 5 with a mean of 5.9 (SD = 2.1). Despite the perception of their inherent risk, only 19.5% (n = 8) performed monthly breast screening examinations (BSEs). Among FDRs aged 50 years and older, all except one FDR were aware that mammograms should be conducted once every two years for women above age 50 years.¹³ As for genetic testing, a high proportion of FDRs (73.2%; n = 30) reported that they will “possibly” or “definitely” undergo a mammogram.

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).

Table 2.

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.

ISNQitem^a	Ranking in order of decreasing importance^b	Need	n ^c	Importance scale		Needs met scale
ISNQitem^a	Ranking in order of decreasing importance^b	Need	n ^c	Mean	SD	Mean	SD
1	10	Information on how to talk with my relative about her experience with breast cancer	41	3.34	0.76	2.79	1.06
2	5	Information about what causes breast cancer	41	3.49	0.64	2.51	1.05
3	1	Information about the treatments for breast cancer	41	3.73	0.50	3.15	0.75
4	12	Information about the emotional reactions of women who are newly diagnosed with breast cancer	41	3.29	0.81	2.44	1.05
5	11	Information about the emotional reactions and physical symptoms of women who are undergoing treatment for breast cancer	39	3.33	0.92	2.62	1.07
6	16	Information about how to talk with my family about my relative’s experience with breast cancer	41	3.10	0.92	2.53	0.98
7	9	Information about my own personal risk for breast cancer	40	3.35	0.83	2.31	0.92
8	23	Information about how to talk with my family about my risk for breast cancer	40	2.90	0.90	2.13	0.98
9	29	Information about my daughter’s risk for breast cancer	28	2.13	1.59	1.26	1.31
10	28	Information about how to talk with my children about their possible risks for breast cancer	29	2.15	1.61	1.38	1.37
11	7	Information about changes in my health habits that might lower my risk for breast cancer	41	3.37	0.73	2.23	1.14
12	2	Information about ways I can help to decrease my relative’s suffering from breast cancer	41	3.61	0.67	2.38	1.02
13	4	Information about how to support my relative during her experience with breast cancer	41	3.56	0.67	2.51	1.05
14	6	Information about possible risk factors for breast cancer	41	3.46	0.75	2.44	1.05
15	3	Information and demonstration of breast self-examination	40	3.60	0.74	2.95	1.00
16	13	Information about mammography screening	39	3.22	1.04	2.49	1.25
17	8	Information about how to change my behavior to promote my health	41	3.37	0.80	2.46	1.05
18	21	Information about genetic counselling for myself and my children	39	2.93	1.08	1.69	0.98
19	20	Reminders for mammography appointments	38	2.95	1.20	2.10	1.27
20	18	Reminders for breast self-examinations	39	3.02	1.08	1.74	1.12
21	14	Regular examinations of my breasts by a knowledgeable health professional	40	3.20	1.08	1.74	1.12
22	17	Support to help me carry out breast self-examination on a regular basis	40	3.02	1.01	1.84	1.00
23	15	Support to help me deal with my worries about my relative’s illness	41	3.12	1.01	1.82	0.96
24	22	Have a knowledgeable health professional watch me do breast self-examination and check whether I am doing it properly	37	2.90	1.02	1.64	0.93
25	19	Have someone to talk to about my worries about my relative with breast cancer	40	3.00	1.05	2.06	0.92
26	25	Have a group to attend for support	39	2.68	1.05	1.69	0.92
27	26	Support to help me “come to terms” with my feelings of risk for breast cancer	36	2.55	1.13	1.58	1.08
28	24	Support to help develop a “plan” if I should get breast cancer	38	2.83	1.11	1.76	1.10
29	27	Support to help me decrease my worries about getting breast cancer	38	2.55	1.22	1.44	1.07

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).

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