Background
Body image reflects a multifaceted concept involving perceptions, thoughts, emotions, and behaviors regarding one’s appearance and physical functioning [
1]. It can be influenced by physical, psychological, and social functioning changes resulting from breast cancer treatment [
2]; from surgeries leaving disfigurations, scars, sensation alteration, and shoulder/arm functioning impairments [
3‐
5]; chemotherapy resulting in hair loss and weight gain [
6,
7]; radiotherapy leading to skin discoloration, dermatitis, and soreness of the treated area [
8]; and hormonal therapies causing premature menopause, body pains, and vasomotor symptoms [
9]. Disturbed body image is considered the key contributor of overall negative psychological states as well as poorer health-related quality of life [
4,
10‐
12]. Findings of a systematic review suggest that body image has become a complex posttreatment concern for female patients with breast cancer [
13].
In the context of breast cancer, the construct of body image is multidimensional. There are three characteristics of body image concept in patients with breast cancer: affective (feeling attractive and feminine), behavioral (avoiding people due to appearance), and cognitive (satisfaction with scars or appearance) [
14]. Additionally, body image after breast cancer also includes the characteristics of the mental image of one’s body, attitude about appearance and health state, and sexual functioning [
15]. A theoretical framework regarding body image in female patients with breast cancer, who underwent breast reconstruction, specifically involves aspects of perception, cognition, behavior, and emotion, which all link to the function of the body following breast cancer diagnosis and treatment [
16].
Although the complexity of body image in patients with breast cancer has been documented, various tools have been developed and applied to measure this complex issue among this patient population: the Body Image Avoidance Questionnaire (BIAQ) [
17], the Body Image Scale (BIS) [
14] and its modified Chinese version [
18], the Body Image after Breast Cancer Questionnaire (BIBCQ) [
19], the Body Image and Relationships Scale (BIRS) [
20], the Sexual Adjustment and Body Image Scale (SABIS) [
21], the Breast and Body Image Scale (BBIS) [
22], and the Body Image Psychological Inflexibility Scale (BIPIS) [
23]. These instruments evaluate body image from specific facets of body image characteristics after breast cancer, and some of them have been adapted into and validated in other language versions [
24‐
29].
However, few of these tools have considered the comprehensive characteristics of body image after breast cancer (e.g., affective, behavioral, cognitive, attitude, sexual functioning, perception, and emotion) in one questionnaire [
17,
20,
21,
23]. Since body image is people’s perception of the aesthetics or sexual attractiveness of their own body [
30], previously developed tools seem to place less emphasis on measuring body image from the patients’ viewpoint. Although these available tools were developed in other countries, and a few were modified into Chinese versions [
18,
24], a body-image evaluation instrument that is specific to Chinese mainland female patients with breast cancer has not been developed yet.
When developing new instruments, the Delphi technique is the most widely used method. It aims to obtain reliable consensus on a given topic through two to four consecutive rounds of a questionnaire survey with 10 to 30 experts [
31]. It is extremely useful in conditions where individual judgments must be tapped and combined to address a lack of agreement or incomplete knowledge. However, the Delphi technique alone may be somewhat inadequate in developing patient self-rated questionnaires, in that it lacks the feedback of the target population [
32]. Accordingly, conducting a pilot cross-sectional survey at the same time as the Delphi rounds might provide useful supplementary information from the target population, which can be further used in instrument development.
Drawing on the characteristics and theoretical framework regarding body image in the breast cancer context, we developed the Body Image Self-rating Questionnaire for Breast Cancer (BISQ-BC) in Chinese mainland patients with breast cancer via using the simultaneous application of the Delphi technique and a pilot cross-sectional survey. The study findings will provide evidence for body image evaluation in practice among patients with breast cancer.
Discussion
A self-rating body image questionnaire was developed for assessing body-image-related aspects among patients with breast cancer. The items contained in the established item pool were adjusted regarding body image characteristics [
14,
15], the theoretical framework of body image in a breast cancer context [
16], a literature review [
4,
13,
33,
34], and in-depth discussion among research team members. Combining the theoretical framework with research on body image in breast cancer settings led us to generate seven subscales reflecting body image from the viewpoint of female patients with breast cancer: psychological change, behavior change, arm functioning, sexual activity change, role change, self-cognition, and social change. This final measure specifically addressed the needs and concerns of Chinese mainland female patients with breast cancer by considering their culture, consulting with Chinese specialists working with breast cancer patients (i.e., Delphi method), and conducting a pilot cross-sectional survey with the target population.
The self-cognition regarding body image subscale was designed to reflect the general self-awareness of the patients on their own self-appearance [
1,
14]. It involves mind, satisfaction, belief, expression, being sexually charming, and certain parts of body concentration on body image. However, the items,
thinking of my nude self as sexually charming and
thinking that certain parts of my body should be hidden were excluded after the first-round survey because the experts considered the two items as less important; the latter also had poor validity. The item
feeling other people are looking at my chest was moved to the body-image-related psychological change subscale since it reflected more information about psychological alterations.
It has been widely acknowledged that patients with breast cancer show subsequent behavioral changes following a disruption of body image, including concealing their chest, avoiding changing clothes in public dressing rooms, avoid bathing in public showers, fear that other people are looking directly at their scar, and are concerned with the appearance of their chest [
4,
13,
14,
16,
34]. All these aspects were contained in the body-image-related behavior change subscale, except for two excluded items after the second-round survey due to unsupported validity assessment. Furthermore, one of the excluded items,
trying to hide my body while changing clothes alone, was deemed unnecessary by patients since they felt that it is unnecessary to conceal their body while changing clothes alone. The other excluded item,
trying to avoid looking directly at the surgical scar, was considered as having somewhat malicious connotations and thus led patients to become more anxious about their illness [
12].
Given that lymphedema, which is related to breast cancer, is a common and severe, adverse effect following surgery [
42], the body-image-related arm functioning subscale was devised to evaluate body image towards arm appearance, including normal arm feelings, satisfied arm appearance, and the influences of arm swelling and pain on daily living. After the first-round survey,
distressed with the appearance of my arm was excluded based on the recommendation of experts in that it may be not suitable to those patients who have bilateral breast cancer.
Sexual activity change is widely known as the most common adverse consequence following body image impairments in patients with breast cancer [
43]. The related changing activities in sexual life were assessed in the body-image-related sexual activity change subscale (e.g., a loss of feminine charm, avoiding close body contact, covering breasts during sex, sexual confidence/desire, and sex life quality). The items addressing these aspects showed valid results, except for one item:
trying to avoid close body contact with others (e.g.
, embrace), which moved to the body-image-related behavior change subscale since it is more likely a behavior alteration.
Based on published reports, patients with breast cancer also experience role changes after suffering from body image impairments including premature termination from work; inability to do preferred things; and role transformations in the family, at work, and in society [
44]. The items belonging to this subscale were appropriate; however, the item
body image change influences my role transformations in family, work, and society was revised to two additional items (i.e.,
body image change influences my original family role and
body image change influences my original work/social role) to clarify the point.
Since the body image concept involves perceptions, thoughts, and emotions [
1], psychological change has been reported as a key issue following body image alterations [
45]. In the subscale of body-image-related psychological change, feelings such as being concerned, comfortable, distressed, angry, satisfied, disappointed, and worried about body image were included. After the first-round survey, four items were excluded from this subscale, with two (i.e.,
angry with my own body and
satisfied with my vitality after my body image change) being regarded as unimportant by experts, one (i.e.,
body image change controls my body) being considered as difficult to understand by patients, and one (i.e.,
satisfied with the appearance of my reconstructed breast/prosthesis) being suggested as not appropriate for those who do not receive reconstructive surgery.
An additional item, body image change influences my feelings/attitudes on self-appearance, was recommended by experts and added to this subscale to evaluate the feelings/attitudes toward self-appearance following body image disturbances. It also had acceptable psychometric results in the second-round survey. Additionally, the item caring about treatment-related body image change was moved to the body-image-related behavior change subscale due to a higher correlation between them. Another item, feeling comfortable with my body image while exercising was revised to feeling uncomfortable about my body image and moved to the body-image-related role change subscale because of the higher correlation between them.
The last subscale, body-image-related social change, was devised to assess the influences of body image impairments on social change of patients with breast cancer [
16]. After the first-round survey, the items
trying to avoid participating in social activity and
limiting social activity due to body image change had acceptable psychometric properties. However, their descriptions were not easy understood by patients; therefore, they were revised to
trying to avoid participating in social activity due to body image change and
having to limit social activity due to body image change, respectively. Both were well validated in the second-round survey. Due to a higher correlation between the item
participating in routine activity as usual and the body-image-related role-change subscale, this item was rearranged to that subscale and revised as
I cannot participate in routine activity as usual due to body image change to clarify the point.
Following the experts’ recommendation, a new open question, “Having a sex life or not? (yes or no). If no, why?” was added to the end of the BISQ-BC. It was designed to obtain more information about impacts of body image alterations on patients’ sex life. This question is just used as a qualitative item and will not be included in the total score calculation.
This study had a major limitation. Given the small sample size of patients with breast cancer in both rounds of the pilot cross-sectional survey, we could only use internal consistency reliability and convergent/discriminant validity for item selection. Other item screening methods such as factor analysis should be conducted in the future with a larger sample size. Furthermore, if Cronbach’s α values of 0.70 and above are deemed acceptable, the internal consistency reliability of five of the subscales (i.e., self-cognition, change in behavior, arm functioning, sexual activity, and role) need to be further tested with larger sample sizes as their Cronbach’s α range was unsatisfactory (i.e., 0.62–0.69).