This study is to the best of our knowledge the first to assess the psychometric properties of the Chinese version of the FACT-Cx in Mainland China. It integrated quantitative and qualitative methods to place the statistical results in context, with the qualitative data adding depth and meaning to the quantitative results.
The personal interviews demonstrate that the Chinese version of the FACT-Cx, in terms of its understandability and administration, has acceptable feasibility. They however provide some insights into the distinct perspectives of Chinese women with cervical cancer concerning their reproductive ability. They were much less concerned about the loss of their reproductive ability than subjects in similar studies in the western world. The reason may be the “One Child Policy”, which has long been in force in Mainland China limiting Han ethnic Chinese couples to one child only. Most women have already borne a child before being diagnosed with cervical cancer, and thereby regardless of whether or not they were able to reproduce, they could not have another baby. Given these circumstances, it makes sense that item C6 “I have concerns about my ability to have children” appeared to have little significance for women in Mainland China, even though treatment for cervical cancer deprived their ability to have children. This differs from the views about loss of childbearing ability in western women with cervical cancer. Schover summarized the literature about the effects of cervical cancer treatment on sexuality and found that reproductive concerns were a major issue for survivors of cervical cancer. Their mental suffering arising from the loss of childbearing is substantial[24–26]. However, it is worth noting that all the ten women interviewed were one-child mother. In the following quantitative investigation, there was a significant difference in the score for the item related to reproductive ability between those with a child and those without. This indicated that the women without a child were concerned about their reproductive ability. Thus the findings apparently reflect a political decision and might change if the policy were changed.
The interviews also revealed that Chinese women tend to regard sexual issues as private. This was confirmed by the relatively low item response rates for sex-related items in the quantitative study. Chinese culture retains conservative values concerning sexual issues and is generally less sexually outspoken than western culture. Taoism, one major Chinese philosophy, suggests the regulation of sexual activities to preserve one’s health. A manifestation of this is the Chinese cultural belief that intimacy between close partners is more independent of sexual relations than it is in the West. Moreover, influenced by Chinese tradition in the long term, active sex is regarded by many people as the reason for the occurrence and progression of gynecological cancer. Thus patients are reluctant to talk to strangers about the “sensitive” topics such as sexuality. This may be the main underlying factor affecting their responses to sex-related items. Nevertheless, a caveat for clinical professionals providing healthcare for cervical cancer survivors in a Chinese context is in order. The hesitation to openly discuss the sexual problems does not mean that such problems are not experienced or that they may not be detrimental to women’s HRQOL. The findings from Zeng et al’s study showed that some Chinese survivors of cervical cancer defined the importance of their sex life and the harmony of the sexual relationship with their husband as one of the major indicators of their quality of life. In a study undertaken in Korea, anxiety about sexual performance was prevalent in cervical cancer survivors and dyspareunia was a major and distressing problem for women who received radiotherapy for cervical cancer. Although Chinese culture obscures understanding of patients’ true sexual concerns, professionals are expected to clarify the problems in this respect and find effective solutions. Thus how to improve Chinese women’s acceptability of the sex-related items within the subscale of the CCS is an important and challenging task. Additional work is required.
Although the personal interviews revealed some important clues about the properties of the instrument, given that the intent is to use this translation for measurement purposes, the psychometric tests provide evidence of the reliability and validity of the scale.
Essentially, internal consistency represents the average of the correlations among all the items in the measure. This implies that each item should correlate with the subscale score. The item-subscale correlations for all the items were acceptable except for item C6 (I have concerns about my ability to have children) in the CCS. Consistent with the results from the personal interviews, the item-subscale correlation for item C6 was lower than 0.2. It did not meet the acceptability requirement and seemingly should be omitted from the scale when used in a Chinese context[16, 17]. The alpha coefficient of the CCS without item C6 was actually a little higher than that of the CCS. However, 93.3% of the subjects already had children. They tended to have the same, or a similar, response to the item as in the personal interviews. There is a possible source of bias for the item, contributing to the low item-subscale correlation of item C6. Further investigation in a more representative sample including a sufficient number of childless women with cervical cancer is required to clarify the item’s adequacy in a Chinese cultural context.
The Cronbach’s alpha coefficient of the FACT-Cx was 0.88 and all the subscales were higher than 0.70 except for the CCS which was 0.57. This indicated that the FACT-Cx had good reliability whereas the CCS’s reliability was marginal. Likewise, other studies also found a relatively low Cronbach’s alpha coefficient for some cancer-site-specific subscales, such as the lung-cancer-specific subscale and breast-cancer-specific subscale[5, 13, 14]. The lung-cancer-specific subscale was 0.68 in a western cultural context in Cella et al’s investigation and 0.56 in a Chinese cultural context in Wan et al’s study. The breast-cancer-specific subscale was only 0.59 in a Chinese sample. One possible explanation for this may be that these subscales usually cover diverse aspects related to treatment, complications, side effects, and particular concerns, with the result that the items are not really related. The relative homogeneity of the sample probably also accounted for the low alpha value. Reliability involves the ratio of variability among subjects to total variability, thus conducting a test study on an extremely heterogeneous sample ensures good reliability of an instrument. Compared to the whole population of women with cervical cancer, the sample in this study was perhaps too homogeneous. Because the subjects were recruited from two top-grade university hospitals located in a big city in China, they tended to have higher education and higher income than the average. Furthermore the majority of the subjects were in an early stage of their disease. If more patients in the late stages were included and their financial status varied considerably, the internal consistency would probably improve.
The results of the factor analysis paralleled the original with two minor discrepancies. Item P6 “I feel ill” loaded on the EWB factor rather than on the PWB factor. From Chinese people’s perspectives, “someone feels ill” does not mean “someone is really ill” and rather reflects his/her feelings for his/her body. The item is thus highly relevant to EWB, an intuitively more attractive location for this item. Item E2 “I am satisfied with how I am coping with my illness” in the EWB subscale cross-loaded on the PWB, SFWB and FWB factors at similar factor loadings. The explanation may lie in that the extent to which a patient is satisfied with her coping with disease is largely determined by the consequences of her coping, as reflected in physical, social/family and functional wellbeing. If things go well in these three areas, the patient interprets it as the result of her successful coping and thereby feels satisfied.
A reliable and valid HRQOL instrument should be sensitive to clinical subgroups’ differences. It was hypothesized that the HRQOL questionnaire had the ability to differentiate between patients under active treatment and those who were not, patients with different levels of performance status, and patients at different stages of their disease. As anticipated, there was a significant difference in patients’ FACT-Cx scores between treatment and non-treatment groups, as well as in FACT-G, PWB and CCS scores. Furthermore, significant differences in the PWB, FWB, CCS, FACT-G and FACT-Cx, were also found among the five groups categorized by level of performance status. The results show that known-group validity is good in Chinese cultural context, consistent with the results in US women with cervical cancer. That implies that the FACT-Cx has adequate known-group validity cross-culturally. However, there was no significant difference in HRQOL among the patients at different cancer stages, except for EWB. One possible explanation, as mentioned above is that the sample was too homogeneous. The majority of subjects were at an early stage of their cancer and the differences in HRQOL among the groups at different stages were too small to be detected.
There are some limitations which need to be recognized. First of all, it is the representativeness of the sample. Provided that all the subjects were recruited from the two top-level hospitals in a big city, they tended to be better off in terms of socio-economic aspects. In addition the majority of the subjects were in an early stage of their disease. This may limit the generalizability of the findings. Secondly, the presence of the investigator may have improved the quality of responses, however it may also have influenced the patients’ choices, especially for some sensitive items, such as the sex-related items. There may also have been an effect from social desirability.