Abstract
Purpose
To evaluate the impact of disclosure/nondisclosure of cancer diagnosis on patients’ posttraumatic stress symptoms (PTSS), posttraumatic growth (PTG), and quality of life (QOL).
Methods
Patients with primary hepatocellular carcinoma (HCC) who were admitted for potentially curative treatments in a teaching hospital were recruited. Patients were interviewed at admission regarding their QOL and their attitude towards disclosure of diagnosis. They were interviewed again for QOL, PTSS, and PTG at discharge and at 1 month after discharge.
Results
There were 300 patients recruited, 88.3% of whom preferred disclosure of cancer diagnosis. In fact, 162 patients (54.0%) received disclosure of their cancer diagnosis before discharge (disclosed group). However, for the 138 patients whose diagnoses were concealed by their families (uninformed group), 116 patients (84.1%) had learned of their diagnosis of HCC independently within 1 month after discharge. Comparing the scores at 1 month after discharge with scores at discharge showed that the PTSS score significantly declined for patients in the disclosed group and the PTG score significantly decreased for the uninformed patients at 1 month after discharge (p < 0.001 for both comparisons). Additionally, compared with the uninformed group, patients in the disclosed group had lower scores for PTSS (p < 0.001), higher scores for PTG (p < 0.001), better emotional functioning (p < 0.001), and better global QOL (p = 0.006) at 1 month after discharge.
Conclusions
Our findings indicate that concealing the diagnosis of cancer from patients is unlikely to succeed. Additionally, disclosure of diagnosis is beneficial for HCC patients in reducing PTSS and improving PTG and QOL.
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Acknowledgments
The authors sincerely appreciate the patients for their participation and cooperation.
Funding
This study is supported by the grant from the National Social Science Fund of China (No. 16BSH096).
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This study was approved by the Ethics Committee of the Third Military Medical University (approval no. S-16096).
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Appendix 1 The routine procedure of disclosure of cancer diagnosis in Chinese hospitals and the procedure of consent in this study
Appendix 1 The routine procedure of disclosure of cancer diagnosis in Chinese hospitals and the procedure of consent in this study
In Chinese hospitals, the patient’s family members act as legitimate agents to receive information and make decisions for patients. In addition, according to the China’s Law on Medical Practitioners, medical professionals are obligated to try to avoid adverse effects on patients when informing them about the disease, and the Law allows physicians to circumvent direct patient disclosure by telling the truth to the patient’s family.
When it is related to disclosure/nondisclosure of cancer diagnosis, Chinese healthcare professionals and researchers have a consensus, which is, asking the patient’s family’s opinion first. In detail, when the physicians have made the definitive diagnosis of cancer, the patients would be informed of the cancer diagnosis if they state that they would like to know and their family members agree to tell the truth. However, if the patient’s family members insist on concealing the cancer diagnosis from the patient, he/she would be informed of the diagnosis of benign disease, such as hepatic hemangioma or benign liver tumor in this study, which is a lie about diagnosis.
Regarding the consent for study, we talked to patients’ family members about our research and made it clear that we would respect their family decisions and take no intervention on them or on the patients. With the verbal consent of the patient’s family, we then talked to the patient. Considering for patients whose families made the decision of nondisclosure, we could not tell them that we were doing a research on cancer patients who were informed/uninformed of their diagnosis. Therefore, we told all of the possible participants that we were studying the quality of life (QOL) and psychological rehabilitation of patients undergoing liver surgery (They were really going to have liver surgery). We also told them that we would interview them and assess their QOL and psychological status by questionnaires. Then the patient signed a written informed consent form if he/she agreed to participate in our study.
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Jie, B., Zhou, YH., Qiu, Y. et al. Impact of the disclosure of diagnosis on posttraumatic stress and growth and quality of life in Chinese patients with hepatocellular carcinoma. Support Care Cancer 28, 3371–3379 (2020). https://doi.org/10.1007/s00520-019-05141-0
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DOI: https://doi.org/10.1007/s00520-019-05141-0