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ORIGINAL ARTICLE
Year : 2016  |  Volume : 53  |  Issue : 4  |  Page : 615-618
 

Disclosure of cancer information among Saudi cancer patients


Department of Internal Medicine Oncology, College of Medicine, University of Dammam, King Fahd Hospital of the University, Al-Khobar, Eastern Province, Kingdom of Saudi Arabia

Date of Web Publication21-Apr-2017

Correspondence Address:
AM Al-Amri
Department of Internal Medicine Oncology, College of Medicine, University of Dammam, King Fahd Hospital of the University, Al-Khobar, Eastern Province
Kingdom of Saudi Arabia
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/0019-509X.204771

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 » Abstract 

BACKGROUND: Cancer has been perceived as an incurable disease, and therefore, disclosure of cancer could harm patients. Therefore, the aim of this study was to explore Saudi cancer patients' views regarding disclosure of cancer information and the impact of gender, regions, and level of education on their desire to be disclosed of the diagnosis and prognosis. MATERIALS AND METHODS: A face-to-face interview was conducted during patient's evaluation at our hospital prior to their knowledge of being diagnosed with cancer. RESULTS: Of 420 patients, 97.62% wanted to know all information about cancer and more than 96% wished to know the benefits and side effects of chemotherapy. None of the patients wanted to be treated without knowing their diagnosis, and almost all of them (94.76%) wanted to know about the prognosis. Patients from eastern region and male patients wanted to know their diagnosis more frequently than those from other regions and female patients (98.2% vs. 74.47%, P = 0.001; 97.90% vs. 92.17%, P = 0.008, respectively). Patients from Eastern Province, male patients, and educated patients wished to know their prognosis more frequently than those from other regions, female patients, and illiterate patients (94.98% vs. 68.79%, P = 0.001; 94.74% vs. 86.09%, P = 0.003; and 94.23% vs. 98.58%, P = 0.016, respectively). CONCLUSION: This study indicates that almost all the Saudi cancer patients wanted to know about their cancer diagnosis, prognosis, benefits and side effects of chemotherapy. Regions, gender, and level of education may affect patient's desire for cancer information.


Keywords: Cancer, information, patients, Saudi


How to cite this article:
Al-Amri A. Disclosure of cancer information among Saudi cancer patients. Indian J Cancer 2016;53:615-8

How to cite this URL:
Al-Amri A. Disclosure of cancer information among Saudi cancer patients. Indian J Cancer [serial online] 2016 [cited 2019 Aug 24];53:615-8. Available from: http://www.indianjcancer.com/text.asp?2016/53/4/615/204771



 » Introduction Top


The four basic principles of ethics in medicine include autonomy, beneficence, non-malfeasance, and justice.[1],[2] Many factors could affect these principles, especially the principle of autonomy in our community since the relatives of cancer patients want to protect the patients from harmful and bad news and demean the right of patients to know the truth.

The process of telling cancer patients about their diagnosis and disclosure of bad news to them can be approached from three positions:First, the paternalism model, or non-disclosure, in which the doctors decide what is best for cancer patients; second, the individualized model, or flexible disclosure, in which the amount of information disclosed should be chosen and carefully selected according to patient's situation and need; and third is the consumerism model, or full disclosure, in which full information should be given to cancer patients as part of their right and autonomy.[3] This information should help them to participate in decision-making about management of their disease.

There was no clear and objective measure by which to convey the bad news and tell the truth to cancer patients since disclosing cancer diagnosis to patients could be brutal; however, telling truth should not be as long as patients will continue to suffer from symptoms and false and misleading information is prohibited.[3],[4]

In view of the dilemma between local culture, objections of relative not to tell the truth, and the need of cancer patients to know their diagnosis, options of treatment, benefits and adverse effects of chemotherapy, and the cancer prognosis, we conducted this study to assess Saudi cancer patients regarding their attitude, views, and opinions toward disclosure of cancer information.


 » Materials and Methods Top


For the purpose of this study, structured face-to-face interview was conducted after histological diagnosis of cancer was confirmed at our hospital. The nine interview questions were modified and constructed from Fallow field et al., Meredith et al., and Yun et al., as shown in [Table 2].[5],[6],[7] These questions examined Saudi cancer patients' attitude toward their views on how much information they wished to know about the diagnosis, prognosis, benefits and side effects of chemotherapy, if the disease proved malignant. All patients were Saudis, and both male and female were include in the study. The interviews were carried out after the cancer diagnosis had been made and proved at our hospital, but prior to patient's knowledge of their diagnosis. All patients were older than 18 years and younger than 85 years.
Table 2: Interview questions for cancer patients toward disclosure of cancer information

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The purpose of this study, as well as the different views and opinions in our yes Saudi community and the attitude of patients' relatives were first explained. The cancer patients were asked to project their views and express their desires and wishes clearly through face-to-face questions and answers. The interviewer explained in detail the objectives of the study, and addressed the questions raised by the patients and translated them to patient's language when needed. All cancer patients were allowed to reply “yes” or “no” without assistance, as thought to be appropriate and as the right thing to do by them.

Ethical consideration

The data collected in this study were taken during the time of admitting patients in our hospital as part of reviewing patients' history and clinical examination, or during medical oncology consultation after the diagnosis of cancer was confirmed and prior to patient's knowledge. All patients in this study gave oral consent and none of the patients refused to participate in the interview. In addition, the ethical committee in our hospital approved this study.

Statistical analysis

The Chi-square test was performed to find the association between two categorical variables in order to examine whether there was a significant difference between the answers of the Saudi cancer patients regarding disclosure of cancer diagnosis and prognosis based on their region of origin, gender, or level of education. The significance level was determined at ≤5%.


 » Results Top


In total, 420 Saudi cancer patients agreed to participate and the response rate was 100% even though participation was not obligatory. Almost 55% were female and 45% were male patients, and their mean age was 47 years with a range of 1885 years. Tow-third of the patients were from the Eastern Province and 22.86% were from Southern Province. The rest (10.71%) were from the other three provinces. Almost half were illiterate and 50% were literate. Of those who were literate, 35.71% were undergraduates and 14.77% had graduated from college. The patients were suffering from breast cancer, lymphoma, lung carcinoma, and other carcinomas (38.1%, 32.33%, 10.71%, and 27.86%, respectively). The demographic characteristics are shown in [Table 1]. The modified interview questions that were used to find the attitude of patients with cancer toward disclosure of cancer information are shown in [Table 2].
Table 1: Demographic characteristics of the patients (N=420)

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In [Table 3] is presented the responses of Saudi cancer patients to the interview questions.
Table 3: Responses of Saudi cancer patients to the questions during the interview

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It is clear from the first three questions that 99.29% wanted all or partial information and 97.62% wished to know all information. Only 0.71% did not want to know if they had cancer. The majority of patients (67.86%) wanted their family members to know and only 11.9% wanted their friends to know that they had cancer. Majority (96.43%) rejected the idea of chemotherapy without knowing the benefits and adverse effects of chemotherapy. All (100%) patients rejected the idea of treatment without their knowledge of diagnosis and 99.52% wanted to know the side effects of chemotherapy prior to treatment. About 95% of patients wanted to know the cancer prognosis, as reported in [Table 3].

Significant differences were found between the attitudes of cancer patients from the eastern region compared to cancer patients from other regions concerning the disclosure of diagnosis of cancer (98.2% vs. 74.4%, P = 0.001).

Significant differences were also found between the attitudes of male patients and female patients concerning the disclosure of diagnosis of cancer (97.90% vs. 92.17%, P = 0.008).

Educational level and type of cancer did not affect patients' attitude about disclosure of cancer diagnosis (96.15% vs. 96.7%, P = 0.76 and 96.88% vs. 97.53%, P = 0.79), as shown in [Table 4].
Table 4: Preference of Saudi cancer patients for disclosure and non-disclosure of cancer diagnosis

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Regarding cancer prognosis, patients from Eastern Province, Saudi male patients, and cancer patients with higher education wanted to know their prognosis significantly more frequently than those from other regions, female patients, and illiterate patients (94.98% vs. 68.97%, P = 0.001; 94.74% vs. 86.09%, P = 0.003; and 94.23% vs. 98.58% P = 0.016, respectively). There was no significant association between the type of cancer and attitude of patients toward disclosure of prognosis (98.13% vs. 97.96%, P = 0.45), as shown in [Table 5].
Table 5: Preference of Saudi cancer patients for disclosure and non-disclosure of cancer prognosis

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 » Discussion Top


Two published studies in which adult healthy Saudis were interviewed on their attitude and knowledge of cancer have shown that healthy people exhibit considerable degree of fear, anxiety, misperception, and belief that cancer is an untreatable disease and the authors recommended to promote health education for bringing awareness to the general population that cancer is a treatable disease.[8],[9] The attitudes of disclosure of cancer information are undergoing slow changes due to communication and globalization. However, one study from the Central Province has shown that only 50% of patients were told that they had cancer or tumor and 69% of patient's relatives were informed about the diagnosis of cancer.[8] Furthermore, another study from three major cities of Saudi Arabia reported that the majority of physicians (75%) wished to communicate with relatives rather than cancer patients and only 47% indicated they provided information on diagnosis and prognosis of serious illnesses to patients.[10]

In the current study, the focus was on the Saudi cancer patients' attitude toward disclosure of cancer diagnosis, prognosis, and the benefits and adverse effects of chemotherapy. It has shown that more than 97% of cancer patients wanted to know all information on cancer and this information to be disclosed to them and 1.67% wanted to know only partial information. Almost none (0.71%) of the Saudi cancer patients wanted the cancer information to be hidden. Those patients (2.38%) who wanted either partial information or no disclosure of their illness refused to be treated without knowing about their disease and they said it is better for other patients not to be told but for them they should be informed. According to a study conducted in Taiwan in 2004, only 7.7% of the participants preferred not to be told the truth and the majority (92.3%) of the participants preferred being told the truth about their diagnosis.[11]

A recent study from India, conducted in 2013, has reported that cancer patients exhibited a strong desire for information about illness and therapy and showed that 94% of cancer patients wanted to know if their illness was cancer and only 4% did not want to know if they had cancer.[12]

A similar study from the western region of Saudi Arabia has reported similar findings and showed that 85% of lay people preferred to disclose to newly diagnosed cancer patients about their cancer. However, the study reported that if they themselves were diagnosed with the malignant disease, 93% of these patients wanted to be informed about their cancer.[13]

In our study, the majority of the patients (68%) did not object to share the information with their family members and only 12% wanted to share the information with their friends.

This study has reporteda very important finding, which was that 100% of Saudi cancer patients refused and objected the idea of treatment without their knowledge and indicated that they should not be treated without being fully aware of their malignant disease status. It is worth noting that 96.43% wanted to know the benefits of chemotherapy and 99.52% wanted to know the adverse effects of chemotherapy. The majority of Saudi cancer patients (94.76%) preferred to know the prognosis of their condition.

An important finding of the current study was that 98% of Saudi cancer patients from the Eastern Province preferred disclosure of cancer diagnosis, whereas only 74% patients from other provinces preferred the same, and the difference was statistically significant (P = 0.001). In addition, we observed that male patients were in favor of disclosure of cancer diagnosis more significantly than female patients (P = 0.008). However, more than 92% of both genders wanted the diagnosis of cancer to be disclosed.

There was no significant effect of the level of education and the type of cancer on the attitude of Saudi cancer patients about disclosure of cancer diagnosis (P = 0.76 and P = 0.79, respectively). In addition, more than 96% of the respondents wanted to be informed about their diagnosis.

The prognosis should not be equated with or considered to be imminent death. The cancer patients need to be informed about their disease not about their death.

Regarding the disclosure of cancer prognosis, the present study showed that 95% of the cancer patients from the Eastern Province wanted to know the prognosis of their condition, in comparison to 68.79% of the cancer patients from other provinces, and the difference was statistically significant (P = 0.001). Male cancer patients (94.74%) were in favor of knowing the cancer prognosis more frequently than the female patients (86.09%), and the difference was significant (P = 0.003). Our study shows that educated patients had greater information needs than the illiterate patients, and almost 99% of cancer patients with higher education preferred to be informed about the prognosis of their cancer compared to illiterate cancer patients (94.23%), and the difference was statistically significant (P = 0.016). Anyhow, the majority of both groups (94%) wanted to know the prognosis of their condition.

In this study, there were no significant effects of the type of cancer on the Saudi cancer patients' desire to know the prognosis (P = 0.45) since 98% of them wanted to be informed.

Many studies have reported similar findings regarding disclosure of cancer information, and showed no significant differences between male and female, young, adult or elederly patients.[13],[16] Furthermore, other studies have shown that cancer patients were dissatisfied with the level of information they generally received.[17],[18]

Many people believe that control of information is the right thing to preserve patients' hopefulness. However, it is lack of good news and misleading information that increase the suspicion of serious diseases, which affects patient's mood and consequently their ability to take part in decision-making about their disease.[15],[18],[20]

All studies which have been focused on patients' attitude toward the right of cancer patients to know reported that cancer patients wanted to be told the truth and their desire was constant over time, indicating that patients with cancer would prefer to know and they are in need for disclosure of cancer information.[14]

The limitations of this study include its cross-sectional nature involving one specific point in time and this will not reflect patients' desire at other times, even though the trend of patients' desire to know about their cancer was constant and did not change since the beginning of this study in 2002.[25],[26] This is a single-center study, and a multicenter study would allow for more definite conclusion.

In summary, the study results, contrary to cultural and popular belief, strongly indicate that Saudi cancer patients have a strong desire to know about their cancer and treatment, and there is a need to tell them the truth and avoid giving out false information, and thus, it emphasizes patients' rights to know. Living with suspicious thought of cancer and suffering from unrelieved symptoms without good news, while being surrounded by anxious relatives will make death to happen even sooner. We recommend that no Saudi cancer patient should undergo surgical resection, radiotherapy, or chemotherapy without the patient's consent reflecting his awareness of the diagnosis, all options of therapy, benefits and expected complications of treatment as it might happen sometimes.

 
 » References Top

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    Tables

  [Table 1], [Table 2], [Table 3], [Table 4], [Table 5]



 

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