J Canc Educ DOI 10.1007/s13187-014-0665-3
Information Needs and Disclosure Preferences among Jordanian Women Diagnosed with Breast Cancer Rana Obeidat & Huthaifah I. Khrais
# Springer Science+Business Media New York 2014
Abstract To determine Jordanian women’s attitudes toward disclosure of breast cancer information and their information needs. A descriptive comparative research design was used in this study. A convenience sample of 156 Jordanian women who had a confirmed first time diagnosis of breast cancer within 18 months prior to the study and had treatment at three hospitals in Central and Northern Jordan was recruited for the study. A modified version of the Information Needs Questionnaire (INQ) was used for data collection. The vast majority of patients wanted to know whether the diagnosis was breast cancer (92 %) and the stage of the disease (78 %). Information about spread of the disease and chances of cure was of highest importance for the majority of the patients (88 % and 85 % respectively). Younger patients and those with higher education were more likely to express a preference for truthful disclosure of breast cancer diagnosis. The majority of Jordanian women wanted information about breast cancer diagnosis, chances of cure, and treatment side effects. Keywords Breast cancer . Information needs . Jordanian . Disclosure preferences
Introduction Breast cancer and its treatment could have considerable distressing consequences on both women and their families. Consequences on women’s lives could be physical (e.g., fatigue, pain) or psychological (e.g., anxiety, depression) and
R. Obeidat (*) : H. I. Khrais Faculty of Nursing, Zarqa University, Zarqa, Jordan e-mail: [email protected] H. I. Khrais e-mail: [email protected]
could ultimately affect women’s social lives (e.g., relationships, work). Lacking information and support puts women at increased risk for psychological distress, reduced sense of well-being, and dissatisfaction with care [1, 2]. Provision of information that’s tailored to patients’ individual needs has been identified as a beneficial intervention that may help women cope with breast cancer and make informed treatment decisions [1, 3, 4]. Thus, health care providers should assess patients’ preferences for information exchange beginning with the disclosure of the cancer diagnosis and its prognosis. Not asking questions may not always mean that patients don’t want to be educated about cancer or its treatment. Patients might not ask questions because they do not know what to ask or how to ask [5]. Also, health care providers should not make assumptions on patients’ preferences based on their age, gender, or cultural identity. For instance, Obeidat et al. [6], who reviewed studies of shared decision making among non-Western cancer patients, reported that non-Western physicians were inclined to conceal the news about cancer diagnosis and prognosis from their patients believing that patients preferred not to receive this news. Patients in the reviewed studies wanted to receive the news themselves not their families and they also wanted to receive information about cancer and treatment options. On the other hand, although information about cancer and cancer treatment is necessary for both patients and their families, the disclosure of detailed information may lead patients to disappointment and despair. Therefore, the determination of information types and ways of transfer is critical to maintain balance between what should be informed and what shouldn’t and achieve positive outcomes of information provision. Studies of information needs among breast cancer patients from different cultural groups have shown their priority information needs to include information about cure, spread of disease, treatment options, and side effects [7–10]. However, priority information needs of women with breast cancer may vary with
J Canc Educ
the variation in their cultural identity. For instance, in a study of information needs among women with breast cancer from UK and Malaysia, sexual attractiveness was of higher priority for Malaysian than English women [11]. Furthermore, several demographic and clinical characteristics (e.g., age, level of education, time since diagnosis) have been found to impact the amount and depth of information patients seek about breast cancer and its treatment [8]. In Jordan, cancer is the second leading cause of death after heart disease and breast cancer is the most common cancer among Jordanian women. In 2009, breast cancer accounted for almost 37 % of the new cancer cases among Jordanian women. However, to date, there are no published studies on Jordanian women’s information needs and their preferences for disclosure of breast cancer information. Thus, the purpose of this study was to determine Jordanian women’s attitudes toward disclosure of breast cancer information and their information needs.
from the study because they had surgery at private hospitals. Thus, the final sample was composed of 156 patients.
Data Collection Procedures
A descriptive comparative research design was used in this study. The data were collected through individual interviews using survey questionnaires by trained research assistants.
Ethical approval was granted for the study by the Institutional Review Board of each of the three clinical settings. Participants were recruited from the radiotherapy departments, and outpatient surgical and breast cancer clinics in the above mentioned settings. The study was introduced to possible eligible participants by the head nurses of units involved who also asked these participants for permission to be approached by the research team. Then, we approached possible eligible participants who granted us permission, gave them an explanation of the study purpose and procedures, invited them to join the study, and asked their permission to review their medical records to confirm their eligibility before the interview. Women meeting the study eligibility criteria and agreeing to participate were asked to complete a consent form and the study questionnaires via face-to-face semi-structured interviews in Arabic. Each interview lasted about 15–20 min. In addition, clinical data (e.g., date of diagnosis, stage of breast cancer, type of surgery) was obtained from medical records.
Study Population and Setting
Measures
Using convenience sampling, Jordanian women who consecutively attended three major clinical settings (teaching, cancer specialty center, and public hospital) between July 2013 and January 2014 were invited for the study. These settings were selected because they provide care to the majority of breast cancer patients in Jordan (i.e., more than 60 %). Inclusion criteria were (a) a confirmed first time diagnosis of breast cancer within 18 months; (b) no previous diagnosis with cancer, (c) ability to speak and read Arabic, and (d) having complete disclosure about the diagnosis. Sample size was calculated using G*Power 3.0 software (2008). Using a conventional power estimate of 0.80 with alpha set at 0.05, and a medium effect size, it was estimated that for a Chi square test with 4 degrees of freedom, 141 women would need to be approached. Due to anticipated non responses and to enhance the power of the study, additional women were recruited, for a total of 156 women. One hundred seventy-six patients diagnosed with breast cancer were approached to participate in the study; a total of 163 agreed and completed the questionnaires (response rate 91 %). Thirteen patients who met the study eligibility criteria declined because they were not interested in participating in research or did not want to talk about the disease. During the rechecking phase, we found the need to exclude seven patients
Women’s information needs were assessed using the Information Needs Questionnaire (INQ) [9, 12]. The INQ consists of nine items of information relating to physical, psychological, and social aspects of care and treatment. The questionnaire has good validity and reliability [13]. The INQ was translated from English into Arabic using the translation-backtranslation techniques [14, 15]. The instrument was translated by a native Arabic-speaking scholar (i.e., the principal investigator). The translated statements were then discussed by a panel of bilingual nurse researchers to assure the conceptual equivalency of the items into Arabic. Then, the Arabictranslated version was back-translated into English by another bilingual expert. Translation was verified by independent native English-speaking scholar for equivalence between the original and the back-translated instrument. The most conceptually relevant to the original version translation was piloted in a group of 10 Jordanian women with breast cancer to determine readability and understandability. Minor wording changes were made to the instrument in response to pilot participants’ feedback. Women were asked to indicate the importance of each of the items on a 5-point scale (ranging from 1=“not important at all” to 5=“extremely important”). Also, two questions about patients’ preferences of truth telling (i.e., disclosure of cancer diagnosis and prognosis) were
Methods
J Canc Educ
added to the questionnaire and asked at the end of the interview. Patients were also asked about reasons for their preferences. Demographic and clinical factors such as age, education, health insurance coverage, family history of breast cancer, and stage of breast cancer were collected using a researcherdesigned form.
Statistical Analysis Data were analyzed using SPSS 19.0 for Windows (SPSS, Inc., Chicago, IL, USA). Descriptive statistics were calculated to report demographic and clinical characteristics of the participants. Univariate statistical tests (e.g., Chi square, Pearson’s correlation) were performed to examine the association of demographic, disease, and treatment variables with the information needs and disclosure preferences.
Results Patients Characteristics Patients’ clinical and demographic characteristics are presented in Tables 1 and 2. Patients’ age ranged from 26 to 70 years with mean of 50.2 (SD, 10.5). Almost 55 % of the patients had public insurance. Cancer treatment expenses for about 33 % of patients were covered either by the Royal Jordanian Courts or the Prime Ministry. Most of the patients had high school education or less, were not employed, were diagnosed with stage II breast cancer at the time of diagnosis, and were treated with mastectomy. Only 23 % had family history of breast cancer. Table 1 Clinical characteristics of patients Characteristic
Number (%)
Treatment facility Public hospital Teaching hospital
50 (32) 56 (35.8)
Cancer specialty center Stage at diagnosis Stage 0 Stage I Stage II Stage III Stage IV Surgery type Lumpectomy Mastectomy Screening mammography before diagnosis Yes No
Table 2 Demographical characteristics of patients Characteristic Age Mean, SD Range Type of insurance Public Military Private Royal Jordanian Courts/Prime Ministry Education level High school or below Diploma Any university education Employment status Employed Not employed Marital status Single Married Divorced Widow Family history of breast cancer Yes No Patients have children Yes No Annual average income Less than 1,000 JD 1,000–1,999 JD 2,000–2,999 JD 3,000–3,999 JD 4,000- 4,999 JD More than 5,000 JD
Number (%)
50.2, 10.5 49 86 (54.8) 11 (7) 6 (3.8) 51 (32.5) 80 (51) 33 (21) 43 (27.4) 40 (25.5) 116 (73.9) 16 (10.2) 117 (74.5) 5 (3.2) 17 (10.8) 37 (23.6) 119 (75.8) 126 (80.3) 28 (17.8) 12 (7.6) 18 (11.5) 19 (12.1) 10 (6.4) 25 (15.9) 72 (45.9)
2 (1.3) 28 (17.8) 55 (35) 53 (33.8) 15 (9.6)
Patients treated at the public hospital were more likely to have less education than women who had treatment at the teaching hospital or the specialty cancer center (X2 =18.55, df=4, p
Information Needs and Disclosure Preferences among Jordanian Women Diagnosed with Breast Cancer Rana Obeidat & Huthaifah I. Khrais
# Springer Science+Business Media New York 2014
Abstract To determine Jordanian women’s attitudes toward disclosure of breast cancer information and their information needs. A descriptive comparative research design was used in this study. A convenience sample of 156 Jordanian women who had a confirmed first time diagnosis of breast cancer within 18 months prior to the study and had treatment at three hospitals in Central and Northern Jordan was recruited for the study. A modified version of the Information Needs Questionnaire (INQ) was used for data collection. The vast majority of patients wanted to know whether the diagnosis was breast cancer (92 %) and the stage of the disease (78 %). Information about spread of the disease and chances of cure was of highest importance for the majority of the patients (88 % and 85 % respectively). Younger patients and those with higher education were more likely to express a preference for truthful disclosure of breast cancer diagnosis. The majority of Jordanian women wanted information about breast cancer diagnosis, chances of cure, and treatment side effects. Keywords Breast cancer . Information needs . Jordanian . Disclosure preferences
Introduction Breast cancer and its treatment could have considerable distressing consequences on both women and their families. Consequences on women’s lives could be physical (e.g., fatigue, pain) or psychological (e.g., anxiety, depression) and
R. Obeidat (*) : H. I. Khrais Faculty of Nursing, Zarqa University, Zarqa, Jordan e-mail: [email protected] H. I. Khrais e-mail: [email protected]
could ultimately affect women’s social lives (e.g., relationships, work). Lacking information and support puts women at increased risk for psychological distress, reduced sense of well-being, and dissatisfaction with care [1, 2]. Provision of information that’s tailored to patients’ individual needs has been identified as a beneficial intervention that may help women cope with breast cancer and make informed treatment decisions [1, 3, 4]. Thus, health care providers should assess patients’ preferences for information exchange beginning with the disclosure of the cancer diagnosis and its prognosis. Not asking questions may not always mean that patients don’t want to be educated about cancer or its treatment. Patients might not ask questions because they do not know what to ask or how to ask [5]. Also, health care providers should not make assumptions on patients’ preferences based on their age, gender, or cultural identity. For instance, Obeidat et al. [6], who reviewed studies of shared decision making among non-Western cancer patients, reported that non-Western physicians were inclined to conceal the news about cancer diagnosis and prognosis from their patients believing that patients preferred not to receive this news. Patients in the reviewed studies wanted to receive the news themselves not their families and they also wanted to receive information about cancer and treatment options. On the other hand, although information about cancer and cancer treatment is necessary for both patients and their families, the disclosure of detailed information may lead patients to disappointment and despair. Therefore, the determination of information types and ways of transfer is critical to maintain balance between what should be informed and what shouldn’t and achieve positive outcomes of information provision. Studies of information needs among breast cancer patients from different cultural groups have shown their priority information needs to include information about cure, spread of disease, treatment options, and side effects [7–10]. However, priority information needs of women with breast cancer may vary with
J Canc Educ
the variation in their cultural identity. For instance, in a study of information needs among women with breast cancer from UK and Malaysia, sexual attractiveness was of higher priority for Malaysian than English women [11]. Furthermore, several demographic and clinical characteristics (e.g., age, level of education, time since diagnosis) have been found to impact the amount and depth of information patients seek about breast cancer and its treatment [8]. In Jordan, cancer is the second leading cause of death after heart disease and breast cancer is the most common cancer among Jordanian women. In 2009, breast cancer accounted for almost 37 % of the new cancer cases among Jordanian women. However, to date, there are no published studies on Jordanian women’s information needs and their preferences for disclosure of breast cancer information. Thus, the purpose of this study was to determine Jordanian women’s attitudes toward disclosure of breast cancer information and their information needs.
from the study because they had surgery at private hospitals. Thus, the final sample was composed of 156 patients.
Data Collection Procedures
A descriptive comparative research design was used in this study. The data were collected through individual interviews using survey questionnaires by trained research assistants.
Ethical approval was granted for the study by the Institutional Review Board of each of the three clinical settings. Participants were recruited from the radiotherapy departments, and outpatient surgical and breast cancer clinics in the above mentioned settings. The study was introduced to possible eligible participants by the head nurses of units involved who also asked these participants for permission to be approached by the research team. Then, we approached possible eligible participants who granted us permission, gave them an explanation of the study purpose and procedures, invited them to join the study, and asked their permission to review their medical records to confirm their eligibility before the interview. Women meeting the study eligibility criteria and agreeing to participate were asked to complete a consent form and the study questionnaires via face-to-face semi-structured interviews in Arabic. Each interview lasted about 15–20 min. In addition, clinical data (e.g., date of diagnosis, stage of breast cancer, type of surgery) was obtained from medical records.
Study Population and Setting
Measures
Using convenience sampling, Jordanian women who consecutively attended three major clinical settings (teaching, cancer specialty center, and public hospital) between July 2013 and January 2014 were invited for the study. These settings were selected because they provide care to the majority of breast cancer patients in Jordan (i.e., more than 60 %). Inclusion criteria were (a) a confirmed first time diagnosis of breast cancer within 18 months; (b) no previous diagnosis with cancer, (c) ability to speak and read Arabic, and (d) having complete disclosure about the diagnosis. Sample size was calculated using G*Power 3.0 software (2008). Using a conventional power estimate of 0.80 with alpha set at 0.05, and a medium effect size, it was estimated that for a Chi square test with 4 degrees of freedom, 141 women would need to be approached. Due to anticipated non responses and to enhance the power of the study, additional women were recruited, for a total of 156 women. One hundred seventy-six patients diagnosed with breast cancer were approached to participate in the study; a total of 163 agreed and completed the questionnaires (response rate 91 %). Thirteen patients who met the study eligibility criteria declined because they were not interested in participating in research or did not want to talk about the disease. During the rechecking phase, we found the need to exclude seven patients
Women’s information needs were assessed using the Information Needs Questionnaire (INQ) [9, 12]. The INQ consists of nine items of information relating to physical, psychological, and social aspects of care and treatment. The questionnaire has good validity and reliability [13]. The INQ was translated from English into Arabic using the translation-backtranslation techniques [14, 15]. The instrument was translated by a native Arabic-speaking scholar (i.e., the principal investigator). The translated statements were then discussed by a panel of bilingual nurse researchers to assure the conceptual equivalency of the items into Arabic. Then, the Arabictranslated version was back-translated into English by another bilingual expert. Translation was verified by independent native English-speaking scholar for equivalence between the original and the back-translated instrument. The most conceptually relevant to the original version translation was piloted in a group of 10 Jordanian women with breast cancer to determine readability and understandability. Minor wording changes were made to the instrument in response to pilot participants’ feedback. Women were asked to indicate the importance of each of the items on a 5-point scale (ranging from 1=“not important at all” to 5=“extremely important”). Also, two questions about patients’ preferences of truth telling (i.e., disclosure of cancer diagnosis and prognosis) were
Methods
J Canc Educ
added to the questionnaire and asked at the end of the interview. Patients were also asked about reasons for their preferences. Demographic and clinical factors such as age, education, health insurance coverage, family history of breast cancer, and stage of breast cancer were collected using a researcherdesigned form.
Statistical Analysis Data were analyzed using SPSS 19.0 for Windows (SPSS, Inc., Chicago, IL, USA). Descriptive statistics were calculated to report demographic and clinical characteristics of the participants. Univariate statistical tests (e.g., Chi square, Pearson’s correlation) were performed to examine the association of demographic, disease, and treatment variables with the information needs and disclosure preferences.
Results Patients Characteristics Patients’ clinical and demographic characteristics are presented in Tables 1 and 2. Patients’ age ranged from 26 to 70 years with mean of 50.2 (SD, 10.5). Almost 55 % of the patients had public insurance. Cancer treatment expenses for about 33 % of patients were covered either by the Royal Jordanian Courts or the Prime Ministry. Most of the patients had high school education or less, were not employed, were diagnosed with stage II breast cancer at the time of diagnosis, and were treated with mastectomy. Only 23 % had family history of breast cancer. Table 1 Clinical characteristics of patients Characteristic
Number (%)
Treatment facility Public hospital Teaching hospital
50 (32) 56 (35.8)
Cancer specialty center Stage at diagnosis Stage 0 Stage I Stage II Stage III Stage IV Surgery type Lumpectomy Mastectomy Screening mammography before diagnosis Yes No
Table 2 Demographical characteristics of patients Characteristic Age Mean, SD Range Type of insurance Public Military Private Royal Jordanian Courts/Prime Ministry Education level High school or below Diploma Any university education Employment status Employed Not employed Marital status Single Married Divorced Widow Family history of breast cancer Yes No Patients have children Yes No Annual average income Less than 1,000 JD 1,000–1,999 JD 2,000–2,999 JD 3,000–3,999 JD 4,000- 4,999 JD More than 5,000 JD
Number (%)
50.2, 10.5 49 86 (54.8) 11 (7) 6 (3.8) 51 (32.5) 80 (51) 33 (21) 43 (27.4) 40 (25.5) 116 (73.9) 16 (10.2) 117 (74.5) 5 (3.2) 17 (10.8) 37 (23.6) 119 (75.8) 126 (80.3) 28 (17.8) 12 (7.6) 18 (11.5) 19 (12.1) 10 (6.4) 25 (15.9) 72 (45.9)
2 (1.3) 28 (17.8) 55 (35) 53 (33.8) 15 (9.6)
Patients treated at the public hospital were more likely to have less education than women who had treatment at the teaching hospital or the specialty cancer center (X2 =18.55, df=4, p
