European Journal of Oncology Nursing 18 (2014) 46e51
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European Journal of Oncology Nursing journal homepage: www.elsevier.com/locate/ejon
Jordanian cancer patients’ information needs and information-seeking behaviour: A descriptive study Mohammad Al Qadire*,1 Faculty of Nursing, Al al-Bayt University, Mafraq 25113, Jordan
a b s t r a c t Keywords: Jordan Cancer Information Needs Adult Chronic
Background: Cancer diagnosis can leave patients with uncertainty and anxiety that can be reduced by providing timely information and effective communication. Despite information provision being highly important in improving the quality of provided care, no study had been conducted to assess the information needs of Jordanian cancer patients. Aim: To investigate the information needs of Jordanian cancer patients. Methods: A quantitative research method and a descriptive cross-sectional survey design were used. The sample consisted of 182 Jordanian cancer patients. Participants were recruited from two hospitals; one of them was a university hospital and the second was governmental hospital. Results: The mean age was 46.5 (SD 15.8 years); 52% of the sample were males. In addition, 38% of the patients had haematological tumours and 20% had gastro-intestinal tumours. The majority (157) wanted information about cancer. The results showed that patients would like to know everything about their disease (mean ¼ 3.1, SD 0.9) and medical tests (mean ¼ 3.0, SD 1.0). The results also revealed that younger patients, those who were working, and those with a high income had high information needs. However, patients who had reached the stage of palliative care seemed to require a lesser amount of information than those in the early stage of treatment. Conclusions: Many factors may cause variations in patients’ information-seeking behaviour. Therefore, a notational policy for information provision is needed to satisfy different patients’ information needs. Healthcare providers should be aware that cancer patients’ will continue to need information at all stages. Ó 2013 Elsevier Ltd. All rights reserved.
Introduction Providing patients with information regarding their diagnosis, prognosis and treatment options is increasingly considered crucial (Ankem, 2006; Tsuchiya and Horn, 2009). Cancer patients are in need for ongoing information (diagnosis, treatment, posttreatment, re-occurrence, and end of life) (Rutten et al., 2005). This is because cancer patients’ information needs vary in amount and type throughout cancer trajectory. For example in the early stages of diagnoses, patients sought information about disease, available treatment options and prognosis while in the late stages they are usually interested in more information about pain and other symptoms management (Matsuyama et al., 2012; Rutten
* Tel.: þ962 2 6297000x2858; fax: þ962 2 6297052. E-mail addresses: [email protected], mohammadqadire@ aabu.edu.jo. 1 Al Ghad International Collages for Health sciences, Male Branch-Riyadh, Kingdom of Saudi Arabia. Tel.: þ966 11 2120178; fax: þ966 11 212098. 1462-3889/$ e see front matter Ó 2013 Elsevier Ltd. All rights reserved. http://dx.doi.org/10.1016/j.ejon.2013.09.007
et al., 2005). Cancer diagnosis can leave patients with uncertainty and anxiety that can be reduced by providing timely information and effective communication. Giving patients information is believed to help them in coping with cancer (Ankem, 2006; Tsuchiya and Horn, 2009). In addition, information provision for cancer patients would reduce mood disturbances, deterioration in their quality of life, and improve communication with their families (Arora et al., 2002; Rainey, 2006). Previous researchers have indicated that patients wanted to know about their disease (Browall et al., 2004; Morrison et al., 2012; Tsuchiya and Horn, 2009). For example, a study was conducted in the US to evaluate cancer patients’ information needs during the first months of their treatment (Matsuyama et al., 2012). The Toronto Informational Needs Questionnaire (TINQ) was used to survey 138 cancer patients. The study findings indicated that total information needs fluctuated during a nine-month period, although remaining high. In addition, most patients wanted to know “everything” about bad news (96%), side effects (96%), and bad prognosis (90%) (Matsuyama et al., 2012). A low percentage of
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participants chose the rating items “nothing” or “not very much” (3%). Finally, it was found that females, younger patients, patients with a low education level, and married patients had high information needs (Matsuyama et al., 2012). A systematic review was conducted to summarize and evaluate research conducted in the area of cancer patients’ information needs (Rutten et al., 2005). The main aim of this review was to identify the type of information needed and the source of the received information. This review examined 112 studies that were published in the period from 1980 to 2003 (Rutten et al., 2005). It was found that patients mostly wanted information specific to their disease, treatment, side effects, prognosis and rehabilitation after treatment (Rutten et al., 2005). Further, the most frequently expressed information needs were related to cancer treatment (this was reported by 38% of the reviewed studies), followed by information related to specific cancer type. Five sources of information were recognized: healthcare providers, printed materials, media, organizational and scientific resources. Of these resources, healthcare providers, physicians (43%) and nurses (28%) were most frequently reported as the source of information, followed by printed materials (Rutten et al., 2005). This systemic review provided reliable evidence; it was comprehensive in its scope and was well conducted. However, more detailed information on research quality would be helpful, including the studies’ credibility and validity of their findings. Finally, this review recommended continuing the work in this area, conducting studies with a large and representative sample, and including patients with various types of cancer (Rutten et al., 2005). It also recommended paying more attention to the information needs of patients after treatment, relapse and at the end of life stage (Rutten et al., 2005). A recent study was conducted to explore the unmet needs of cancer patients (Morrison et al., 2012). The authors used selfreporting questionnaires containing 80 items thought to be relevant needs of cancer patients and 378 patients completed the questionnaire (Morrison et al., 2012). The findings revealed that informational needs about cancer, its treatment and side effects topped the list of unmet needs (Morrison et al., 2012). However, studies conducted since 2003 (Ankem, 2006; Cox et al., 2006; Galarce et al., 2011; Matsuyama et al., 2011; Morrison et al., 2012) to explore cancer information needs agreed with what was reported in Rutten et al. (2005). These studies show that cancer patients wanted to have detailed information about cancer, treatment, treatment side effects, prognosis, ability to work, and financial matters (Ankem, 2006; Cox et al., 2006; Galarce et al., 2011; Matsuyama et al., 2011; Morrison et al., 2012). Most were conducted in western countries (Ankem, 2006; Cox et al., 2006; Galarce et al., 2011; Matsuyama et al., 2011; Morrison et al., 2012) and a few in China (Lee et al., 2004) and Japan (Tsuchiya and Horn, 2009), but no study addressed this topic in Jordan. Patients’ demographics and clinical characteristics could affect the amount and type of information needed by cancer patients (Ankem, 2006). This may help healthcare providers to predict patients with high informational needs and other who need lesser amount of information (Ankem, 2006). Thus, increasing patients satisfaction and avoid causing unnecessary anxiety and fear for those patients who need less or no information about their disease (Ankem, 2006; Cox et al., 2006). For example, there was a consensus among the studies that younger cancer patients wanted and sought more information than older patients (Ankem, 2006; Cox et al., 2006; Galarce et al., 2011; Jenkins et al., 2001). And patients with a high educational level tended to seek less information rather than those with a low educational level (Guidry et al., 1998; Matsuyama et al., 2012, 2011), although other studies reported contrary results regarding education level and information needs (Galarce et al., 2011; Mayer et al., 2007). In
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addition, it was reported that female cancer patients usually seek more information than males (Jenkins et al., 2001; Matsuyama et al., 2012; Mayer et al., 2007), Further, single patients required less information than married patients (Galarce et al., 2011; Matsuyama et al., 2012). Most of the previous work utilized cross-sectional surveys or longitudinal research designs conducted either prospectively or retrospectively. In addition, authors used a wide range of sample sizes, and although larger samples are recommended, some studies used only a small number of cancer patients (Mallinger et al., 2005; Matsuyama et al., 2012; McGregor, 2003; Pinnock and Jones, 2003). This would limit the generalizability of the findings to the settings in which they were conducted. Furthermore, a large proportion of the studies used wide range of non-validated instruments, which would limit the utility of the comparison between different settings or even cultures (Western vs. Eastern) and would also add another threat to their internal validity. Despite communication and information provision being highly important in improving the quality of provided care for cancer patients, the review of current literature revealed that no study had been conducted to assess the information needs of Jordanian cancer patients. Also, there is need for a study that includes cancer patients from different stages in the continuum of care (diagnosis, treatment, post-treatment, relapse and end of life) rather than only focussing on the first two stages. Further, patients with different types of cancer should be recruited to give a comprehensive understanding of their information needs. Therefore, this study aims to investigate the information needs of Jordanian cancer patients. Methods Objective The main objective of this study is to investigate the information needs of Jordanian cancer patients, by answering the following specific research questions: 1 How much information do Jordanian cancer patients need? 2 What is the type of information needed by Jordanian cancer patients? 3 What are the sources of information provision for cancer patients in Jordan? 4 What are the predictors of high information needs among Jordanian cancer patients? 5 Are Jordanian cancer patients satisfied with the amount and type of information they have been given?
Design A quantitative research method and a descriptive crosssectional survey design were used. A survey design is useful when exploring attitudes, beliefs and knowledge-related topics, and a descriptive design is appropriate for this study because there is no intention to examine any cause-and-effect relationship (Gerrish and Lacey, 2010). In addition, it is useful when the researcher has limited financial resources (Gerrish and Lacey, 2010). Sample The sample consisted of 182 Jordanian cancer patients. Patients who met the inclusion criteria were invited to take part in this study. Hence, the researcher recruited only cancer patients who
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M. Al Qadire / European Journal of Oncology Nursing 18 (2014) 46e51
were: 18 years or older, have confirmed diagnosis of cancer, agreed to participate in the study, knew their cancer diagnosis (as evident from their medical file or responsible nurses’ testimony) and were physically able to complete the questionnaire. All patients who did not meet these criteria were excluded. During the period of data collection, 220 cancer patients were approached. Of this number 20 patients were not aware of their diagnosis, eight were acutely ill, and 10 refused to participate without providing any explanations. Hence, 182 patients were included in the study. Sample size Sample size was calculated based on the number of independent variables (m) in the regression model. For medium-sized relationships between the independent variables and the dependent or outcome variable, 5% significance and 80% power, the sample size (N) should satisfy both of the following (Tabachnick and Fidell, 2001):
N 50 þ 8m to test the overall significance of the model i:e: of R2
Table 1 Demographic characteristic of the patients. Variable Age 18e29 years 30e59 years 60 years Gender Male Female Marital status Married Not married (single, divorced and widowed) Highest level of education Low education (secondary school and below) High education (diploma and above) Work Working Not working Place of living City Village Monthly income Low (less than 600 JD) High (more than 600 JD)
Frequency (%) 31 (17) 106 (58) 45 (25) 95 (52) 87 (48) 135 (74) 47 (26) 140 (77) 42 (23) 45 (25) 137 (75) 117 (64) 65 (36) 172 (94) 10 (6)
N 104 þ m to test the significance of individual independent variables In this study, it was planned to allow up to 16 independent variables (based on previous studies) in the regression model, so N should be larger than both 50 þ 8*16 ¼ 178 and 104 þ 16 ¼ 120. As the number required in this study should therefore be larger than 178, the 182 patients who were included were believed to be an adequate sample. Settings This study was conducted in two settings. The first was a university hospital located in the north of the country and the second was a government hospital in the capital city of Amman. Both hospitals are tertiary healthcare centres. Oncology patients are usually treated in these hospitals, which have both in-patient and ambulatory oncology services. Instrument Arabic-Cancer Patients Information Needs Questionnaire (ArabicCPINQ) Development The CPIN was developed by the researcher based on previous literature such as (Ankem, 2006; Rutten et al., 2005) and based on the EORTC QLQ-INFO25 questionnaire (Arraras et al., 2010). The questionnaire starts with a brief introduction about its intent and instructions on what participant should do. The ArabicCPINQ consists of 22 items; patients were required to rate their need for information for each of 18 items on a numerical rating scale. This numerical rating scale comprises a 5-point horizontal line, ranging from 0 (no information needed) to 4 (very much). Patients were required to choose numbers that matched the strength of their desire to be informed. The questionnaire also contains three items requiring a dichotomous response (yes/no, satisfied/not satisfied) and one multiple choice question. In addition, participants were given space to express any informational needs that were not included in the questionnaire. This tool has four theoretical sub-scales: information about disease (sub-scale 1, items 1e4), information about medical tests (sub-
scale 2, items 5e7), information about treatment modules (subscale 3, items 8e14), and information about other available supportive services (sub-scale 4, items 15e18). It takes 10 min to complete. Validity and reliability The Arabic-CPINQ was given to three PhD holders who were expert in nursing and the medical field to validate its content, suitability, feasibility and layout. All the suggested changes were implemented and they agreed on its content validity and soundness for use within the Arabic-Islamic culture. In this study, the tool was tested for reliability; the Cronbach’s alpha for the total ArabicCPINQ was high at 0.96, and for sub-scales was also high as follows: sub-scale 1 ¼ 0.94, sub-scale 2 ¼ 0.93, sub-scale 3 ¼ 0.92, and subscale 4 ¼ 0.89. Information about patients’ demographic characteristics, such as gender, age, marital status, education level, economic status and place of residence, was collected. In addition, clinical information about cancer diagnosis such as type, stage, duration since diagnosis, type and stage of treatment was gathered. Data collection procedure The study started after obtaining the approval of the university and hospital ethics committees. The researcher conducted one visit each week at each hospital for the period February to May 2013. At each visit, the researcher asked each patient individually if he/she would like to participate in the study. Patients who agreed to participate were informed that completing the study questionnaire was an implicit agreement to their participation. All completed questionnaires were gathered by the researcher. Ethical considerations Ethical approval to conduct the study was obtained. In addition, participation in this study was voluntary and participants were allowed to withdraw at any time. Further, the identities of participants and the settings were not revealed; only aggregate data was reported. Finally, the completed questionnaires were accessed only by the researcher and all data were kept on a password-protected computer.
M. Al Qadire / European Journal of Oncology Nursing 18 (2014) 46e51 Table 2 Clinical characteristics of the patients. Variable Primary tumour Haematological Gastro-intestinal Breast Lung Bon Gynaecological Genito-urinary Brain Disease stage Early stage Advanced stage Time elapsed since diagnosis 12 months 13e23 months 24 months Type of treatment No treatment Chemotherapy Chemotherapy and surgery Others Treatment stage Treatment for the first time Post-treatment follow up Relapse (second time treatment) Palliative (no active treatment) Presence of family caregiver Yes No
Frequency (%) 70 37 25 20 9 8 8 5
(38) (20) (14) (11) (5) (4.5) (4.5) (3)
91 (50) 91 (50) 148 (82) 15 (8) 19 (10) 24 129 25 4
(13) (71) (14) (2)
90 48 27 17
(50) (26) (15) (9)
168 (92) 14 (8)
Data analysis Data were entered into the Statistical Package for the Social Sciences (SPSS) (version 17). Descriptive statistics such as mean, standard deviation (SD), percentages and frequencies were used to describe the sample characteristics (Malim and Birch, 1997). In addition, multiple-linear regression model was used to determine the factors that could influence patients’ information-seeking behaviour. Results Patients’ demographic and clinical characteristics The sample consisted of 182 Jordanian cancer patients. The mean age was 46.5 (SD 15.8 years); 52% of the samples were males (see Table 1). Most of the patients were married (74%), not working (75%), and poorly educated (77%). In addition, 38% of the patients have haematological tumours and 20% have gastro-intestinal tumours (see Table 2) and 71% of the patients reported receiving chemotherapy and half were at this stage of treatment for the first time. The majority (92%) have had a family caregiver during hospitalization. How much do patients need to know about their disease?
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Table 3 Mean of patients responses on the total and sub-scales of the patients’ information needs questionnaire. Do you need to know about your disease?
Mean (SDa)
No (N ¼ 25)
0.5 0.4 0.5 0.5 0.6 2.8 3.1 3.0 2.7 2.7
Yes (N ¼ 157)
a
Total Score Information Information Information Information Total score Information Information Information Information
about about about about
disease sub-scale medical tests sub-scale treatment sub-scale support services sub-scale
about about about about
disease sub-scale medical tests sub-scale treatment sub-scale support services sub-scale
Standard deviation.
What is the type of information needed? The results show that patients would like to know everything about their disease (mean ¼ 3.1, SD 0.9) and medical tests (mean ¼ 3.0, SD 1.0). In all items of the Arabic-CPINQ, patients had a mean score higher than 2, except for item no. 13 which asked if patients wanted information about the effects of cancer treatment on their sexual life (mean ¼ 1.8, SD 1.5). Cancer patients wanted to know if the disease was under control or not (mean ¼ 3.2, SD 1.0). In addition, they wanted to know the possible benefits of treatment (mean ¼ 3.2, SD 1.1), the results of their medical tests (mean ¼ 3.1, SD 1.0), and possible interventions that could improve their health status (mean ¼ 3.1, SD 1.1). Patients were able to write any type of information they felt they needed that was not mentioned in the questionnaire, but only 30 responded to this open-ended question; 10 responses actually repeated what had already been covered in the questionnaire. All the responses contained only two or three sentences. Simple content analysis shows that patients wanted to know if there was any possibility of a complete cure (11 patients) and 8 patients wanted more information about their prognosis. For example, one patient said: “I would like to know how long I might live after treatment; is it worth it?” These two items will be included in the new form of the ArabicCPINQ under the treatment sub-scale. Source and adequacy of the information provided Patients were asked to identify their primary and secondary sources of information. It was found that the majority of patients (85.5%) considered physicians as their primary source of information, with nurses (33%) next. Finally, 47% of patients did not identify any secondary source (see Table 4). With regard to information provision in practice, 86% of cancer patients reported receiving some information about the disease and 14% said they had received no information yet. However, 69% considered the information given to them was not adequate; 68% Table 4 Sources of the given information. Primary information source
Patients were asked if they would like to be fully informed about their disease or not. The majority (157) wanted information about cancer. For these patients the mean of the Arabic-CPINQ total score was high at 2.8 (SD 0.8) out of a maximum score of 4 (see Table 3). However, 25 patients did not want to be given any information about their disease, although they still demanded some type of information (the mean of Arabic-CPINQ total score was 0.5 (SD 0.8)). Overall, patients were found to have high information needs.
(0.8) (0.7) (1.0) (0.7) (0.9) (0.8) (0.9) (1.0) (0.9) (1.0)
Secondary information source
Source
Frequency (%)
Source
Frequency (%)
Physician
157(85.5)
85 (47)
Nurse Internet Other patients No source
8 2 1 14
No secondary source identified Nurse Physician Internet Pharmacist Social worker Other patients
(5) (1) (0.5) (8)
61 22 7 3 2 2
(33) (12) (4) (2) (1) (1)
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Table 5 Multiple linear regression analysis of factors influencing patients’ information needs.
(Constant) Place of treatment Age Monthly Income Working status Treatment stage (palliation and no active care stage)
B
Std. Error
3.94 0.40 0.02 0.79 0.58 0.76
0.35 0.15 0.01 0.33 0.17 0.26
Beta
P
95.0% confidence interval for B
0.17 0.27 0.16 0.22 0.19
0.000 0.008 0.000 0.017 0.002 0.004
3.260 to 4.623 0.701 to 0.108 0.029 to 0.010 0.142 to 0.451 0.222 to 0.929 1.272 to 0.243
Note: R2 ¼ 0.27.
were not satisfied and wanted more details to be provided by healthcare providers. Factors influencing information-seeking behaviour To identify factors (demographics and clinical) that affect information-seeking behaviour, multiple linear regression analysis was conducted (see Table 5). Place of treatment (hospital), age, monthly income, and being at the terminal treatment stage (only palliative therapy) were significantly correlated with informationseeking behaviour. Patients who were being treated in the government hospital required more information than patients in the university hospital. The results also revealed that younger patients, those who were working, and those with a high income have high information needs. However, patients who had reached the stage of palliative care (no active treatment) seemed to require a lesser amount of information than those in the early stage of treatment. Education level, gender, marital status, place of residence, primary tumour, disease stage and type of treatment were not significantly correlated with information needs (P > 0.5). Each one of these variables was entered separately into the regression model and they exerted no effect on the fitted model (B, Beta, and P values slightly changed). Discussion This study examined Jordanian cancer patients’ information needs and factors influencing information-seeking behaviour. The findings show that the information needs were high. Patients focused on information about the disease and medical tests rather than on information about treatment. This was partially consistent with previous studies (Browall et al., 2004; Lee et al., 2004; Leydon et al., 2000; Matsuyama et al., 2012). However, a systematic review concluded that previous studies reported that patients were mainly interested in treatment-related information (Rutten et al., 2005). This systematic review included studies that were published from 1980 to 2003. This was justified by the fact that most of recruited patients were at an early stage of active treatment of their cancer. In this current study, patients were from different phases in the continuum of care; this might justify the different patients’ interest; Matsuyama et al. (2012) suggested that the type of information needed by cancer patients changes as patients move from one phase to another. Jordanian cancer patients seem not to be interested in getting information about the effects of treatment on their sexual life. This was the lowest scored item (mean was 1.8 out of 4), a result congruent with that of Browall et al. (2004), who examined the information needs of women with ovarian cancer in a longitudinal study; their findings showed that sexual issues were the lowest ranked (Browall et al., 2004). However, other work had
contradictory results (Cox et al., 2006; Feldman-stewart et al., 2001; Wallberg, 2000). For example, an audit of UK cancer patients showed that they wanted to know about sexual issues, and 37% of them asked for multiple meetings with their healthcare providers to discuses sexual well-being (Cox et al., 2006). In Jordan, sex-related issues are culturally sensitive, and this might cause patients to avoid discussing or requesting such type of information. In addition, cancer patients focus on the disease process and treatment, which they might consider as more important than sexual matters. Age (younger), monthly income (600 JD), working status (working), and place of treatment (government hospital) were found to predict high information needs. However, patients who were at the palliative stage (no active treatment, just symptom palliation due to the extent of the disease) expressed lower information needs than patients in the early stages of cancer treatment. These results were consistent with previous work regarding age (Ankem, 2006; Jenkins et al., 2001; Rutten et al., 2005) and socioeconomic status (monthly income) (Mayer et al., 2007; Rutten et al., 2005). It should be indicated that a limited number of studies examined the influence of socio-economic status on information seeking behaviour, and forthcoming studies might need to take this issue into consideration. Working status and place of treatment (setting) seem not to have been examined in previous research. In this study, working patients reported higher information needs than non-working patients. This may be because they are worried about their career future, and of course losing work means no income. This could aggravate their anxiety and increase stress levels. Seeking and getting more information could decrease the uncertainty about their future and improve their ability to cope. With regard to place of treatment, it should be explained that the healthcare system in Jordan is simply divided into public and private sectors. Under the public sector umbrella there are government, university and royal medical services hospitals. Each of these implements different practice policy, procedures, and care provision guidelines. This variation in care provision might explain why patients in the government hospital demanded more information. Further research might be needed to follow up on this result and explore the factors that might cause this variation in information needs. The findings revealed that being in the terminal stage (no active treatment) predicts low information need, and this was consistent with previous studies (Ankem, 2006; Leydon et al., 2000; Matsuyama et al., 2012; Rutten et al., 2005). This might be because patients have lost hope, are depressed, and are overwhelmed by cancer-related symptoms in the later stages of cancer treatment. It might have implications for not overwhelming patients with information that they do not want. This study shows that physicians and nurses are considered as the main sources of information for Jordanian cancer patients. Similar findings have been reported previously, but the use of other sources was also reported, such as leaflets, booklets, and the Internet (Pinnock and Jones, 2003; Rees and Bath, 2001; Rutten et al., 2005; Wong et al., 2000). In Jordan, the use of these resources was limited, perhaps because hospitals do not provide patients with teaching materials, and not all patients are able to access the Internet. Finally, cancer patients were in agreement that the amount and type of information they were given was neither adequate nor satisfactory. The adequacy and satisfaction dimension was not included in previous studies, which limits comparison. Hence, there is a recommendation for studies exploring information needs to evaluate patients’ satisfaction with the information being given to them, in order to enhance our understanding of informationseeking behaviour. This dimension may take on extra importance in developing countries where the limited financial resources are
M. Al Qadire / European Journal of Oncology Nursing 18 (2014) 46e51
mainly directed toward cancer treatment and results, ignoring patients’ satisfaction. In a study that examined cancer patients’ satisfaction with the information they had been given, it was found that the patients were generally satisfied but wanted information to be more detailed on certain issues such as the effects of treatment, symptom management, and the availability of supportive resources (Llewellyn et al., 2006). There are a number of limitations to this study. First, the sample was recruited on the basis of convenience sampling; hence the participants who completed the survey might not entirely reflect the opinions of those who did not. Second, this study was conducted in only two hospitals. Most of the participants were poorly educated and have a low income, so the result cannot be generalized to the general population. Future researchers are recommended to use random sample selection to enhance their studies’ external validity. Finally, the questionnaire was not tested for readability on patients before embarking on the main study. This may threat study internal validity and limit patients’ ability to comprehend the questionnaire correctly. Implications for practice This study has identified factors that could predict high information need among cancer patients. Therefore, healthcare providers (physicians and nurses in particular) need to consider these factors in their clinical practice to ensure adequate information provision. In addition, it is recommended that healthcare settings provide cancer patients with booklets about the disease, its treatment, side effects, symptoms management, and other available supportive services. Conclusions This study demonstrated that information needs among Jordanian cancer patients were high and that patients were not satisfied with the information they had been given. Many factors may cause variations in patients’ information-seeking behaviour. Therefore, a notational policy for information provision is needed to satisfy different patients’ information needs. Finally, healthcare providers should be aware that patients’ information needs fluctuate throughout the stages of their cancer treatment, but that they will continue to need information at all stages. Conflict of interest statement The author did not have any potential conflicts of interest in the research reported. References Ankem, K., 2006. Factors influencing information needs among cancer patients: a meta-analysis. Library & Information Science Research 28, 7e23. Arora, N.K., Johnson, P., Gustafson, D.H., McTavish, F., Hawkins, R.P., Pingree, S., 2002. Barriers to information access, perceived health competence, and psychosocial health outcomes: test of a mediation model in a breast cancer sample. Patient Education and Counseling 47, 37e46. Arraras, J.I., Greimel, E., Sezer, O., Chie, W.-C., Bergenmar, M., Costantini, A., et al., 2010. An international validation study of the EORTC QLQ-INFO25
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questionnaire: an instrument to assess the information given to cancer patients. European Journal of Cancer 46, 2726e2738. Browall, M., Carlsson, M., Horvath, G.r., 2004. Information needs of women with recently diagnosed ovarian cancer a longitudinal study. European Journal of Oncology Nursing 8, 200e207. Cox, A., Jenkins, V., Catt, S., Langridge, C., Fallowfield, L., 2006. Information needs and experiences: an audit of UK cancer patients. European Journal of Oncology Nursing 10, 263e272. Feldman-stewart, D., Brundage, M., Nickel, J., Mackillop, W., 2001. The information required by patients with early-stage prostate cancer in choosing their treatment. BJU International 87, 218e223. Galarce, E.M., Ramanadhan, S., Weeks, J., Schneider, E.C., Gray, S.W., Viswanath, K., 2011. Class, race, ethnicity and information needs in post-treatment cancer patients. Patient Education and Counseling 85, 432e439. Gerrish, K., Lacey, A., 2010. The Research Process in Nursing. Wiley-Blackwell, London. Guidry, J.J., Aday, L.A., Zhang, D., Winn, R.J., 1998. Information sources and barriers to cancer treatment by racial/ethnic minority status of patients. Journal of Cancer Education 13, 43e48. Jenkins, V., Fallowfield, L., Saul, J., 2001. Information needs of patients with cancer: results from a large study in UK cancer centres. British Journal of Cancer 84, 48. Lee, Y.M., Francis, K., Walker, J., Lee, S.M., 2004. What are the information needs of Chinese breast cancer patients receiving chemotherapy? European Journal of Oncology Nursing 8, 224e233. Leydon, G.M., Boulton, M., Moynihan, C., Jones, A., Mossman, J., Boudioni, M., et al., 2000. Cancer patients’ information needs and information seeking behaviour: in depth interview study. British Medical Journal 320, 909e913. Llewellyn, C.D., McGurk, M., Weinman, J., 2006. How satisfied are head and neck cancer (HNC) patients with the information they receive pre-treatment? Results from the satisfaction with cancer information profile (SCIP). Oral Oncology 42, 726e734. Malim, T., Birch, A., 1997. Research Methods and Statistics. Macmillan Press, London. Mallinger, J.B., Griggs, J.J., Shields, C.G., 2005. Patient-centered care and breast cancer survivors satisfaction with information. Patient Education and Counseling 57, 342e349. Matsuyama, R.K., Kuhn, L.A., Molisani, A., Wilson-Genderson, M.C., 2012. Cancer patients information needs the first nine months after diagnosis. Patient Education and Counseling, 96e102. Matsuyama, R.K., Wilson-Genderson, M., Kuhn, L., Moghanaki, D., Vachhani, H., Paasche-Orlow, M., 2011. Education level, not health literacy, associated with information needs for patients with cancer. Patient Education and Counseling 85, e229ee236. Mayer, D.K., Terrin, N.C., Kreps, G.L., Menon, U., McCance, K., Parsons, S.K., et al., 2007. Cancer survivors information seeking behaviors: a comparison of survivors who do and do not seek information about cancer. Patient Education and Counseling 65, 342e350. McGregor, S., 2003. What information patients with localised prostate cancer hear and understand. Patient Education and Counseling 49, 273e278. Morrison, V., Henderson, B.J., Zinovieff, F., Davies, G., Cartmell, R., Hall, A., et al., 2012. Common, important, and unmet needs of cancer outpatients. European Journal of Oncology Nursing 16, 115e123. Pinnock, C.B., Jones, C., 2003. Meeting the information needs of Australian men with prostate cancer by way of the internet. Urology 61, 1198e1203. Rainey, L.C., 2006. Effects of preparatory patient education for radiation oncology patients. Cancer 56, 1056e1061. Rees, C.E., Bath, P.A., 2001. Information-seeking behaviors of women with breast cancer. Oncology Nursing Forum, 899. Rutten, L.J.F., Arora, N.K., Bakos, A.D., Aziz, N., Rowland, J., 2005. Information needs and sources of information among cancer patients: a systematic review of research (1980e2003). Patient Education and Counseling 57, 250e261. Tabachnick, B., Fidell, L., 2001. Using Multivariate Statistics, fourth ed. Allyn & Bacon, London. Tsuchiya, M., Horn, S.A., 2009. An exploration of unmet information needs among breast cancer patients in Japan: a qualitative study. European Journal of Cancer Care 18, 149e155. Wallberg, B., 2000. Information needs and preferences for participation in treatment decisions among Swedish breast cancer patients. Acta Oncologica 39, 467e476. Wong, F., Stewart, D.E., Dancey, J., Meana, M., McAndrews, M.P., Bunston, T., et al., 2000. Men with prostate cancer: influence of psychological factors on informational needs and decision making. Journal of Psychosomatic Research 49, 13e19.
Contents lists available at ScienceDirect
European Journal of Oncology Nursing journal homepage: www.elsevier.com/locate/ejon
Jordanian cancer patients’ information needs and information-seeking behaviour: A descriptive study Mohammad Al Qadire*,1 Faculty of Nursing, Al al-Bayt University, Mafraq 25113, Jordan
a b s t r a c t Keywords: Jordan Cancer Information Needs Adult Chronic
Background: Cancer diagnosis can leave patients with uncertainty and anxiety that can be reduced by providing timely information and effective communication. Despite information provision being highly important in improving the quality of provided care, no study had been conducted to assess the information needs of Jordanian cancer patients. Aim: To investigate the information needs of Jordanian cancer patients. Methods: A quantitative research method and a descriptive cross-sectional survey design were used. The sample consisted of 182 Jordanian cancer patients. Participants were recruited from two hospitals; one of them was a university hospital and the second was governmental hospital. Results: The mean age was 46.5 (SD 15.8 years); 52% of the sample were males. In addition, 38% of the patients had haematological tumours and 20% had gastro-intestinal tumours. The majority (157) wanted information about cancer. The results showed that patients would like to know everything about their disease (mean ¼ 3.1, SD 0.9) and medical tests (mean ¼ 3.0, SD 1.0). The results also revealed that younger patients, those who were working, and those with a high income had high information needs. However, patients who had reached the stage of palliative care seemed to require a lesser amount of information than those in the early stage of treatment. Conclusions: Many factors may cause variations in patients’ information-seeking behaviour. Therefore, a notational policy for information provision is needed to satisfy different patients’ information needs. Healthcare providers should be aware that cancer patients’ will continue to need information at all stages. Ó 2013 Elsevier Ltd. All rights reserved.
Introduction Providing patients with information regarding their diagnosis, prognosis and treatment options is increasingly considered crucial (Ankem, 2006; Tsuchiya and Horn, 2009). Cancer patients are in need for ongoing information (diagnosis, treatment, posttreatment, re-occurrence, and end of life) (Rutten et al., 2005). This is because cancer patients’ information needs vary in amount and type throughout cancer trajectory. For example in the early stages of diagnoses, patients sought information about disease, available treatment options and prognosis while in the late stages they are usually interested in more information about pain and other symptoms management (Matsuyama et al., 2012; Rutten
* Tel.: þ962 2 6297000x2858; fax: þ962 2 6297052. E-mail addresses: [email protected], mohammadqadire@ aabu.edu.jo. 1 Al Ghad International Collages for Health sciences, Male Branch-Riyadh, Kingdom of Saudi Arabia. Tel.: þ966 11 2120178; fax: þ966 11 212098. 1462-3889/$ e see front matter Ó 2013 Elsevier Ltd. All rights reserved. http://dx.doi.org/10.1016/j.ejon.2013.09.007
et al., 2005). Cancer diagnosis can leave patients with uncertainty and anxiety that can be reduced by providing timely information and effective communication. Giving patients information is believed to help them in coping with cancer (Ankem, 2006; Tsuchiya and Horn, 2009). In addition, information provision for cancer patients would reduce mood disturbances, deterioration in their quality of life, and improve communication with their families (Arora et al., 2002; Rainey, 2006). Previous researchers have indicated that patients wanted to know about their disease (Browall et al., 2004; Morrison et al., 2012; Tsuchiya and Horn, 2009). For example, a study was conducted in the US to evaluate cancer patients’ information needs during the first months of their treatment (Matsuyama et al., 2012). The Toronto Informational Needs Questionnaire (TINQ) was used to survey 138 cancer patients. The study findings indicated that total information needs fluctuated during a nine-month period, although remaining high. In addition, most patients wanted to know “everything” about bad news (96%), side effects (96%), and bad prognosis (90%) (Matsuyama et al., 2012). A low percentage of
M. Al Qadire / European Journal of Oncology Nursing 18 (2014) 46e51
participants chose the rating items “nothing” or “not very much” (3%). Finally, it was found that females, younger patients, patients with a low education level, and married patients had high information needs (Matsuyama et al., 2012). A systematic review was conducted to summarize and evaluate research conducted in the area of cancer patients’ information needs (Rutten et al., 2005). The main aim of this review was to identify the type of information needed and the source of the received information. This review examined 112 studies that were published in the period from 1980 to 2003 (Rutten et al., 2005). It was found that patients mostly wanted information specific to their disease, treatment, side effects, prognosis and rehabilitation after treatment (Rutten et al., 2005). Further, the most frequently expressed information needs were related to cancer treatment (this was reported by 38% of the reviewed studies), followed by information related to specific cancer type. Five sources of information were recognized: healthcare providers, printed materials, media, organizational and scientific resources. Of these resources, healthcare providers, physicians (43%) and nurses (28%) were most frequently reported as the source of information, followed by printed materials (Rutten et al., 2005). This systemic review provided reliable evidence; it was comprehensive in its scope and was well conducted. However, more detailed information on research quality would be helpful, including the studies’ credibility and validity of their findings. Finally, this review recommended continuing the work in this area, conducting studies with a large and representative sample, and including patients with various types of cancer (Rutten et al., 2005). It also recommended paying more attention to the information needs of patients after treatment, relapse and at the end of life stage (Rutten et al., 2005). A recent study was conducted to explore the unmet needs of cancer patients (Morrison et al., 2012). The authors used selfreporting questionnaires containing 80 items thought to be relevant needs of cancer patients and 378 patients completed the questionnaire (Morrison et al., 2012). The findings revealed that informational needs about cancer, its treatment and side effects topped the list of unmet needs (Morrison et al., 2012). However, studies conducted since 2003 (Ankem, 2006; Cox et al., 2006; Galarce et al., 2011; Matsuyama et al., 2011; Morrison et al., 2012) to explore cancer information needs agreed with what was reported in Rutten et al. (2005). These studies show that cancer patients wanted to have detailed information about cancer, treatment, treatment side effects, prognosis, ability to work, and financial matters (Ankem, 2006; Cox et al., 2006; Galarce et al., 2011; Matsuyama et al., 2011; Morrison et al., 2012). Most were conducted in western countries (Ankem, 2006; Cox et al., 2006; Galarce et al., 2011; Matsuyama et al., 2011; Morrison et al., 2012) and a few in China (Lee et al., 2004) and Japan (Tsuchiya and Horn, 2009), but no study addressed this topic in Jordan. Patients’ demographics and clinical characteristics could affect the amount and type of information needed by cancer patients (Ankem, 2006). This may help healthcare providers to predict patients with high informational needs and other who need lesser amount of information (Ankem, 2006). Thus, increasing patients satisfaction and avoid causing unnecessary anxiety and fear for those patients who need less or no information about their disease (Ankem, 2006; Cox et al., 2006). For example, there was a consensus among the studies that younger cancer patients wanted and sought more information than older patients (Ankem, 2006; Cox et al., 2006; Galarce et al., 2011; Jenkins et al., 2001). And patients with a high educational level tended to seek less information rather than those with a low educational level (Guidry et al., 1998; Matsuyama et al., 2012, 2011), although other studies reported contrary results regarding education level and information needs (Galarce et al., 2011; Mayer et al., 2007). In
47
addition, it was reported that female cancer patients usually seek more information than males (Jenkins et al., 2001; Matsuyama et al., 2012; Mayer et al., 2007), Further, single patients required less information than married patients (Galarce et al., 2011; Matsuyama et al., 2012). Most of the previous work utilized cross-sectional surveys or longitudinal research designs conducted either prospectively or retrospectively. In addition, authors used a wide range of sample sizes, and although larger samples are recommended, some studies used only a small number of cancer patients (Mallinger et al., 2005; Matsuyama et al., 2012; McGregor, 2003; Pinnock and Jones, 2003). This would limit the generalizability of the findings to the settings in which they were conducted. Furthermore, a large proportion of the studies used wide range of non-validated instruments, which would limit the utility of the comparison between different settings or even cultures (Western vs. Eastern) and would also add another threat to their internal validity. Despite communication and information provision being highly important in improving the quality of provided care for cancer patients, the review of current literature revealed that no study had been conducted to assess the information needs of Jordanian cancer patients. Also, there is need for a study that includes cancer patients from different stages in the continuum of care (diagnosis, treatment, post-treatment, relapse and end of life) rather than only focussing on the first two stages. Further, patients with different types of cancer should be recruited to give a comprehensive understanding of their information needs. Therefore, this study aims to investigate the information needs of Jordanian cancer patients. Methods Objective The main objective of this study is to investigate the information needs of Jordanian cancer patients, by answering the following specific research questions: 1 How much information do Jordanian cancer patients need? 2 What is the type of information needed by Jordanian cancer patients? 3 What are the sources of information provision for cancer patients in Jordan? 4 What are the predictors of high information needs among Jordanian cancer patients? 5 Are Jordanian cancer patients satisfied with the amount and type of information they have been given?
Design A quantitative research method and a descriptive crosssectional survey design were used. A survey design is useful when exploring attitudes, beliefs and knowledge-related topics, and a descriptive design is appropriate for this study because there is no intention to examine any cause-and-effect relationship (Gerrish and Lacey, 2010). In addition, it is useful when the researcher has limited financial resources (Gerrish and Lacey, 2010). Sample The sample consisted of 182 Jordanian cancer patients. Patients who met the inclusion criteria were invited to take part in this study. Hence, the researcher recruited only cancer patients who
48
M. Al Qadire / European Journal of Oncology Nursing 18 (2014) 46e51
were: 18 years or older, have confirmed diagnosis of cancer, agreed to participate in the study, knew their cancer diagnosis (as evident from their medical file or responsible nurses’ testimony) and were physically able to complete the questionnaire. All patients who did not meet these criteria were excluded. During the period of data collection, 220 cancer patients were approached. Of this number 20 patients were not aware of their diagnosis, eight were acutely ill, and 10 refused to participate without providing any explanations. Hence, 182 patients were included in the study. Sample size Sample size was calculated based on the number of independent variables (m) in the regression model. For medium-sized relationships between the independent variables and the dependent or outcome variable, 5% significance and 80% power, the sample size (N) should satisfy both of the following (Tabachnick and Fidell, 2001):
N 50 þ 8m to test the overall significance of the model i:e: of R2
Table 1 Demographic characteristic of the patients. Variable Age 18e29 years 30e59 years 60 years Gender Male Female Marital status Married Not married (single, divorced and widowed) Highest level of education Low education (secondary school and below) High education (diploma and above) Work Working Not working Place of living City Village Monthly income Low (less than 600 JD) High (more than 600 JD)
Frequency (%) 31 (17) 106 (58) 45 (25) 95 (52) 87 (48) 135 (74) 47 (26) 140 (77) 42 (23) 45 (25) 137 (75) 117 (64) 65 (36) 172 (94) 10 (6)
N 104 þ m to test the significance of individual independent variables In this study, it was planned to allow up to 16 independent variables (based on previous studies) in the regression model, so N should be larger than both 50 þ 8*16 ¼ 178 and 104 þ 16 ¼ 120. As the number required in this study should therefore be larger than 178, the 182 patients who were included were believed to be an adequate sample. Settings This study was conducted in two settings. The first was a university hospital located in the north of the country and the second was a government hospital in the capital city of Amman. Both hospitals are tertiary healthcare centres. Oncology patients are usually treated in these hospitals, which have both in-patient and ambulatory oncology services. Instrument Arabic-Cancer Patients Information Needs Questionnaire (ArabicCPINQ) Development The CPIN was developed by the researcher based on previous literature such as (Ankem, 2006; Rutten et al., 2005) and based on the EORTC QLQ-INFO25 questionnaire (Arraras et al., 2010). The questionnaire starts with a brief introduction about its intent and instructions on what participant should do. The ArabicCPINQ consists of 22 items; patients were required to rate their need for information for each of 18 items on a numerical rating scale. This numerical rating scale comprises a 5-point horizontal line, ranging from 0 (no information needed) to 4 (very much). Patients were required to choose numbers that matched the strength of their desire to be informed. The questionnaire also contains three items requiring a dichotomous response (yes/no, satisfied/not satisfied) and one multiple choice question. In addition, participants were given space to express any informational needs that were not included in the questionnaire. This tool has four theoretical sub-scales: information about disease (sub-scale 1, items 1e4), information about medical tests (sub-
scale 2, items 5e7), information about treatment modules (subscale 3, items 8e14), and information about other available supportive services (sub-scale 4, items 15e18). It takes 10 min to complete. Validity and reliability The Arabic-CPINQ was given to three PhD holders who were expert in nursing and the medical field to validate its content, suitability, feasibility and layout. All the suggested changes were implemented and they agreed on its content validity and soundness for use within the Arabic-Islamic culture. In this study, the tool was tested for reliability; the Cronbach’s alpha for the total ArabicCPINQ was high at 0.96, and for sub-scales was also high as follows: sub-scale 1 ¼ 0.94, sub-scale 2 ¼ 0.93, sub-scale 3 ¼ 0.92, and subscale 4 ¼ 0.89. Information about patients’ demographic characteristics, such as gender, age, marital status, education level, economic status and place of residence, was collected. In addition, clinical information about cancer diagnosis such as type, stage, duration since diagnosis, type and stage of treatment was gathered. Data collection procedure The study started after obtaining the approval of the university and hospital ethics committees. The researcher conducted one visit each week at each hospital for the period February to May 2013. At each visit, the researcher asked each patient individually if he/she would like to participate in the study. Patients who agreed to participate were informed that completing the study questionnaire was an implicit agreement to their participation. All completed questionnaires were gathered by the researcher. Ethical considerations Ethical approval to conduct the study was obtained. In addition, participation in this study was voluntary and participants were allowed to withdraw at any time. Further, the identities of participants and the settings were not revealed; only aggregate data was reported. Finally, the completed questionnaires were accessed only by the researcher and all data were kept on a password-protected computer.
M. Al Qadire / European Journal of Oncology Nursing 18 (2014) 46e51 Table 2 Clinical characteristics of the patients. Variable Primary tumour Haematological Gastro-intestinal Breast Lung Bon Gynaecological Genito-urinary Brain Disease stage Early stage Advanced stage Time elapsed since diagnosis 12 months 13e23 months 24 months Type of treatment No treatment Chemotherapy Chemotherapy and surgery Others Treatment stage Treatment for the first time Post-treatment follow up Relapse (second time treatment) Palliative (no active treatment) Presence of family caregiver Yes No
Frequency (%) 70 37 25 20 9 8 8 5
(38) (20) (14) (11) (5) (4.5) (4.5) (3)
91 (50) 91 (50) 148 (82) 15 (8) 19 (10) 24 129 25 4
(13) (71) (14) (2)
90 48 27 17
(50) (26) (15) (9)
168 (92) 14 (8)
Data analysis Data were entered into the Statistical Package for the Social Sciences (SPSS) (version 17). Descriptive statistics such as mean, standard deviation (SD), percentages and frequencies were used to describe the sample characteristics (Malim and Birch, 1997). In addition, multiple-linear regression model was used to determine the factors that could influence patients’ information-seeking behaviour. Results Patients’ demographic and clinical characteristics The sample consisted of 182 Jordanian cancer patients. The mean age was 46.5 (SD 15.8 years); 52% of the samples were males (see Table 1). Most of the patients were married (74%), not working (75%), and poorly educated (77%). In addition, 38% of the patients have haematological tumours and 20% have gastro-intestinal tumours (see Table 2) and 71% of the patients reported receiving chemotherapy and half were at this stage of treatment for the first time. The majority (92%) have had a family caregiver during hospitalization. How much do patients need to know about their disease?
49
Table 3 Mean of patients responses on the total and sub-scales of the patients’ information needs questionnaire. Do you need to know about your disease?
Mean (SDa)
No (N ¼ 25)
0.5 0.4 0.5 0.5 0.6 2.8 3.1 3.0 2.7 2.7
Yes (N ¼ 157)
a
Total Score Information Information Information Information Total score Information Information Information Information
about about about about
disease sub-scale medical tests sub-scale treatment sub-scale support services sub-scale
about about about about
disease sub-scale medical tests sub-scale treatment sub-scale support services sub-scale
Standard deviation.
What is the type of information needed? The results show that patients would like to know everything about their disease (mean ¼ 3.1, SD 0.9) and medical tests (mean ¼ 3.0, SD 1.0). In all items of the Arabic-CPINQ, patients had a mean score higher than 2, except for item no. 13 which asked if patients wanted information about the effects of cancer treatment on their sexual life (mean ¼ 1.8, SD 1.5). Cancer patients wanted to know if the disease was under control or not (mean ¼ 3.2, SD 1.0). In addition, they wanted to know the possible benefits of treatment (mean ¼ 3.2, SD 1.1), the results of their medical tests (mean ¼ 3.1, SD 1.0), and possible interventions that could improve their health status (mean ¼ 3.1, SD 1.1). Patients were able to write any type of information they felt they needed that was not mentioned in the questionnaire, but only 30 responded to this open-ended question; 10 responses actually repeated what had already been covered in the questionnaire. All the responses contained only two or three sentences. Simple content analysis shows that patients wanted to know if there was any possibility of a complete cure (11 patients) and 8 patients wanted more information about their prognosis. For example, one patient said: “I would like to know how long I might live after treatment; is it worth it?” These two items will be included in the new form of the ArabicCPINQ under the treatment sub-scale. Source and adequacy of the information provided Patients were asked to identify their primary and secondary sources of information. It was found that the majority of patients (85.5%) considered physicians as their primary source of information, with nurses (33%) next. Finally, 47% of patients did not identify any secondary source (see Table 4). With regard to information provision in practice, 86% of cancer patients reported receiving some information about the disease and 14% said they had received no information yet. However, 69% considered the information given to them was not adequate; 68% Table 4 Sources of the given information. Primary information source
Patients were asked if they would like to be fully informed about their disease or not. The majority (157) wanted information about cancer. For these patients the mean of the Arabic-CPINQ total score was high at 2.8 (SD 0.8) out of a maximum score of 4 (see Table 3). However, 25 patients did not want to be given any information about their disease, although they still demanded some type of information (the mean of Arabic-CPINQ total score was 0.5 (SD 0.8)). Overall, patients were found to have high information needs.
(0.8) (0.7) (1.0) (0.7) (0.9) (0.8) (0.9) (1.0) (0.9) (1.0)
Secondary information source
Source
Frequency (%)
Source
Frequency (%)
Physician
157(85.5)
85 (47)
Nurse Internet Other patients No source
8 2 1 14
No secondary source identified Nurse Physician Internet Pharmacist Social worker Other patients
(5) (1) (0.5) (8)
61 22 7 3 2 2
(33) (12) (4) (2) (1) (1)
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M. Al Qadire / European Journal of Oncology Nursing 18 (2014) 46e51
Table 5 Multiple linear regression analysis of factors influencing patients’ information needs.
(Constant) Place of treatment Age Monthly Income Working status Treatment stage (palliation and no active care stage)
B
Std. Error
3.94 0.40 0.02 0.79 0.58 0.76
0.35 0.15 0.01 0.33 0.17 0.26
Beta
P
95.0% confidence interval for B
0.17 0.27 0.16 0.22 0.19
0.000 0.008 0.000 0.017 0.002 0.004
3.260 to 4.623 0.701 to 0.108 0.029 to 0.010 0.142 to 0.451 0.222 to 0.929 1.272 to 0.243
Note: R2 ¼ 0.27.
were not satisfied and wanted more details to be provided by healthcare providers. Factors influencing information-seeking behaviour To identify factors (demographics and clinical) that affect information-seeking behaviour, multiple linear regression analysis was conducted (see Table 5). Place of treatment (hospital), age, monthly income, and being at the terminal treatment stage (only palliative therapy) were significantly correlated with informationseeking behaviour. Patients who were being treated in the government hospital required more information than patients in the university hospital. The results also revealed that younger patients, those who were working, and those with a high income have high information needs. However, patients who had reached the stage of palliative care (no active treatment) seemed to require a lesser amount of information than those in the early stage of treatment. Education level, gender, marital status, place of residence, primary tumour, disease stage and type of treatment were not significantly correlated with information needs (P > 0.5). Each one of these variables was entered separately into the regression model and they exerted no effect on the fitted model (B, Beta, and P values slightly changed). Discussion This study examined Jordanian cancer patients’ information needs and factors influencing information-seeking behaviour. The findings show that the information needs were high. Patients focused on information about the disease and medical tests rather than on information about treatment. This was partially consistent with previous studies (Browall et al., 2004; Lee et al., 2004; Leydon et al., 2000; Matsuyama et al., 2012). However, a systematic review concluded that previous studies reported that patients were mainly interested in treatment-related information (Rutten et al., 2005). This systematic review included studies that were published from 1980 to 2003. This was justified by the fact that most of recruited patients were at an early stage of active treatment of their cancer. In this current study, patients were from different phases in the continuum of care; this might justify the different patients’ interest; Matsuyama et al. (2012) suggested that the type of information needed by cancer patients changes as patients move from one phase to another. Jordanian cancer patients seem not to be interested in getting information about the effects of treatment on their sexual life. This was the lowest scored item (mean was 1.8 out of 4), a result congruent with that of Browall et al. (2004), who examined the information needs of women with ovarian cancer in a longitudinal study; their findings showed that sexual issues were the lowest ranked (Browall et al., 2004). However, other work had
contradictory results (Cox et al., 2006; Feldman-stewart et al., 2001; Wallberg, 2000). For example, an audit of UK cancer patients showed that they wanted to know about sexual issues, and 37% of them asked for multiple meetings with their healthcare providers to discuses sexual well-being (Cox et al., 2006). In Jordan, sex-related issues are culturally sensitive, and this might cause patients to avoid discussing or requesting such type of information. In addition, cancer patients focus on the disease process and treatment, which they might consider as more important than sexual matters. Age (younger), monthly income (600 JD), working status (working), and place of treatment (government hospital) were found to predict high information needs. However, patients who were at the palliative stage (no active treatment, just symptom palliation due to the extent of the disease) expressed lower information needs than patients in the early stages of cancer treatment. These results were consistent with previous work regarding age (Ankem, 2006; Jenkins et al., 2001; Rutten et al., 2005) and socioeconomic status (monthly income) (Mayer et al., 2007; Rutten et al., 2005). It should be indicated that a limited number of studies examined the influence of socio-economic status on information seeking behaviour, and forthcoming studies might need to take this issue into consideration. Working status and place of treatment (setting) seem not to have been examined in previous research. In this study, working patients reported higher information needs than non-working patients. This may be because they are worried about their career future, and of course losing work means no income. This could aggravate their anxiety and increase stress levels. Seeking and getting more information could decrease the uncertainty about their future and improve their ability to cope. With regard to place of treatment, it should be explained that the healthcare system in Jordan is simply divided into public and private sectors. Under the public sector umbrella there are government, university and royal medical services hospitals. Each of these implements different practice policy, procedures, and care provision guidelines. This variation in care provision might explain why patients in the government hospital demanded more information. Further research might be needed to follow up on this result and explore the factors that might cause this variation in information needs. The findings revealed that being in the terminal stage (no active treatment) predicts low information need, and this was consistent with previous studies (Ankem, 2006; Leydon et al., 2000; Matsuyama et al., 2012; Rutten et al., 2005). This might be because patients have lost hope, are depressed, and are overwhelmed by cancer-related symptoms in the later stages of cancer treatment. It might have implications for not overwhelming patients with information that they do not want. This study shows that physicians and nurses are considered as the main sources of information for Jordanian cancer patients. Similar findings have been reported previously, but the use of other sources was also reported, such as leaflets, booklets, and the Internet (Pinnock and Jones, 2003; Rees and Bath, 2001; Rutten et al., 2005; Wong et al., 2000). In Jordan, the use of these resources was limited, perhaps because hospitals do not provide patients with teaching materials, and not all patients are able to access the Internet. Finally, cancer patients were in agreement that the amount and type of information they were given was neither adequate nor satisfactory. The adequacy and satisfaction dimension was not included in previous studies, which limits comparison. Hence, there is a recommendation for studies exploring information needs to evaluate patients’ satisfaction with the information being given to them, in order to enhance our understanding of informationseeking behaviour. This dimension may take on extra importance in developing countries where the limited financial resources are
M. Al Qadire / European Journal of Oncology Nursing 18 (2014) 46e51
mainly directed toward cancer treatment and results, ignoring patients’ satisfaction. In a study that examined cancer patients’ satisfaction with the information they had been given, it was found that the patients were generally satisfied but wanted information to be more detailed on certain issues such as the effects of treatment, symptom management, and the availability of supportive resources (Llewellyn et al., 2006). There are a number of limitations to this study. First, the sample was recruited on the basis of convenience sampling; hence the participants who completed the survey might not entirely reflect the opinions of those who did not. Second, this study was conducted in only two hospitals. Most of the participants were poorly educated and have a low income, so the result cannot be generalized to the general population. Future researchers are recommended to use random sample selection to enhance their studies’ external validity. Finally, the questionnaire was not tested for readability on patients before embarking on the main study. This may threat study internal validity and limit patients’ ability to comprehend the questionnaire correctly. Implications for practice This study has identified factors that could predict high information need among cancer patients. Therefore, healthcare providers (physicians and nurses in particular) need to consider these factors in their clinical practice to ensure adequate information provision. In addition, it is recommended that healthcare settings provide cancer patients with booklets about the disease, its treatment, side effects, symptoms management, and other available supportive services. Conclusions This study demonstrated that information needs among Jordanian cancer patients were high and that patients were not satisfied with the information they had been given. Many factors may cause variations in patients’ information-seeking behaviour. Therefore, a notational policy for information provision is needed to satisfy different patients’ information needs. Finally, healthcare providers should be aware that patients’ information needs fluctuate throughout the stages of their cancer treatment, but that they will continue to need information at all stages. Conflict of interest statement The author did not have any potential conflicts of interest in the research reported. References Ankem, K., 2006. Factors influencing information needs among cancer patients: a meta-analysis. Library & Information Science Research 28, 7e23. Arora, N.K., Johnson, P., Gustafson, D.H., McTavish, F., Hawkins, R.P., Pingree, S., 2002. Barriers to information access, perceived health competence, and psychosocial health outcomes: test of a mediation model in a breast cancer sample. Patient Education and Counseling 47, 37e46. Arraras, J.I., Greimel, E., Sezer, O., Chie, W.-C., Bergenmar, M., Costantini, A., et al., 2010. An international validation study of the EORTC QLQ-INFO25
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