Information received and usefulness of the sources of information to cancer patients at an oncology hospital in Türkiye

Abstract

AimCancer treatment typically involves a combination of approaches like surgery, chemotherapy, and radiation therapy. Offering accurate and valuable information about cancer plays a crucial role in helping patients prepare for their treatment and improves their adherence to it. To assess the information received by cancer patients, the European Organization for Research and Treatment of Cancer (EORTC) Quality of Life (QL) Group has developed the EORTC INFO module. The objective of this study is to examine the reliability and validity of the Turkish version of the EORTC QLQ-INFO25 system. Specifically, it aims to evaluate how patients perceive the benefits of the information they receive and the duration for which the information remains useful to them.MethodsWe administered the Turkish versions of three questionnaires to 197 patients at various stages of their illness: the EORTC QLQ-INFO25, the EORTC Quality of Life Questionnaire-Core 30 (QLQ-C30), and the EORTC Cancer In-Patient Satisfaction with Care Questionnaire (IN-PATSAT32). These stages included chemotherapy, radiotherapy, and surgery. To ensure the questionnaire’s reliability and validity, we utilized Cronbach’s alpha, inter-scale correlation, and factor analysis.ResultsThe validity analysis revealed that the scale had a sufficient level of explained variance, with 66.68% accounted for by the factor analysis findings. Furthermore, the reliability analysis indicated a high level of reliability for the entire questionnaire, with a Cronbach’s alpha coefficient of 0.92. The selected questions from the EORTC IN-PATSAT32 and their correlation with the 4 identified areas and 2 items of the EORTC QLQ-INFO25 demonstrated strong convergent validity. On the other hand, there was a low correlation between the EORTC-QLQ-C30 questionnaire and the different areas of the EORTC QLQ-INFO25 questionnaire, suggesting that these two questionnaires measured distinct concepts.ConclusionThe study found that the Turkish version of the EORTC QLQ-INFO25 scale is a valid and reliable instrument for assessing the knowledge level of cancer patients. These findings suggest that the scale can be effectively utilized within the Turkish society to evaluate the information and understanding of cancer patients.

Keywords

Introduction

Cancer is a significant global and national health issue, being the second leading cause of death in Turkey.^1-2 As cancer incidence continues to rise, there is an increasing demand for information among patients and their families regarding the disease. A study conducted by Akgül et al. revealed that patients primarily seek information from doctors and the internet, while finding the communication with assistant health personnel to be insufficient.³ Similarly, research by Schmid Büchi et al. indicated that cancer patients often lack sufficient information and require professional support regarding disease management and treatment.⁴ Compliance with treatment, communication ability, satisfaction level, and quality of life of patients who reach reliable and quality information are also increasing.⁵
The studies in the field of oncology are increasing day by day and the level of knowledge provided in this field is improving.^6-7 Tools developed to evaluate the level of knowledge about cancer are very important in clinical research.⁸ In our country, a limited number of measurement tools are available to measure the amount of information given to cancer patients. Most of the other scales evaluate the needs and satisfaction levels of patients.³ The European Organization for Research and Treatment of Cancer (EORTC) Quality of Life (QL) has developed the EORTC Quality of Life Questionnaire-Information Module (EORTC QLQ-INFO25) scale, which assesses the level of knowledge from cancer patients at different stages of care. The structure, validity, and reliability of the EORTC QLQ-INFO25 scale were tested in a large international and multi-cultural cancer population at different stages of the disease and treatment. This scale is used during routine clinical practice in the oncology department in both national and international studies. The EORTC QL working group suggests that the validity studies of their scales should be done for each country.⁹
The aim of this study is to translate the EORTC QLQ-INFO25 scale into Turkish, to examine its validity and reliability, and to investigate the effect of cultural differences on the patient’s level of knowledge.

Materials and Methods

ParticipantsOur study was conducted with the approval of the Istanbul Medipol University Non-Interventional Clinical Research Ethics Committee (Date: 15.08.2018, Decision No: 446). All individuals included in the study were given detailed information about the purpose, method, and duration of the study. In addition, patients signed an “Informed Consent Form”. The identities of the participants were kept strictly confidential and only aggregate data were reported.
Power analysis was applied to calculate the required sample size. As a result of the calculation made using G-power analysis, the minimum sample number required for 95% reliability and 80% power was determined as 220.
Our study was conducted in the multidisciplinary care center of Istanbul Medipol University Hospital Complex, Hematology-Oncology section, between 2018-2020. The study focused on patients diagnosed with cancer based on clinical and radiographic examinations. Participation in the study was voluntary. Adult individuals over the age of 18 who received radiotherapy and/or chemotherapy treatment due to the primary tumor at different stages of the disease were included. Individuals who did not have sufficient mental and speaking capacity in terms of understanding and answering the questionnaires and those with psychological morbidity were excluded.Study DesignAll questions in the Turkish version of the EORTC QLQ-INFO25 questionnaire were read carefully to the participants by oncology experts to ensure correct understanding. Additional information about each patient’s disease and medical history was collected from medical records. The first 10 patients registered were evaluated in a pilot study to confirm the questionnaire and were not included in the statistical analysis.QuestionnaireA demographic form prepared by the researchers was filled in as the first step. This form included questions about age, gender, marital status, education level, systemic disease, and cancer diagnosis. In addition, three questionnaires were conducted: EORTC QLQ-INFO25, EORTC Quality of Life Questionnaire-Core 30 (QLQ-C30), and the inpatient satisfaction module EORTC Cancer In-Patient Satisfaction with Care Questionnaire (IN-PATSAT32). The EORTC QLQ-C30 and EORTC IN-PATSAT32 surveys had already been translated and standardized in Turkey.^10-11
The EORTC QLQ-INFO25 questionnaire consists of 25 items covering various aspects of information related to the disease (4 items), medical tests (3 items), treatment (6 items), other services (4 items), and 8 additional topics. It also includes questions about self-help, different areas of care, receipt of written and/or digital information, satisfaction with information received, preferences for more or less information, and perceived usefulness of information. Responses are given on a 4-point Likert scale (1-nothing, 2-some, 3-quite, 4-very much). Items 52, 53, 54, and 55, which assess satisfaction with information and desire for more information, have Yes/No answers. Patients requesting more or less information were asked to provide details. Scores were converted linearly to a 0-100 scale according to the EORTC guide.¹² The questionnaire was translated from English to Turkish using the translation/reversal method and then back-translated by an independent translator. In 10 consecutive interviews with oncology patients, the questionnaire was tested for clarity, and no changes were required. The Turkish version was approved by the EORTC translation unit after evaluation of pilot data.Ethical ApprovalThis study was approved by the Ethics Committee of the Istanbul Medipol University Non-Interventional Clinical Research Ethics Committee (Date: 15.08.2018, Decision No: 446).Statistical AnalysisData were analyzed with SPSS version 25.0. Categorical and continuous variables were studied using frequencies and mean ± standard deviations. Multivariate statistics were applied. Kolmogorov-Smirnov and Shapiro-Wilk tests were used for normality evaluation. Factor analysis was performed for validity, and Cronbach’s Alpha was calculated for reliability. Correlation analyses between scales were conducted using nonparametric tests (Mann-Whitney test), parametric tests (Student t-test), and ANOVA for group differences.

Results

Pilot Study Ten women with a mean age of 54 ± 13 were included in the study. Five patients had breast cancer, one had bone cancer, one pancreas, one lung, one ovary, and one brain cancer. The internal validity of INFO25 was analyzed using the Cronbach alpha coefficient (α). Internal consistency showed a reliability of 0.917. Patient Characteristics A total of 220 patients were evaluated. Twenty-three patients were excluded from the study because they gave inconsistent answers. Finally, 197 patients were included. Thirty-one of the participants were male (15.7%) and 166 were female (84.3%). The average age of the participants was 53 ± 13 years. The majority of patients were married (83.8%). Considering the education level, 68.5% of the patients were below the compulsory education level (defined as school education for more than 12 years), 20.3% were at the compulsory education level, and 11.1% were above the compulsory education level. The most common tumor was breast cancer (49.7%), followed by gynecological (12.7%) and gastrointestinal malignancies (11.6%). 28.8% of the patients had metastasis. The demographic and clinical features of the patients are shown in Table 1. Debriefing Questionnaire Most patients in the study demonstrated a clear understanding of the questions. However, some specific items posed challenges. For instance, 38 patients found the question about the “procedures of medical tests” (item 36) confusing despite the researcher’s explanation. Twelve patients did not answer the question about the “dimensions of managing the disease at home” (item 46) due to the absence of an explanatory statement. Furthermore, questions related to sexual activity elicited feelings of embarrassment and discomfort among participants. This issue was not identified during the pilot study. The researcher did not have to clarify any confusion, and any explanation given was easily understood. Disclosure of Information For the analysis of patient responses regarding the level of knowledge, answers were compared under two headings as “none”-“a little” and “quite”-“a lot” pairs. “None”-“a little” was considered as insufficient knowledge, while “fairly”-“very” was considered sufficient knowledge. Analysis of the data showed that patients had the highest level of knowledge about diagnosis, medical test results, and whether their disease was under control. Patients had the least information about rehabilitation services (97.97%), extra hospital assistance (95.43%), different care places (96.95%), and the effects of treatment on sexual activity (85.79%). According to the results of the multi-trait scale, the correlation measurements of each item with its own scale and other fields are shown in Table 2. The correlation of each item with its own scale (Rho ≥ 0.6) represents high convergent validity. At the same time, the correlation of each item with its hypothetical domain was greater than its relationship with other areas of the scale, reflecting discriminant validity. The correlation between selected questions of EORTC PATSAT32 and the four areas and two items of EORTC INFO25 were evaluated. Pearson correlation coefficients between areas with similar content showed high convergent validity. Divergent validity was assessed by calculating the correlation between the EORTC QLQ-C30 questionnaire and the different domains of the EORTC INFO25 questionnaire. The findings revealed a low correlation (Spearman Rho <0.2) between the domains of the two questionnaires, indicating that they measure distinct concepts. Factor analysis was used to investigate the structure of the survey. After Bartlett’s sphericity test (p<0.000) and Kaiser-Meyer-Olkin sample adequacy criterion, four factors were selected. Factor 1: information about the disease (items 31, 32, 33, 34); Factor 2: information about medical tests (items 35, 36, 37); Factor 3: information about treatment (items 38, 39, 40, 41, 42, 43); Factor 4: information about other services (items 44, 45, 46, 47). These four factors explained a total of 66.68% of the variance. Cronbach’s alpha coefficients for all domains and surveys were between 85% and 95%. In-class correlation (ICC) ranged between 0.571 and 0.861. Cronbach’s alpha coefficient for the total scale is shown in Table 3. The items included in the questionnaire allowed classification of information given to patients in terms of different aspects of cancer diagnosis and treatment. Education level, economic status, and age were examined to determine the amount of information received and whether it affected satisfaction. While there was a significant difference in knowledge level regarding education, disease, medical tests, and treatments (p<0.05), there was no difference for other services (p>0.05). Economic status was significantly related to all parameters (p<0.05). There was no significant difference in knowledge level between those over 50 and those under 50 (p>0.05).

Discussion

In this study, the researcher aimed to assess the quantity and quality of information provided by healthcare personnel to Turkish cancer patients. Furthermore, the study explored the overall satisfaction of Turkish patients regarding the information they received. The statistical analyses conducted indicated that the Turkish version of the EORTC QLQ-INFO25 scale is a valid and reliable tool for measuring the knowledge levels of cancer patients. The high completion rate (>90%) of the surveys suggests that the scale was well understood by the patients and was deemed clear and acceptable. The extra topics suggested by the patients proved that new items are not needed and confirmed the content validity of the scale. Group validity analyses were generally supported by data.
Cronbach’s alpha value for each area of the survey provided the criteria (≥0.6) that the scale can be used to compare different groups. For the entire survey, Cronbach’s alpha coefficient was 0.92, which confirmed that the scale’s reliability was high. When the literature is examined, the results of other studies proved the high reliability of the questionnaire. In studies conducted in Lebanon and Iran, Cronbach’s alpha coefficient for the entire questionnaire was reported to be more than 0.7, and in Spain and Taiwan 0.7-0.9.^6-7,9 The result of our study was consistent with the results of these studies investigating the reliability of the EORTC QLQ-INFO25 scale. A standard divergent validity was observed in all areas of the scale (Rho<0.5), confirming that the two questionnaires used evaluated different concepts. These findings align with previous studies conducted by EORTC. Furthermore, the convergent and divergent validity analyses conducted in this study also provided support for the expected outcomes, which is in line with the findings of other relevant studies.^13-14
The construct validity of the questionnaire was evaluated using factor analysis. In factor analysis, load values between 0.30 and 0.59 are typically considered medium, while values above 0.60 are considered high.¹⁵ In our study, we found that the factor load value was 0.66, indicating a medium to high level of construct validity for the questionnaire. This suggests that the items in the questionnaire are appropriately measuring the intended constructs. In the study by Asadi-lari et al., the value was found to be 0.79, and this result is in line with our study.⁹
The limitation of our study is that the information given to the participants cannot be measured objectively. In addition, test-retest analyses, which show that the questionnaire does not change over time, were not conducted. It is not practical to apply a standardized information program to patients, and it is not possible to collect all these data in a multinational and diverse sample. However, after a more detailed analysis of intercultural differences, a common scale can be developed for each culture.

Limitations

The fact that it was a single-center study may be a limitation for generalizability. Since the study was conducted with a large group, it is recommended to conduct a further study with groups receiving the same treatment or with the same cancer types. In addition, the level of knowledge of the same age groups can be investigated.

Conclusion

According to the results obtained from our study planned and implemented in order to bring the EORTC QLQ-INFO25 scale to the Turkish culture; The validity and reliability of the scale has been determined and it can be used in Turkish society. The questionnaire is a valid scale that can be used by healthcare professionals to evaluate the knowledge level of the person specific to cancer disease in clinical trials.

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