The EORTC information questionnaire, EORTC QLQ-INFO25. Validation study for Spanish patients

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1 Clin Transl Oncol (2011) 13: DOI /s RESEARCH ARTICLES The EORTC information questionnaire, EORTC QLQ-INFO25. Validation study for Spanish patients Juan Ignacio Arraras Ana Manterola Berta Hernández Fernando Arias de la Vega Maite Martínez Meritxell Vila Clara Eito Ruth Vera Miguel Ángel Domínguez Received: 7 September 2010 / Accepted: 14 November 2010 Abstract Introduction The EORTC QLQ-INFO25 evaluates the information received by cancer patients. This study assesses the psychometric properties of the QLQ-INFO25 when applied to a sample of Spanish patients. Materials and methods A total of 169 patients with different cancers and stages of disease completed the EORTC QLQ- INFO25, the EORTC QLQ-C30 and the information scales of the inpatient satisfaction module EORTC IN-PATSAT32 on two occasions during the patients treatment and follow-up period. Psychometric evaluation of the structure, reliability, validity and responsiveness to changes was conducted. Patient acceptability was assessed with a debriefing questionnaire. Results Multi-trait scaling confirmed the 4 multi-item scales (information about disease, medical tests, treatment and other services) and eight single items. All items met the standards for convergent validity and all except one met the standards of item discriminant validity. Internal consistency for all scales ( >0.70) and the whole questionnaire ( >0.90) was adequate in the three measurements, except information about the disease (0.67) and other services J.I. Arraras A. Manterola F. Arias de la Vega M. Vila C. Eito M.Á. Domínguez Radiotherapeutic Oncology Department Hospital de Navarra Pamplona, Navarra, Spain J.I. Arraras B. Hernández M. Martínez R. Vera Medical Oncology Department Hospital de Navarra Pamplona, Navarra, Spain J.I. Arraras ( ) C/ Monasterio de Urdax, 1-5.º D ES Pamplona, Navarra, Spain jiarraras@correo.cop.es (0.68) in the first measurement, as was test retest reliability (intraclass correlations >0.70). Correlations with related areas of IN-PATSAT32 (r>0.40) supported convergent validity. Divergent validity was confirmed through low correlations with EORTC QLQ-C30 scales (r<0.30). The EORTC QLQ-INFO-25 discriminated among groups based on gender, age, education, levels of anxiety and depression, treatment line, wish for information and satisfaction. One scale and an item showed changes over time. Conclusions The EORTC QLQ-INFO 25 is a reliable and valid instrument when applied to a sample of Spanish cancer patients. These results are in line with those of the EORTC validation study. Keywords Information Cancer Spanish Questionnaire Psychometrics Introduction Information given to cancer patients is understood to be a key element of the attention they receive [1]. A good information process that matches patients wishes and ways of facing the disease has many benefits: (1) shared decision making; (2) greater satisfaction with care; (3) an improvement in patients sense of control; (4) lower levels of affective distress (5); better communication with patient s families; and (6) a better quality of life. Communication is more effective when professionals evaluate patients views on the information provided [1 8]. Within oncology, there is growing interest in the area of information, and consequently there is increasing research in this field. However, more studies are needed on both the quality and quantity of information offered to patients and their families, and on finding better ways of providing it. Cross-cultural differences in information provision is also a key research area. The level of information that pa-

2 402 Clin Transl Oncol (2011) 13: tients report they wish to receive is similar internationally [9]. On the other hand, in most southern European countries like Spain, the traditional approach has been of partial disclosure of information. Spanish families have played a key role in this and in general there has been a tendency to protect patients by not offering all information available. However, this cultural attitude might be changing among the professionals, relatives and patients of our country towards offering patients more information about their disease [10, 11]. There are also age-related issues in the patients need for information and in the disclosure process [8]. There are several questionnaires that evaluate the disclosure of information to cancer patients. Most of them cover needs assessment [2, 5, 7, 12 15] and patient satisfaction [16]. The European Organization for Research and Treatment of Cancer (EORTC) Quality of Life Group has developed an information module, EORTC QLQ-INFO25, which assesses cancer patients perception of information received during different phases of care. This instrument can be used in different settings, such as in daily clinical practice, research, when evaluating the information disclosure system of an oncology department or in other settings, and in both national and international studies [17]. The structure, validity and reliability of the EORTC QLQ-INFO25 have been tested in a large international and multicultural sample of cancer patients at different stages of the disease and treatment [18]. In this study a provisional 26-item version was evaluated and one item was later deleted. The EORTC QL Study Group recommends that validation studies of their instruments be carried out in individual countries. The aim of the present paper is to perform a psychometric analysis using the subsample of Spanish patients included in the international study, then to compare these results with those of the whole sample. Patients and methods Patients To be included in the study, patients had to be adult (>18 years), diagnosed with cancer with any tumour site and disease stage, receiving radiotherapy and/or chemotherapy, mentally fit and with the linguistic capacity to complete the questionnaires. Patients with concurrent malignancy were excluded. The study followed the Declaration of Helsinki and was approved by the ethics committee. Sample size We considered a minimum of 130 patients (26 items*5 patients), based on the Tabachnik and Fidell [19] estimate of a minimum of 5 cases per variable for multivariate statistical techniques. Study design Two main groups of consecutive patients were recruited: (1) patients primarily diagnosed with cancer who started a first treatment line with radiotherapy/chemotherapy; and (2) patients with recurrent disease who started a second (or other) line of radiotherapy/chemotherapy. These patients would be expected to receive different information. Changes in the information would also be expected throughout the treatment process: before, during and after treatment. In order to reduce the patients burden it was decided to assess each patient twice and to approach patients in each main group at the start (A-C) or during the treatment (B-D). Besides that, Table 1 shows a specific test-retest group for patients with the same characteristics as group B, who filled in the questionnaires (along with part of group B) after treatment and in a specifi c retest measurement. Questionnaires Patients completed the EORTC QLQ-INFO25 and the item from the information about treatments scale, which was deleted after the EORTC study (26 items version) [17, 18], the EORTC QLQ-C30 [20] and the information scales of the inpatient satisfaction module EORTC IN-PATSAT32 [21]. Our group had previously validated these two last instruments for its use in Spain [22, 23]. The three EORTC questionnaires had been translated into Spanish following a forward-backward method [24]. Questionnaires with less than 70% of the items answered were excluded. Patients also filled in a questionnaire evaluating the time taken to complete the instruments, the need for help in answering the EORTC QLQ-INFO25 and whether any items were difficult, confusing or upsetting. The EORTC QLQ-INFO25 module is organised into four scales-information about the disease (4 items), medical tests (3 items), treatment (6 items+the item excluded of from 26 items version) and other services (4 items)-and eight single items. The response format is a 4-point Likert scale (1, not at all; 2, a little; 3, quite a bit; 4, very much), except items 50, 51, 53 and 54, which have a dichotomous response (yes/no) (Table 3). The EORTC QLQ-C30 is a 30-item questionnaire consisting of multi-item scales and single items. It evaluates areas common to different tumour sites and treatments, and contains five functional, three symptom and one global QL scale, as well as single items that evaluate additional symptoms and the perceived financial impact of the disease and treatment. The information scales of the EORTC inpatients satisfaction questionnaire IN-PATSAT32 are provision of information by doctors and nurses, kindness of hospital personnel, helpfulness and information giving. Patient demographic and clinical data were recorded at the first assessment and treatment data were recorded at the second assessment.

3 Clin Transl Oncol (2011) 13: Table 1 Data collection points for the different patient groups Patient groups Assessment time points First time point, Second time point, Third time point, Test/retest before treatment during treatment follow-up -First assessment groups -First assessment groups B & D, -Second assessment groups 7 days after the follow-up A & C -Second assessment groups A & C B & D, one month after visit measurement -First day of treatment -Beginning of third cycle finishing treatment (groups A D); or at the end of the fourth week of radiotherapy (groups A & B), or at the end of radiotherapy (groups C & D) Group A, start N=37 N=36 X X first treatment line Group B, X N=51 N=46 N=30 during first treatment line **Specific N=11 N=11 test/retest group Group C, N=39 N=34 X X start second (or following) treatment lines Group D, X N=31 N=26 during second (or following) treatment lines Total patients per assessment point For each group the assessment time points in which the questionnaires were administered and the number of patients who have filled in the questionnaires (N) are presented. Test/retest has been carried out with a subsample of group B who had an additional test/retest assessment, and a specific test/retest group, with the same characteristics as group B, who have filled in the questionnaires in the third and test/retest assessments Groups of questionnaires: in all cases the EORTC QLQ-C30, QLQ-INFO25 and the selected scales of the QLQ-SAT32 were administered Statistical analysis Multi-trait scaling analysis Multi-trait scaling analysis was performed with the 25- and 26-item versions using the first assessment of patients from groups A to D, n=158 (including a mixture of before and during treatment assessments) [25]. The convergent validity of each item was defined as an item-own-scale correlation of 0.40 (corrected for overlap). For item discriminant validity the correlation between an item and its hypothesised scale (corrected for overlap) was expected to be higher than its correlation with other scales. Internal consistency reliability The internal consistency reliability of the questionnaire scales, the treatment scale including the deleted item, and the whole QLQ-INFO25 were evaluated in the three main assessment points with Cronbach s alpha coefficients ( 0.70 criteria) [26]. Test retest reliability The test-retest reliability of scales and single items was studied with intraclass correlations (ICC). Convergent validity The correlations were calculated between the selected scales (and its individual items) of the EORTC IN-PAT- SAT32 and the four scales and two items of the INFO module that were hypothesised to be related. Higher correlations (Spearman s (Rho) p>0.40) were expected among areas with closer content (disease, medical tests, treatment), information that was supposed to be offered at a specific time during the treatment process (disease, medical tests and admission; other services, things to help yourself get well and discharge) and between the item on satisfaction and the three scales of IN-PATSAT32. Divergent validity The correlations between the EORTC QLQ-INFO25 module and the EORTC QLQ-C30 scales/single items were calculated. Low correlations (Spearman Rho<0.30) were expected given that each instrument evaluates different concepts. Known group validity Known group validity and the two previous validity analyses were evaluated using data from the during-treatment

4 404 Clin Transl Oncol (2011) 13: Table 2 Demographic and clinical characteristics of the patients Variable First assessment of all patient N=169 a Mean age, years (SD) 61.3 (11.25) Karnofsky PS, mean (SD) (9.5) N % Gender Male Female Highest level of education Less than compulsory school education Compulsory school education Post compulsory education below university University level Primary tumour Breast Gynaecological Haematological Gastrointestinal Genitourinary Lung cancer Head and neck Other responses Disease stage Local Locoregional Metastatic Comorbidity Yes No Inpatient Outpatient Groups C & D previous treatments Surgery Chemotherapy Radiotherapy Second assessment N= 163 b Karnofsky PS, mean (SD) (9.23) Aim of the current treatment Potentially curative Purely palliative Treatment modality Surgery Radiotherapy Chemotherapy Hormonal therapy a Demographic and clinical data were recorded with the first questionnaires of all patients (groups A D and retest) b Treatment data were collected when patients were expected to fill in the second questionnaires assessment point (n=152), to determine the extent to which the questionnaire was able to discriminate between subgroups of patients differing in demographic and clinical status. Subgroups were compared for gender, age ( 50, 51 65, 66), level of education, current treatment intention (potentially curative, palliative), treatment lines (first vs. others), the Emotional Functioning scale of the QLQ-C30 (lowest to mean, mean to highest) and items of the INFO module on the wish to receive more information (yes/no) and the level of satisfaction with the information received (1 2/3 4) (Mann-Whitney U and Kruskal-Wallis tests with Mann-Whitney U to compare pairs of groups). Higher information levels were expected from female patients, younger patients, those with a higher level of education, those receiving potentially curative treatment, those in second or other treatment lines, as well as from those with better emotional functioning, less need for information and greater satisfaction with the information received. Responsiveness to change Pairs of measurements (first day of treatment/during treatment; during treatment/end of treatment) were compared using the Wilcoxon test. Few differences were found between assessments in the EORTC international validation study [18], so few differences were expected in the Spanish sub-sample. Where differences appeared, more information was expected during treatment than at the beginning and more at the end of treatment than during it. p<0.01 was considered significant in all analyses, and p=0.01 to p=0.05 as almost significant. Analyses were done using SPSS version Results Patients characteristics and compliance Of 170 patients registered between February 2006 and January 2009, 169 were included in the study. One patient was excluded, as he was too ill. The demographic and clinical characteristics of the patients are summarised in Table 2. A total of 153 patients (90.5%) filled in the questionnaires a second time. Reasons for not completing the instruments were death (n=7), patient too ill (n=8) and patient withdrawal (n=1). In all questionnaires (in the during-treatment assessment point: 152 patients), over 70% of the items were answered. There were 79 missing items (2% of 3800 items) evenly distributed among the 25 questions. Debriefing questionnaire Twelve patients said they did not understand item 41 (information on the expected effects of the treatment on disease symptoms) in the first group of questionnaires. One patient considered item 43 (sexuality) as upsetting. Almost all patients (167; 98.8%) needed less than 30 minutes to fill in the three questionnaires. A total of 151 patients (89.3%) asked for the questions to be read aloud: this help is not necessary, it is just a preference for Spanish patients.

5 Clin Transl Oncol (2011) 13: Table 3 Descriptive statistics of scales/items and reliability Assessment Mean S.D. %Floor %Ceiling Cronbach s alpha Whole questionnaire First During End Information about the disease [31 34] First During End Information about medical tests [35 37] First During End Information about treatments [38 43] First During End Information about treatments* First During End Information about other services [44 47] First During End Information about different places of care [48] First During End Information about things you can do to [49] First During End Written information [50] First During End Information on CD tape/video [51] First During End Satisfaction with the information received [52] First During End Wish to receive more information [53] First During End Wish to have received less information [54] First During End Overall the information has been helpful [55] First During End First row reports assessment before treatment, groups A & C, n=76; second row reports assessment during treatment groups A, B, C, D, n=152; third row, assessment after treatment, groups B & D, n=83; Scores in the EORTC INFO module scales and items range A higher score means a higher level of information received, higher information wishes and higher satisfaction SD, standard deviation; *Statistics and Cronbach s alpha adding the excluded item EORTC INFO module descriptive statistics Scores in the three assessment points are shown in Table 3. The percentage of respondents at ceiling and floor was low in the three assessment points (at the first assessment: three ceiling areas % and two floor areas %). Forty percent of patients wished to receive more information and the areas they suggested were already included in the questionnaire, e.g., information about the extent of the disease. Multi-trait scaling analyses In the 25-item version, all items had item-own-scale correlations of >0.40 and item 38 had a correlation 0.01 higher with another scale than with its own (Table 4). When analysing the 26-item version, the excluded item did not meet the convergent (correlation 0.18 item own scale) and discriminant validity criteria, and item 44 the discriminant validity.

6 406 Clin Transl Oncol (2011) 13: Table 4 Multi-trait analysis: correlation of items with their own scale and other scales (n=158, first questionnaire of groups A D) Item Information about the disease Information about medical tests Information about treatments Information about other services Cells in grey: item own scale correlation (corrected for overlap) Numbers in bold font within the grey cells: item own scale correlation higher than item correlation with the other scales of the area Cells in white: correlations between the items and the other scales of the area Numbers in bold font within the white cells: item other scale correlation higher than item own scale correlation Internal consistency reliability Cronbach s alpha coefficients of all scales and the full INFO questionnaire met the 0.7 and 0.90 criteria, respectively, in all measurements (before, during and after treatment), except the scales on information about the disease (0.67) and on other services (0.68) in the first measurement (see Table 3). The reliability of the treatment scale improved after deleting the item that was excluded in the EORTC international validation study. Test retest reliability The test retest reliability of all the QLQ-INFO25 scales/ items was significant (p<0.001). ICC values ranged from Table 5 Convergent validity (n=152, during treatment assessment point) INFO module scales/items EORTC IN-PATSAT 32 R Spearman p-value Information about the disease scale Item: The information doctors gave you about your illness 0.54 <0.001 Information about the disease scale Item: The information other hospital personnel provided on your admission to the hospital Information about medical tests scale Item: The information doctors gave you about your medical tests 0.49 <0.001 Information about medical tests scale Item: The information nurses gave about your medical tests 0.35 <0.001 Information about medical tests scale Item: The information other hospital personnel provided on your admission to the hospital Information about treatments scale Item: The information doctors gave you about your treatment 0.52 <0.001 Information about treatments scale Item: The information nurses gave you about your treatment 0.35 <0.001 Information about other services scale Item: The information other hospital personnel provided on your discharge 0.46 <0.001 from the hospital Item: Information about things you can Item: The information other hospital personnel provided on your discharge 0.43 <0.001 do to help yourself get well from the hospital Item. Satisfaction with the information Doctors information provision scale 0.71 <0.001 received Item: Satisfaction with the information Nurses information provision scale 0.45 <0.001 received Item: Satisfaction with the information Other hospital personnel kindness, helpfulness and information giving scale 0.53 <0.001 received Scores in the EORTC IN-PATSAT 32 scales and items range A higher score means a higher level of satisfaction

7 Clin Transl Oncol (2011) 13: Table 6A Known groups comparisons: demographic variables (n=152) Gender Age Level of education Male Female p* p** Less Compulsory Post University p** compulsory school compulsory level Mean SD Mean SD Mean SD Mean SD Mean SD Mean SD Mean SD Mean SD Mean SD Scales/items Information about the disease Information about medical tests Information about treatments Information about other services Information about different places of care Information about things you can do to help yourself get well Written information Information on CD tape/video Satisfaction with the information received Wish to receive more information Wish you had received less information Overall the information has been helpful *Mann-Whitney U tests; **Kruskal-Wallis 0.72 (written information) to 0.92 (satisfaction with the information received). Convergent validity Correlations were significant among the areas of the EORTC IN-PATSAT32 and the QLQ-INFO25 that were expected to be related. Reports of having received more information were associated to higher patient satisfaction. Also, higher correlation coefficients >0.40 were found between areas (9/12) with similar content (Table 5). Divergent validity Correlations between the EORTC QLQ-INFO25 and the QLQ-C30 scales and single items were all below Known group validity Women wished for more information than men. Younger patients received more written information than older patients, were less satisfied, wished for more information and considered the information less useful. Lower education groups had fewer information wishes, and there were differences among education groups in information about things you can do to help yourself get well and in overall helpfulness of the information (Table 6A). Patients in the second treatment line had already received more information about other services and different places of care. Those with lower emotional functioning had received less information about the disease. The patients that wished for more information had received less information in six areas, were less satisfied and considered the information less helpful. More satisfied patients replied receiving more information in six areas, considered the information more useful and had fewer wishes to receive more information. There were no differences among treatment intention groups (Table 6B). Responsiveness to change There were no differences between the before and during treatment assessments. Patients in the follow-up period reported having received more information about other services (mean , p=0.02) and different places of care than during treatment (mean , p=0.01). Discussion In this paper we have presented the results of a validation study of the EORTC QLQ-INFO25 for Spain. Biographical

8 408 Clin Transl Oncol (2011) 13: Table 6B Known group comparisons: by treatment, emotional function, wish for information and satisfaction with information (n=152) Treatment intent Treatment line Emotional function Wish more Satisfaction with information information Scales/items Potentially Purely p* First Second p* Lowest Mean p* Yes No p* Not at all/ Quite a bit/ p* curative palliative line line through throught a little very much mean mean Mean SD Mean SD Mean SD Mean SD Mean SD Mean SD Mean SD Mean SD Mean SD Mean SD Information about the disease Information about medical tests Information about treatments Information about other services Information about different places of care Information about things you can do to help yourself get well Written information Information on CD tape/video Satisfaction with the information received Wish to receive more information Wish to have received less information Overall the information has been helpful *Mann-Whitney U tests Emotional function: Scores in the emotional functioning scale of the EORTC QLQ-C30. A lower score in this scale means a worse functioning in the area (more anxiety/depression) Wish more information: Answers to the item of the EORTC INFO module on wish to receive more information Satisfaction: Answers to the item of the EORTC INFO module on the satisfaction with the amount of information received In these two last areas higher scores indicate higher information wishes and satisfaction levels

9 Clin Transl Oncol (2011) 13: and clinical characteristics were representative of the patients treated at the Oncology Departments of the Hospital de Navarra. The most frequent tumour sites and the different treatment modalities were all represented. The high levels of patient compliance, with few missing items, and the answers to the debriefing form indicate that the instrument was understood and well accepted by patients. These results are very important as we are dealing with an area of care in which there is a need for great respect for patients: there is the risk that if the wording and/or the content of any question are not suitable, the item could become upsetting or intrusive. Comments considering item 41 (expected effects of treatment on disease symptoms) as confusing were solved by reviewing the translation. There was a wide variability in the distribution of the scores, indicating that the sensitivity of the questionnaire was good. The different areas of the EORTC QLQ-INFO25 (scales and individual items) showed a variety of mean scores, indicating that the questionnaire is helpful for showing a profile of the information field dimensions. Scores in the information areas and the number of patients wishing for more information were comparable to other studies [4, 10, 27]. The EORTC QL Group is currently analysing the differences in information received between the countries that took part in the international study [18]. The proportion of patients who wished for more information indicates the importance of including this aspect in the questionnaire: clinicians and/or researchers may find here a tool for improving the quality of information that is disclosed and adapting it to the patients characteristics. The areas in which patients wished for more information confirms there was no need to add new items, as they were included in the instrument. Multi-trait scaling and internal consistency analyses confirmed the 4 multi-item scales structure of the module. In both analyses the 25-item version worked better than the 26-item one, supporting the decision by the EORTC QL Group to delete the item. The high level of internal consistency for the full module and the high correlation between some items with scales different from their own support the use of a global score. The questionnaire could evaluate a common area: information. Cronbach s alpha coefficients were just below the 0.7 criteria in some cases and generally slightly lower than those of the EORTC study [18]. This was due to a lower score distribution in the first assessment and in the Spanish sample compared to the international one. The test-retest reliability of the module was excellent. Convergent and divergent validity analyses were satisfactory: the EORTC QLQ-INFO25 had content related with the information areas of the EORTC IN-PATSAT32 (the relationship was higher in the case of areas with closer content) and evaluated concepts different from the QLQ- C30. These results are similar to those of the EORTC study [18]. The known group validity analyses were generally satisfactory. As in the EORTC study [18] and other studies, the QLQ-INFO25 detected differences related to age [28, 29], gender [30], emotional functioning [2, 27] and education [31] in the expected directions. Also as expected, patients who had received more prior treatment, with less need for information and greater satisfaction reported higher scores on received information. No differences were found between potentially curative and palliative treatment groups. In the responsiveness to change analysis, there was no increase in information on medical aspects (diagnoses, tests and treatments). However, the QLQ-INFO25 reflects improvements in the quantity and quality of information on other areas, such as services and care centres, which would be expected at the end of the treatment: patients receive this kind of information in order to manage their situation better. These results are in agreement with those of the EORTC study [18]. Conclusions The EORTC QLQ-INFO25 demonstrated satisfactory psychometric properties when applied to a subsample of Spanish patients. Our results are in line with those of the EORTC validation study. Acknowledgements This study was supported by grants from the Departamento de Salud del Gobierno de Navarra and Caja de Ahorros de Navarra, Spain. Conflict of interest The authors declare that they have no conflict of interest relating to the publication of this manuscript. References 1. Rehnberg G, Absetz P, Aro AR (2001) Women s satisfaction with information at breast biopsy in breast cancer screening. 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