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Do patients’ information needs decrease over the course of radiotherapy?

Do patients’ information needs decrease over the course of radiotherapy? Support Care Cancer (2012) 20:2167–2176 DOI 10.1007/s00520-011-1328-0 ORIGINAL ARTICLE Do patients’ information needs decrease over the course of radiotherapy? Kirsten F. L. Douma & Caro C. E. Koning & Linda C. Zandbelt & Hanneke C. J. M. de Haes & Ellen M. A. Smets Received: 12 November 2010 /Accepted: 1 November 2011 /Published online: 13 November 2011 The Author(s) 2011. This article is published with open access at Springerlink.com Abstract cantly associated to a decrease in information needs on Purpose We aimed to investigate if cancer patients’ specific domains (e.g. procedures or side effects). information needs decrease during radiotherapy and if so, Conclusions Cancer patients’ information needs decline which patient, consultation and radiation oncologist char- between the initial consultation and the first follow-up acteristics are associated with a decrease in information visit, but remain high. It is therefore advised to investigate needs over time. the patients’ information needs at every radiotherapy visit Methods In this longitudinal study, patients (n=104) and not rely on giving information just once. Furthermore, completed a baseline questionnaire a week before the initial radiation oncologists should check if the information given radiotherapy consultation, immediately following this initial at first consultation is understood and remembered. By consultation, and 1 week prior to the first follow-up visit, those means, tailored information giving becomes possible. which took place on average 3–5 weeks after the initial . . . visit. Besides information needs, measured by the Informa- Keywords Information needs Radiotherapy Cancer tion Preference for Radiotherapy Patients scale, the ques- Physician–patient interaction Longitudinal study tionnaire assessed patient, consultation and radiation oncologist characteristics. Results Information needs decreased over time, but Introduction remained at a high level. Being religious, being male, having low health literacy and higher perceived involve- Since the 1980s attention has been drawn towards the ment during the consultation were all statistically signifi- information needs of cancer patients and their right to be fully informed. Until then, most physicians disclosed selected information only [1]. Numerous studies now show : : K. F. L. Douma H. C. J. M. de Haes E. M. A. Smets that cancer patients in general prefer to be fully informed Department of Medical Psychology, Academic Medical Center, Amsterdam, The Netherlands [2]. About half of cancer patients receive radiotherapy during C. C. E. Koning their treatment [3]. Radiation therapy is beneficial in the Department of Radiation Oncology, Academic Medical Center, treatment of almost every solid cancer type. It is, however, Amsterdam, The Netherlands difficult for patients to comprehend because it is not visible L. C. Zandbelt [4]. Furthermore, given the complexity and unpleasant side Department of Quality and Process Innovation, effects of the treatment and the importance that patients do Academic Medical Center, understand procedures and follow-up advice, informing Amsterdam, The Netherlands them well is essential. Information giving is likely to reduce K. F. L. Douma (*) patients’ fears about treatment [5]. Department of Medical Psychology, Academic Medical Center/ However, full information provision is not beneficial to University of Amsterdam, all patients. Sometimes patients perceive that they are given P.O. Box 22660, 1100 DD Amsterdam, The Netherlands too much information or details [6]. Quantitative studies e-mail: K.F.Douma@amc.uva.nl 2168 Support Care Cancer (2012) 20:2167–2176 report a minority of 5–36% of patients not wanting to know adjacent consultations. A study by Butow et al. among all details of their disease and treatment [7–11]. Denial [12, cancer patients showed that lowered information needs at 13], difficulties in fully understanding information [13], not follow-up consultation depended on the radiation oncolo- wanting to be involved in the medical decision-making [14, gist that had seen the patient. Patients’ sociodemographic or 15] or culture-determined attitudes [16, 17]may lead clinical characteristics were not related to a change in patients to prefer limited information. We found that among information needs [25]. patients starting radiotherapy, a need for optimism was the In earlier studies, preferences for less information most often mentioned reason to refrain from available differed depending on patients’ age [31–33], gender [6, 9, information [18]. Furthermore, in this patient group, a 25], level of education [31, 34], anxiety levels and lower information need was associated with being older and intellectual ability to understand medical information [13]. male, having lung or rectal cancer, more difficulty with However, some studies showed no significant associations understanding and a higher trait anxiety level [19]. between information needs and gender [35] and level of Variation in information preferences may also result education [36–38]. Therefore, these patient characteristics from the passing of time since diagnosis. It is imaginable need to be considered to better understand change in that patients have a high information need at a first information needs. Time between consultations may be consultation; but how is this need at the follow-up visit? important too, as recall of information could be related to Does the patient need the same amount and kind of changes in information needs. Finally, radiation oncologist information? Studies addressing changes in information characteristics, such as gender and experience, are relevant need over time showed that information needs generally as these are known to influence doctors’ behaviour of remain high as patients move through different treatment information giving [39, 40] and thereby could influence the stages [6, 20–22]. However, some patients prefer less information needs between visits. information as time passes since their first diagnosis [22– In the current prospective, longitudinal study, we 27]. The domains patients prefer to be informed about vary therefore address two research questions: (1) do patients’ when treatment progresses [2, 28, 29]; for example, at information needs decrease during the course of radiother- diagnosis, individuals rank information about treatment as apy and (2) if so, which patient, consultation and radiation most important, while some months later, they want oncologist characteristics are associated with a decrease in information about family risk [29]. information need over time? With these results, we aim at Results from the studies so far cannot be directly gaining understanding of how patients’ information needs extrapolated as only few of these studies specifically change from visit to visit in order to be able to better tailor focused on patients receiving radiotherapy [20, 23, 26, information giving. 28] or included only specific patient groups [6, 21, 23, 27, 29]. Furthermore, the studies focusing on radiotherapy do all, except for one [28], solely involve breast cancer Materials and methods patients. Of the longitudinal studies performed [6, 20, 26, 28, 29], none focused on the relative short term, e.g. Study sample differences in information needs from consultation to consultation. Previous consultations could have left the Nine radiation oncologists and six trainees of the outpatient patient with specific uncertainties and expectancies. A radiotherapy department of the Academic Medical Center previous contact can influence the process of information in Amsterdam agreed to participate in the study. Their giving at a follow-up contact [30]. One could expect consecutive, new patients were selected. Exclusion criteria information needs to decrease as many radiation oncolo- were: age <18 years, having undergone radiotherapy gists strongly invest in information giving during the initial before, unable to read and write Dutch and presenting with consultation. Furthermore, when patients undergo radio- cognitive problems or a brain tumour. therapy, their questions probably decrease as they get familiar with the procedure and are able to ask questions Procedures to other team members involved in the radiotherapy (e.g. radiotherapists). However, studies so far show mixed Eligible patients were mailed a questionnaire before their results; patient’s information needs do not or only slightly first radiotherapy consultation. They were phoned some decrease over the course of radiotherapy [20, 23, 26]. days later to invite for participation. Patients who gave Therefore, we want to investigate the hypothesis that informed consent were asked to complete a baseline information needs decrease over time. questionnaire in the week before the initial consultation, a To tailor information, it is important to understand why checklist immediately following this initial consultation and a follow-up questionnaire 1 week prior to the follow-up and how factors might change information needs between Support Care Cancer (2012) 20:2167–2176 2169 visit. The initial visit with a radiation oncologist is positive associations with patients’ general information generally structured around the following tasks: gathering preference, the amount of detail required and a monitoring information about patients’ medical history, family and coping style [19]. work situation and current physical functioning; conduct physical examination; explain treatment plan, procedures, Predictors of information needs side effects; and making recommendations. Between initial visit and start of radiation, the patient is prepared for 1. Patient characteristics radiotherapy through a simulation procedure guided by a (a) Sociodemographic and clinical variables radiotherapist. The radiation period can vary from a one- time radiation to 7 weeks of radiotherapy, 5 days a week. Age, gender, marital status, having children, During radiotherapy, patients commonly see the radiation employment status, ethnicity, native language and oncologist once a week to follow-up on treatment and religion were assessed by self-report at baseline. address questions. A radiotherapist is present at every Diagnosis and time of first diagnosis were radiation session. In our study, most of the follow-up visits assessed by medical record audits. Self-reported took place, on average, 3–5 weeks after the initial visit. health status was assessed with one item of the EORTC-QLQ-C30 [41, 42] measuring global This was due to the time necessary for planning and preparing the radiotherapy. health. (b) Level of health literacy and numeracy The study design is shown in Fig. 1. The study was approved by the ethical committee of the Academic The patients’ level of understanding was assessed at baseline using (1) health literacy, i.e. the ability to Medical Center. perform basic reading and numerical tasks required Measures to function in the health care environment (three items, Cronbach’s α=0.63) [43]; (2) numeracy, i.e. Information needs understanding of quantitative information, using four questions covering the use of proportions and We developed the Information Preferences of Radiotherapy percentages (Cronbach’s α=0.59) [44]; and (3) self-reported educational level. Patients Questionnaire (IPRP) [19] which specifically assesses patients’ need for information from their radiation (c) Level of anxiety and denial The patients’ level of anxiety and denial were oncologist about radiotherapy. This 35-item questionnaire consists of six domains: (1) disease (five items; α=0.93), assessed at baseline with extensively validated instruments: (1) the anxiety subscale of the (2) treatment (five items; α=0.79), (3) procedures (six items; α=0.89), (4) side effects (seven items; α=0.92), (5) Hospital Anxiety and Depression Scale [45]; (2) prognosis (seven items; α=0.94) and (6) psychosocial the subscale trait anxiety of the State-Trait Anxiety aspects (four items; α=0.86). For all questions, response Inventory [46]; (3) the Fear of Cancer Scale [38]; categories on a five-point scale ranged from ‘I want to and (4) the subscale avoidance from the Impact of know nothing about it’ to ‘I want to know all about it’.A Event Scale [47] assessing patient’s preference for higher score reflects a higher information need. The a denying coping style. These are extensively used and validated instruments. questionnaire has high reliability on the total scale (α= 0.97)aswellassubscales (α=0.84–0.94). Concurrent 2. Characteristics of the consultations Time between initial and follow-up visit was assessed. validity was found to be good as indicated by significantly One week before the Directly after the One week before the Before start of About 3-5 weeks after first radiotherapy intake radiotherapy follow-up radiotherapy start of radiotherapy consultation consultation radiotherapy visit Fig. 1 Study design 2170 Support Care Cancer (2012) 20:2167–2176 Patients’ satisfaction with the initial consultation overall, Results with information needs met, and with the behaviour of the radiation oncologist as trying to involve them during the Sample characteristics consultation were assessed with three questions from the PSQ [48], immediately following the initial consultation. Of 293 eligible radiotherapy patients, 159 (54%) agreed to Response categories on a 100-mm visual analogue scale participate. Five participants had too many missing values ranged from ‘not satisfied at all’ to ‘very much satisfied’ on the IPRP at baseline and were excluded from further and ‘not involved at all’ to ‘very much involved’, analyses. Of the remaining 154 patients, 104 (68%) also respectively. completed the IPRP at follow-up. Those who completed the 3. Characteristics of the consulted radiation oncologist IPRP on both baseline and follow-up did not differ Prior to inclusion of patients, radiation oncologists significantly in age (p=0.75), gender (p=0.86) and IPRP completed a short questionnaire assessing their gender total score at baseline (p=0.69) from those who only and years of experience in medical practice. completed the IPRP at baseline. Table 1 shows the sociodemographic and clinical characteristics of the 104 respondents available for analy- Data analyses ses. Mean time between initial and follow-up visit was 34 days (SD=22). There was an outlier with 179 days Descriptive statistics were used to characterise the study between initial and follow-up visit. She had had her initial sample. We compared the individuals who completed both consultation before she underwent surgery and chemother- measurements with the total sample with Pearson Chi- apy and started radiotherapy only after the chemotherapy square, Mann–Whitney and independent t tests as appro- was completed. priate. Reliability was determined by calculating Cron- bach’s α’s. Decrease in information need over time? To assess if patients’ information needs decrease during the course of radiotherapy, total subscale scores were Overall, patients’ information need declined significantly calculated, as well as a total IPRP score (range 1–5). The from initial to follow-up visit for all domains except number of items in the subscales of the IPRP varies; psychosocial issues (see Table 2). More specifically, therefore, mean percentage scores were calculated in order information needs of 26–37% of the patients declined (i.e. to compare subscale scores. Responses to the IPRP decreased more than one half standard deviation) on the appeared to be highly skewed, both on the total scale and different domains, while 10–24% of patients had increased on most subscales (5/6). The IPRP total scale was thus information needs over time and 39–62% of patients did cubically transformed to obtain an approximately normal not change (see Table 3). Domain preferences stayed distribution. The IPRP subscales were too heavily skewed roughly the same, with the highest need for information to be transformed. They were dichotomized, with average about side effects at both baseline and follow-up (see responses below 4 labelled as a lower information need and Table 2). The pattern of change of the domain psychosocial average responses of 4 and above indicating high informa- issues differed significantly (p<0.05) from the other tion preference. Paired t tests for within-subjects design (for domains, with significantly more patients who changed in the transformed total scale) and Wilcoxon signed-rank tests their needs between consultations. (for the subscales) were carried out to determine change in information need between baseline and follow-up. Explaining a decrease in information need over time A change in information need was also described by a medium-sized difference, a difference of a half standard There were no characteristics associated with the IPRP total deviation [49], on the total scale and the subscales of the score (information needs in general) (data not shown). IPRP. Whether there were differences in the pattern of 1. Patient characteristics changes across the domains was tested with Chi-square tests. (a) Sociodemographic and clinical characteristics To determine which patient, consultation and radiation oncologist characteristics were associated with a decrease in Being male was significantly associated with a decrease in information need about procedures (p= information need over time, predictors of a decrease in information needs (versus increase and stable) were 0.01, exp b=0.28, 95%CI=0.10–0.76). Being reli- gious was significantly associated with a decrease explored using bivariate logistic regression analyses for in information need about procedures (p=0.02, exp the transformed total IPRP scale and subscales separately. b=2.83, 95%CI=1.16–6.91) and expected side All analyses were carried out with SPSS version 16.0. A p effects (p=0.03, exp b=2.87, 95%CI=1.13–7.29). value of 0.05 (two sided) was considered significant. Support Care Cancer (2012) 20:2167–2176 2171 Table 1 Sociodemographic characteristics of the respondents (n=104) No other sociodemographic and clinical character- istics were related to a decrease in information need Mean (range) SD over time (Table 4). Age (in years) 62.6 (28–86) 12.6 (b) Level of health literacy and numeracy N % Lower health literacy was significantly associ- Gender ated with a decreased need for information about Male 62 60 treatment (p=0.05, exp b=1.75, 95%CI=1.01– Female 42 40 3.05). Neither numeracy nor education level was Marital status related to decreased information needs. (c) Level of anxiety and denial Married/steady relation 78 75 Neither health-related anxiety, trait anxiety, fear No partner 25 24 of cancer nor a denying coping style were related Children to a decrease in information need. No children 19 18 Children living at home 17 16 Grown-up children 67 64 2. Characteristics of the consultations Level of education Patients’ mean score on satisfaction with the initial Low 74 71 consultation overall is 89.6 (SD=10.1), with informa- High 27 26 tion needs met 89.7 (SD=9.9), and with the behaviour Employment of the radiation oncologist as trying to involve them Yes 44 42 during the consultation 82.1 (SD=15.4). The more No 59 57 individuals were satisfied with the degree to which the Ethnicity radiation oncologist tried to actively involve them, the Dutch 99 95 more their information needs about psychosocial issues Other 4 4 decreased (p=0.002, exp b=0.94, 95%CI=0.90–0.98). Native language Time between consultations, satisfaction with the Dutch 97 93 information provided and overall satisfaction were not Other 6 6 related to a decrease in information need. Religion 3. Characteristics of the consulted radiation oncologist Yes 47 45 The gender of the radiation oncologist and years of No 56 54 experience in clinical practice were unrelated to a Diagnosis decrease in information need. Breast 19 18 Urological 30 29 Gynaecological 77 Discussion Rectum 14 14 Esophagus 11 11 Since extensive information provision may not necessarily Lung 7 7 be beneficial to all patients, we should preferably move Gastrointestinal 66 toward patient-tailored care which takes such individual Other 88 variation into account [50]. With our study, we aim at Mean (range) SD gaining understanding of how patients’ information needs Time between consultations (in days) 33.9 (12–179) 22.6 may change from visit to visit in order to be able to better Median, 26 tailor information giving. To our knowledge, this study is Duration of initial consultation (in minutes) 46.8 (17–99) 16.5 among the first to quantitatively investigate in the radio- Duration of follow-up visit (in minutes) 10.6 (3–58) 7.7 therapy setting information needs over time and which characteristics are related to a possible change in needs. Due to missing data, not all percentages add to 100% The most important finding of our study is that although Low: no education, primary school or lower professional education. High: high school, college or university information needs decrease over time, they remain high for most patients. A first explanation for such a high Urological: bladder, bile duct, prostate, testis and kidney information need might be that patients have difficulties Gynaecological: cervix and uterus recalling information given at the initial consultation and Gastrointestinal: anus, colon, stomach, pancreas therefore would like to have most information repeated at Other: skin, non-Hodgkin lymphoma, other the follow-up visit. Studies on recall indicate that as much 2172 Support Care Cancer (2012) 20:2167–2176 Table 2 Information need over time (n=104) Information need n Mean at baseline Mean at follow-up tp value IPRP total score 84 4.22 (0.76) 4.06 (0.80) 3.09 <0.01* Information domain z Disease 102 4.08 (0.99) 3.96 (0.96) −2.02 0.04* Treatment 97 4.14 (0.79) 3.98 (0.85) −2.80 <0.01* Procedure 101 4.38 (0.76) 4.14 (0.93) −3.46 <0.01* Side effects 100 4.44 (0.75) 4.28 (0.80) −2.19 0.03* Prognosis 99 4.37 (0.88) 4.18 (1.04) −2.34 0.02* Psychosocial 100 3.50 (1.08) 3.42 (1.14) −1.25 0.21 A higher score reflects a higher need for information. Scores on total scale and domains range from 1–5. The table shows the non-transformed data. For the IPRP total scores, the analysis was performed using transformed scores IPRP Information Preferences of Radiotherapy Patients Questionnaire *Significant at p<0.05 level as 50% of information may be forgotten [51–54]. This amount of information provided by the radiation oncologist supports the recommendation by Bensing et al. [30] that and others. However, physicians’ attempts to meet patients’ researchers should not look at the communication process needs in this respect will positively affect their relationship. as an isolated event, but rather as an ongoing process. Clearly, all these explanations are hypotheses which need Furthermore, future studies might incorporate recall of the further study to be confirmed. information given at the initial consultation as this could An alternative methodological explanation for the levels possibly explain the high need for information at follow-up. of information need remaining high is the scale’s wording. A second explanation for a remaining high information It is possible that we partly measured a generalised need among patients could be that the initial consultation preference or trait (the individual variation in information left the patient with unmet information needs at the follow- needs) rather than a current need or state (how much the up visit. This could have been caused by suboptimal patient presently wants to know). Since a monitoring communication by the radiation oncologist, e.g. by not coping style is a trait, we investigated in post hoc analyses explicitly checking the patients’ information needs. On the the association between information needs measured with other hand, patients may not have wanted to bother their the IPRP and the person’s monitoring coping style. We doctor with their questions. This emphasises the importance found a medium association between information needs and of all team members involved in radiotherapy to work a monitoring coping style, both at baseline and follow-up together in eliciting patients’ information needs. A third (0.38 and 0.45 respectively), representing a limited part of explanation could be that seeking information is part of the the variance (14 versus 22%). These results suggest that we patients’ coping process, i.e. it is their way to gain control may have partly measured a generalised information [55]. If so, patients will want information, regardless of the preference rather than a current need. Obviously, needs Table 3 Change of one half SD in information need between baseline and follow-up (n=104) Information need Total score (n=84) Disease Treatment Procedure Side effects Prognosis Psychosocial N=102 N=97 N=101 N=100 N=99 N=100 n (%) n (%) n (%) n (%) n (%) n (%) n (%) Decrease 29 (35) 31 (30) 33 (34) 29 (29) 26 (26) 27 (27) 37 (37) Stable 46 (55) 55 (54) 50 (52) 62 (61) 60 (60) 61 (62) 39 (39) Increase 9 (11) 16 (16) 14 (14) 10 (10) 14 (14) 11 (11) 24 (24) Percentages are based on difference scores between baseline and follow-up (sum score follow-up − sum score baseline). Scores on total scale and domains range from 1–5. Numbers do not add to 104 because of missing values Decrease in the sum score of the scale of one half SD or more Stable means that a change in the sum score of the scale is less than one half SD Increase in the sum score of the scale of one half SD or more Support Care Cancer (2012) 20:2167–2176 2173 Table 4 Significant predictors of decrease in information need (n=104) IPRP scale p Exp b 95%CI for exp b Patient characteristics Demographic and clinical variables Gender Procedures 0.01 0.28 0.10–0.76 Religion: yes versus no Procedures 0.02 2.83 1.16–6.91 Side effects 0.03 2.87 1.13–7.29 Level of intellectual ability Health literacy Treatment 0.05 1.75 1.01–3.05 Level of anxiety and denial –– – – – Characteristics of the consultations Patient satisfaction with involvement at intake Psychosocial issues <0.01 0.94 0.90–0.98 Characteristics of the consulted radiation oncologist at intake –– – – – All shown predictors are significant at p<0.05 level. Bivariate logistic regression analyses in which information need is dichotomized (decrease versus stable/increase) CI confidence interval, IPRP Information Preferences of Radiotherapy Patients Questionnaire, Exp b exponent of the B coefficient, which is an odds ratio are always related to personality. At the same time, we may mation, low literate patients probably deserve extra atten- have to reconsider the wording of the time frame when tion to ensure their understanding and thus support their revising the IPRP eventually. adaptation to the treatment process. An alternative expla- The decrease in information needs in patients with low nation for remaining high information needs among high health literacy is noteworthy; they already had lower literate patients might be that they wanted more information information needs at the initial consultation [19] and now than what is standard given; even large amounts of also show a greater decrease in information need over time. information could just not have satisfied them. However, The association between low health literacy and decreased all these explanations are highly speculative and need information needs may suggest that (at least part of) the further investigation. information needs of low literate patients were met during We also found information needs to decrease more in the initial consultation. As we only globally investigated if men than in women. As men had lower information needs information needs were met, this needs further study. to begin with [19], their information need could have been However, this association may also mean that the commu- already fulfilled for the most part at the intake consultation. nication at the initial consultation does not stimulate these Future research should take into account the amount of individuals to get better informed at the follow-up visit, i.e. information that was actually given during the consultation. as if they have given up the effort. Low literate patients We find the significant association between religion and may feel ashamed when they consider their intellectual decreasing information needs harder to explain. Maybe the capacities as insufficient to comprehend medical informa- support of patient’s religious practice may reduce the tion [56] or may be afraid of consuming too much of their impact of the disease [60] through a cognitive process of physicians time when asking for additional explanations resignation or surrender to God’s will. [13]. The few studies which examined the association Interestingly, individuals who were satisfied with the between health literacy and the exchange of information degree to which the radiation oncologist tried to actively during consultations suggest that low literacy patients ask involve them in the initial consultation showed a decrease fewer questions and receive less information during in information needs about psychosocial issues at follow- interactions with their physicians [57, 58]. Radiation up. These patients possibly feel that their psychosocial oncologists may adapt their communication to the patient’s (information) needs are met by the radiation oncologist and lower information need. From the literature, it is known that therefore have less psychosocial information needs at physicians may perceive a patient with low knowledge as follow-up. This finding may be of clinical importance incompetent or possibly uninterested, which leads to less because early investment of the radiation oncologist in psychosocial topics, such as contact with fellow-sufferers, information giving [59]. Rather than providing less infor- 2174 Support Care Cancer (2012) 20:2167–2176 other sources for psychosocial support and financial giving information once. Patients are known to be less consequences of the disease, could thus satisfy the need anxious when information is spread out [61]. Furthermore, for additional psychosocial information. radiation oncologists should check if the information given Some limitations of this study should be noted. Overall, at first consultation is well understood and remembered. By individuals had high scores at the Information Preferences those means, tailored information giving becomes possible. of Radiotherapy Patients Questionnaire at baseline. So, a Acknowledgements This study was supported by the Dutch Cancer ceiling effect was present, making it impossible for most Foundation (grant UVA 2005-3199). We are grateful to all patients individuals to score higher at follow-up. Moreover, the and radiation oncologists who participated in this study. ceiling effects lead to low variance in the data. As a consequence, it is more difficult to find significant Conflicts of interest The authors have no conflict of interest to be reported. associations. On the other hand, we performed several separate logistic regression analyses which could have led to a multiple testing bias leading to an increased chance of Open Access This article is distributed under the terms of the finding significant results. Second, in our study, we asked Creative Commons Attribution Noncommercial License which per- about information needs in relation to the consultation with mits any noncommercial use, distribution, and reproduction in any medium, provided the original author(s) and source are credited. the radiation oncologist. However, these information needs in part could have been met through other sources like internet, family or other health professionals. Third, the References overall response rate was relatively low, which is most likely due to the fact that patients just received their cancer diagnosis and did not have the attention or energy to fill out 1. 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J Gen Intern Med 22:782–786 227 http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Supportive Care in Cancer Pubmed Central

Do patients’ information needs decrease over the course of radiotherapy?

Supportive Care in Cancer , Volume 20 (9) – Nov 13, 2011

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Abstract

Support Care Cancer (2012) 20:2167–2176 DOI 10.1007/s00520-011-1328-0 ORIGINAL ARTICLE Do patients’ information needs decrease over the course of radiotherapy? Kirsten F. L. Douma & Caro C. E. Koning & Linda C. Zandbelt & Hanneke C. J. M. de Haes & Ellen M. A. Smets Received: 12 November 2010 /Accepted: 1 November 2011 /Published online: 13 November 2011 The Author(s) 2011. This article is published with open access at Springerlink.com Abstract cantly associated to a decrease in information needs on Purpose We aimed to investigate if cancer patients’ specific domains (e.g. procedures or side effects). information needs decrease during radiotherapy and if so, Conclusions Cancer patients’ information needs decline which patient, consultation and radiation oncologist char- between the initial consultation and the first follow-up acteristics are associated with a decrease in information visit, but remain high. It is therefore advised to investigate needs over time. the patients’ information needs at every radiotherapy visit Methods In this longitudinal study, patients (n=104) and not rely on giving information just once. Furthermore, completed a baseline questionnaire a week before the initial radiation oncologists should check if the information given radiotherapy consultation, immediately following this initial at first consultation is understood and remembered. By consultation, and 1 week prior to the first follow-up visit, those means, tailored information giving becomes possible. which took place on average 3–5 weeks after the initial . . . visit. Besides information needs, measured by the Informa- Keywords Information needs Radiotherapy Cancer tion Preference for Radiotherapy Patients scale, the ques- Physician–patient interaction Longitudinal study tionnaire assessed patient, consultation and radiation oncologist characteristics. Results Information needs decreased over time, but Introduction remained at a high level. Being religious, being male, having low health literacy and higher perceived involve- Since the 1980s attention has been drawn towards the ment during the consultation were all statistically signifi- information needs of cancer patients and their right to be fully informed. Until then, most physicians disclosed selected information only [1]. Numerous studies now show : : K. F. L. Douma H. C. J. M. de Haes E. M. A. Smets that cancer patients in general prefer to be fully informed Department of Medical Psychology, Academic Medical Center, Amsterdam, The Netherlands [2]. About half of cancer patients receive radiotherapy during C. C. E. Koning their treatment [3]. Radiation therapy is beneficial in the Department of Radiation Oncology, Academic Medical Center, treatment of almost every solid cancer type. It is, however, Amsterdam, The Netherlands difficult for patients to comprehend because it is not visible L. C. Zandbelt [4]. Furthermore, given the complexity and unpleasant side Department of Quality and Process Innovation, effects of the treatment and the importance that patients do Academic Medical Center, understand procedures and follow-up advice, informing Amsterdam, The Netherlands them well is essential. Information giving is likely to reduce K. F. L. Douma (*) patients’ fears about treatment [5]. Department of Medical Psychology, Academic Medical Center/ However, full information provision is not beneficial to University of Amsterdam, all patients. Sometimes patients perceive that they are given P.O. Box 22660, 1100 DD Amsterdam, The Netherlands too much information or details [6]. Quantitative studies e-mail: K.F.Douma@amc.uva.nl 2168 Support Care Cancer (2012) 20:2167–2176 report a minority of 5–36% of patients not wanting to know adjacent consultations. A study by Butow et al. among all details of their disease and treatment [7–11]. Denial [12, cancer patients showed that lowered information needs at 13], difficulties in fully understanding information [13], not follow-up consultation depended on the radiation oncolo- wanting to be involved in the medical decision-making [14, gist that had seen the patient. Patients’ sociodemographic or 15] or culture-determined attitudes [16, 17]may lead clinical characteristics were not related to a change in patients to prefer limited information. We found that among information needs [25]. patients starting radiotherapy, a need for optimism was the In earlier studies, preferences for less information most often mentioned reason to refrain from available differed depending on patients’ age [31–33], gender [6, 9, information [18]. Furthermore, in this patient group, a 25], level of education [31, 34], anxiety levels and lower information need was associated with being older and intellectual ability to understand medical information [13]. male, having lung or rectal cancer, more difficulty with However, some studies showed no significant associations understanding and a higher trait anxiety level [19]. between information needs and gender [35] and level of Variation in information preferences may also result education [36–38]. Therefore, these patient characteristics from the passing of time since diagnosis. It is imaginable need to be considered to better understand change in that patients have a high information need at a first information needs. Time between consultations may be consultation; but how is this need at the follow-up visit? important too, as recall of information could be related to Does the patient need the same amount and kind of changes in information needs. Finally, radiation oncologist information? Studies addressing changes in information characteristics, such as gender and experience, are relevant need over time showed that information needs generally as these are known to influence doctors’ behaviour of remain high as patients move through different treatment information giving [39, 40] and thereby could influence the stages [6, 20–22]. However, some patients prefer less information needs between visits. information as time passes since their first diagnosis [22– In the current prospective, longitudinal study, we 27]. The domains patients prefer to be informed about vary therefore address two research questions: (1) do patients’ when treatment progresses [2, 28, 29]; for example, at information needs decrease during the course of radiother- diagnosis, individuals rank information about treatment as apy and (2) if so, which patient, consultation and radiation most important, while some months later, they want oncologist characteristics are associated with a decrease in information about family risk [29]. information need over time? With these results, we aim at Results from the studies so far cannot be directly gaining understanding of how patients’ information needs extrapolated as only few of these studies specifically change from visit to visit in order to be able to better tailor focused on patients receiving radiotherapy [20, 23, 26, information giving. 28] or included only specific patient groups [6, 21, 23, 27, 29]. Furthermore, the studies focusing on radiotherapy do all, except for one [28], solely involve breast cancer Materials and methods patients. Of the longitudinal studies performed [6, 20, 26, 28, 29], none focused on the relative short term, e.g. Study sample differences in information needs from consultation to consultation. Previous consultations could have left the Nine radiation oncologists and six trainees of the outpatient patient with specific uncertainties and expectancies. A radiotherapy department of the Academic Medical Center previous contact can influence the process of information in Amsterdam agreed to participate in the study. Their giving at a follow-up contact [30]. One could expect consecutive, new patients were selected. Exclusion criteria information needs to decrease as many radiation oncolo- were: age <18 years, having undergone radiotherapy gists strongly invest in information giving during the initial before, unable to read and write Dutch and presenting with consultation. Furthermore, when patients undergo radio- cognitive problems or a brain tumour. therapy, their questions probably decrease as they get familiar with the procedure and are able to ask questions Procedures to other team members involved in the radiotherapy (e.g. radiotherapists). However, studies so far show mixed Eligible patients were mailed a questionnaire before their results; patient’s information needs do not or only slightly first radiotherapy consultation. They were phoned some decrease over the course of radiotherapy [20, 23, 26]. days later to invite for participation. Patients who gave Therefore, we want to investigate the hypothesis that informed consent were asked to complete a baseline information needs decrease over time. questionnaire in the week before the initial consultation, a To tailor information, it is important to understand why checklist immediately following this initial consultation and a follow-up questionnaire 1 week prior to the follow-up and how factors might change information needs between Support Care Cancer (2012) 20:2167–2176 2169 visit. The initial visit with a radiation oncologist is positive associations with patients’ general information generally structured around the following tasks: gathering preference, the amount of detail required and a monitoring information about patients’ medical history, family and coping style [19]. work situation and current physical functioning; conduct physical examination; explain treatment plan, procedures, Predictors of information needs side effects; and making recommendations. Between initial visit and start of radiation, the patient is prepared for 1. Patient characteristics radiotherapy through a simulation procedure guided by a (a) Sociodemographic and clinical variables radiotherapist. The radiation period can vary from a one- time radiation to 7 weeks of radiotherapy, 5 days a week. Age, gender, marital status, having children, During radiotherapy, patients commonly see the radiation employment status, ethnicity, native language and oncologist once a week to follow-up on treatment and religion were assessed by self-report at baseline. address questions. A radiotherapist is present at every Diagnosis and time of first diagnosis were radiation session. In our study, most of the follow-up visits assessed by medical record audits. Self-reported took place, on average, 3–5 weeks after the initial visit. health status was assessed with one item of the EORTC-QLQ-C30 [41, 42] measuring global This was due to the time necessary for planning and preparing the radiotherapy. health. (b) Level of health literacy and numeracy The study design is shown in Fig. 1. The study was approved by the ethical committee of the Academic The patients’ level of understanding was assessed at baseline using (1) health literacy, i.e. the ability to Medical Center. perform basic reading and numerical tasks required Measures to function in the health care environment (three items, Cronbach’s α=0.63) [43]; (2) numeracy, i.e. Information needs understanding of quantitative information, using four questions covering the use of proportions and We developed the Information Preferences of Radiotherapy percentages (Cronbach’s α=0.59) [44]; and (3) self-reported educational level. Patients Questionnaire (IPRP) [19] which specifically assesses patients’ need for information from their radiation (c) Level of anxiety and denial The patients’ level of anxiety and denial were oncologist about radiotherapy. This 35-item questionnaire consists of six domains: (1) disease (five items; α=0.93), assessed at baseline with extensively validated instruments: (1) the anxiety subscale of the (2) treatment (five items; α=0.79), (3) procedures (six items; α=0.89), (4) side effects (seven items; α=0.92), (5) Hospital Anxiety and Depression Scale [45]; (2) prognosis (seven items; α=0.94) and (6) psychosocial the subscale trait anxiety of the State-Trait Anxiety aspects (four items; α=0.86). For all questions, response Inventory [46]; (3) the Fear of Cancer Scale [38]; categories on a five-point scale ranged from ‘I want to and (4) the subscale avoidance from the Impact of know nothing about it’ to ‘I want to know all about it’.A Event Scale [47] assessing patient’s preference for higher score reflects a higher information need. The a denying coping style. These are extensively used and validated instruments. questionnaire has high reliability on the total scale (α= 0.97)aswellassubscales (α=0.84–0.94). Concurrent 2. Characteristics of the consultations Time between initial and follow-up visit was assessed. validity was found to be good as indicated by significantly One week before the Directly after the One week before the Before start of About 3-5 weeks after first radiotherapy intake radiotherapy follow-up radiotherapy start of radiotherapy consultation consultation radiotherapy visit Fig. 1 Study design 2170 Support Care Cancer (2012) 20:2167–2176 Patients’ satisfaction with the initial consultation overall, Results with information needs met, and with the behaviour of the radiation oncologist as trying to involve them during the Sample characteristics consultation were assessed with three questions from the PSQ [48], immediately following the initial consultation. Of 293 eligible radiotherapy patients, 159 (54%) agreed to Response categories on a 100-mm visual analogue scale participate. Five participants had too many missing values ranged from ‘not satisfied at all’ to ‘very much satisfied’ on the IPRP at baseline and were excluded from further and ‘not involved at all’ to ‘very much involved’, analyses. Of the remaining 154 patients, 104 (68%) also respectively. completed the IPRP at follow-up. Those who completed the 3. Characteristics of the consulted radiation oncologist IPRP on both baseline and follow-up did not differ Prior to inclusion of patients, radiation oncologists significantly in age (p=0.75), gender (p=0.86) and IPRP completed a short questionnaire assessing their gender total score at baseline (p=0.69) from those who only and years of experience in medical practice. completed the IPRP at baseline. Table 1 shows the sociodemographic and clinical characteristics of the 104 respondents available for analy- Data analyses ses. Mean time between initial and follow-up visit was 34 days (SD=22). There was an outlier with 179 days Descriptive statistics were used to characterise the study between initial and follow-up visit. She had had her initial sample. We compared the individuals who completed both consultation before she underwent surgery and chemother- measurements with the total sample with Pearson Chi- apy and started radiotherapy only after the chemotherapy square, Mann–Whitney and independent t tests as appro- was completed. priate. Reliability was determined by calculating Cron- bach’s α’s. Decrease in information need over time? To assess if patients’ information needs decrease during the course of radiotherapy, total subscale scores were Overall, patients’ information need declined significantly calculated, as well as a total IPRP score (range 1–5). The from initial to follow-up visit for all domains except number of items in the subscales of the IPRP varies; psychosocial issues (see Table 2). More specifically, therefore, mean percentage scores were calculated in order information needs of 26–37% of the patients declined (i.e. to compare subscale scores. Responses to the IPRP decreased more than one half standard deviation) on the appeared to be highly skewed, both on the total scale and different domains, while 10–24% of patients had increased on most subscales (5/6). The IPRP total scale was thus information needs over time and 39–62% of patients did cubically transformed to obtain an approximately normal not change (see Table 3). Domain preferences stayed distribution. The IPRP subscales were too heavily skewed roughly the same, with the highest need for information to be transformed. They were dichotomized, with average about side effects at both baseline and follow-up (see responses below 4 labelled as a lower information need and Table 2). The pattern of change of the domain psychosocial average responses of 4 and above indicating high informa- issues differed significantly (p<0.05) from the other tion preference. Paired t tests for within-subjects design (for domains, with significantly more patients who changed in the transformed total scale) and Wilcoxon signed-rank tests their needs between consultations. (for the subscales) were carried out to determine change in information need between baseline and follow-up. Explaining a decrease in information need over time A change in information need was also described by a medium-sized difference, a difference of a half standard There were no characteristics associated with the IPRP total deviation [49], on the total scale and the subscales of the score (information needs in general) (data not shown). IPRP. Whether there were differences in the pattern of 1. Patient characteristics changes across the domains was tested with Chi-square tests. (a) Sociodemographic and clinical characteristics To determine which patient, consultation and radiation oncologist characteristics were associated with a decrease in Being male was significantly associated with a decrease in information need about procedures (p= information need over time, predictors of a decrease in information needs (versus increase and stable) were 0.01, exp b=0.28, 95%CI=0.10–0.76). Being reli- gious was significantly associated with a decrease explored using bivariate logistic regression analyses for in information need about procedures (p=0.02, exp the transformed total IPRP scale and subscales separately. b=2.83, 95%CI=1.16–6.91) and expected side All analyses were carried out with SPSS version 16.0. A p effects (p=0.03, exp b=2.87, 95%CI=1.13–7.29). value of 0.05 (two sided) was considered significant. Support Care Cancer (2012) 20:2167–2176 2171 Table 1 Sociodemographic characteristics of the respondents (n=104) No other sociodemographic and clinical character- istics were related to a decrease in information need Mean (range) SD over time (Table 4). Age (in years) 62.6 (28–86) 12.6 (b) Level of health literacy and numeracy N % Lower health literacy was significantly associ- Gender ated with a decreased need for information about Male 62 60 treatment (p=0.05, exp b=1.75, 95%CI=1.01– Female 42 40 3.05). Neither numeracy nor education level was Marital status related to decreased information needs. (c) Level of anxiety and denial Married/steady relation 78 75 Neither health-related anxiety, trait anxiety, fear No partner 25 24 of cancer nor a denying coping style were related Children to a decrease in information need. No children 19 18 Children living at home 17 16 Grown-up children 67 64 2. Characteristics of the consultations Level of education Patients’ mean score on satisfaction with the initial Low 74 71 consultation overall is 89.6 (SD=10.1), with informa- High 27 26 tion needs met 89.7 (SD=9.9), and with the behaviour Employment of the radiation oncologist as trying to involve them Yes 44 42 during the consultation 82.1 (SD=15.4). The more No 59 57 individuals were satisfied with the degree to which the Ethnicity radiation oncologist tried to actively involve them, the Dutch 99 95 more their information needs about psychosocial issues Other 4 4 decreased (p=0.002, exp b=0.94, 95%CI=0.90–0.98). Native language Time between consultations, satisfaction with the Dutch 97 93 information provided and overall satisfaction were not Other 6 6 related to a decrease in information need. Religion 3. Characteristics of the consulted radiation oncologist Yes 47 45 The gender of the radiation oncologist and years of No 56 54 experience in clinical practice were unrelated to a Diagnosis decrease in information need. Breast 19 18 Urological 30 29 Gynaecological 77 Discussion Rectum 14 14 Esophagus 11 11 Since extensive information provision may not necessarily Lung 7 7 be beneficial to all patients, we should preferably move Gastrointestinal 66 toward patient-tailored care which takes such individual Other 88 variation into account [50]. With our study, we aim at Mean (range) SD gaining understanding of how patients’ information needs Time between consultations (in days) 33.9 (12–179) 22.6 may change from visit to visit in order to be able to better Median, 26 tailor information giving. To our knowledge, this study is Duration of initial consultation (in minutes) 46.8 (17–99) 16.5 among the first to quantitatively investigate in the radio- Duration of follow-up visit (in minutes) 10.6 (3–58) 7.7 therapy setting information needs over time and which characteristics are related to a possible change in needs. Due to missing data, not all percentages add to 100% The most important finding of our study is that although Low: no education, primary school or lower professional education. High: high school, college or university information needs decrease over time, they remain high for most patients. A first explanation for such a high Urological: bladder, bile duct, prostate, testis and kidney information need might be that patients have difficulties Gynaecological: cervix and uterus recalling information given at the initial consultation and Gastrointestinal: anus, colon, stomach, pancreas therefore would like to have most information repeated at Other: skin, non-Hodgkin lymphoma, other the follow-up visit. Studies on recall indicate that as much 2172 Support Care Cancer (2012) 20:2167–2176 Table 2 Information need over time (n=104) Information need n Mean at baseline Mean at follow-up tp value IPRP total score 84 4.22 (0.76) 4.06 (0.80) 3.09 <0.01* Information domain z Disease 102 4.08 (0.99) 3.96 (0.96) −2.02 0.04* Treatment 97 4.14 (0.79) 3.98 (0.85) −2.80 <0.01* Procedure 101 4.38 (0.76) 4.14 (0.93) −3.46 <0.01* Side effects 100 4.44 (0.75) 4.28 (0.80) −2.19 0.03* Prognosis 99 4.37 (0.88) 4.18 (1.04) −2.34 0.02* Psychosocial 100 3.50 (1.08) 3.42 (1.14) −1.25 0.21 A higher score reflects a higher need for information. Scores on total scale and domains range from 1–5. The table shows the non-transformed data. For the IPRP total scores, the analysis was performed using transformed scores IPRP Information Preferences of Radiotherapy Patients Questionnaire *Significant at p<0.05 level as 50% of information may be forgotten [51–54]. This amount of information provided by the radiation oncologist supports the recommendation by Bensing et al. [30] that and others. However, physicians’ attempts to meet patients’ researchers should not look at the communication process needs in this respect will positively affect their relationship. as an isolated event, but rather as an ongoing process. Clearly, all these explanations are hypotheses which need Furthermore, future studies might incorporate recall of the further study to be confirmed. information given at the initial consultation as this could An alternative methodological explanation for the levels possibly explain the high need for information at follow-up. of information need remaining high is the scale’s wording. A second explanation for a remaining high information It is possible that we partly measured a generalised need among patients could be that the initial consultation preference or trait (the individual variation in information left the patient with unmet information needs at the follow- needs) rather than a current need or state (how much the up visit. This could have been caused by suboptimal patient presently wants to know). Since a monitoring communication by the radiation oncologist, e.g. by not coping style is a trait, we investigated in post hoc analyses explicitly checking the patients’ information needs. On the the association between information needs measured with other hand, patients may not have wanted to bother their the IPRP and the person’s monitoring coping style. We doctor with their questions. This emphasises the importance found a medium association between information needs and of all team members involved in radiotherapy to work a monitoring coping style, both at baseline and follow-up together in eliciting patients’ information needs. A third (0.38 and 0.45 respectively), representing a limited part of explanation could be that seeking information is part of the the variance (14 versus 22%). These results suggest that we patients’ coping process, i.e. it is their way to gain control may have partly measured a generalised information [55]. If so, patients will want information, regardless of the preference rather than a current need. Obviously, needs Table 3 Change of one half SD in information need between baseline and follow-up (n=104) Information need Total score (n=84) Disease Treatment Procedure Side effects Prognosis Psychosocial N=102 N=97 N=101 N=100 N=99 N=100 n (%) n (%) n (%) n (%) n (%) n (%) n (%) Decrease 29 (35) 31 (30) 33 (34) 29 (29) 26 (26) 27 (27) 37 (37) Stable 46 (55) 55 (54) 50 (52) 62 (61) 60 (60) 61 (62) 39 (39) Increase 9 (11) 16 (16) 14 (14) 10 (10) 14 (14) 11 (11) 24 (24) Percentages are based on difference scores between baseline and follow-up (sum score follow-up − sum score baseline). Scores on total scale and domains range from 1–5. Numbers do not add to 104 because of missing values Decrease in the sum score of the scale of one half SD or more Stable means that a change in the sum score of the scale is less than one half SD Increase in the sum score of the scale of one half SD or more Support Care Cancer (2012) 20:2167–2176 2173 Table 4 Significant predictors of decrease in information need (n=104) IPRP scale p Exp b 95%CI for exp b Patient characteristics Demographic and clinical variables Gender Procedures 0.01 0.28 0.10–0.76 Religion: yes versus no Procedures 0.02 2.83 1.16–6.91 Side effects 0.03 2.87 1.13–7.29 Level of intellectual ability Health literacy Treatment 0.05 1.75 1.01–3.05 Level of anxiety and denial –– – – – Characteristics of the consultations Patient satisfaction with involvement at intake Psychosocial issues <0.01 0.94 0.90–0.98 Characteristics of the consulted radiation oncologist at intake –– – – – All shown predictors are significant at p<0.05 level. Bivariate logistic regression analyses in which information need is dichotomized (decrease versus stable/increase) CI confidence interval, IPRP Information Preferences of Radiotherapy Patients Questionnaire, Exp b exponent of the B coefficient, which is an odds ratio are always related to personality. At the same time, we may mation, low literate patients probably deserve extra atten- have to reconsider the wording of the time frame when tion to ensure their understanding and thus support their revising the IPRP eventually. adaptation to the treatment process. An alternative expla- The decrease in information needs in patients with low nation for remaining high information needs among high health literacy is noteworthy; they already had lower literate patients might be that they wanted more information information needs at the initial consultation [19] and now than what is standard given; even large amounts of also show a greater decrease in information need over time. information could just not have satisfied them. However, The association between low health literacy and decreased all these explanations are highly speculative and need information needs may suggest that (at least part of) the further investigation. information needs of low literate patients were met during We also found information needs to decrease more in the initial consultation. As we only globally investigated if men than in women. As men had lower information needs information needs were met, this needs further study. to begin with [19], their information need could have been However, this association may also mean that the commu- already fulfilled for the most part at the intake consultation. nication at the initial consultation does not stimulate these Future research should take into account the amount of individuals to get better informed at the follow-up visit, i.e. information that was actually given during the consultation. as if they have given up the effort. Low literate patients We find the significant association between religion and may feel ashamed when they consider their intellectual decreasing information needs harder to explain. Maybe the capacities as insufficient to comprehend medical informa- support of patient’s religious practice may reduce the tion [56] or may be afraid of consuming too much of their impact of the disease [60] through a cognitive process of physicians time when asking for additional explanations resignation or surrender to God’s will. [13]. The few studies which examined the association Interestingly, individuals who were satisfied with the between health literacy and the exchange of information degree to which the radiation oncologist tried to actively during consultations suggest that low literacy patients ask involve them in the initial consultation showed a decrease fewer questions and receive less information during in information needs about psychosocial issues at follow- interactions with their physicians [57, 58]. Radiation up. These patients possibly feel that their psychosocial oncologists may adapt their communication to the patient’s (information) needs are met by the radiation oncologist and lower information need. From the literature, it is known that therefore have less psychosocial information needs at physicians may perceive a patient with low knowledge as follow-up. This finding may be of clinical importance incompetent or possibly uninterested, which leads to less because early investment of the radiation oncologist in psychosocial topics, such as contact with fellow-sufferers, information giving [59]. Rather than providing less infor- 2174 Support Care Cancer (2012) 20:2167–2176 other sources for psychosocial support and financial giving information once. Patients are known to be less consequences of the disease, could thus satisfy the need anxious when information is spread out [61]. Furthermore, for additional psychosocial information. radiation oncologists should check if the information given Some limitations of this study should be noted. Overall, at first consultation is well understood and remembered. By individuals had high scores at the Information Preferences those means, tailored information giving becomes possible. of Radiotherapy Patients Questionnaire at baseline. So, a Acknowledgements This study was supported by the Dutch Cancer ceiling effect was present, making it impossible for most Foundation (grant UVA 2005-3199). We are grateful to all patients individuals to score higher at follow-up. Moreover, the and radiation oncologists who participated in this study. ceiling effects lead to low variance in the data. As a consequence, it is more difficult to find significant Conflicts of interest The authors have no conflict of interest to be reported. associations. On the other hand, we performed several separate logistic regression analyses which could have led to a multiple testing bias leading to an increased chance of Open Access This article is distributed under the terms of the finding significant results. Second, in our study, we asked Creative Commons Attribution Noncommercial License which per- about information needs in relation to the consultation with mits any noncommercial use, distribution, and reproduction in any medium, provided the original author(s) and source are credited. the radiation oncologist. However, these information needs in part could have been met through other sources like internet, family or other health professionals. Third, the References overall response rate was relatively low, which is most likely due to the fact that patients just received their cancer diagnosis and did not have the attention or energy to fill out 1. 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Supportive Care in CancerPubmed Central

Published: Nov 13, 2011

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