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The Information Needs of New Radiotherapy Patients: How to Measure? Do They Want to Know Everything? And if Not, Why?
Int. J. Radiation Oncology Biol. Phys., Vol. 82, No. 1, pp. 418–424, 2012 Copyright Ó 2012 Elsevier Inc. Printed in the USA. All rights reserved 0360-3016/$ - see front matter
doi:10.1016/j.ijrobp.2010.09.032
CLINICAL INVESTIGATION
Supportive Care
THE INFORMATION NEEDS OF NEW RADIOTHERAPY PATIENTS: HOW TO MEASURE? DO THEY WANT TO KNOW EVERYTHING? AND IF NOT, WHY? MAAIKE ZEGUERS, M.SC.,* HANNEKE C. J. M. DE HAES, PH.D.,* LINDA C. ZANDBELT, PH.D.,y CLAARTJE L. TER HOEVEN, PH.D.,* SANNE J. FRANSSEN, M.SC.,* DEBBIE D. GEIJSEN, M.D.,z CARO C. E. KONING, M.D., PH.D.,z AND ELLEN M. A. SMETS, PH.D.* Departments of *Medical Psychology, yQuality and Process Innovation, and zRadiation Oncology, Academic Medical Centre, Amsterdam, the Netherlands Purpose: To establish 1) further psychometric properties of the information preference for radiotherapy patients scale (IPRP); 2) what information new radiotherapy patients want to receive; 3) which patients have a lower information need. Methods and Materials: Eligible patients (n = 159; response rate 54%) of 15 radiation oncologists completed the IPRP and provided background characteristics before their first radiotherapy consultation. Exclusion criteria were: age <18 years, having undergone radiotherapy before, unable to read and write Dutch, cognitive problems or a brain tumor. Results: Reliability (Cronbach’s alpha 0.84–0.97) and concurrent validity (r from .39 to .57, p < 0.001) of the subscales of the IPRP were good. New radiotherapy patients want extensive information about their disease, treatment, procedures, side effects, and prognosis (mean scores between 4.1 and 4.4 on a scale from 1 to 5) but less information about psychosocial issues (mean = 3.4). Patients who are older and male, have lung or rectal cancer, more difficulty understanding and a higher trait anxiety level, need less information. Conclusions: The IPRP can reliably and validly address information needs of patients undergoing radiation treatment. Most new radiotherapy patients want much information. Yet, information giving should be tailored according to their background, understanding and anxiety. Ó 2012 Elsevier Inc. Radiotherapy, Information giving, Information needs assessment.
situation. Quantitative studies report a minority of 5–36% of patients not wanting to know all details of their disease and treatment (3, 4, 9–11). Higher percentages were recently found in a palliative setting (12) and concerning prognostic information (13). Qualitative studies investigated cancer patients’ considerations not to desire information more extensively. These found that cancer patients often did not wish all information about their disease, treatment, and side effects (14–17). Various mechanisms can explain differences in information preferences among cancer patients. Firstly, sociodemographic variables were considered. A preference for limited information was found amongst older patients (18–20) and males (2, 4, 16). Some studies found no gender differences though (7). Non-Western patients also showed less information needs in some studies (21), but not in others (22, 23). Patients with low levels of education reported lower information needs (18, 24) in older studies, but recent studies report no effects of education (23, 25, 26). Yet, in a recent qualitative study
INTRODUCTION Patient information giving has changed substantially over the last decades. Until the 1980s, information about disease, treatment, and prognosis was assumed to increase patient emotional distress, physical complaints, and treatment refusal. Most physicians indeed disclosed selected information only. Yet, these assumptions were not supported by evidence. Such evidence later indicated that information disclosure yields positive effects on cancer patients’ physical and mental health (1). This insight, and increased patient autonomy, provoked a shift toward emphasizing cancer patients’ right to receive full information about their medical condition (2). Numerous studies now show that most patients prefer to be fully informed (3–6) and that diagnostic information and information about side effects is desired by almost all patients (4, 7, 8). Yet, open and honest communication is not necessarily in the best interest of all patients. Some prefer less information and rather avoid hearing every detail of their
Reprint requests to: E.M.A. Smets, PH.D., Academic Medical Center/University of Amsterdam, Dept. Medical Psychology, P.O. Box 22660, 1100 DD Amsterdam, the Netherlands. Tel: +31-205664768; Fax: +31-20-5669104; E-mail: [email protected]
This study was supported by the Dutch Cancer Foundation (grant UVA 2005-3199). Conflict of interest: none. Received April 8, 2010, and in revised form Sept 2, 2010. Accepted for publication Sept 21, 2010. 418
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patients were found to be afraid to lack the intellect or education to oversee medical information (15). Such information can be confusing and provoke uncertainty. Therefore, these patients may rather have faith in their doctor than ask for information they do not grasp. Second, avoidance can serve as a coping strategy for patients when physicians confront them with probable negative outcomes. Indeed, Kaplowitz et al. (26) found patients reporting a greater need to avoid thinking about death and having more fear of cancer, to desire less prognostic information. Avoiding or denying information can help patients to reduce feelings of anxiety and preserve hope (15, 16, 27) and even to perceive less physical symptoms (28). Radiation therapy is offered to approximately half of all cancer patients eventually. It is beneficial in the treatment of almost every solid cancer type. Given the complexity and unpleasantness of the treatment and the need for patients to understand procedures and follow up advice, informing them well is essential (29). Still, some patients may want more and others less information. The radiation oncologist is therefore expected to tailor the information given to individual patient needs (30, 31). Instruments measuring patient information needs lacked specificity to the radiotherapy context. We therefore developed the Information Preferences of Radiotherapy Patients questionnaire (IPRP). The IPRP is designed to cover the relevant information in radiotherapy and it adopts multioption answer possibilities to advance measurement precision. It was found to be reliable and valid in a pilot study (32). In the current article, we will report on: 1) further testing of the IPRP’s reliability and concurrent validity; 2) the information new radiotherapy patients want to receive at their first consultation; and 3) factors explaining which patients have a lower information need. METHODS AND MATERIALS Sample and procedures Fifteen radiation oncologists of the outpatient radiotherapy department of the Academic Medical Centre in Amsterdam were invited and agreed to participate in this study. Six of them were still in training while nine were qualified. Their consecutive, new patients were selected. Exclusion criteria were: age <18 years, having undergone radiotherapy before, unable to read and write Dutch, and presenting with cognitive problems or a brain tumour. Eligible patients were mailed a questionnaire before their first radiotherapy consultation along with a letter confirming their appointment, a brochure about radiation therapy, and an informed consent form. They were telephoned some days later to answer possible questions and invite participation. Patients renouncing participation were asked a question addressing their overall information preference, as included in the study questionnaire (18). Their gender and date of birth were registered from the medical record. The current study constitutes part of a larger research project, involving videotaping of initial and follow-up consultations, and was approved by the medical ethics committee of the hospital.
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Information needs The construction of the IPRP was based on Butow et al.’s (2) adaptation of specific information and support preference items of the information styles questionnaire (18). Items address the patients’ preference for information about diagnosis, prognosis, treatment options, desire for support, chance to talk about worries, and assurance of being looked after. We added items relevant to radiotherapy patients. The original 2-point response scale was changed into a 5-point Likert scale to enhance measurement precision (ranging from ‘‘I want to know nothing about it’’ [1] to ‘‘I want to know all about it’’ [5]). The IPRP was first pretested to assess comprehensibility and content validity. Next, 105 new radiotherapy patients completed the questionnaire in a pilot study. This study supported the instrument’s acceptability and psychometric properties (32). The resulting instrument (see Appendix) included 34 items covering six information domains: 1) disease (including cause, prevalence and disease-stage; 2) prognosis (addressing chance of recovery, expected survival and factors influencing survival); 3) treatment (including treatment effects, treatment options, treatments needed after radiotherapy, alternative treatments), 4) radiotherapy procedures (including number of treatments, treatment duration, preparation for radiotherapy and sensations during radiation); 5) radiotherapy side effects (covering acute and late side effects, influence on daily activities, ways to minimize or control side effects); and 6) psychosocial information (including psychological support, fellow patients’ experiences, and financial consequences).
Validity measures To establish the IPRP’s concurrent validity, we assessed, first, overall information preference with two measures of the information styles questionnaire (18) covering general information preference (only sufficient to care for myself, only good news, all news) and the amount of detail required (5-point Likert scale). Second, the patients’ information seeking tendency was measured with the Monitoring scale of the Threatening Medical Situations Inventory (33).
Predictors of information needs a) Demographic and clinical variables included age, gender, marital status, having children, employment status, ethnicity, native language, religion, and primary diagnosis (Table 1). b) The patients’ level of understanding was investigated assessing 1) health literacy (i.e., the ability to perform basic reading and numerical tasks needed in the health care context, using three questions) (34); 2) numeracy (i.e., understanding of quantitative information, using four questions covering correct use of proportions and percentages) (35), and 3) highest attained level of education. c) The patients’ level of anxiety and denial was assessed with 1) the Anxiety-subscale of the Hospital Anxiety and Depression Scale (36); 2) the Trait-subscale of the State-Trait Anxiety Inventory (37); 3) the Fear of Cancer Scale, constructed by Kaplowitz and colleagues (26); and 4) the Impact of Events Scale (38) assessing patients’ preference for a denying coping style. All questionnaires were well validated.
Analysis Characteristics of the study sample and of responses to the IPRP were analyzed using descriptive statistics. Reliability was determined by calculating Cronbach’s a. Concurrent validity was assessed through calculating correlations with patients’ general
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Table 1. Sample characteristics (n = 154)* Characteristic
n
Age (y) Mean (range) 63 (19–88) Gender Male 93 Female 61 Marital status Married/steady partner 118 Not partnered 35 Children No children 31 Children living at home 22 Children, not living at 98 home anymore Education Low (no education, primary school, 109 lower vocational education) High (high school, higher vocational 41 training, university) Employment (including volunteer work) Yes 64 No 89 Ethnicity Dutch 146 Other 7 Mother language Dutch 143 Other 10 Religion Yes 70 No 82 Diagnosis Breast 25 Urological 31 Gynecological 19 Rectum 18 Esophagus 15 Lung 12 Other 34
Percentage (%)
60 40 77 23 21 15 64 73 27
42 58 95 5 93 7 46 54 16 20 12 12 10 8 22
* Because of missing data, not all items add up to 154. information preference and monitoring coping style expecting correlations of medium strength. Total subscales were calculated, as well as a total IPRP score (range, 1–5) by summating the item scores and dividing this by the number of items per subscale or total scale respectively. Responses to the IPRP appeared to be highly skewed, both on the total scale and on most subscales (5/6). The IPRP total scale was cubically transformed to obtain an approximately normal distribution. The IPRP subscales were too heavily skewed to be transformed. They were dichotomized, with average responses below 4 labeled as a lower information need and average responses of 4 and above indicating high information preference. Predictors of (lower) information needs were explored using bivariate linear regression and logistic regression analyses for the total IPRP scale and subscales respectively. A p value <0.05 was considered significant.
RESULTS Sample Of 293 eligible radiotherapy patients, 159 (54%) agreed to participate. Nonparticipants were generally older (t(291) =
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2.407, p = 0.017) and had lower information needs (t(269) = 2.298, p = 0.022), but did not differ in gender. Five participants having too many missing values on the IPRP ($5) were excluded from further analyses. Sample characteristics are given in Table 1. Psychometric characteristics of the IPRP Reliability turned out to be high for the IPRP total scale (Cronbach’s a = 0.97) as well as all subscales: disease (a = 0.91), treatment (a = 0.87), procedures (a = 0.91), side effects (a = 0.92), prognosis (a = 0.94), and psychosocial information (a = 0.84). Concurrent validity of the IPRP was supported by moderately high correlations with the patients’ general information preference (rs = 0.57, p < 0.001) and the amount of detail required (rs = 0.54, p < 0.001), and a medium strength correlation with monitoring coping style (rs = 0.39, p < 0.001) (39). Information needs The need for information among new radiotherapy patients is high (Figure 1): averages above 4 indicate that patients want to know much in general (total IPRP scale M = 4.20; SD = 0.74; range, 1–5) and in specific information domains: disease (M = 4.09; SD = 0.93; range, 1–5), treatment (M = 4.44; SD = 0.81), procedures (M = 4.38; SD = 0.77), side effects (M = 4.42; SD = 0.74), and prognosis (M = 4.31; SD = 0.89). Psychosocial information is considered less important (M = 3.39, SD = 1.05). At the same time, the outcomes indicate that a substantial number of patients has a lower information need in some domains (Figure 2): from 16.2% for treatment to 67.8% for psychosocial information. The topics most patients want to be fully informed about are: whether I can be cured (76%), short-term side effects (72%), prognosis after radiotherapy (72%), long-term side effects (71%), and treatments to undergo after radiotherapy (70%). The topics least patients want to be fully informed about are: what patient organizations offer (22%), complementary therapies (25%), other patients’ experiences (29%), where to get psychological help (35%), and financial 6
Mean + 1 SD 5
4
3
2 Total
Disease
Treatment
Procedures Side effects Prognosis Psychosocial
Fig. 1. Information preference in general and concerning specific topics (range, 1–5).
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c) Anxiety and denial. Patients with more trait anxiety report a lower need for information about their treatment (p = 0.040) and prognosis (p = 0.032). Neither healthrelated anxiety, fear of cancer nor a denying coping style predict patients’ information preference.
ia l ps yc ho so c
ef fe ct s si de
pr og no si s
pr oc ed ur es
tre at m en t
ea se di s
to ta l
100 90 80 70 60 50 40 30 20 10 0
Fig. 2. Percentage of patients preferring limited information.
consequences (36%) (for the 10 least/most important topics, see Tables 2 and 3). Which patients have lower information needs? Significant predictors of patients’ having lower information needs are given in Table 4. a) Demographic and clinical characteristics. Older (p = 0.002) and male patients (p = 0.025) report lower information needs in general. More specifically, older patients wish less information about the treatment (p = 0.039), side effects (p = 0.014), and psychosocial issues (p = 0.029). Males report lower information needs concerning treatment procedures (p = 0.012). Patients with rectal cancer report lower information needs concerning treatment (p = 0.044); lung cancer patients report lower needs concerning prognosis (p = 0.013). Neither marital status, employment status, ethnicity, native language, religion, nor having children is related to information preferences. b) Understanding. Lower health literacy is related to lower information needs in general (p = 0.036) and a lower need for information about treatment (p = 0.014) and side effects (p = 0.018). Lower numeracy likewise relates to lower information need in general (p = 0.037) and concerning disease (p = 0.044), treatment (p = 0.004), prognosis (p = 0.038), and side effects (p = 0.023). Patients with a lower level of education report less need for information about treatment (p = 0.004) and prognosis (p = 0.023).
DISCUSSION Information needs Radiotherapy is burdensome and has unpleasant side effects. Also, it is unfamiliar for most patients. For patients to accept treatment and adhere to treatment recommendations, understanding and good information provision are thus crucial. We developed the IPRP to assess the information needs of radiotherapy patients. The IPRP was found to have good psychometric properties in this study as in our earlier pretesting (32). It can therefore provide insight in information needs concerning different radiotherapy domains and in the variation in needs among patients. The first appointment with the radiation oncologist was found to provide optimal timing for information giving (29). Indeed, we found a high need for information among our heterogeneous sample of new radiotherapy patients. Most patients wanted much or even all information in most areas. Highest priority was given to information about treatment, procedures, side effects, and prognosis. Interestingly, most patients wanted to be well informed about their prognosis while this topic was not given attention in some other radiotherapy related studies (40). Across domains, 33% of patients voiced a lower information need. This percentage is higher than previous quantitative studies report and rather consistent with the results of qualitative studies. The lowest information need is expressed toward psychosocial issues such as support, fellow patients’ experiences, and costs of treatment. This result is consistent with findings from Halkett et al. (29) among breast cancer patients. Also, patients report a lower need for information regarding their disease than about the treatment and side effects. These results fit well with current clinical practice where treatment and side effects are discussed extensively during the initial consultation with the
Table 2. Issues considered most important (highest % of patients wanting full information) Item Whether I can be cured of this disease (prognosis*) In my specific case, which side effects I can expect in the short-term (side effects of radiotherapy) My general prognosis after radiotherapy (prognosis) In my specific case, which side effects I can expect in the long-term (side effects of radiotherapy) Which other treatment/s I will still have to have after the last treatment (treatment) What kind of effect the radiotherapy has on my disease (treatment) If during the period of radiotherapy, I will have to watch a particular lifestyle (e.g., diet, exercise) (side effects of radiotherapy) What I can do to keep the side effects under control (side effects of radiotherapy) The number radiotherapy sessions I have to undergo (radiotherapy procedure) Who I can go to if the side effects become too burdensome (side effects of radiotherapy) * The name of relevant subscale is given in brackets.
Patients preferring full information (%) 76 72 72 71 71 70 70 70 70 68
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Table 3. Issues considered least important (lowest % of patients wanting full information) Item
Patients preferring full information (%)
What patient associations have to offer (other information*) Complementary therapies (treatment) What the experiences of other patients with the disease and radiotherapy are (psychosocial information) Where I can go to get psychological help if it all becomes too much for me (psychosocial information) What the financial consequences of my disease will be (psychosocial information) How often my disease occurs (disease) If radiotherapy will have an effect on my sexuality (side effects of radiotherapy) The cause of my disease (disease) The course the disease generally takes (disease) The chance of living 6 months (prognosis)
22 25 29 35 36 36 41 42 51 54
* The name of relevant subscale is given in brackets.
radiation oncologist. Information about the disease is generally provided in less detail. Patients are often assumed to have received this information before. Yet, it must be noted that many patients still express a need for information in this domain. Tailoring information Substantive individual differences exist in the amount of information that patients want to receive. Indeed, information giving by physicians does not suffice with a ‘‘one-size-fitsall’’ approach but requires a differential style. A review by Kiesler and Auerbach (41) showed how patients benefit from efforts of medical personnel to interact in ways that
match their preferred level of information. A well-tailored style of information giving appeared to result in better quality of life. However, a prerequisite for such tailoring is the identification of specific preferences of patients, both for wanting and not wanting information (30). The IPRP might be helpful in this respect, using it as a question prompt sheet, a structured list of questions a patient can use to prepare the visit with the physician (42). Radiotherapy patients want information mainly to get a sense of control over their situation. They preferred limited information to remain optimistic (i.e., to keep faith in the future) live their life as normally as possible, and not being a patient all the time (43).
Table 4. Significant predictors of patients’ preference for limited information Patient characteristic Demographic/clinical Age
Gender Diagnosis of rectal cancer Diagnosis of lung cancer Understanding Health literacy Numeracy
Level of education Level of anxiety and denial Trait anxiety
IPRP scales
Beta
expB
95% CI of expB
p value
IPRP total scale* Treatmenty Side effectsy Psychosocial informationy IPRP total scale* Proceduresy Treatmenty Proceduresy Prognosisy
0.25 – – – 0.19 – – – –
– 0.96 0.95 0.97 – 3.20 0.33 0.30 0.22
1.05–0.24 0.92–1.00 0.92–1.00 0.94–1.00 1.58–23.24 1.30–7.93 0.11–0.97 0.11–0.83 0.06–0.73
0.002 0.039 0.014 0.029 0.025 0.012 0.044 0.020 0.013
0.18 – – 0.19 – – – – – – – –
– 2.01 1.88 – 2.57 4.80 1.40 3.25 1.45 3.26 0.99 0.99
0.48–14.25 1.15–3.51 1.11–3.17 0.91–30.19 1.03–6.43 1.65–13.99 1.02–1.91 1.18–9.00 1.12–1.88 1.17–9.06 0.98–1.00 0.98–1.00
IPRP total scale* Treatmenty Side effectsy IPRP total scale* Diseasey Treatmenty Prognosisy Side effectsy Treatmenty Prognosisy Treatmenty Prognosisy
0.036 0.014 0.018 0.037 0.044 0.004 0.038 0.023 0.004 0.0023 0.040 0.032
Abbreviations: Beta = the standardized coefficient; the coefficient one would obtain if you standardized all variables in the regression; CI = confidence interval; Exp (B) = the exponent of the B coefficient, which is an odds ratio; IPRP = information preference for radiotherapy patients. * Linear regression was used for the IPRP total scales. y Logistic regression was used for the IPRP subscales.
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Results in the current study reveal, first, some demographic and clinical variables to be related to patients’ information preference. Male patients had lower information needs. Older patients reported lower information needs as in earlier studies among radiotherapy patients (30). Interestingly, rectal cancer patients wished less information about treatment and procedures. This may result from the somewhat embarrassing character of the localization of their disease. Lung cancer patients’ more limited wish to be informed about prognosis is also understandable. Similarly, we found a limited information need among esophageal cancer patients when the information became more negative (11). Second, our findings suggest consistently that lower levels of understanding result in a lower information need. The negative impact of low literacy on the health experiences of cancer patients received increased attention recently (for a review, see 44). In our study, lower numeracy and lower education were predictive along with health illiteracy of lower information needs across various domains. The question is what tailored information giving then implies. Should patients understanding less be given less information? Probably not. These patients may feel ashamed when they consider their intellectual capacities insufficient to comprehend medical information. They may be afraid of consuming too much of their physicians time when asking for explanation (15). Their embarrassment may impede them in asking for further clarification. In fact, these patients may therefore deserve extra attention to ensure their understanding and support their adaptation to the treatment process. Physicians may use extra media such as digital or written information to inform these patients well. They may also need advanced communicative skills such as checking understanding systematically and conveying information in a transparent, well-structured manner. Third, situation specific concerns as well as an avoiding style did not bring about reduced information preferences. But, when anxiety was personality related, patients were
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having a lower information need. Here tailoring may have to lead to a more restrictive information giving approach. Patients who are more anxious may rightly defend themselves against information that is too anxiety provoking as to maintain their balance and well-being. Limitations This study has some strengths, such as its good sample size and its specific, valid measures. Yet shortcomings can be mentioned. First, the percentage of patients not willing to participate was considerable and, these patients were generally older and had lower information needs. Thus, our study results may be biased towards a higher information preference than found in clinical practice. This further underscores our conclusions regarding tailoring. Second, we were not able so far to measure the consistency of information preferences. For example, patients had less need to be informed about fellow patients’ experiences. This may well depend on the moment studied: it is conceivable that patients would welcome such information at a later stage in their disease process. It is important to realize that in clinical practice, needs and preferences may be dynamic through the illness trajectory. CONCLUSIONS We conclude that most new radiotherapy patients prefer to receive extensive information at their first consultation. Good information about treatment, procedures as well as side effects, and prognosis are of particular relevance. Yet, information giving should be tailored to patients’ background, understanding, and anxiety. This does not mean that a lower information need necessarily leads to less information giving. On the contrary, patients having difficulty understanding may need more attention and increased communicative skills on the part of the clinician while patients with a higher trait anxiety may have to be approached more cautiously.
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CLINICAL INVESTIGATION
Supportive Care
THE INFORMATION NEEDS OF NEW RADIOTHERAPY PATIENTS: HOW TO MEASURE? DO THEY WANT TO KNOW EVERYTHING? AND IF NOT, WHY? MAAIKE ZEGUERS, M.SC.,* HANNEKE C. J. M. DE HAES, PH.D.,* LINDA C. ZANDBELT, PH.D.,y CLAARTJE L. TER HOEVEN, PH.D.,* SANNE J. FRANSSEN, M.SC.,* DEBBIE D. GEIJSEN, M.D.,z CARO C. E. KONING, M.D., PH.D.,z AND ELLEN M. A. SMETS, PH.D.* Departments of *Medical Psychology, yQuality and Process Innovation, and zRadiation Oncology, Academic Medical Centre, Amsterdam, the Netherlands Purpose: To establish 1) further psychometric properties of the information preference for radiotherapy patients scale (IPRP); 2) what information new radiotherapy patients want to receive; 3) which patients have a lower information need. Methods and Materials: Eligible patients (n = 159; response rate 54%) of 15 radiation oncologists completed the IPRP and provided background characteristics before their first radiotherapy consultation. Exclusion criteria were: age <18 years, having undergone radiotherapy before, unable to read and write Dutch, cognitive problems or a brain tumor. Results: Reliability (Cronbach’s alpha 0.84–0.97) and concurrent validity (r from .39 to .57, p < 0.001) of the subscales of the IPRP were good. New radiotherapy patients want extensive information about their disease, treatment, procedures, side effects, and prognosis (mean scores between 4.1 and 4.4 on a scale from 1 to 5) but less information about psychosocial issues (mean = 3.4). Patients who are older and male, have lung or rectal cancer, more difficulty understanding and a higher trait anxiety level, need less information. Conclusions: The IPRP can reliably and validly address information needs of patients undergoing radiation treatment. Most new radiotherapy patients want much information. Yet, information giving should be tailored according to their background, understanding and anxiety. Ó 2012 Elsevier Inc. Radiotherapy, Information giving, Information needs assessment.
situation. Quantitative studies report a minority of 5–36% of patients not wanting to know all details of their disease and treatment (3, 4, 9–11). Higher percentages were recently found in a palliative setting (12) and concerning prognostic information (13). Qualitative studies investigated cancer patients’ considerations not to desire information more extensively. These found that cancer patients often did not wish all information about their disease, treatment, and side effects (14–17). Various mechanisms can explain differences in information preferences among cancer patients. Firstly, sociodemographic variables were considered. A preference for limited information was found amongst older patients (18–20) and males (2, 4, 16). Some studies found no gender differences though (7). Non-Western patients also showed less information needs in some studies (21), but not in others (22, 23). Patients with low levels of education reported lower information needs (18, 24) in older studies, but recent studies report no effects of education (23, 25, 26). Yet, in a recent qualitative study
INTRODUCTION Patient information giving has changed substantially over the last decades. Until the 1980s, information about disease, treatment, and prognosis was assumed to increase patient emotional distress, physical complaints, and treatment refusal. Most physicians indeed disclosed selected information only. Yet, these assumptions were not supported by evidence. Such evidence later indicated that information disclosure yields positive effects on cancer patients’ physical and mental health (1). This insight, and increased patient autonomy, provoked a shift toward emphasizing cancer patients’ right to receive full information about their medical condition (2). Numerous studies now show that most patients prefer to be fully informed (3–6) and that diagnostic information and information about side effects is desired by almost all patients (4, 7, 8). Yet, open and honest communication is not necessarily in the best interest of all patients. Some prefer less information and rather avoid hearing every detail of their
Reprint requests to: E.M.A. Smets, PH.D., Academic Medical Center/University of Amsterdam, Dept. Medical Psychology, P.O. Box 22660, 1100 DD Amsterdam, the Netherlands. Tel: +31-205664768; Fax: +31-20-5669104; E-mail: [email protected]
This study was supported by the Dutch Cancer Foundation (grant UVA 2005-3199). Conflict of interest: none. Received April 8, 2010, and in revised form Sept 2, 2010. Accepted for publication Sept 21, 2010. 418
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patients were found to be afraid to lack the intellect or education to oversee medical information (15). Such information can be confusing and provoke uncertainty. Therefore, these patients may rather have faith in their doctor than ask for information they do not grasp. Second, avoidance can serve as a coping strategy for patients when physicians confront them with probable negative outcomes. Indeed, Kaplowitz et al. (26) found patients reporting a greater need to avoid thinking about death and having more fear of cancer, to desire less prognostic information. Avoiding or denying information can help patients to reduce feelings of anxiety and preserve hope (15, 16, 27) and even to perceive less physical symptoms (28). Radiation therapy is offered to approximately half of all cancer patients eventually. It is beneficial in the treatment of almost every solid cancer type. Given the complexity and unpleasantness of the treatment and the need for patients to understand procedures and follow up advice, informing them well is essential (29). Still, some patients may want more and others less information. The radiation oncologist is therefore expected to tailor the information given to individual patient needs (30, 31). Instruments measuring patient information needs lacked specificity to the radiotherapy context. We therefore developed the Information Preferences of Radiotherapy Patients questionnaire (IPRP). The IPRP is designed to cover the relevant information in radiotherapy and it adopts multioption answer possibilities to advance measurement precision. It was found to be reliable and valid in a pilot study (32). In the current article, we will report on: 1) further testing of the IPRP’s reliability and concurrent validity; 2) the information new radiotherapy patients want to receive at their first consultation; and 3) factors explaining which patients have a lower information need. METHODS AND MATERIALS Sample and procedures Fifteen radiation oncologists of the outpatient radiotherapy department of the Academic Medical Centre in Amsterdam were invited and agreed to participate in this study. Six of them were still in training while nine were qualified. Their consecutive, new patients were selected. Exclusion criteria were: age <18 years, having undergone radiotherapy before, unable to read and write Dutch, and presenting with cognitive problems or a brain tumour. Eligible patients were mailed a questionnaire before their first radiotherapy consultation along with a letter confirming their appointment, a brochure about radiation therapy, and an informed consent form. They were telephoned some days later to answer possible questions and invite participation. Patients renouncing participation were asked a question addressing their overall information preference, as included in the study questionnaire (18). Their gender and date of birth were registered from the medical record. The current study constitutes part of a larger research project, involving videotaping of initial and follow-up consultations, and was approved by the medical ethics committee of the hospital.
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Information needs The construction of the IPRP was based on Butow et al.’s (2) adaptation of specific information and support preference items of the information styles questionnaire (18). Items address the patients’ preference for information about diagnosis, prognosis, treatment options, desire for support, chance to talk about worries, and assurance of being looked after. We added items relevant to radiotherapy patients. The original 2-point response scale was changed into a 5-point Likert scale to enhance measurement precision (ranging from ‘‘I want to know nothing about it’’ [1] to ‘‘I want to know all about it’’ [5]). The IPRP was first pretested to assess comprehensibility and content validity. Next, 105 new radiotherapy patients completed the questionnaire in a pilot study. This study supported the instrument’s acceptability and psychometric properties (32). The resulting instrument (see Appendix) included 34 items covering six information domains: 1) disease (including cause, prevalence and disease-stage; 2) prognosis (addressing chance of recovery, expected survival and factors influencing survival); 3) treatment (including treatment effects, treatment options, treatments needed after radiotherapy, alternative treatments), 4) radiotherapy procedures (including number of treatments, treatment duration, preparation for radiotherapy and sensations during radiation); 5) radiotherapy side effects (covering acute and late side effects, influence on daily activities, ways to minimize or control side effects); and 6) psychosocial information (including psychological support, fellow patients’ experiences, and financial consequences).
Validity measures To establish the IPRP’s concurrent validity, we assessed, first, overall information preference with two measures of the information styles questionnaire (18) covering general information preference (only sufficient to care for myself, only good news, all news) and the amount of detail required (5-point Likert scale). Second, the patients’ information seeking tendency was measured with the Monitoring scale of the Threatening Medical Situations Inventory (33).
Predictors of information needs a) Demographic and clinical variables included age, gender, marital status, having children, employment status, ethnicity, native language, religion, and primary diagnosis (Table 1). b) The patients’ level of understanding was investigated assessing 1) health literacy (i.e., the ability to perform basic reading and numerical tasks needed in the health care context, using three questions) (34); 2) numeracy (i.e., understanding of quantitative information, using four questions covering correct use of proportions and percentages) (35), and 3) highest attained level of education. c) The patients’ level of anxiety and denial was assessed with 1) the Anxiety-subscale of the Hospital Anxiety and Depression Scale (36); 2) the Trait-subscale of the State-Trait Anxiety Inventory (37); 3) the Fear of Cancer Scale, constructed by Kaplowitz and colleagues (26); and 4) the Impact of Events Scale (38) assessing patients’ preference for a denying coping style. All questionnaires were well validated.
Analysis Characteristics of the study sample and of responses to the IPRP were analyzed using descriptive statistics. Reliability was determined by calculating Cronbach’s a. Concurrent validity was assessed through calculating correlations with patients’ general
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Table 1. Sample characteristics (n = 154)* Characteristic
n
Age (y) Mean (range) 63 (19–88) Gender Male 93 Female 61 Marital status Married/steady partner 118 Not partnered 35 Children No children 31 Children living at home 22 Children, not living at 98 home anymore Education Low (no education, primary school, 109 lower vocational education) High (high school, higher vocational 41 training, university) Employment (including volunteer work) Yes 64 No 89 Ethnicity Dutch 146 Other 7 Mother language Dutch 143 Other 10 Religion Yes 70 No 82 Diagnosis Breast 25 Urological 31 Gynecological 19 Rectum 18 Esophagus 15 Lung 12 Other 34
Percentage (%)
60 40 77 23 21 15 64 73 27
42 58 95 5 93 7 46 54 16 20 12 12 10 8 22
* Because of missing data, not all items add up to 154. information preference and monitoring coping style expecting correlations of medium strength. Total subscales were calculated, as well as a total IPRP score (range, 1–5) by summating the item scores and dividing this by the number of items per subscale or total scale respectively. Responses to the IPRP appeared to be highly skewed, both on the total scale and on most subscales (5/6). The IPRP total scale was cubically transformed to obtain an approximately normal distribution. The IPRP subscales were too heavily skewed to be transformed. They were dichotomized, with average responses below 4 labeled as a lower information need and average responses of 4 and above indicating high information preference. Predictors of (lower) information needs were explored using bivariate linear regression and logistic regression analyses for the total IPRP scale and subscales respectively. A p value <0.05 was considered significant.
RESULTS Sample Of 293 eligible radiotherapy patients, 159 (54%) agreed to participate. Nonparticipants were generally older (t(291) =
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2.407, p = 0.017) and had lower information needs (t(269) = 2.298, p = 0.022), but did not differ in gender. Five participants having too many missing values on the IPRP ($5) were excluded from further analyses. Sample characteristics are given in Table 1. Psychometric characteristics of the IPRP Reliability turned out to be high for the IPRP total scale (Cronbach’s a = 0.97) as well as all subscales: disease (a = 0.91), treatment (a = 0.87), procedures (a = 0.91), side effects (a = 0.92), prognosis (a = 0.94), and psychosocial information (a = 0.84). Concurrent validity of the IPRP was supported by moderately high correlations with the patients’ general information preference (rs = 0.57, p < 0.001) and the amount of detail required (rs = 0.54, p < 0.001), and a medium strength correlation with monitoring coping style (rs = 0.39, p < 0.001) (39). Information needs The need for information among new radiotherapy patients is high (Figure 1): averages above 4 indicate that patients want to know much in general (total IPRP scale M = 4.20; SD = 0.74; range, 1–5) and in specific information domains: disease (M = 4.09; SD = 0.93; range, 1–5), treatment (M = 4.44; SD = 0.81), procedures (M = 4.38; SD = 0.77), side effects (M = 4.42; SD = 0.74), and prognosis (M = 4.31; SD = 0.89). Psychosocial information is considered less important (M = 3.39, SD = 1.05). At the same time, the outcomes indicate that a substantial number of patients has a lower information need in some domains (Figure 2): from 16.2% for treatment to 67.8% for psychosocial information. The topics most patients want to be fully informed about are: whether I can be cured (76%), short-term side effects (72%), prognosis after radiotherapy (72%), long-term side effects (71%), and treatments to undergo after radiotherapy (70%). The topics least patients want to be fully informed about are: what patient organizations offer (22%), complementary therapies (25%), other patients’ experiences (29%), where to get psychological help (35%), and financial 6
Mean + 1 SD 5
4
3
2 Total
Disease
Treatment
Procedures Side effects Prognosis Psychosocial
Fig. 1. Information preference in general and concerning specific topics (range, 1–5).
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c) Anxiety and denial. Patients with more trait anxiety report a lower need for information about their treatment (p = 0.040) and prognosis (p = 0.032). Neither healthrelated anxiety, fear of cancer nor a denying coping style predict patients’ information preference.
ia l ps yc ho so c
ef fe ct s si de
pr og no si s
pr oc ed ur es
tre at m en t
ea se di s
to ta l
100 90 80 70 60 50 40 30 20 10 0
Fig. 2. Percentage of patients preferring limited information.
consequences (36%) (for the 10 least/most important topics, see Tables 2 and 3). Which patients have lower information needs? Significant predictors of patients’ having lower information needs are given in Table 4. a) Demographic and clinical characteristics. Older (p = 0.002) and male patients (p = 0.025) report lower information needs in general. More specifically, older patients wish less information about the treatment (p = 0.039), side effects (p = 0.014), and psychosocial issues (p = 0.029). Males report lower information needs concerning treatment procedures (p = 0.012). Patients with rectal cancer report lower information needs concerning treatment (p = 0.044); lung cancer patients report lower needs concerning prognosis (p = 0.013). Neither marital status, employment status, ethnicity, native language, religion, nor having children is related to information preferences. b) Understanding. Lower health literacy is related to lower information needs in general (p = 0.036) and a lower need for information about treatment (p = 0.014) and side effects (p = 0.018). Lower numeracy likewise relates to lower information need in general (p = 0.037) and concerning disease (p = 0.044), treatment (p = 0.004), prognosis (p = 0.038), and side effects (p = 0.023). Patients with a lower level of education report less need for information about treatment (p = 0.004) and prognosis (p = 0.023).
DISCUSSION Information needs Radiotherapy is burdensome and has unpleasant side effects. Also, it is unfamiliar for most patients. For patients to accept treatment and adhere to treatment recommendations, understanding and good information provision are thus crucial. We developed the IPRP to assess the information needs of radiotherapy patients. The IPRP was found to have good psychometric properties in this study as in our earlier pretesting (32). It can therefore provide insight in information needs concerning different radiotherapy domains and in the variation in needs among patients. The first appointment with the radiation oncologist was found to provide optimal timing for information giving (29). Indeed, we found a high need for information among our heterogeneous sample of new radiotherapy patients. Most patients wanted much or even all information in most areas. Highest priority was given to information about treatment, procedures, side effects, and prognosis. Interestingly, most patients wanted to be well informed about their prognosis while this topic was not given attention in some other radiotherapy related studies (40). Across domains, 33% of patients voiced a lower information need. This percentage is higher than previous quantitative studies report and rather consistent with the results of qualitative studies. The lowest information need is expressed toward psychosocial issues such as support, fellow patients’ experiences, and costs of treatment. This result is consistent with findings from Halkett et al. (29) among breast cancer patients. Also, patients report a lower need for information regarding their disease than about the treatment and side effects. These results fit well with current clinical practice where treatment and side effects are discussed extensively during the initial consultation with the
Table 2. Issues considered most important (highest % of patients wanting full information) Item Whether I can be cured of this disease (prognosis*) In my specific case, which side effects I can expect in the short-term (side effects of radiotherapy) My general prognosis after radiotherapy (prognosis) In my specific case, which side effects I can expect in the long-term (side effects of radiotherapy) Which other treatment/s I will still have to have after the last treatment (treatment) What kind of effect the radiotherapy has on my disease (treatment) If during the period of radiotherapy, I will have to watch a particular lifestyle (e.g., diet, exercise) (side effects of radiotherapy) What I can do to keep the side effects under control (side effects of radiotherapy) The number radiotherapy sessions I have to undergo (radiotherapy procedure) Who I can go to if the side effects become too burdensome (side effects of radiotherapy) * The name of relevant subscale is given in brackets.
Patients preferring full information (%) 76 72 72 71 71 70 70 70 70 68
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Table 3. Issues considered least important (lowest % of patients wanting full information) Item
Patients preferring full information (%)
What patient associations have to offer (other information*) Complementary therapies (treatment) What the experiences of other patients with the disease and radiotherapy are (psychosocial information) Where I can go to get psychological help if it all becomes too much for me (psychosocial information) What the financial consequences of my disease will be (psychosocial information) How often my disease occurs (disease) If radiotherapy will have an effect on my sexuality (side effects of radiotherapy) The cause of my disease (disease) The course the disease generally takes (disease) The chance of living 6 months (prognosis)
22 25 29 35 36 36 41 42 51 54
* The name of relevant subscale is given in brackets.
radiation oncologist. Information about the disease is generally provided in less detail. Patients are often assumed to have received this information before. Yet, it must be noted that many patients still express a need for information in this domain. Tailoring information Substantive individual differences exist in the amount of information that patients want to receive. Indeed, information giving by physicians does not suffice with a ‘‘one-size-fitsall’’ approach but requires a differential style. A review by Kiesler and Auerbach (41) showed how patients benefit from efforts of medical personnel to interact in ways that
match their preferred level of information. A well-tailored style of information giving appeared to result in better quality of life. However, a prerequisite for such tailoring is the identification of specific preferences of patients, both for wanting and not wanting information (30). The IPRP might be helpful in this respect, using it as a question prompt sheet, a structured list of questions a patient can use to prepare the visit with the physician (42). Radiotherapy patients want information mainly to get a sense of control over their situation. They preferred limited information to remain optimistic (i.e., to keep faith in the future) live their life as normally as possible, and not being a patient all the time (43).
Table 4. Significant predictors of patients’ preference for limited information Patient characteristic Demographic/clinical Age
Gender Diagnosis of rectal cancer Diagnosis of lung cancer Understanding Health literacy Numeracy
Level of education Level of anxiety and denial Trait anxiety
IPRP scales
Beta
expB
95% CI of expB
p value
IPRP total scale* Treatmenty Side effectsy Psychosocial informationy IPRP total scale* Proceduresy Treatmenty Proceduresy Prognosisy
0.25 – – – 0.19 – – – –
– 0.96 0.95 0.97 – 3.20 0.33 0.30 0.22
1.05–0.24 0.92–1.00 0.92–1.00 0.94–1.00 1.58–23.24 1.30–7.93 0.11–0.97 0.11–0.83 0.06–0.73
0.002 0.039 0.014 0.029 0.025 0.012 0.044 0.020 0.013
0.18 – – 0.19 – – – – – – – –
– 2.01 1.88 – 2.57 4.80 1.40 3.25 1.45 3.26 0.99 0.99
0.48–14.25 1.15–3.51 1.11–3.17 0.91–30.19 1.03–6.43 1.65–13.99 1.02–1.91 1.18–9.00 1.12–1.88 1.17–9.06 0.98–1.00 0.98–1.00
IPRP total scale* Treatmenty Side effectsy IPRP total scale* Diseasey Treatmenty Prognosisy Side effectsy Treatmenty Prognosisy Treatmenty Prognosisy
0.036 0.014 0.018 0.037 0.044 0.004 0.038 0.023 0.004 0.0023 0.040 0.032
Abbreviations: Beta = the standardized coefficient; the coefficient one would obtain if you standardized all variables in the regression; CI = confidence interval; Exp (B) = the exponent of the B coefficient, which is an odds ratio; IPRP = information preference for radiotherapy patients. * Linear regression was used for the IPRP total scales. y Logistic regression was used for the IPRP subscales.
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Results in the current study reveal, first, some demographic and clinical variables to be related to patients’ information preference. Male patients had lower information needs. Older patients reported lower information needs as in earlier studies among radiotherapy patients (30). Interestingly, rectal cancer patients wished less information about treatment and procedures. This may result from the somewhat embarrassing character of the localization of their disease. Lung cancer patients’ more limited wish to be informed about prognosis is also understandable. Similarly, we found a limited information need among esophageal cancer patients when the information became more negative (11). Second, our findings suggest consistently that lower levels of understanding result in a lower information need. The negative impact of low literacy on the health experiences of cancer patients received increased attention recently (for a review, see 44). In our study, lower numeracy and lower education were predictive along with health illiteracy of lower information needs across various domains. The question is what tailored information giving then implies. Should patients understanding less be given less information? Probably not. These patients may feel ashamed when they consider their intellectual capacities insufficient to comprehend medical information. They may be afraid of consuming too much of their physicians time when asking for explanation (15). Their embarrassment may impede them in asking for further clarification. In fact, these patients may therefore deserve extra attention to ensure their understanding and support their adaptation to the treatment process. Physicians may use extra media such as digital or written information to inform these patients well. They may also need advanced communicative skills such as checking understanding systematically and conveying information in a transparent, well-structured manner. Third, situation specific concerns as well as an avoiding style did not bring about reduced information preferences. But, when anxiety was personality related, patients were
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having a lower information need. Here tailoring may have to lead to a more restrictive information giving approach. Patients who are more anxious may rightly defend themselves against information that is too anxiety provoking as to maintain their balance and well-being. Limitations This study has some strengths, such as its good sample size and its specific, valid measures. Yet shortcomings can be mentioned. First, the percentage of patients not willing to participate was considerable and, these patients were generally older and had lower information needs. Thus, our study results may be biased towards a higher information preference than found in clinical practice. This further underscores our conclusions regarding tailoring. Second, we were not able so far to measure the consistency of information preferences. For example, patients had less need to be informed about fellow patients’ experiences. This may well depend on the moment studied: it is conceivable that patients would welcome such information at a later stage in their disease process. It is important to realize that in clinical practice, needs and preferences may be dynamic through the illness trajectory. CONCLUSIONS We conclude that most new radiotherapy patients prefer to receive extensive information at their first consultation. Good information about treatment, procedures as well as side effects, and prognosis are of particular relevance. Yet, information giving should be tailored to patients’ background, understanding, and anxiety. This does not mean that a lower information need necessarily leads to less information giving. On the contrary, patients having difficulty understanding may need more attention and increased communicative skills on the part of the clinician while patients with a higher trait anxiety may have to be approached more cautiously.
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