Originally published as JCO Early Release 10.1200/JCO.2007.15.2322 on October 20 2008

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Does Age Really Matter? Recall of Information Presented to Newly Referred Patients With Cancer

Jesse Jansen, Phyllis N. Butow, Julia C.M. van Weert, Sandra van Dulmen, Rhonda J. Devine, Thea J. Heeren, Jozien M. Bensing, Martin H.N. Tattersall

From the Netherlands Institute for Health Services Research, and Department of Health Psychology, Utrecht University, Utrecht; Amsterdam School of Communications Research, University of Amsterdam, Amsterdam; Symfora Group, Centers for Mental Health Care, Amersfoort, the Netherlands; and Medical Psychology Research Unit, School of Psychology/Department of Cancer Medicine, University of Sydney, Sydney, Australia

Corresponding author: Jesse Jansen, MA, Netherlands Institute for Health Services Research, P.O. Box 1568, 3500 BN Utrecht, The Netherlands; e-mail: j.jansen{at}nivel.nl

	ABSTRACT

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Purpose To examine age- and age-related differences in recall of information provided during oncology consultations.

Patients and Methods Two hundred sixty patients with cancer diagnosed with heterogeneous cancers, seeing a medical or radiation oncologist for the first time, participated in the study. Patients completed questionnaires assessing information needs and anxiety. Recall of information provided was measured using a structured telephone interview in which patients were prompted to remember details physicians gave about diagnosis, prognosis, and treatment. Recall was checked against the actual communication in audio-recordings of the consultations.

Results Recall decreased significantly with age, but only when total amount of information presented was taken into account. This indicates that if more information is discussed, older patients have more trouble remembering the information than younger ones. In addition, recall was selectively influenced by prognosis. First, patients with a poorer prognosis recalled less. Next, the more information was provided about prognosis, the less information patients recalled, regardless of their actual prognosis.

Conclusion Recall is not simply a function of patient age. Age only predicts recall when controlling for amount of information presented. Both prognosis and information about prognosis are better predictors of recall than age. These results provide important insights into intervention strategies to improve information recall in patients with cancer.

	INTRODUCTION

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During oncology consultations, patients are confronted with detailed information about their disease and treatment¹ that is often difficult to understand and remember.^2,3 Previous studies have shown that patients forget substantial amounts of the provided information.^2,4-6 As a result of age-related cognitive changes, recall may be even more taxing for older patients, which is likely to affect medical compliance and outcomes.⁷

Cancer is largely a disease of older age; more than one half of all new cases and almost two thirds of the deaths from cancer in the United States occur among the 13% of the population that is 65 years of age and older (hereinafter referred to as older patients).⁸ Aging has been associated with decreases in speed of information processing⁹ and working memory performance.^10,11 In addition, age-related conditions like sensory deficits^12,13 and health problems¹⁴ reduce memory function.

However, older people's substantial knowledge and experience may weaken the impact of reductions in cognitive resources.^7,14 Older people are better able to regulate their emotions,¹⁵ which might also compensate for negative age effects on cognition and information recall.¹⁶ Moreover, there is a growing body of literature that has demonstrated the importance of variables other than chronologic age, such as functional, psychological, and physical status, in determining which patients do well and which patients do poorly in oncology settings.^17-20 Similarly, these variables may impair patients’ recall, over and above the effects of age.

Literature on medical information processing in healthy adults nonetheless indicates that older adults have more difficulties remembering and following physicians’ instructions.⁷ Studies conducted in clinical settings show mixed results.^21-27 Variance of several study characteristics may have contributed to these discrepancies. For example, age differences in recall might be influenced by age differences in patient-physician communication. It is known that information that is tailored to patients’ needs is better remembered.²⁸ Patients who actively participate in consultations are better able to direct the information flow,²⁹ and consequently, they may also recall more. This is especially relevant, as studies indicate that older patients participate less in consultations and ask fewer questions,^30,31 although others report that participation is not related to age.^32,33 Finally, there are small age differences in the type and amount of information that patients with cancer value.^34,35 Although the majority of older patients want as much information as possible about diagnosis and treatment, they often do not wish to be told all details about, for example, prognosis.³⁵

It is essential to understand whether and how age affects recall of information, because older patients with cancer should have sufficient comprehension to make informed choices and correctly follow treatment regimens. Several studies have focused on Comprehensive Geriatric Assessment, including investigations of cognition and the impact of cognitive dysfunction on care.¹⁸ However, little is known specifically about recall of information in older patients with cancer.

To ensure good quality of care for the growing group of older patients with cancer, effects of age should be investigated while recognizing the heterogeneity of these patients.¹⁷ In this study, we therefore explored whether age is associated with recall of information presented to patients with cancer while at the same time looking at the importance of age-related factors (eg, anxiety, Eastern Cooperative Oncology Group [ECOG] performance status,³⁶ and prognosis), information preferences, and patients’ active involvement in the consultation.

	PATIENTS AND METHODS

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This study was part of a larger project investigating the effects on patients’ question asking triggered by a question prompt sheet (QPS) administered immediately before the first consultation with an oncologist in combination with active endorsement and systematic review of questions by the physician.²⁹ Patients in the study were randomly assigned to one of three conditions (passive physician plus QPS; active physician plus QPS; no QPS). The aim of the larger project was to determine whether the QPS increased question-asking behavior and to investigate the effect of increased question asking on psychological outcomes.

This project received ethics approval from the Central Sydney Area Health Service, Western Sydney Area Health Service, and the University of Sydney Ethics Committees.

Participants
Consecutive patients with heterogeneous cancers attending an initial consultation with one of five medical and four radiation oncologists at two university hospital outpatient clinics in Australia were invited to participate. Exclusion criteria were age less than 18 years, non-English speaker, advanced incapacity, life-threatening illness other than cancer, and nonavailability for follow-up.

Procedure
Before the consultation, patients were informed of the study's purpose and requirements and permission was sought to audio tape the consultation. After providing written consent, participants completed two short questionnaires measuring anxiety and information needs and preferences.

Coding
Patient participation was measured by counting the number of questions (requesting information or guidance) asked during the consultation. Consultation length was timed, as was the number of times the physician and patient spoke (events). We also calculated patients’ relative contribution to the conversation (patient events/total patient and physician events).

A coding manual was developed, with which two coders were trained. Coders recoded a random 10% of their own consultations and 10% of the other's consultations to determine intra- and inter-rater reliability (Cohen's statistic), which was 0.95 and 0.92, respectively.

Measures
Anxiety. Anxiety was measured before the consultation using the 20-item Spielberger State Anxiety Scale.³⁷ Respondents indicated their level of agreement (from "strongly agree" to "strongly disagree" on a 4-point Likert scale) to each of the items, with raw scores summed to produce a total score of 20 to 80, with higher values representing higher levels of anxiety. This scale is used widely in cancer populations.³⁸ Cronbach's coefficient for this scale was .94.

Information needs and preferences. Participants indicated the amount of information they wanted about seven aspects of their disease using the Information Styles Questionnaire³⁹ rated on a 5-point Likert scale ("absolutely want no more" to "want a great deal more"). Item scores were summed to produce a measure of information needs (7 to 35). Cronbach's coefficient for this scale was .90. Information preference was assessed using two items derived from the same questionnaire. Questions addressed preferred amount of information (3-point Likert scale) and detail (5-point Likert scale). Because of the highly skewed distribution, scores on the information question were dichotomized into "prefer all information" (score 3) and "do not prefer all information" (scores 1 and 2). Likewise, scores on the detail question were dichotomized into "prefer as many details as possible" (score 5) and "do not prefer as many details as possible" (score 1 to 4).

Recall. Recall was measured using a structured telephone interview with open-ended questions⁴ within 10 days after the consultation. Patients were prompted to remember details physicians gave about diagnosis (eg, cancer site, extent), prognosis (eg, chances of cure, life expectancy), and treatment (eg, type of regimen, side effects). Each item recalled by the patient during the telephone interview was recorded and compared with the items mentioned by the oncologist during the audio-taped consultation. The number and percentage of facts recalled accurately in total and for each category separately were calculated. To standardize recall in relation to the amount of information discussed in the consultations, we used percentage recall as the outcome.

Medical Details
Physicians provided medical details for each patient enrolled onto the study, including treatment intent (curative, adjuvant, or palliative), estimated prognosis (weeks to months, years, normal life expectancy), and ECOG performance status, which is an assessment of the disease progression and daily living abilities of a patient ranging from 0 (fully active) to 5 (dead).³⁶

Statistical Analysis
² tests and independent samples t tests, as appropriate, were used to compare patients who filled out the recall questionnaire with those who did not, as well as to compare younger patients (age < 65 years) with older patients (age 65 years).

Multiple regression analysis was used to examine predictors of percentage recall. The following six sets of variables were entered as separate blocks: (1) background characteristics, (2) age (continuous) and age-related variables, (3) information needs, (4) patient participation level, (5) consultation characteristics, and (6) interaction terms (ie, age x variable). The analysis revealed a quadratic rather than linear relationship between percentage recall and the total amount of information presented. To account for this nonlinearity, we used a second-order polynomial regressor (quadratic) for this variable.⁴⁰ Throughout, type of intervention and whether or not the patient had listened to an audio tape of the consultation before the recall test was controlled for. All continuous variables were mean-centered. As information preferences were uniformly quite high without variability, these were not used as a variable in the above analyses. All analyses were conducted using SPSS (version 14.0; SPSS Inc, Chicago, IL) and results were considered significant when P < .05.

	RESULTS

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Patient Characteristics
Three hundred forty-nine patients were considered eligible for the larger study, to which 318 patients consented (91%). Patients who refused participation most commonly reported feeling too anxious; others were not interested or reported feeling too ill. Of the 318 patients who participated in the larger study, 260 patients (82%) completed the recall interview and comprised the subsample for this study. Patients without a recall interview were more likely to have received a QPS with an active physician (39.7% v 22.3%) and less likely to have received a QPS with a passive physician (15.5% v 26.9%) or be in the control group (44.8% v 50.8%, ²(2) = 8.42; P < .05). No other demographic and disease differences between those with a recall interview and those without were found. Participant characteristics are shown in Table 1.

Presentation and Recall of Information
Mean consultation length was significantly higher for younger patients (31.9 minutes; SD = 13.8 minutes; range, 7.8 to 70.0 minutes) than for older patients (28.0 minutes; SD = 12.3 minutes; range, 9.8 to 72.6 minutes; P < .05). No significant age differences regarding total amount of information presented and total percentage recall were found (Table 2).

View this table: [in this window] [in a new window]   Table 2. Information Discussed, Recalled Facts, and Percent Recall According to Age (< 65 years, n = 166; 65 years, n = 92)

The block with age-related variables was significant and accounted for 11% of the variance in recall (P < .01). Prognosis was a significant predictor, whereas chronologic age, ECOG performance status, treatment intent, and anxiety were not. Patients with an estimated prognosis of years (β = –.302, P < .01) or weeks to months (β = –.463, P < .001) had lower recall scores compared with patients with normal life expectancy (Table 4). Prognosis remained a significant predictor of recall in subsequent blocks.

Adding the block with the participating behavior variables did influence recall (R² = 0.03, P < .05). Number of patient questions significantly predicted recall (β = –.198, P < .01); the more questions patients asked, the less they recalled. Relative patient contribution did not influence recall; this remained the same in all subsequent blocks.

The final block containing consultation characteristics was significant and accounted for 10% of the variance in recall (P < .001). Total amount of information presented (β = –.191, P < .05; quadratic component, β = .157, P < .05) and consultation duration (β = –.307, P < .01) were both significant predictors of recall; recall was lower after longer consultations and when more information was presented. The positive quadratic component shows that the decrease in recall slows down when the highest amounts of information are presented. Furthermore, introducing these variables revealed a negative association between age and recall (β = –.165, P < .05). This indicates that recall did decrease with age but that this effect was suppressed by differences in consultation length and the amount of information presented in consultations with patients from different ages. Finally, the effect of number of patient questions disappeared (β = –.002, NS) when the block with consultation characteristics was introduced.

None of the interactions between age and the other variables were significant.

Exploring Type of Information
Because recall of information was negatively associated with prognosis, we tested the hypothesis that prognosis does not matter, but rather it is the emphasis that is put on prognosis in the consultation that does matter. Therefore, the amount of information presented about prognosis and the other information categories (diagnosis and treatment) were added to the final model, with separate regressions conducted for each category. The number of prognosis items presented significantly predicted recall (β = –.214, P < .01), explaining 3% of the variance in recall (P < .01). This suggests that the more prognosis information presented, the less information patients recalled. Number of diagnosis and treatment items did not predict recall. This effect could not be explained in terms of levels of anxiety. Introducing the number of prognosis items discussed did not influence any of the other effects.

	DISCUSSION

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Our analysis revealed that younger and older patients correctly recalled 49.5% and 48.4% of the information, respectively. It is difficult to compare recall rates found in different studies because of variance in study characteristics (eg, recall assessment methods). Nevertheless, this resembles the results of other studies showing that, regardless of age, patients with cancer forget substantial amounts of information.^4-6,41

Age significantly decreased recall of information, but this effect was only present when consultation length and total amount of information presented were taken into account. Apparently, if consultations are longer and if more information is presented, older patients have more trouble remembering information. Physicians seemed to have anticipated this effect by adjusting the amount of information they presented according to age. Also, older patients asked fewer questions than younger patients. And contrary to our expectations, the more questions patients asked, the less they recalled. However, this effect disappeared when controlling for consultation length and amount of information presented.

More importantly, our study revealed that estimated prognosis predicted recall. Patients with a poorer prognosis consistently remembered less information than patients with a better prognosis. Perhaps not surprisingly, these results indicate that recall is not simply a function of chronologic age, but rather a more complicated outcome. This is supported by the fact that although the variables in our model explained a substantial amount of the variation in recall (29%), a larger part remained unexplained. Clearly, other factors, for instance cognition and frailty, have to be explored to completely understand the mechanisms underlying information recall.

It is unclear why and how patient prognosis predicts recall. Perhaps patients with a more advanced disease forget information to maintain a positive spirit.⁴² Even though many patients want to be fully informed, more vulnerable patients, including patients with a poorer prognosis, seem less likely to want to know every detail of their disease and treatment.⁴³ Confronting patients with information they do not want is often not effective, as they will not remember it.⁴⁴ Gattellari et al²² found that denial plays a role in misunderstanding information provided by oncologists. Mechanisms of denial may act to block news perceived as threatening; similarly, denial may be a mechanism to explain poorer recall in patients with a poorer prognosis, as found in this study. Indeed, there is evidence that people with a repressive coping style remember less information than nonrepressors.^45,46 A review on denial in patients with cancer showed that denial is more frequent in older patients and in patients in a more progressing stage of their disease.⁴⁷ The relationship between denial, prognosis, and recall seems evident, but more research is needed to disentangle the mechanisms involved.

In general, patients do not hear much of what is said after bad news is delivered.⁴⁸ We therefore explored the hypothesis that it is not prognosis as such, but rather discussing prognosis that impedes patients’ recall. Interestingly, the more prognosis information was provided, the less information patients recalled, regardless of their actual prognosis. Although it is not exactly clear how patients conceptualize bad news,⁴³ prognosis information may be associated with the risk of death and disease recurrence, inducing negative emotions.⁴⁹ Other studies have found that negative emotions result in attentional narrowing,⁵⁰ perhaps explaining the effect of prognosis information on recall. Communicating prognosis requires careful tailoring to individual patient's preferences for more or less information and balancing the needs for clear information while maintaining hope.^42,51 Recently, methods have been proposed to assist physicians with this clearly demanding task.⁵²

Our study is limited by the fact that we did not measure patients’ cognitive function.⁵³ However, the similar results for recall in younger and older patients do not make it likely that cognitive disorders played an important role in this study. In addition, our definition of older patients (age 65 years) may be challenged. In future studies, it might therefore be worthwhile to include measures that detect older patients who are especially vulnerable, such as frailty assessments or geriatric screening tools.¹⁷ Also, it is important to use prompts when measuring recall. Originally, we measured recall by simply asking patients what the physician had said (free recall). Because this resulted in low recall scores, we had to prompt patients to remember information.

In this study, more than half of the provided information was forgotten. Older patients were particularly vulnerable to information overload. However, our results also clearly suggest that "the frail are not always the elderly,"⁵⁴ as a poorer prognosis seems to reduce recall of information independent of age. There is a substantial body of literature on how to improve recall. Suggestions are to tailor information to patients’ needs;²⁹ prioritize to the most important, personally relevant information;¹⁶ organize and categorize;³ repeat^55,56 and summarize the most relevant information and review it on subsequent visits;⁵⁷ use simple language;¹⁶ and provide written materials¹⁶ or audio-recordings^58,59 for later referral. More research is necessary regarding the complex interaction of wanting to know and not wanting to know (denial) and the influence of the emotional context.

	AUTHORS’ DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST

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The author(s) indicated no potential conflicts of interest.

	AUTHOR CONTRIBUTIONS

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Conception and design: Jesse Jansen, Phyllis N. Butow, Julia C.M. van Weert, Sandra van Dulmen, Thea J. Heeren, Jozien M. Bensing

Provision of study materials or patients: Rhonda J. Devine

Collection and assembly of data: Phyllis N. Butow, Martin H.N. Tattersall

Data analysis and interpretation: Jesse Jansen, Phyllis N. Butow, Julia C.M. van Weert, Jozien M. Bensing, Sandra van Dulmen, Martin H.N. Tattersall

Manuscript writing: Jesse Jansen, Phyllis N. Butow, Julia C.M. van Weert, Sandra van Dulmen, Thea J. Heeren, Martin H.N. Tattersall

Final approval of manuscript: Jesse Jansen, Phyllis N. Butow, Julia C.M. van Weert, Sandra van Dulmen, Thea J. Heeren, Jozien M. Bensing, Martin H.N. Tattersall

	ACKNOWLEDGMENTS

 
We thank the patients and physicians who participated in this study and Ben Colagiuri and Peter Spreeuwenberg for useful statistical suggestions.

	NOTES

 
published online ahead of print at www.jco.org on October 20, 2008

Supported by the Dutch Cancer Society, the René Vogels Foundation, and the Netherlands Organization for Scientific Research.

Authors’ disclosures of potential conflicts of interest and author contributions are found at the end of this article.

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Submitted November 21, 2007; accepted July 8, 2008.

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