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Understanding of Prognosis Among Parents of Children With Cancer: Parental Optimism and the Parent-Physician Interaction

Jennifer W. Mack, E. Francis Cook, Joanne Wolfe, Holcombe E. Grier, Paul D. Cleary, Jane C. Weeks

From the Departments of Pediatric Oncology and Adult Oncology, and the Center for Outcomes and Policy Research, Dana-Farber Cancer Institute; Department of Medicine, Children's Hospital; Department of Epidemiology, Harvard School of Public Health; Department of Health Care Policy, Harvard Medical School; and the Department of Medicine, Brigham and Women's Hospital, Boston, MA

Address reprint requests to Jennifer W. Mack, MD, MPH, Center for Outcomes and Policy Research, Dana-Farber Cancer Institute, 44 Binney St, Boston, MA 02115; e-mail: jennifer_mack{at}dfci.harvard.edu

	ABSTRACT

TOP ABSTRACT INTRODUCTION PATIENTS AND METHODS RESULTS DISCUSSION AUTHORS' DISCLOSURES OF... AUTHOR CONTRIBUTIONS Appendix REFERENCES

 
Purpose Patients often overestimate their chances of surviving cancer. Factors that contribute to accurate understanding of prognosis are not known. We assessed understanding of likelihood of cure and functional outcome among parents of children with cancer and sought to identify factors that place parents at risk for overly optimistic beliefs about prognosis.

Patients and Methods We conducted a cross-sectional survey of 194 parents of children with cancer (response rate, 70%) who were treated at the Dana-Farber Cancer Institute and Children's Hospital in Boston, MA, and the children's physicians. Parent and physician expectations for likelihood of cure and functional outcome were compared. In 152 accurate or optimistic parents, we determined factors associated with accurate understanding of likelihood of cure compared with optimism.

Results The majority of parents (61%) were more optimistic than physicians about the likelihood of cure. Parents' beliefs about other outcomes of cancer treatment were similar (quality-of-life impairment, P = .70) or more pessimistic (physical impairment, P = .01; intellectual impairment, P = .01) than physicians' beliefs. Parents and physicians were more likely to agree about chances of cure when physicians had confidence in knowledge of prognosis (odds ratio [OR] = 2.55, P = .004) and allowed parents to take their preferred decision-making role (OR = 1.89, P = .019).

Conclusion Parents of children with cancer are overly optimistic about chances of cure but not about other outcomes of cancer therapy. Parents tend to be overly optimistic about cure when physicians have little confidence and when the decision-making process does not meet parents' preferences. These findings suggest that physicians are partly responsible for parents' unrealistic expectations about cure.

	INTRODUCTION

TOP ABSTRACT INTRODUCTION PATIENTS AND METHODS RESULTS DISCUSSION AUTHORS' DISCLOSURES OF... AUTHOR CONTRIBUTIONS Appendix REFERENCES

 
Patients often overestimate their chances of surviving cancer.^1-5 Excessive optimism about prognosis affects the decisions patients make about their medical care and how to live their lives.^4,6-9 Much of our knowledge of this issue comes from studies of adults with cancer,^1-3,6,10 but how such studies apply to children with cancer is not known. In addition, because many children survive cancer¹¹ but go on to have significant late effects of cancer and its treatment,¹² prognosis for pediatric cancer patients should include the possibility of long-term cancer- and treatment-related limitations. We know little about how well parents understand either aspect of prognosis for their children.

The reasons that patients tend to be overly optimistic about prognosis are not fully understood. Although physician communication and patient preferences have been considered as etiologies, previous studies have focused on physician communication strategies^10,13-18 and patient information needs^19-23 separately, without considering how knowledge about prognosis fits into the complex interaction between the patient or parent and the physician. We developed a model of prognosis communication that is influenced by multiple sources, including parent and physician attributes and the parent-physician interaction.

We sought to answer two related questions. First, are parents of children with cancer overly optimistic about future outcomes for their children? Second, what causes some parents to be overly optimistic about cure, whereas others understand such information with accuracy? We conducted a cross-sectional study of parents and oncologists of children with cancer to evaluate how closely parent expectations of likelihood of cure and other outcomes of cancer therapy, including limitations in physical and intellectual function and quality of life, match those of physicians. In addition, we asked parents and physicians about the communication process, information and decision-making needs, and personal characteristics. Using their responses, we sought to identify factors that place parents at risk for overly optimistic expectations about the chances their children will be cured of cancer.

	PATIENTS AND METHODS

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We surveyed parents and oncologists of children undergoing treatment for cancer at the Dana-Farber Cancer Institute and Children's Hospital in Boston, Massachusetts, between April 2004 and September 2005.²⁴ One parent per family was eligible to participate if they could read English, if their child was 18 years of age or younger, if their child was between 30 days and 1 year from the date of cancer diagnosis, and if the child's physician gave us permission to contact them (permission was denied for three parents). Eligible parents were mailed or given a letter inviting them to participate, the survey, and a postage-paid postcard that they could return if they did not wish to participate. Two subsequent contacts were made with parents who had not responded. Of 276 eligible parents, 194 (70%) completed the survey.

After the parent survey had been completed, the primary oncology attending physician for each patient was mailed or given the physician survey, accompanied by a letter. Ninety-nine percent of physician surveys (193 of 194 surveys) were completed, representing 20 of 21 physicians surveyed.

The questionnaires were developed after reviewing the literature and conducting exploratory interviews with parents and providers of children with cancer. Whenever possible, questions were drawn from previously validated surveys. New questions were developed using general principles of survey development.^25,26 Pilot testing allowed for iterative revision and assessment of face and content validity and respondent burden.

A theoretical model of the prognostic communication process is presented in Appendix Figure A1 (online only). On the basis of literature review and exploratory interviews, we hypothesized that numerous influences, including parent, physician, and patient attributes, and the parent-physician interaction affect parents' understanding of prognosis. Questionnaires were designed to test possible associations between factors in the theoretical model.

Study Outcomes
The primary outcome of the study was parental understanding of prognosis, which was defined as agreement between parent and physician estimates of likelihood of cure.^3,6 Parents and physicians were each asked about how likely they now think it is that the child will be cured of cancer; the response categories were as follows: "extremely likely (more than 90% chance of cure)"; "very likely (75% to 90%)"; "moderately likely (50% to 74%)"; "somewhat likely (25% to 49%)"; "unlikely (10% to 24%)"; and "very unlikely (< 10%)."

Understanding of the likelihood of functional impairment was a secondary outcome of the study. Parents and physicians were asked whether the child might have the following in 5 years, assuming the cancer is cured, compared with what would have been expected if the child had not had cancer: "limitations in physical abilities (such as difficulty exercising)," "limitations in intelligence (such as difficulty with schoolwork)," and "limitations in quality of life (such as difficulty enjoying time with family or friends)." Response categories were identical to those for the item about likelihood of cure.

Parent Attributes
The parent questionnaire assessed information preferences, using questions from the Information Styles Questionnaire²⁷ and the Information Needs Questionnaire²⁸; trust, using an item from the Trust in Physicians Scale²⁹; social support, using four items from the Medical Outcomes Study Social Support Survey³⁰; coping style, using the Brief Coping With Problems Experienced Scale³¹; and sense of faith and meaning, using the Functional Assessment of Chronic Illness Therapy–Spiritual Well-Being Scale.³² Parents were asked, "How confident are you in your knowledge of your child's prognosis?" The parent questionnaire also asked about the parent's sex, relationship to the child, age, educational level, marital status, race/ethnicity, and religion.

Patient Attributes
The physician questionnaire asked questions about the patient's diagnosis and treatment. Additional patient information (date of birth and date of diagnosis) was collected through medical record review.

Physician Attributes
Physicians were asked the year of their graduation from medical school and the number of hours per week spent in patient care.

Communication Process Attributes
Communication process attributes assessed in the parent questionnaire included parents' communication experiences³³; their sources of prognostic information (medical sources, such as oncologists or nurses; nonmedical sources, such as friends, family, the internet, reading, or other parents; and personal intuition, such as a feeling, a religious experience, or a growing acceptance); their decision-making preferences ("the role you would prefer to play" and "the role you actually played when making decisions about treatment")^27,28; their experience of the communication process³⁴; information quality about diagnosis, treatment, prognosis, functional outcome, causation, and response to treatment; and the affective impact of communication (how often communication made them feel upset, listened to, hopeful, and confused). Parents were also asked about how their oncologist's opinion about their child's prognosis compared with their own opinion ("oncologist is much more optimistic than I am," "oncologist is somewhat more optimistic," "our opinions are about the same," "oncologist is somewhat more pessimistic," or "oncologist is much more pessimistic"). Physicians were asked what likelihood of cure they had communicated to the family, if any, and about how confident they were in their knowledge of the likelihood of cure. The Institutional Review Board of the Dana-Farber Cancer Institute approved this study.

Statistical Methods
Analyses were conducted using the SAS statistical package (SAS Institute, Inc, Cary, NC). To assess parents' understanding of prognosis, we compared parent and physician responses to questions about cure and functional outcome. Agreement was defined as identical parent and physician ratings. Parents were considered optimistic when they considered cure more likely or impairment less likely than what physicians considered. The weighted statistic (a decrease of 20% in weight per degree of discrepancy) was used to determine the degree of agreement. For comparison of expectations for cure and functional outcome (Fig 1), likelihood of death (calculated as 1 – likelihood of cure) was used as the comparator for functional prognosis, and mean expectations were calculated using the midpoint of the ranges of probabilities in response options (for example, 37% was used for the range of 25% to 49%). The Bhapkar test of marginal homogeneity^35,36 was used to determine whether a predominant direction (parental optimism or pessimism) existed in distributions of parent and physician beliefs about likelihood of cure and functional outcome.

View larger version (20K): [in this window] [in a new window] [PowerPoint Slide for Teaching]   Fig 1. Mean parent and physician estimates of the likelihood of death from cancer and of future functional impairment (n = 178).

Principal factor analysis was used to combine individual communication questions into related factors. Factors with eigenvalues greater than 1 were retained, and an oblique rotation was determined (the SAS PROMAX procedure). Factors that emerged from this analysis included parent-rated quality of physician communication (Cronbach's = .86), quality of information ( = .87), the affective impact of communication ( = .79), and parent reliance on medical sources of prognostic information ( = .64), nonmedical sources ( = .75), and personal intuition ( = .61). Question responses were summed and then dichotomized at the sample median for analysis. Other variables using Likert scales were dichotomized as specified in tables and text. Analyses were replicated with ordinal or continuous scoring to ensure that reported associations represented actual relationships.

The number of categories of discrepancy between parent and physician ratings of likelihood of cure served as the outcome variable for ordinal logistic regression. Possible values ranged from 0 (parent and physician agreed about likelihood of cure) to 5 (parent reported a > 90% chance of cure, whereas physician reported a < 10% chance of cure). The proportional odds assumption was satisfied (Score test, P = .10).

To account for clustering of patients within physicians, we used generalized estimating equations (the SAS GENMOD procedure with independent correlation structure by physician identification). To select independent variables for the model, we first selected variables for which bivariable associations were significant at the P = .10 level. Variables considered were those described in the theoretical model. Starting with the least significant variable in the multivariate model, variables were removed sequentially until all remaining independent variables were significant at the P = .05 level. Models included physician-rated prognosis, parent sex, race, educational level, child age, and diagnostic group (hematologic malignancy, brain tumor, or other solid tumor) regardless of the significance of their coefficients.

	RESULTS

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Parent respondents were predominately female, white, married, and well educated (Table 1). Nonrespondents did not differ significantly from respondents with respect to child sex, age at diagnosis, or diagnosis. Nonrespondents were more likely than respondents to have children with solid tumors and less likely to have children with hematologic malignancies, but this difference was not statistically significant (P = .07).

Mean parent and physician estimates of the likelihood of death and of future functional impairment are shown in Figure 1. Relationships between parent and physician estimates are shown in Figure 2. Although parent estimates of the likelihood of cure were predominantly optimistic compared with physician estimates (P < .0001), the distributions of parent estimates of functional outcomes were similar to (quality-of-life impairment, P = .70) or more pessimistic than (physical impairment, P = .01; intellectual impairment, P = .01) physician estimates. Nearly all parents considered knowing about how cancer or its treatment might affect the child's life in the future (186 of 194 parents, 96%) to be extremely or very important.

View larger version (21K): [in this window] [in a new window] [PowerPoint Slide for Teaching]   Fig 2. Relationships between parent and physician estimates of the likelihood of death from cancer and of future functional impairment (n = 178). P values represent test of marginal homogeneity (Bhapkar test).

	DISCUSSION

TOP ABSTRACT INTRODUCTION PATIENTS AND METHODS RESULTS DISCUSSION AUTHORS' DISCLOSURES OF... AUTHOR CONTRIBUTIONS Appendix REFERENCES

First, in our evaluation of factors associated with parents' understanding of likelihood of cure, we found that physicians' confidence in their estimates of prognosis was a determinant of parents' knowledge. Previous research has found that confidence influences physicians' willingness to disclose prognostic information.¹⁴ When physicians do not feel confident about their estimated prognosis, they may limit the detail provided or the amount of time spent in discussion. Our findings suggest that, when discussion is open to interpretation, parents may leave these conversations with overly optimistic expectations.

Similarly, we found that parents whose roles in decision making match their ideal roles are more likely to have accurate perceptions of prognosis. We previously reported that most parents believe that knowing prognosis is helpful in decision making.²⁴ By allowing parents to take on their desired role in decision making, physicians might facilitate discussion about issues important to parents as they make these decisions.

Second, we evaluated parental perceptions of other outcomes of cancer therapy, including physical, intellectual, and quality-of-life impairment. Our hypothesis that parental optimism is pervasive, extending not just to the risk of dying of cancer but also to other serious future impairments related to cancer and its treatment, was not supported. In fact, parents were overly pessimistic about some future outcomes.

Although we could not determine the cause of this result from our study, we believe that physicians' communication styles could explain this finding. Physicians tend to describe treatment-related adverse effects in detail while providing less information about likelihood of cure. Physicians may feel greater ethical and legal responsibility for informing parents about treatment-related adverse effects^37,38 than about cancer progression, and standard informed consent documents for cancer treatments often reflect this emphasis. If physicians are capable of fully informing parents about risks of poor functional outcomes, then effective communication about likelihood of cure should also be possible.

Although we emphasize here the role of the physician in parents' understanding of prognosis, we also found that some parent attributes and coping strategies were more common among parents who overestimated chances of cure. An important question, however, is whether different physician communication styles might help these parents to understand prognosis with greater accuracy. Perhaps parents who rely on intuition, for instance, are also more subject to indirect physician messages such as an optimistic demeanor. Further work is needed to identify communication strategies that are particularly effective with these parents.

There are several potential limitations to this study. This study was cross sectional, with parents recruited up to 1 year after the child's diagnosis. We do not know whether parental understanding of prognosis was similar at the time of diagnosis. However, adjustment for time since diagnosis in our multivariable model did not change our results. Parents of children with solid tumors were slightly less likely to participate than parents of children with hematologic malignancies. Because children with hematologic malignancies generally have better prognoses, it is possible that our sample under-represents children with poor prognoses.

This study was conducted at a single institution with a small number of physicians. However, most children with cancer receive their care in pediatric cancer centers that are similar to the site where this study was conducted.³⁹ We focused on the care of children with cancer. However, our finding of parent optimism is consistent with studies of adults with cancer, and we expect that our results would apply to adults and to patients with other life-threatening conditions. We used a questionnaire to study parent-physician communication and parent knowledge about prognosis, with one parent studied per family, and were not able to observe conversations directly. We also used physician prognostic estimates as the standard of comparison despite evidence that physician predictions are often overly optimistic.⁴⁰ In doing so, we may have underestimated the discrepancy between parent estimates and actual outcomes.

We assessed beliefs about late effects broadly among parents of children with many different cancer diagnoses and many different treatments. Therefore, we chose to ask general questions about the likelihood of physical, intellectual, and quality-of-life impairment, rather than questions about specific late effects such as cardiomyopathy. Pilot testing confirmed that these general health issues were important to parents. However, parental knowledge about specific late effects is unknown. Impairment in general areas of health may also be a subjective judgment, and this may account for some of the discrepancies in understanding.

Others have documented that patients are often overly optimistic about their chances of being cured of cancer.^1-4,6 Our findings among parents of children with cancer are similar and extend previous research by investigating possible mechanisms for parents' optimism. The association we found between physician communication patterns and parents' knowledge, in combination with our finding that parents' optimism is limited to beliefs about cure and does not extend to other poor outcomes of cancer therapy, suggests that physician behavior has an important role in parents' optimism. Almost all parents of children with cancer want to know their child's prognosis.²⁴ It falls to the physician, then, to communicate such information effectively (clearly and explicitly), even when uncertainty about outcomes exists, and in a manner that allows parents to make decisions in the way they would choose.

	AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST

TOP ABSTRACT INTRODUCTION PATIENTS AND METHODS RESULTS DISCUSSION AUTHORS' DISCLOSURES OF... AUTHOR CONTRIBUTIONS Appendix REFERENCES

 
The authors indicated no potential conflicts of interest.

	AUTHOR CONTRIBUTIONS

TOP ABSTRACT INTRODUCTION PATIENTS AND METHODS RESULTS DISCUSSION AUTHORS' DISCLOSURES OF... AUTHOR CONTRIBUTIONS Appendix REFERENCES

 
Conception and design: Jennifer W. Mack, E. Francis Cook, Joanne Wolfe, Holcombe E. Grier, Paul D. Cleary, Jane C. Weeks

Collection and assembly of data: Jennifer W. Mack

Data analysis and interpretation: Jennifer W. Mack, E. Francis Cook, Joanne Wolfe, Paul D. Cleary, Jane C. Weeks

Manuscript writing: Jennifer W. Mack, Paul D. Cleary, Jane C. Weeks

Final approval of manuscript: Jennifer W. Mack, E. Francis Cook, Joanne Wolfe, Holcombe E. Grier, Paul D. Cleary, Jane C. Weeks

	Appendix

TOP ABSTRACT INTRODUCTION PATIENTS AND METHODS RESULTS DISCUSSION AUTHORS' DISCLOSURES OF... AUTHOR CONTRIBUTIONS Appendix REFERENCES

 

View larger version (25K): [in this window] [in a new window] [PowerPoint Slide for Teaching]   Fig A1. Theoretical model: influences on parents' understanding of likelihood of cure.

	ACKNOWLEDGMENTS

 
We thank the parents and physicians who participated in the study, and Amy Lynch, MPH, for assistance in enrolling participants.

	NOTES

 
Supported by Fellowship No. T32 HS00063 from the Agency for Healthcare Research and Quality (J.W.M.), an American Society of Clinical Oncology Young Investigator Award (J.W.M.), and a fellowship from the Glaser Pediatric Research Network (J.W.M.).

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

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TOP ABSTRACT INTRODUCTION PATIENTS AND METHODS RESULTS DISCUSSION AUTHORS' DISCLOSURES OF... AUTHOR CONTRIBUTIONS Appendix REFERENCES

 
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Submitted July 18, 2006; accepted January 9, 2007.

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