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Journal of Clinical Oncology, Vol 24, No 33 (November 20), 2006: pp. 5265-5270 © 2006 American Society of Clinical Oncology. DOI: 10.1200/JCO.2006.06.5326 Communication About Prognosis Between Parents and Physicians of Children With Cancer: Parent Preferences and the Impact of Prognostic Information
From the Departments of Pediatric Oncology and Adult Oncology, the Center for Outcomes and Policy Research, Dana-Farber Cancer Institute; the Department of Medicine, Children's Hospital; the 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
Purpose: Concerns about the harms of prognostic information, including distress and loss of hope, cause some physicians to avoid frank disclosure. We aimed to determine parent preferences for prognostic information about their children with cancer and the results of receiving such information. Patients and Methods: We surveyed 194 parents of children with cancer (overall response rate, 70%), treated at the Dana-Farber Cancer Institute and Children's Hospital (Boston, MA) and the children's physicians. Our main outcome measure was parent rating of prognostic information as extremely or very upsetting. Results: The majority of parents desired as much information about prognosis as possible (87%) and wanted it expressed numerically (85%). Although 36% of parents found information about prognosis to be extremely or very upsetting, those parents were more likely to want additional information about prognosis than those who were less upset (P = .01). Parents who found information upsetting were no less likely to say that knowing prognosis was important (P = .39), that knowing prognosis helped in decision making (P = .40), or that hope for a cure kept them going (P = .72). Conclusion: Although many parents find prognostic information about their children with cancer upsetting, parents who are upset by prognostic information are no less likely to want it. The upsetting nature of prognostic information does not diminish parents' desire for such information, its importance to decision making, or parents' sense of hope.
Discussing prognosis with patients is more than just a difficult undertaking; to many physicians, it seems like the wrong thing to do.1-3 The concern that prognostic information can cause distress3-7 and loss of hope4,5,8-13 leads some physicians to avoid the topic,14-16 to disclose vague4 or overly optimistic information14,15 when pressed, and to focus on treatment rather than expected outcomes.4 Even though physician decisions to limit communication about prognosis often emanate from compassion,3-5 unrealistic expectations for outcomes can inappropriately alter choices that patients make about treatment and how to live their lives.17-21 If physician beliefs about the harms of upsetting information influence communication patterns, then the merits of these beliefs should be examined. Although there is evidence that physicians limit prognostic information to prevent distress,3-5,14,15 whether this practice reflects patient preferences is not known. In addition, although most existing literature focuses on adult patients, we know little about how such work applies to parents of children with cancer. In this study we evaluated parental preferences for prognostic information about their children with cancer. Specifically, we evaluated whether parents who found prognostic information upsetting were less likely to want such information.
Study Population The study was conducted at the Dana-Farber Cancer Institute and Children's Hospital (Boston, MA). We surveyed parents and physicians of children undergoing treatment for cancer between April 2004 and September 2005. One parent per family was eligible to participate if he or she could read English, if the child was 18 years old or younger, if the child was between 30 days and 1 year from the date of cancer diagnosis, and if the child's physician gave us permission for contact (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 to return if they did not wish to participate. Two subsequent identical contacts were made with nonresponding parents. Of 276 eligible parents, 194 (70%) completed the survey. Twenty-four parents declined participation and 53 had not responded after three attempts. Five children died after the parent was approached for the study, rendering the parent ineligible to participate. After the parent survey had been completed, the primary oncology attending physician for each patient was given the physician survey and a letter. Ninety-nine percent of physician surveys (193 of 194) were completed, representing 20 of 21 possible physicians.
Data Collection The 106-item parent questionnaire included 63 previously validated questions, including questions about the communication process.24 Parents were asked whether an oncologist had ever discussed their child's prognosis, whether prognosis was expressed quantitatively, and who was present for the initial discussion about diagnosis and treatment. Prognosis was defined as "whether or not your child will be cured of cancer, how long your child is expected to live, and the kind of life your child can expect to have." Items assessing goals of care and likelihood of cure were based on previously validated scales.17,18,25 Parents were asked "how likely you now think it is that your child will be cured of cancer." Possible responses were: "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%)"; "very unlikely (< 10%)". Parents were asked "how upsetting" it currently is "to know information about your child's prognosis," and how important it is "to know about your child's prognosis" and "to have a precise understanding of your child's chances of being cured, expressed as a percent likelihood" ("extremely," "very," "somewhat," "a little," "not at all.") Parents were asked about their "preferences for details of information about your child's prognosis" and "diagnosis and treatment." Parents were asked "how helpful knowing about your child's prognosis has been" ("extremely," "very," "a little," "not at all") for "making decisions about treatment," "preparing for the future," "maintaining hope," "coping with the disease," and "overall." Information preferences were assessed using questions from the Information Styles Questionnaire26 and the Information Needs Questionnaire.27 The questionnaire evaluated the communication process using six items from the Picker Survey,28 trust using an item from the Trust in Physicians scale,29 social support using four items from the Medical Outcomes Study Social Support Survey,30 coping style using the Brief COPE,31 and sense of faith and meaning using the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being (FACIT-SP).32 The questionnaire also asked about the parent's sex, relationship to the child, age, educational level, marital status, race/ethnicity, and religion. The 20-item physician questionnaire asked about goals of care and likelihood of cure, with questions and response categories identical to those on the parent questionnaire, and about the patient's diagnosis and treatment. 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). Parent report that information about prognosis was "extremely" or "very" upsetting was used to indicate greater upset, with categories of "somewhat," "a little," or "not at all" indicating lesser upset. Other variables using Likert scales were dichotomized as specified in tables and text. The FACIT-SP sense-of-meaning subscale was dichotomized into an upper quartile and lower three quartiles of scores in the study population, to allow us to consider specifically those parents who were at the upper end of the range. All analyses were replicated with ordinal scoring of variables to ensure that reported associations adequately represented actual relationships.
The weighted kappa [ Parent perception of information about prognosis being "extremely" or "very" upsetting was the outcome variable in a multivariable logistic regression model. To select independent variables, we included variables for which bivariable associations were significant at the .10 level. Based on our theoretical model, variables considered included parents' information preferences, communication process attributes, physician-rated likelihood of cure, the parent's sense of hope and meaning, time since diagnosis, and parental overestimation of prognosis, defined as any parent rating with a higher likelihood of cure than the physician had reported. Models included parent sex, race, educational level, and child age regardless of the significance of their coefficients. Starting with the least significant variable in the multivariate model, variables were removed sequentially until all remaining independent variables were significant at the .05 level.
Characteristics of parents and children are described in Table 1. Participating physicians were the attending pediatric oncologists (N = 20) for the patients studied.
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). Most often, both parents were present for the initial discussion about the child's diagnosis and plans for treatment (85%), but 5% of parents were alone for this conversation. Many parents (42%) reported that the child had been present. Children were more likely to be present if they were older (P = .03) and if the prognosis was better (P = .01). Nearly all parents (93%) reported that an oncologist had discussed prognosis with them at some time. The majority of parents (67%) said that the oncologist had initiated discussion about prognosis, and that information about prognosis was described numerically (69%), as a percent likelihood of cure. The majority of parents (87%) and physicians (91%) reported that their primary goal of care was to cure the child's cancer.
Nearly all parents wanted as much information as possible about diagnosis and treatment (91%; Table 2) and prognosis (87%). Parents' desire for detail about diagnosis and treatment tended to mirror desire for detail about prognosis (weighted
The majority (85%) of parents felt that having a numeric understanding of prognosis was extremely or very important. Among these, most (73%) said that they received such information from the oncologist. Parents who were more upset by prognostic information were less likely to report receipt of a quantitative estimate of prognosis (P = .01). More than one third of parents wanted more information about prognosis than they had received (Table 3). Only one parent wanted less information. Thirty-six percent of parents found information about prognosis to be extremely or very upsetting ("extremely," 17%; "very," 19%; "somewhat," 22%; "a little," 20%; "not at all," 21%). Parents were more likely to desire additional information if they found information about prognosis to be upsetting (P = .01).
Parents who found information about prognosis very or extremely upsetting were no less likely to say that prognostic information was important (odds ratio [OR], 0.57; P = .39; Table 4), to want a numeric estimate of prognosis (OR, 0.68; P = .21), or to believe that prognostic information had helped them with decision making (OR, 0.73; P = .40) than other parents. Although a lower proportion of parents who were upset felt that knowing about prognosis had contributed to maintaining hope (OR, 0.33; P = .01), most parents felt that hope for cure (OR, 1.28; P = .72) and for a good quality of life (OR, 0.68; P = .57) kept them going a great deal, regardless of their degree of upset. In addition, the majority of parents felt that prognostic information had been extremely or very helpful in maintaining hope, even if they were upset (77%), and regardless of the child's prognosis.
Parents who were upset by prognostic information were more likely to report that the oncologist had never discussed the child's prognosis (OR, 5.90; P = .04; Table 4). Parents who were more upset were less likely to report positive attributes of parent-oncologist communication, including physician sensitivity (OR, 0.38; P < .0001). In a multivariable logistic regression model (Table 5), parents were more likely to report being upset by prognostic information if the physician-reported prognosis was poor (OR, 1.98; P < .001). Parents were less likely to be upset if they reported that the child had been present at the initial conversation about diagnosis and treatment (OR, 0.37; P < .001), that the oncologist always conveyed information in a sensitive manner (OR, 0.40; P = .001), and that they found a great sense of meaning in the experience of the child's illness (OR, 0.12; P < .0001).
The vast majority of parents we studied wanted prognostic information about their children in as much detail as possible and expressed numerically. One third of parents reported that the oncologist did not initiate discussion about prognosis, and more than one quarter reported that they did not receive numeric prognostic information, despite considering it important. Many parents found information about prognosis to be upsetting, but nonetheless they wanted such information, feeling that it was important to have and helpful to decision making, and wanting additional information more often than parents who were not upset. Physicians sometimes worry that information about prognosis may take away hope, but we found no evidence of such an effect. The majority of parents found prognostic information important to maintaining hope, even when it was upsetting, and even when the child's prognosis was poor. In addition, the degree to which parents placed hope in a cure was not related to how upset they were. The tendency to tailor information on the basis of the reaction of the parent, consciously or unconsciously, may leave parents who display greater emotional distress less informed. Nearly half of the parents in our study who were upset by prognostic information wanted more information about prognosis, reporting this feeling more often than those who were less upset, and suggesting that indeed these parents often feel underinformed. Parents who were upset were also more likely to report that the oncologist had never discussed prognosis. In previous studies, parents have reported that stress impairs understanding and retention of medical information.33 Parents who are upset may be affected both by the physician's reluctance to increase distress by discussing information in further detail, and by their own inability to process information effectively during a time of emotional distress. Physicians therefore may need to review prognostic information when the acute distress has faded. Not surprisingly, parents of children with poor prognoses are more likely to find prognostic information upsetting, but sensitive communication was associated with decreased upset, a finding that supports the idea that, whatever the medical content of the conversation, the parent-physician interaction has value. Can physicians both be sensitive and deliver detailed prognostic information? While these seemingly conflicting attributes drive many physicians to avoid such conversations, our findings suggest that delivery of detailed information may be a fundamental part of sensitive care. Parents tended to be less upset when the child was present for the first major conversation about the diagnosis and treatment. This effect remained after adjustment for the child's age and prognosis, raising the question of whether more families may benefit from having children present in such encounters. Having the child present could alter the tone of conversation, so that prognostic information is portrayed with greater optimism. Our analysis of parent-perceived and physician-perceived prognosis does not support this; agreement between parent and physician reports of prognosis was no less likely when the child had been present for the discussion. A second possibility is that having the child present helps the parent in other ways. Some studies emphasize the importance to parents of direct communication between physicians and children.34,35 In addition to involving the child in plans for care and addressing their questions openly, direct communication may relieve parents of the anxiety associated with transmitting this information to their children. Parents who had a greater sense of meaning in the child's illness tended to find prognostic information less upsetting. The process of forming meaning is complex and highly individual. Even so, this finding challenges us to consider how health care providers can support this process. There are several potential limitations of this study. Parents who found prognostic information upsetting may have been less likely than other parents to participate in the study. Parents of children with hematologic malignancies were slightly more likely to participate than parents of children with solid tumors. The generally better prognoses among children with hematologic malignancies raise the concern that our sample under-represents parents of children with poor prognoses. Future research should include strategies to ensure that parents of children with poor prognoses are represented and that participation is not overly burdensome for such parents. We used a questionnaire to assess communication of prognostic information, and evaluated parental distress with a single question. These issues are complex, and parent reports of being upset by prognostic information could mean many different things. We also did not explore in depth the meaning parents ascribe to hope. Future research should include attention to the separate issues involved in these concepts. We did not evaluate in detail what prognostic discussions entailed, and we assumed a model of prognosis in which the likelihood of cure is the relevant outcome. We believe that information about cure is most meaningful to parents of children with cancer, as reflected in our finding that cure was the primary goal of care for most participating parents, and we chose to focus our work on this issue. We conducted our study at a single institution. However, children with cancer often receive their care in pediatric cancer centers where subspecialty services are available.36 We believe that our findings may therefore be generalized to the care of most children with cancer. We studied only preferences for, and the effects of, prognostic information in parents of children with cancer. Although the role of parents in a child's care differs from that of an adult cancer patient in his or her own care, many of the emotional and communication challenges of the two situations are the same. We believe, therefore, that findings may be similar for adults. Cultural differences in information and end-of-life care preferences37-41 make examination of these issues in a more diverse population an important future step. Conversations about prognosis should take into account the family's preferences and the medical importance of disclosure. Because preferences can change as the clinical situation changes,42 such discussions should not be limited to a single conversation.43 The study was cross-sectional. We do not know if parents would have wanted the same information at the time of diagnosis. However, time since diagnosis was not related to parent reports of feeling upset, and controlling for time in our multivariable model did not change our results. Previous studies have explored the accuracy of prognostic understanding,44-46 patient preferences for information,24,47-52 and physician styles of giving prognostic information.2,3,6,11,14,53,54 Although patients often want prognostic information, many physicians believe that communication of prognosis can cause harm by creating emotional distress and loss of hope. The desire among many physicians to avoid detailed discussions of prognostic information is a compassionate instinct, emanating from the desire to avoid causing pain. But parents want this information, even though it may be upsetting. For many parents, compassion by the physician includes a willingness to inform. Parents have the capacity to hope for a cure while simultaneously preparing for the possibility of death,8,18 but they need information to do so.
The authors indicated no potential conflicts of interest.
We thank the parents and physicians who participated in the study, E. Francis Cook, ScD, for statistical advice, and Amy Lynch, MPH, for assistance in enrolling participants.
Supported by a fellowship from the Agency for Healthcare Research and Quality (T32 HS00063; J.W.M.), an American Society of Clinical Oncology Young Investigator Award, and a fellowship from the Glaser Pediatric Research Network. Authors' disclosures of potential conflicts of interest and author contributions are found at the end of this article.
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-212, 2001 Submitted March 9, 2006; accepted September 6, 2006. This article has been cited by other articles:
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Copyright © 2006 by the American Society of Clinical Oncology, Online ISSN: 1527-7755. Print ISSN: 0732-183X
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ABSTRACT
INTRODUCTION
] statistic, with default weights specified in SAS, was used to determine agreement between parent preferences for detail about diagnosis and treatment and about prognosis. The 
2 statistic was used to determine the association between parents' report that information was upsetting and nonordinal multicategory variables. Other bivariable and multivariable analyses were performed using generalized estimating equations (the SAS GENMOD procedure; SAS Institute, Cary, NC) to control for clustering by physician. 
