Communication About Prognosis Between Parents and Physicians of Children With Cancer: Parent Preferences and the Impact of Prognostic Information

2006 ◽  
Vol 24 (33) ◽  
pp. 5265-5270 ◽  
Author(s):  
Jennifer W. Mack ◽  
Joanne Wolfe ◽  
Holcombe E. Grier ◽  
Paul D. Cleary ◽  
Jane C. Weeks

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.

2006 ◽  
Vol 24 (18_suppl) ◽  
pp. 6033-6033
Author(s):  
J. W. Mack ◽  
E. F. Cook ◽  
J. Wolfe ◽  
H. E. Grier ◽  
P. D. Cleary ◽  
...  

6033 Background: Patients often overestimate their chances of surviving cancer. Factors that contribute to accurate understanding of prognosis among parents of children with cancer are not known. Methods: We conducted a cross-sectional survey of 194 parents of children with cancer (overall response rate 70%), treated at the Dana-Farber Cancer Institute and Children’s Hospital, Boston, Mass, and the children’s physicians. Our main outcome measure was agreement between parent and physician ratings of the child’s likelihood of cure. Results: The majority of parents (61%) were more optimistic about the likelihood of their child’s cure than their child’s physician was. Most parents, however, believed that their opinions about prognosis either matched (70%) or were more pessimistic (26%) than those of their physicians. When physicians were confident in their knowledge of the child’s prognosis, parent and physician perceptions of prognosis were more likely to agree (OR 2.55, P = .004). Parents whose role in decision-making matched their ideal role were more likely to give prognostic estimates that agreed with physician perceptions of prognosis (OR 1.89, P = .019). In contrast, parent confidence in knowledge (OR .07, P < .0001), coping strategies (disengagement, OR .31, P = .007; reliance on emotional support from others, OR .31, P = .029), and use of intuition to understand prognosis (OR .51, P = .012), were associated with overestimation of likelihood of cure. Conclusions: Many parents overestimate their children’s chances of being cured of cancer. Neither physician nor parent attributes alone account for this finding; rather, successful communication about prognosis requires that physicians relate to parents’ individual communication and decision-making needs. No significant financial relationships to disclose.


2007 ◽  
Vol 25 (18_suppl) ◽  
pp. 6510-6510
Author(s):  
J. W. Mack ◽  
E. F. Cook ◽  
J. Wolfe ◽  
H. E. Grier ◽  
P. D. Cleary ◽  
...  

6510 Background: Physicians sometimes selectively convey prognostic information to support patients’ hopes. However, the relationship between prognostic disclosure and hope is not known. Methods: We surveyed 194 parents of children with cancer (overall response rate 70%) in their first year of cancer treatment at the Dana-Farber Cancer Institute and Children’s Hospital, Boston, Mass, and the children’s physicians. We evaluated relationships between parents’ recall of prognostic disclosure by the physician and the extent to which physician communications “always” made them feel hopeful. A five-item index of prognostic disclosure assessed whether prognostic information was provided in any form, in quantitative terms, and in written form, whether the physician gave prognostic information before the parent asked, and whether parents wanted additional prognostic information beyond what they had already received. Results: Parents were less likely to report hopeful communication when the child’s likelihood of cure was low (OR .70 per category of decreasing likelihood of cure, P=.0003). However, parents who reported having received more extensive prognostic information were more likely to report hopeful communication, even when the prognosis was poor. In a multivariable model, parental report that physician communication “always” made them feel hopeful was associated with increased prognostic disclosure (OR 1.67 per element of disclosure, P=.009) and higher perceived communication quality (OR 5.39, P<.0001). In contrast, communication-related hope was inversely associated with the child’s likelihood of cure (OR .67, P=.006). Conclusions: Although physicians sometimes selectively convey prognostic information to preserve hope, we found no evidence that prognostic disclosure makes parents less hopeful. Instead, disclosure of prognosis by the physician can support hope for parents of children with cancer, even when the child’s prognosis is poor. No significant financial relationships to disclose. [Table: see text]


2007 ◽  
Vol 25 (35) ◽  
pp. 5636-5642 ◽  
Author(s):  
Jennifer W. Mack ◽  
Joanne Wolfe ◽  
E. Francis Cook ◽  
Holcombe E. Grier ◽  
Paul D. Cleary ◽  
...  

Purpose Physicians sometimes selectively convey prognostic information to support patients’ hopes. However, the relationship between prognostic disclosure and hope is not known. Patients and Methods We surveyed 194 parents of children with cancer (overall response rate, 70%) in their first year of treatment at the Dana-Farber Cancer Institute and Children's Hospital (Boston, MA), and we surveyed the children's physicians. We evaluated relationships between parental recall of prognostic disclosure by the physician and possible outcomes, including hope, trust, and emotional distress. Our main outcome was assessed by asking parents how often the way the child's oncologist communicated with them about the children's cancers made them feel hopeful. Results Nearly half of parents reported that physician communication always made them feel hopeful. Parents who reported receiving a greater number of elements of prognostic disclosure were more likely to report communication-related hope (odds ratio [OR], 1.77 per element of disclosure; P = .001), even when the likelihood of a cure was low (OR, 5.98 per element of disclosure with likelihood of a cure < 25%; P = .03). In a multivariable model, parents were more likely to report that physician communication always made them feel hopeful when they also reported receipt of more elements of prognostic disclosure (OR, 1.60; P = .03) and high-quality communication (OR, 6.58; P < .0001). Communication-related hope was inversely associated with the child's likelihood of cure (OR, 0.65; P = .005). Conclusion Although physicians sometimes limit prognostic information to preserve hope, we found no evidence that prognostic disclosure makes parents less hopeful. Instead, disclosure of prognosis by the physician can support hope, even when the prognosis is poor.


2007 ◽  
Vol 25 (11) ◽  
pp. 1357-1362 ◽  
Author(s):  
Jennifer W. Mack ◽  
E. Francis Cook ◽  
Joanne Wolfe ◽  
Holcombe E. Grier ◽  
Paul D. Cleary ◽  
...  

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.


2011 ◽  
Vol 29 (15) ◽  
pp. 2085-2090 ◽  
Author(s):  
Jennifer W. Mack ◽  
Joanne Wolfe ◽  
E. Francis Cook ◽  
Holcombe E. Grier ◽  
Paul D. Cleary ◽  
...  

Purpose To evaluate the extent to which parents of children with cancer are involved in decision making in the ways they prefer during the first year of treatment. Methods We conducted a cross-sectional survey of 194 parents of children with cancer (response rate, 70%) in their first year of cancer treatment at the Dana-Farber Cancer Institute and Children's Hospital (Boston, MA) and the children's physicians. We measured parents' preferred and actual roles in decision making and physician perceptions of parents' preferred roles. Results Most parents (127 of 192; 66%) wanted to share responsibility for decision making with their children's physician. Although most parents (122 of 192; 64%) reported that they had their preferred role in decision making, those who did not tended to have more passive roles than they wished (47 of 70; 67%; P < .001). Parents were no more likely to hold their ideal roles in decision making when the physician accurately identified the parents' preferred role (odds ratio [OR], 1.04; P = .92). Parents were less likely to hold more passive roles than they wished in decision making when they felt that physician communication (OR, 0.39; P = .04) and information received (OR, 0.45; P = .04) had been of high quality. Parents who held more passive roles than they wished in decision making were less likely to trust their physicians' judgments (OR, 0.46; P = .03). Conclusion Most parents of children in their first year of cancer treatment participate in decision making to the extent that they wish; although, nearly one fourth hold more passive roles than desired. High-quality physician communication is associated with attainment of one's preferred role.


2017 ◽  
Vol 35 (15_suppl) ◽  
pp. 6562-6562
Author(s):  
Maya Ilowite ◽  
Angel M. Cronin ◽  
Tammy I Kang ◽  
Jennifer W. Mack

6562 Background: Most parents of children with cancer say they want detailed prognostic information about their child’s cancer. However, prior work has been conducted in populations of limited diversity. We sought to evaluate the impact of parental race/ethnicity on prognosis communication experiences amongst parents of children with cancer. Methods: We surveyed 357 parents of children with cancer, and the children’s physicians at Dana-Farber Cancer Institute/Boston Children’s Hospital and Children’s Hospital of Philadelphia. Our outcome measures were parental preferences for prognostic information, physician beliefs about parental preferences, prognosis communication processes and communication outcomes. Except where noted, associations were assessed by logistic regression with generalized estimating equations to correct for physician clustering. Results: 87% of parents wanted as much detail as possible about their child’s prognosis, with no significant differences by race/ethnicity (P = .50). Physician beliefs about parental preferences for prognosis communication varied based on parent race/ethnicity. 60% of physicians for White parents reported they believed parents wanted as much detail as possible about their child’s prognosis, versus 36%, 38%, and 64% of physicians, respectively, for Black, Hispanic, and Asian/Other parents (P = .04). Parent race/ethnicity was not associated with actual prognostic disclosure as reported by parents (P = .79) or by physicians (P = .61). Accurate understanding of prognosis was higher amongst White (51%) versus non-White parents (range 22%-29%), although this difference was not statistically significant (P = .13, unadjusted). Conclusions: The majority of parents, regardless of racial and ethnic background, want detailed prognostic information about their child’s cancer. However, physicians rarely recognize the information needs of Black and Hispanic parents. Despite this discrepancy, prognosis communication outcomes were largely equivalent. Our findings suggest that in order to meet parents’ information needs, physicians should ask about the information preferences of parents of children with cancer prior to prognosis discussions.


2018 ◽  
Vol 3 (1) ◽  
pp. 238146831875798 ◽  
Author(s):  
Jesse Moskowitz ◽  
Thomas Quinn ◽  
Muhammad W. Khan ◽  
Lori Shutter ◽  
Robert Goldberg ◽  
...  

Introduction. Shared Decision-Making may facilitate information exchange, deliberation, and effective decision-making, but no decision aids currently exist for difficult decisions in neurocritical care patients. The International Patient Decision Aid Standards, a framework for the creation of high-quality decision aids (DA), recommends the presentation of numeric outcome and risk estimates. Efforts are underway to create a goals-of-care DA in critically-ill traumatic brain injury (ciTBI) patients. To inform its content, we examined physicians’ perceptions, and use of the IMPACT-model, the most widely validated ciTBI outcome model, and explored physicians’ preferences for communicating prognostic information towards families. Methods. We conducted a qualitative study using semi-structured interviews in 20 attending physicians (neurosurgery,neurocritical care,trauma,palliative care) at 7 U.S. academic medical centers. We used performed qualitative content analysis of transcribed interviews to identify major themes. Results. Only 12 physicians (60%) expressed awareness of the IMPACT-model; two stated that they “barely” knew the model. Seven physicians indicated using the model at least some of the time in clinical practice, although none used it exclusively to derive a patient’s prognosis. Four major themes emerged: the IMPACT-model is intended for research but should not be applied to individual patients; mistrust in the IMPACT-model derivation data; the IMPACT-model is helpful in reducing prognostic variability among physicians; concern that statistical models may mislead families about a patient’s prognosis. Discussion: Our study identified significant variability of the awareness, perception, and use of the IMPACT-model among physicians. While many physicians prefer to avoid conveying numeric prognostic estimates with families using the IMPACT-model, several physicians thought that they “ground” them and reduce prognostic variability among physicians. These findings may factor into the creation and implementation of future ciTBI-related DAs.


2016 ◽  
Vol 34 (33) ◽  
pp. 4023-4029 ◽  
Author(s):  
Jennifer W. Mack ◽  
Angel M. Cronin ◽  
Tammy I. Kang

Purpose Decision making is one of the ways in which parents serve as stewards of their children with cancer, but barriers to informed decision making among parents of children with cancer have been identified. We sought to evaluate the extent to which parents feel satisfied with, or regretful of, decisions made for their child’s cancer treatment and to identify factors associated with heightened regret. Methods We surveyed 346 parents of children with cancer within 12 weeks of their initial cancer treatment decision and the children’s physicians at Dana-Farber Cancer Institute/Boston Children’s Hospital and the Children’s Hospital of Philadelphia. Our main outcome measure was heightened regret as measured by the Decisional Regret Scale. Results Sixteen percent of parents (N = 54) met our definition of heightened decisional regret. In a multivariable logistic regression model, race/ethnicity was associated with regret, with black (odds ratio [OR], 6.55; 95% CI, 2.30 to 18.7), Hispanic (OR, 2.15; 95% CI, .69 to 6.65), and other race parents (OR, 4.68; 95% CI, 1.58 to 13.8) at increased risk for regret relative to whites ( P = .001 across all categories). In contrast, parents who reported receiving high-quality information (OR, .45; 95% CI, .23 to .91; P = .03) and detailed prognostic information (OR, .48; 95% CI, .24 to .96; P = .04), who trusted the oncologist completely (OR, .32; 95% CI, .17 to .63; P = .001), and who held their ideal role in decision making (OR, .49; 95% CI, .25 to .95; P = .04) were less likely to experience regret. Conclusion Although many parents are satisfied with decisions made for their children with cancer, racial and ethnic minority parents are at heightened risk for regret. Clinicians may be able to reduce this risk by providing high-quality information, including prognostic information, involving parents in decision making in the ways they wish, and serving as trusted providers.


2019 ◽  
Vol 8 (4) ◽  
pp. 8881-8884

The article analyzes the dynamics of the indicators of the merger and acquisition market in the banking sector, as well as the indicator of revocation of banking licenses. The analysis has shown the outperformance of bank decrease in relation to bank acquisition over the same period, which indicates a significant impact of license revocation on the merger and acquisition market. The article assesses the impact of the merger and acquisition market on the structure of proportional regulation in favor of banks with universal licenses. An increase in the concentration of capital is observed, especially in banks with state participation. The article investigates the methods of calculating the cost of mergers and acquisitions. The authors propose to add two more factors to the already known factors of change in earnings per share due to mergers and acquisitions: the type of license revoked by the regulator as a result of the rehabilitation and goodwill, which should be considered in the merger cost using additional coefficients. This will allow the merger cost to be more accurately determined and provide the investor with additional information for decision-making.


2016 ◽  
Vol 50 (3) ◽  
pp. 149-156
Author(s):  
Lorna Awo Renner ◽  
Deborah McGill

Background: Developing countries such as Ghana have very poor childhood cancer survival rates. There is a need to determine reasons for late presentation and treatment abandonment which are major causes of poor survival. Understanding these issues could inform effective strategies for childhood cancer control in resource-constrained settings.Aim: To explore factors influencing parental decision-making for children with cancer in Ghana with regard to health seeking and retention in treatment, in order to provide information that will guide Public Health interventions for childhood cancer control.Method: This exploratory qualitative study was conducted based on an interpretative epistemology using a social constructionist approach. Purposive sampling of parents attending the Paediatric Oncology Unit, Korle Bu Teaching Hospital in Accra, Ghana was undertaken. Twelve semi-structured moderate interviews and two small focus group discussions with a total of seven participants were undertaken. Data analysis was through thematic content analysis.Results: Five major themes emerged. Knowledge and perceptions revealed a total lack of appropriate knowledge prior to diagnosis. Health-seeking behaviour was determined by interplay of individual and environmental factors. Orthodox medical treatment was largely perceived favourably. The impact of cancer on parents and children included psychological, physical and socioeconomic effects. Financial, spiritual and psychosocial support helped in coping. Parents recommended public education and health financing to address the major barriers.Conclusion: Broad social determinants and experiences influence parental decision making for children with cancer. This implies Health Promotion strategies with multi-sectorial involvement will be required for effective implementation of the National Strategy for Cancer Control.Funding: Funded by authorsKeywords: Childhood cancer, parent perspectives, Ghana


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