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the readiness of oncologists to disclose information to patients with advanced and incurable cancer n.
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  1. The readiness of oncologists to disclose information to patients with advanced and incurable cancer Nathan I Cherny

  2. Communication and oncologists • central task • challenging • source of substantial professional stress

  3. Patients • Distressed • impact of a life-threatening illness • complex treatment decisions • often limited likelihood of major benefit • balancing hope + realism

  4. Respect for Persons • ethical axiom • Persons generally know what is best for themselves • information • participation

  5. Disclosure • Disclosure, in this context, refers to the imparting of information necessary to make informed decisions about ongoing care.

  6. The key elements of information necessary for patients to make informed decisions include • the diagnosis • the extent of disease • the range of therapeutic options available • the likelihood of benefit from each of the treatment options • the anticipated scope of benefit • the likelihood of adverse effects or harm • potential severity of such adverse effects.

  7. Patient data • Patients vary in the degree to which they want to be medically informed • Western countries: overwhelming majority • non-Western countries: substantial proportion • Not individually predictable • by geography, • Culture • Age • Race • sex • educational level

  8. Family opinions • Multiple studies • family members commonly underestimate • the amount of information that patients desire • the degree to which they want to be involved in decision-making

  9. Consnsus • Ethical, medical, psychological, legal (and anthropological • physicians should ask patients about their individual preferences regarding disclosure of information and then act in accordance with the patient's opinion unless there are compelling contraindications.

  10. Reasons for less than full disclosure • Harm • Profiling • culturally • Age • education • requests by family members • professional role expectations • lack of time • personal difficulty in dealing with "bad news" dialogues

  11. Previous Studies of Oncologists • vary substantially in the disclosure practices • degree of disclosure with any one patient is highly influenced by individual factors • Western oncologists more disclosive than those practicing in non-Western countries • other factors • sex • age • training in the communication of bad news • frequent requests from family members for nondisclosure

  12. Patient derived data • Even in Western countries patient-derived data indicates • disclosure is often less than complete • less than patients want

  13. Adverse Consequences of poor communication with lack of disclosure • psychological distress to the patient and their family • unnecessary treatment or overly aggressive treatment • costs to the health care system • harm to patients • indirect system distress • Burnout • Stress • Conflicts within the health care team

  14. ESMO Survey • To study European Oncologists' • attitudes towards information disclosure to patients with advanced cancer • self-reported behaviors in this clinical setting • the factors that influence both attitudes and behaviors.

  15. Study parameters • Demographics • Oncologists attitudes • regarding disclosure and information transfer • Self Reported oncologist behaviors • in dealing with issues of disclosure • request to collude against the patient • hard case decision making regarding limited therapeutic options and dwindling therapeutic options • Local Norms • To evaluate the pressures exerted on oncologists to withhold information from patients or family members • Subjective adequacy training in difficult dialogues • Predictors of Attitude, Behavior • The impact of education, attitudes, family and peer expectations, geography and other demographics on how clinicians approach these complex tasks.

  16. Questions • To what degree does culture effect attitudes and behaviors regarding information disclosure to patients with advanced cancer? • What factors modify this effect? • Demographic • Rigid factors • Factors amenable to intervention

  17. Methodology

  18. Survey tool • focus group of oncologists participating in the Palliative Care Working Group of ESM a survey tool was drafted. • Peer review process for face validity • The final version of the survey • Demographics (items 1-7), • Requests for collusion (patient and family norms) (item 9) • Clinical scenarios (items 8, 10-12), • Single items relating to: • information aids (13) • enquiries abut emotional issues (14) • second opinions (15) • divergent opinions (16) • 27 attitudes (item 17) • 2 Education (1tem 17 embedded) • 2 Opinion (17 embedded). • Local norms • Perceived Patient Satisfaction

  19. Scoring • Scale Behavior items • Frequency • Likelihood of use of communication strategy • Attitude items • Strength of agreement +2 +1 0 -1 -2 Disclosive Non-Disclosive

  20. Survey administration • All members of ESMO were invited to participate (4000 aprox) • The survey was offered online • reminder letters from the ESMO president every 2 weeks over a 2 month period in 2006.

  21. Statistical analyses • Descriptive • Demographics • Attitudes. • Behaviors • Norms • Internal validity testing • correlation coefficients were calculated Questions relating to • Atitude • Clinical Behavior • Norms • Education • Pooling of regions • Stepwise regression analyses • were performed to evaluate the factors that contributed ATTITUDE and CLINICAL RESPONSES, SATSFACTION.

  22. RESULTS

  23. Demographics • N=298 • Sex: F 81 (2.27%) M 217 (72.8%) • Median age: 42 • Median experience: 10-14 years

  24. Practice Type Private oncology practice 42 14% Community hospital based 56 18% Teaching hospital based 114 38% Comprehensive cancer center 79 25%

  25. Geographic Distribution Western Europe 112 37.6% Southern Europe (Mediterranean Europe) 52 17.4% Eastern Europe 45 15.1% United States 5 1.7% Australasia 5 1.7% South America 39 13.1% Middle East 22 7.4% Other 16 6%

  26. Proportion of my practice involved with advanced (incurable) cancer None 1 0.4% A small proportion 19 6.4% A substantial proportion 207 69.5% Most of my practice 71 23.8%

  27. Attitudes

  28. Attitudes items with substantial affirmative consensus (>60% agree or agree strongly)

  29. Attitude items with substantial negative consensus (>60% disagree or disagree strongly)

  30. Attitude items without overall consensus

  31. ATTITUDE summary score • Average of 27 attitude items • Scale -2, -1, 0, +1, +2 • Cronbach’s alpha 0.76

  32. Behaviors

  33. Clinical Behaviors • Who is told (question 8) • Responses for requests for non disclosure (question 10) • Failing chemotherapy (question 11) • Bad prognosis low likelihood of benefit (question 12)

  34. Who is told (Q.8) Cronbach’s alpha correlation coefficient: 8.1+2 0.62

  35. Responses for requests for non disclosure (Q.10) Cronbach’s alpha correlation coefficient: 0.79

  36. Failing chemotherapy (Q.11) Cronbach’s alpha correlation coefficient: (11.2, 3, 4, 5, 6, not 1) 0.53

  37. Bad prognosis low likelihood of benefit (Q12) Cronbach’s alpha correlation coefficient: (12.1,2, 3, 4, 5, 6, 7 not 8) 0.69

  38. Paternalism/Non-Disclosive CLINICAL BEHAVIOR index • Combined Score of correlated items in the 4 questions • Cronbach’s alpha 0.76

  39. Pooling Regions

  40. Poolability of Regions

  41. SELF REPORTED CLINICAL BEHAVIORS ATTITUDES

  42. Education and Norms

  43. Self Evaluation of Training Affective Cognitive Cronbach alpha 0.5 Spearman P=0.3 Average interitem covariance: 0 .340 Scale reliability coefficient: 0.4790

  44. Cultural Norms • What is expected by patient and family • What is expected by peers

  45. Requests for non disclosure • Requests by patients to withhold information re diagnosis or prognosis from family; Uncommon 3-5% • Requests by family to withhold information from patient more common in non-Western Counties p<0.000 p<0.000 Cronbach alpha 0.9034 Spearman 0.82 Average interitem covariance: .8243283 Scale reliability coefficient: 0.9034

  46. Peer Expectations (Professional Norm) P<0.0000

  47. Multivariate analyses Stepwise Regression • Attitudes • Behaviors • Physician assessed patient satisfaction

  48. Multivariate Regression analysis for ATTITUDES • Model • Age • Sex • Year experience • Work setting • Proportion of work dealing with advanced cancer • Region • Frequency of families requesting non-disclosure (Q9.3+4) • Perceived professional norm (Q 17.9) • Perceived quality of education in disclosure bad news (Q17.24)

  49. Factors contributing to ATTITUDES

  50. Multivariate Regression analysis for BEHAVIORS • Model • Age • Sex • Year experience • Work setting • Proportion of work dealing with advanced cancer • Region • ATTITUDES summary score • Frequency of families requesting non-disclosure (Q9.3+4) • Perceived professional norm (Q 17.9) • Perceived quality of education in disclosure bad news (Q17.24)