Parent participation and physician-parent communication during informed consent in child leukemia

Pediatrics

Volumn 128, Issue 6, 2011, Pages

  Cousino, Melissa ^a   Hazen, Rebecca ^b,c   Yamokoski, Amy ^d   Miller, Victoria ^e   Zyzanski, Stephen ^c   Drotar, Dennis ^f   Kodish, Eric ^d  

^a CASE WESTERN RESERVE UNIVERSITY   (United States)

^b CASE WESTERN RESERVE UNIVERSITY   (United States)

^c CASE WESTERN RESERVE UNIVERSITY SCHOOL OF MEDICINE   (United States)

^d LERNER RESEARCH INSTITUTE   (United States)

^e CHILDREN S HOSPITAL OF PHILADELPHIA   (United States)

^f CINCINNATI CHILDREN'S HOSPITAL MEDICAL CENTER   (United States)

Author keywords

Communication; Informed consent; Leukemia; Pediatrics; Research ethics

Indexed keywords

ACUTE LEUKEMIA; ADULT; ARTICLE; CHILD; CHILDHOOD LEUKEMIA; CLINICAL RESEARCH; CONTROLLED STUDY; FEMALE; HUMAN; HUMAN RELATION; INFORMED CONSENT; MALE; MEDICAL INFORMATION; PARENT; PHYSICIAN ATTITUDE; PHYSICIAN PARENT COMMUNICATION; PRESCHOOL CHILD; PRIORITY JOURNAL;

EID: 83155192970     PISSN: 00314005     EISSN: 10984275     Source Type: Journal    
DOI: 10.1542/peds.2010-3542     Document Type: Article

References (51)

1. Ries LAG, Melbert D, Krapcho M et al. SEER Cancer Statistics Review, 1975-2004. Bethesda, MD: National Cancer Institute; 2007
2. Levi RB, Marsick R, Drotar D, Kodish ED. Diagnosis, disclosure, and informed consent: learning from parents of children with cancer. J Pediatr Hematol Oncol. 2000;22(1):3-12 (Pubitemid 32266831)
3. Janis I. Decision making under stress. In: Breznitz L, Goldberger S et al. Handbook of Stress: Theoretical and Clinical Aspects. 2nd ed. New York, NY: The Free Press; 1993: 56-74
4. Kodish E, Eder M, Noll RB, et al. Communication of randomization in childhood leukemia trials. JAMA. 2004;291(4):470-475 (Pubitemid 38129751)
5. Dermatis H, Lesko LM. Psychological distress in parents consenting to child's bone marrow transplantation. Bone Marrow Transplant. 1990;6(6):411-417
6. Harth SC, Thong YH. Parental perceptions and attitudes about informed consent in clinical research involving children. Soc Sci Med. 1995;40(11):1573-1577
7. Mason SA, Allmark PJ. Obtaining informed consent to neonatal randomised controlled trials: interviews with parents and clinicians in the Euricon study. Lancet. 2000; 356(9247):2045-2051 (Pubitemid 32009819)
8. Snowdon C, Garcia J, Elbourne D. Making sense of randomization: responses of parents of critically ill babies to random allocation of treatment in a clinical trial. Soc Sci Med. 1997;45(9):1337-1355 (Pubitemid 27445491)
9. Stenson BJ, Becher JC, McIntosh N. Neonatal research: the parental perspective. Br Med J. 2004;89(4):F321-F323
10. Fallowfield L, Jenkins V. Communicating sad, bad, and difficult news in medicine. Lancet. 2004;363(9405):312-319 (Pubitemid 38142417)
11. Levinson W, Lesser CS, Epstein RM. Developing physician communication skills for patient-centered care. Health Aff (Millwood). 2010;29(7):1310-1318
12. Levinson W, Pizzo PA. Patient-physician communication. JAMA. 2011;305(17):1802-1803
13. Fallowfield L, Jenkins V, Farewell V, Saul J, Duffy A, Eves R. Efficacy of a cancer research UK communication skills training model for oncologists: a randomised controlled trial. Lancet. 2002;359(9307):650-656 (Pubitemid 34203764)
14. Fallowfield L, Jenkins V, Farewell V, Solis- Trapala I. Enduring impact of communication skills training: results of a 12-month follow-up. Br J Cancer. 2003;89(8): 1445-1449 (Pubitemid 37386598)
15. Fallowfield L, Lipkin M, Hall A. Teaching senior oncologists communication skills: results from phase I of a comprehensive longitudinal program in the United Kingdom. J Clin Oncol. 1998;16(5):1961-1968 (Pubitemid 28234747)
16. Jenkins V, Fallowfield L. Can communication skills training alter physicians' beliefs and behavior in clinics? J Clin Oncol. 2002;20(3): 765-769 (Pubitemid 34111384)
17. Rao JK, Anderson LA, Inui TS, Frankel RM. Communication interventions make a difference in conversations between physicians and patients: a systematic review of the evidence. Med Care. 2007;45(4): 340-349
18. Drotar D, Miller V, Willard V, Anthony K, Kodish E. Correlates of parental participation during informed consent for randomized clinical trials in the treatment of childhood leukemia. Ethics Behav. 2004;14(1):1-15 (Pubitemid 39392452)
19. Miller VA, Drotar D, Burant C, Kodish E. Clinician-parent communication during informed consent for pediatric leukemia trials. J Pediatr Psychol. 2005;30(3):219-229 (Pubitemid 40464142)
20. Brown RF, Butow PN, Boyle F, Tattersall MHN. Seeking informed consent to cancer clinical trials: evaluating the efficacy of doctor communication skills training. Psychooncology. 2007;16(6):507-516 (Pubitemid 47039551)
21. Cohn E, Larson E. Improving participant comprehension in the informed consent process. J Nurs Scholarsh. 2007;39(3): 273-280
22. Flory J, Emanuel E. Interventions to improve research participants' understanding in informed consent for research: a systematic review. JAMA. 2004;292(13):1593-1601 (Pubitemid 39314966)
23. Nobile C, Drotar D. Research on the quality of parent-provider communication in pediatric care: implications and recommendations. J Dev Behav Pediatr. 2003;24(4): 279-290 (Pubitemid 37063200)
24. Kinnersley P, Stott N, Peters TJ, Harvey I. The patient-centredness of consultations and outcome in primary care. Br J Gen Pract. 1999;49(446):711-716 (Pubitemid 29429965)
25. Holm KE, Patterson JM, Gurney JG. Parental involvement and family-centered care in the diagnostic and treatment phases of childhood cancer: results from a qualitative study. J Pediatr Oncol Nurs. 2003;20(6): 301-313 (Pubitemid 39092203)
26. Yap TY, Yamokoski A, Noll R, Drotar D, Zyzanski S, Kodish ED. A physician-directed intervention: teaching and measuring better informed consent. Acad Med. 2009; 84(8):1036-1042
27. Hazen RA, Eder M, Drotar D, et al. A feasibility trial of a video intervention to improve informed consent for parents of children with leukemia. Pediatr Blood Cancer. 2010; 55(1):113-118
28. Yamokoski AD, Hazen RA, Kodish ED. Anticipatory guidance to improve informed consent: a new application of the concept. J Pediatr Oncol Nurs. 2008;25(1):34-43
29. Eder ML, Yamokoski AD, Wittmann PW, Kodish ED. Improving informed consent: Suggestions from parents of children with leuekemia. Pediatrics. 2007;119(4). Available at: www.pediatrics.org/cgi/content/full/119/4/e849
30. Hollingshead AB. Two Factor Index of Social Position. New Haven, CT: Yale University; 1957
31. Roter DL. Patient participation in the patient-provider interaction: the effects of patient question asking on the quality of interaction, satisfaction and compliance. Health Educ Behav. 1977;5(4):281-315
32. Roter DL, Hall JA, Katz NR. Patient-physician communication: a descriptive summary of the literature. Patient Educ Couns. 1988; 12(2):99-119
33. Roter D, Larson S. The Roter Interaction Analysis System (RIAS): utility and flexibility for analysis of medical interactions. Patient Educ Couns. 2002;46(4):243-251 (Pubitemid 34258047)
34. Bertakis KD, Roter D, Putnam SM. The relationship of physician medical interview style to patient satisfaction. J Fam Pract. 1991;32(2):175-181
35. Levinson W, Roter DL, Mullooly J, Dull V, Frankel RM. Doctor-patient communication: a critical link to malpractice in surgeons and primary care physicians. JAMA. 1997; 277(7):553-559 (Pubitemid 27083985)
36. Rost K, Roter D, Bertakis K, Quill T. Doctor-patient familiarity and patient recall of medication changes. Fam Med. 1990;22(6): 453-457
37. Roter DL, Hall JA, Kern DE, Barker LR, Cole KA, Roca RP. Improving physicians' interviewing skills and reducing patients'emotional distress: a randomized clinical trial. Arch Intern Med. 1995;155(17): 1877-1884
38. Roter DL, Stewart M, Putnam SM, Lipkin M Jr, Stiles W, Inui TS. Communication patterns of primary care physicians. JAMA. 1997;277(4):350-356 (Pubitemid 27045018)
39. Roter D. The enduring and evolving nature of the patient-physician relationship. Patient Educ Couns. 2000;39(1):5-15
40. Wissow LS, Roter D, Bauman LJ, et al. Patient-provider communication during the emergency department care of children with asthma. Med Care. 1998;36(10): 1439-1450 (Pubitemid 128456364)
41. Siminoff LA, Fetting JH. Factors affecting treatment decisions for a life-threatening illness: the case of medical treatment of breast cancer. Soc Sci Med. 1991;32(7): 813-818
42. Siminoff LA, Ravdin P, Colabianchi N, Sturm CMS. Doctor-patient communication patterns in breast cancer adjuvant therapy discussions. Health Expect. 2000;3(1):26-36 (Pubitemid 30182793)
43. Roter DL, Hall JA, Aoki Y. Physician gender effects in medical communication: a meta-analytic review. JAMA. 2002;288(6):756-764 (Pubitemid 34848232)
44. Bylund CL, Makoul G. Empathic communication and gender in the physician-patient encounter. Patient Educ Couns. 2002;48(3): 207-216 (Pubitemid 35449669)
45. Roter DL, Hall JA. Physician gender and patient-centered communication: a critical review of empirical research. Public Health. 2004;25(1):497-519 (Pubitemid 38543629)
46. Goldbeck L. Parental coping with the diagnosis of childhood cancer: gender effects, dissimilarity within couples, and quality of life. Psychooncology. 2001;10(4): 325-335 (Pubitemid 32725122)
47. Mulhern RK, Crisco JJ, Camitta BM. Patterns of communication among pediatric patients with leukemia, parents, and physicians: prognostic disagreements and misunderstandings. J Pediatr. 1981; 99(3):480-483 (Pubitemid 11029959)
48. Korsch BM, Freemon B, Negrete VF. Practical implications of doctor-patient interaction analysis for pediatric practice. Arch Pediatr Adolesc Med. 1971;121(2):110-114
49. Barclay JS, Blackhall LJ, Tulsky JA. Communication strategies and cultural issues in the delivery of bad news. J Palliat Med. 2007;10(4):958-977 (Pubitemid 47515345)
50. Kupst MJ, Patenaude AF, Walco GA, Sterling C. Clinical trials in pediatric cancer: parental perspectives on informed consent. J Pediatr Hematol Oncol. 2003;25(10):787-790 (Pubitemid 37238768)
51. Singhal N, Oberle K, Burgess E, Huber- Okrainec J. Parents' perceptions of research with newborns. J Perinatol. 2002; 22(1):57-63 (Pubitemid 34168161)