Sources of uncertainty and their association with medical decision making: Exploring mechanisms in fanconi anemia

Annals of Behavioral Medicine

Volumn 46, Issue 2, 2013, Pages 204-216

  Hamilton, Jada G ^a,b   Hutson, Sadie P ^b,c   Moser, Richard P ^b   Kobrin, Sarah C ^b   Frohnmayer, Amy E ^d   Alter, Blanche P ^b   Han, Paul K J ^e  

^a NATIONAL CANCER INSTITUTE   (United States)

^b NATIONAL INSTITUTES OF HEALTH   (United States)

^c UNIVERSITY OF TENNESSEE   (United States)

^d OREGON HEALTH AND SCIENCE UNIVERSITY   (United States)

^e Maine Medical Center Research Institute   (United States)

Author keywords

Ambiguity; Fanconi anemia; Hematopoietic stem cell transplantation; Medical decision making; Uncertainty

Indexed keywords

ADULT; ARTICLE; ATTITUDE TO HEALTH; CROSS-SECTIONAL STUDY; DECISION MAKING; FANCONI ANEMIA; FEMALE; HEALTH SURVEY; HUMAN; MALE; PARENT; PSYCHOLOGICAL ASPECT; STEM CELL TRANSPLANTATION; UNCERTAINTY;

ADULT; CROSS-SECTIONAL STUDIES; DECISION MAKING; FANCONI ANEMIA; FEMALE; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HEALTH SURVEYS; HUMANS; MALE; PARENTS; STEM CELL TRANSPLANTATION; UNCERTAINTY;

EID: 84885312331     PISSN: 08836612     EISSN: None     Source Type: Journal    
DOI: 10.1007/s12160-013-9507-5     Document Type: Article

References (54)

1. Han PKJ, Klein WMP, Arora NK. Varieties of uncertainty in health care: A conceptual taxonomy. Med Decis Making. 2011;31(6):828-838.
2. Barry MJ, Edgman-Levitan S. Shared decision making - The pinnacle of patient-centered care. N Engl J Med. 2012;366(9):780-781.
3. Woolf SH. The price of false beliefs: Unrealistic expectations as a contributor to the health care crisis. Ann Fam Med. 2012;10(6):491-494.
4. Nagler R. Adverse outcomes associated with media exposure to contradictory nutrition messages. J Health Commun. 2013; (in press).
5. Eysenbach G. The impact of the internet on cancer outcomes. CA Cancer J Clin. 2003;53(6):356-371.
6. Boyle P, Boffetta P, Autier P. Diet, nutrition and cancer: Public, media and scientific confusion. Ann Oncol. 2008;19(10):1665-1667.
7. Woloshin S, Schwartz LM. Media reporting on research presented at scientific meetings: More caution needed. Med J Aust. 2006;184(11):576-580.
8. Mishel MH. Uncertainty in chronic illness. Annu Rev Nurs Res. 1999; 17:269-294.
9. Babrow AS, Kasch CR, Ford LA. The many meanings of uncertainty in illness: Toward a systematic accounting. Heal Commun. 1998;10(1):1-23.
10. Politi MC, Han PKJ, Col NF. Communicating the uncertainty of harms and benefits of medical interventions. Med Decis Making. 2007;27(5):681-695.
11. Brashers DE. Communication and uncertainty management. J Commun. 2001;51(3):477-497.
12. Kahneman D, Tversky A. Prospect theory: An analysis of decision under risk. Econometrica. 1979;47(2):263-291.
13. Ellsberg D. Risk, ambiguity, and the Savage axioms. Q J Econ. 1961;75(4):643-669.
14. Han PKJ, Moser RP, Klein WMP. Perceived ambiguity about cancer prevention recommendations: Relationship to perceptions of cancer preventability, risk, and worry. J Health Commun. 2006;11(suppl 1):51-69.
15. Han PKJ, Kobrin SC, Klein WMP, et al. Perceived ambiguity about screening mammography recommendations: Association with future mammography uptake and perceptions. Cancer Epidemiol Biomarkers Prev. 2007;16(3):458-466.
16. Hutson SP, Dorgan KA, Duvall KL, Garrett LH. Human papillomavirus infection, vaccination, and cervical cancer communication: The protection dilemma faced by women in southern Appalachia. Women Health. 2011;51(8):795-810.
17. Smithson M. Conflict aversion: Preference for ambiguity vs conflict in sources and evidence. Organ Behav Hum Decis Process. 1999;79(3):179-198.
18. Kienhues D, Stadtler M, Bromme R. Dealing with conflicting or consistent medical information on the web: When expert information breeds laypersons' doubts about experts. Learn Instr. 2011;21(2):193-204.
19. Carpenter DM, DeVellis RF, Fisher EB, et al. The effect of conflicting medication information and physician support on medication adherence for chronically ill patients. Patient Educ Couns. 2010;81(2):169-176.
20. Rosenberg PS, Greene MH, Alter BP. Cancer incidence in persons with Fanconi anemia. Blood. 2003;101(3):822-826.
21. Rosenberg PS, Tamary H, Alter BP. How high are carrier frequencies of rare recessive syndromes? Contemporary estimates for Fanconi anemia in the United States and Israel. Am J Med Genet A. 2011;155A(8):1877-1883.
22. Shimamura A, Alter BP. Pathophysiology and management of inherited bone marrow failure syndromes. Blood Rev. 2010;24(3):101-122.
23. Alter BP, Giri N, Savage SA, et al. Malignancies and survival patterns in the National Cancer Institute inherited bone marrow failure syndromes cohort study. Br J Haematol. 2010;150(2):179-188.
24. Copelan EA. Hematopoietic stem-cell transplantation. N Engl J Med. 2006;354(17):1813-1826.
25. MacMillan ML, Wagner JE. Haematopoeitic cell transplantation for Fanconi anaemia - When and how? Br J Haematol. 2010;149(1):14-21.
26. Packman W, Weber S, Wallace J, Bugescu N. Psychological effects of hematopoietic SCT on pediatric patients, siblings and parents: A review. Bone Marrow Transplant. 2010;45(7):1134-1146.
27. Green AM, Kupfer GM. Fanconi anemia. Hematol Oncol Clin North Am. 2009;23(2):193-214.
28. Guardiola P, Socie G, Li X, et al. Acute graft-versus-host disease in patients with Fanconi anemia or acquired aplastic anemia undergoing bone marrow transplantation from HLA-identical sibling donors: Risk factors and influence on outcome. Blood. 2004;103(1):73-77.
29. Rosenberg PS, Socie G, Alter BP, Gluckman E. Risk of head and neck squamous cell cancer and death in patients with Fanconi anemia who did and did not receive transplants. Blood. 2005;105(1):67-73.
30. Wagner JE, Eapen M, MacMillan ML, et al. Unrelated donor bone marrow transplantation for the treatment of Fanconi anemia. Blood. 2007;109(5):2256- 2262.
31. Rosenberg PS, Alter BP, Socie G, Gluckman E. Secular trends in outcomes for Fanconi anemia patients who receive transplants: Implications for future studies. Biol Blood Marrow Transplant. 2005;11(9):672-679.
32. Fanconi Anemia Research Fund. Fanconi anemia: Guidelines for diagnosis and management (3rd). Eugene: FARF Inc.; 2008.
33. Tremolada M, Bonichini S, Pillon M, Messina C, Carli M. Quality of life and psychosocial sequelae in children undergoing hematopoietic stem-cell transplantation: A review. Pediatr Transplant. 2009;13(8):955-970.
34. Clarke SA, Eiser C, Skinner R. Health-related quality of life in survivors of BMT for paediatric malignancy: A systematic review of the literature. Bone Marrow Transplant. 2008;42(2):73-82.
35. Horne R, Weinman J, Hankins M. The beliefs about medicines questionnaire: The development and evaluation of a new method for assessing the cognitive representation of medication. Psychol Health. 1999;14(1):1-24.
36. Klein WMP, Stefanek ME. Cancer risk elicitation and communication: Lessons from the psychology of risk perception. CA Cancer J Clin. 2007;57(3):147-167.
37. Moser RP, McCaul K, Peters E, Nelson W, Marcus SE. Associations of perceived risk and worry with cancer health-protective actions: Data from the Health Information National Trends Survey (HINTS). J Health Psychol. 2007;12(1):53-65.
38. Kraemer HC, Kiernan M, Essex M, Kupfer DJ. How and why criteria defining moderators and mediators differ between the Baron & Kenny and MacArthur approaches. Health Psychol. 2008;27(2, Suppl):S101-S108.
39. MacKinnon DP, Luecken LJ. How and for whom? Mediation and moderation in health psychology. Health Psychol. 2008;27(2, Suppl):S99-S100.
40. Hutson SP, Han PKJ, Hamilton JG, et al. The use of hematopoietic stem cell transplantation in Fanconi anemia patients: A survey of decision-making among families in the United States and Canada. Health Expect. 2013; (in press).
41. Preacher KJ, Hayes AF. Asymptotic and resampling strategies for assessing and comparing indirect effects in multiple mediator models. Behav Res Methods. 2008;40(3):879-891.
42. Preacher KJ, Selig JP. Advantages of monte carlo confidence intervals for indirect effects. Commun Methods Meas. 2012;6(2):77-98.
43. Selig JP, Preacher KJ. Monte Carlo method for assessing medation: An interactive tool for creating confidence intervals for indirect effects. [Computer software]. 2008. http://quantpsy.org/. Accessed 24 April 2012.
44. Zierhut H, Bartels D. Waiting for the next shoe to drop: The experience of parents of children with Fanconi anemia. J Genet Couns. 2012;21(1):45-58.
45. Reyna VF, Nelson WL, Han PK, Dieckmann NF. How numeracy influences risk comprehension and medical decision making. Psychol Bull. 2009;135(6):943-973.
46. Loewenstein GF, Hsee CK, Weber EU, Welch N. Risk as feelings. Psychol Bull. 2001;127(2):267-286.
47. Diefenbach MA, Miller SM, Daly MB. Specific worry about breast cancer predicts mammography use in women at risk for breast and ovarian cancer. Health Psychol. 1999;18(5):532-536.
48. Lerner JS, Keltner D. Beyond valence: Toward a model of emotion-specific influences on judgement and choice. Cogn Emot. 2000;14(4):473-493.
49. Lerner JS, Keltner D. Fear, anger, and risk. J Pers Soc Psychol. 2001;81(1):146-159.
50. Lipkus IM, Iden D, Terrenoire J, Feaganes JR. Relationships among breast cancer concern, risk perceptions, and interest in genetic testing for breast cancer susceptibility among African-American women with and without a family history of breast cancer. Cancer Epidemiol Biomarkers Prev. 1999;8(6):533-539.
51. Stefanek ME, Wilcox P. First degree relatives of breast cancer patients: Screening practices and provision of risk information. Cancer Detect Prev. 1991;15(5):379-384.
52. Epstein RM, Peters E. Beyond information: Exploring patients' preferences. JAMA. 2009;302(2):195-197.
53. Mishel MH, Germino BB, Lin L, et al. Managing uncertainty about treatment decision making in early stage prostate cancer: A randomized clinical trial. Patient Educ Couns. 2009;77(3):349-359.
54. Zikmund-Fisher BJ, Sarr B, Fagerlin A, Ubel PA. A matter of perspective: Choosing for others differs from choosing for yourself in making treatment decisions. J Gen Intern Med. 2006;21(6):618-622.