An evaluation of two decision-making scales for children with life-limiting illnesses

Palliative Medicine

Volumn 23, Issue 6, 2009, Pages 518-525

  Knapp, Caprice ^a   Huang, I C ^a   Madden, V ^a   Vadaparampil, S ^b   Quinn, G ^b   Shenkman, E ^a  

^a UNIVERSITY OF FLORIDA COLLEGE OF MEDICINE   (United States)

^b H LEE MOFFITT CANCER CENTER AND RESEARCH INSTITUTE   (United States)

Author keywords

Decision making; Paediatrics; Validation

Indexed keywords

ARTICLE; CHILD; COMBINED OUTCOME MEASURE FOR RISK COMMUNICATION AND TREATMENT DECISION MAKING EFFECTIVENESS; CONSTRUCT VALIDITY; CRITICAL ILLNESS; CRONBACH ALPHA COEFFICIENT; DECISION MAKING; DECISIONAL CONFLICT SCALE; DISCRIMINANT VALIDITY; FEMALE; HUMAN; INTERMETHOD COMPARISON; INTERNAL CONSISTENCY; INTERPERSONAL COMMUNICATION; KNOWN GROUPS VALIDITY; MAJOR CLINICAL STUDY; MALE; PARENTAL ATTITUDE; PERSONALITY; PSYCHOMETRY; RELIABILITY; TRUST; VALIDITY;

ADOLESCENT; CHILD; CHILD, PRESCHOOL; DECISION MAKING; FEMALE; HUMANS; INFANT; MALE; PALLIATIVE CARE; PSYCHOMETRICS; REPRODUCIBILITY OF RESULTS; TERMINALLY ILL;

EID: 68449098078     PISSN: 02692163     EISSN: None     Source Type: Journal    
DOI: 10.1177/0269216309104892     Document Type: Article

References (63)

1. Department of Health and Human Services, Centers for Disease Control and Prevention.. National center for health statistics. http://www.cdc.gov/ nchs [accessed 10.11.06].
2. Hoyert, D, Matthews, T, Menacker, F, Strobino, D, Guyer, B. Annual summary of vital statistics: 2004. Pediatrics 2006; 117: 168-183.
3. Himelstein, B, Hilden, J, Boldt, A, Weissman, D. Pediatric palliative care. N Engl J Med 2004; 250: 1752-1762.
4. Hynson, J, Gillis, J, Collins, J, Irving, H, Trethewie, S. The dying child: How is care different. Med J Aust 2003; 179: S20-S22.
5. McSherry, M, Kehoe, K, Carroll, J, Kang, T, Rourke, M. Psychosocial and spiritual needs of children living with a life-limiting illness. Pediatr Clin North Am 2007; 54: 609-629.
6. Donnelly, J, Huff, S, Lindsey, M, McMahon, K, Schumacher, J. The needs of children with life-limiting conditions: A healthcare-provider-based model. Am J Hosp Palliat Care 2005; 22: 259-267.
7. Rahi, J, Manaras, I, Tuomainen, H, Hundt, G. Meeting the needs of parents around the time of diagnosis of disability among their children: evaluation of a novel program for information, support, and liaison by key workers. Pediatrics 2004; 114: E477-e482.
8. MacDonald, H, Callery, P. Parenting children requiring complex care: A journey through time. Child Care Health Dev 2008; 34: E207-e213.
9. Stein, A, Forrest, G, Woolley, H, Baum, J. Life threatening illness and hospice care. Arch Dis Child 1990; 65: 468.
10. Field, M, Behrman, R, When children die: Improving palliative care and end-of-life care for children and their families. Washington, DC: National Academy Press; 2002.
11. American Academy of Pediatrics. Committee on Bioethics and Committee on Hospital Care. Palliat Care Child Pediatrics 2000; 106: 351-357.
12. Children's Hospice International. Children's Hospice International Program for all-inclusive care for children and their families (CHI PACC®). http://www.chionline.org/programs [accessed 17.10.08].
13. Tomlinson, D, Capra, M, Gammon, J, Vople, J, Barrera, M, Hinds, P, et al. Parental decision making in pediatric cancer end-of-life care: Using focus group methodology as a prephase to seek participant design input. Eur J Oncol Nurs 2006; 10: 198-206.
14. Truog, R, Meyer, E, Bruns, J. Towards interventions to improve end-of-life care in the Pediatric Intensive Care Unit. Crit Care Med 2006; 82: 905-913.
15. Meyer, E, Ritholz, M, Burns, J, Ruog, R. Improving the quality of end of life care in the pediatric intensive care unit: Parents' priorities and recommendations. Pediatrics 2006; 117: 649-657.
16. Kasper, JF, Mulley Jr, AG, Wennberg, JE. Developing shared decision-making programs to improve the quality of health care. QRB Qual Rev Bull 1992; 18: 183-190.
17. Forrow, L, Wartman, SA, Brock, DW. Science, ethics, and the making of clinical decisions- implications for risk factor intervention. JAMA 1988; 259: 3161-3167.
18. Greenfield, S, Kaplan, S, Ware Jr, JE. Expanding patient involvement in care-effects on patient outcomes. Ann Intern Med 1985; 102: 520-528.
19. Frosch, DL, Kaplan, RM, Felitti, V. The evaluation of two methods to facilitate shared decision-making for men considering the prostate-specific antigen test. J Gen Intern Med 2001; 16: 391-398.
20. Von Korff, M, Katon, W, Rutter, C, Ludman, E, Simon, G, Lin, E, et al. Effect on disability outcomes of a depres depression relapse prevention program. Psychosom Med 2003; 65: 938-943.
21. Ludman, E, Katon, W, Bush, T, Rutter, C, Lin, E, Simon, G, et al. Behavioral factors associated with symptom outcomes in a primary care-based depression prevention intervention trial. Psychol Med 2003; 33: 1061-1070.
22. Brody, DS. The patient's role in clinical decision-making. Ann Intern Med 1980; 93: 718-722.
23. van Roosmalen, MS, Stalmeier, PF, Verhoef, LC, Hoekstra-Weebers, JE, Oosterwijk, JC, Hoogerbrugge, N, et al. Randomized trial of a shared decision-making intervention consisting of trade-offs and individualized treatment information for BRCA1/2 mutation carriers. Clin Oncol 2004; 22: 3293-3301.
24. Barry, MJ, Cherkin, DC, Chang, Y, Fowler, SJ, Skades, S. A randomized trial of a multimedia shared decisionmaking program for men facing a treatment decision for benign prostatic hypertrophy. Dis Manag Clin Outcomes 1997; 1: 5-14.
25. Charles, C, Whelan, T, Gafni, A. What do we mean by partnership in making decisions about treatment. BMJ 1999; 319: 780-782.
26. Dy, SM. Instruments for evaluating shared medical decision making: A structured literature review. Med Care Res Rev 2007; 64: 623-649.
27. Song, M, Sereika, S. An evaluation of the Decisional Conflict Scale for measuring the quality of end-of-life decision making. Patient Educ Couns 2006; 61: 397-404.
28. Sepucha, K, Ozanne, E, Silvia, K, Partridge, A, Mulley, A. An approach to measuring the quality of breast cancer decisions. Patient Educ Couns 2007; 65: 261-269.
29. Flynn, K, Weinfurt, K, Seils, D, Lin, L, Burnett, C, Schulmen, K, et al. Decisional conflict among patients who accept or decline participation in phase I oncology studies. J Empir Res Hum Res Ethics 2008; 3: 69-77.
30. O'Connor, A. Validation of a Decisional Conflict Scale. Med Decis Making 1995; 15: 25-30.
31. Edwards, A, Elwyn, G, Hood, K, Robling, M, Atwell, C, Holmes-Rovner, M, et al. The development of COMRADE- a patient-based outcome measure to evaluate the effectiveness of risk communication and treatment decision making in consultations. Patient Educ Couns 2003; 50: 311-322.
32. Hinds, P, Drew, D, Oakes, L, Fouladi, M, Spunt, S, Church, C, et al. End-of-life care preferences of pediatric patients with cancer. J Clin Oncol 2005; 23: 9146-9154.
33. Bradshaw, G, Hinds, P, Lensing, S, Gattuso, J, Razzouk, B. Cancer-related deaths in children and adolescents. J Palliat Med 2005; 8: 86-95.
34. Hays, R, Valentine, J, Haynes, G, Geyer, J, Villareale, N, McKinstry, B, et al. The Seattle Pediatric Palliative Care Project: Effects on family satisfaction and health-related quality of life. J Palliat Med 2006; 9: 716-728.
35. Knapp, C, Madden, V, Curtis, C, Sloyer, P, Huang, I, Thompson, L, et al. Florida's partners in care: Together for kids pediatric palliative care model. J Palliat Med 2008; 11: 1212-1220.
36. Martin, RW, Head, AJ, René, J, Swartz, TJ, Fiechtner, JJ, McIntosh, BA, et al. Patient decision making related to antirheumatic drugs in rheumatoid arthritis: The importance of patient trust of physician. J Rheumatol 2008; 35: 618-624.
37. Goff, SL, Mazor, KM, Meterko, V, Dodd, K, Sabin, J. Patients' beliefs and preferences regarding doctor's medication recommendations. J Gen Intern Med 2008; 23: 236-241.
38. Smith, A, Davis, R, Krakauer, E. Differences in the quality of the patient-physician relationship among terminally ill African-American and white patients: Impact on advance care planning and treatment preferences. J Gen Intern Med 2007; 22: 1579-1582.
39. Hall, M, Dugan, E, Zheng, B, Mishra, A. Trust in physicians and medical institutions: What is it, can it be measured, and does it matter. Milbank Q 2001; 79: 613-639.
40. Hall, MA, Zheng, B, Dugan, E, Camacho, F, Kidd, KE, Mishra, A, et al. Measuring patients' trust in their primary care providers. Med Care Res Rev 2002; 59: 293-318.
41. Gosling, SD, Rentfrow, PJ, Swann Jr, WB. A very brief measure of the big five personality domains. J Res Pers 2003; 37: 504-528.
42. Fayers, PM, Machin, D. Quality of life: Assessment, analysis and interpretation. 2nd ed. New York: John Wiley & Sons; 2007.
43. Stewart, J, Pyke-Grimm, K, Kelly, K. Parental treatment decision making in pediatric oncology. Semin Oncol Nurs 2005; 21: 98-106.
44. Gagnon, E, Recklitis, C. Parents' decision making preferences in pediatric oncology: The relationship to health care involvement and complementary therapy use. Psychooncology 2003; 12: 442-452.
45. Block, CA, Erickson, B, Carney-Doebbling, C, Gordon, S, Fallon, B, Konety, BR. Personality, treatment choice and satisfaction in patients with localized prostate cancer. Int J Urol 2007; 14: 1013-1018.
46. Flynn, KE, Smith, MA. Personality and health care decision-making style. J Gerontol B Psychol Sci Soc Sci 2007; 62: 261-P267.
47. Orom, H, Penner, LA, West, BT, Downs, TM, Rayford, W, Underwood, W. Personality predicts prostate cancer treatment decision-making difficulty and satisfaction. Psychooncology 2009; 18: 290-299.
48. Graham, ID, O'Connor, AM. Research in shared decision making is growing deeper roots and more branches. Patient Educ Couns 2006; 63: 259-261.
49. Audrey, S, Abel, J, Blazeby, J, Falk, S, Campbell, R. What oncologists tell patients about survival benefits of palliative chemotherapy and implications for informed consent: Qualitative study. BMJ 2008; 337: A752.
50. Sedillot, N, Holzapfel, L, Jacquet-Francillon, T, Tafaro, N, Eskandanian, A, Eyraud, S, et al. A five-step protocol for withholding and withdrawing of life support in an emergency department: An observational study. Eur J Emerg Med 2008; 5: 145-149.
51. Parker, M, Cartwright, C, Williams, G. Impact of specialty on attitudes of Australian medical practitioners to end-of-life decisions. Med J Austr 2008; 188: 450-456.
52. Georges, J, The, A, Onwuteaka-Philipsen, B, van der Wal, G. Dealing with requests for euthanasia: A qualitative study investigating the experiences of general practitioners. J Med Ethics 2008; 34: 150-155.
53. Stajduhar, K, Allan, D, Cohen, S, Heyland, D. Preferences for location of death of seriously ill hospitalized patients: Perspectives from Canadian patients and their family caregivers. Palliat Med 2008; 22: 85-88.
54. Bamrucker, S, Sheldon, J, Morris, G, Stolick, M, Carter, G, Harrington, D. Withdrawing treatment for the "wrong" reasons. Am J Hosp Pall Care 2007; 24: 509-514.
55. Zapka, J, Moran, W, Goodlin, S, Knott, K. Advanced heart failure: prognosis, uncertainty, and decision making. Cong Heart Fail 2007; 13: 268-274.
56. Feudtner, C. Collaborative communication in pediatric palliative care: A foundation for problem-solving and decision-making. Pediatr Clin North Am 2007; 54: 583-607.
57. Levetown, M. Communicating with children and families: From everyday interactions to skill in conveying distressing information. Pediatrics 2008; 121: E1441-e1460.
58. Cignacco, E, Stoffel, L, Raio, L, Schneider, H, Nelle, M. Recommendations for the palliative care of dying neonates. Z Geburtschilfe Neonatol 2004; 208: 155-160.
59. Marcon, F, Bosser, G, Lucron, H, Lethor, J. Role of pediatric cardiologists in the management of neonates with congenital heart disease. Arch Pediatr 2001; 8: 1121-1124.
60. Hilden, J, Emanuel, E, Fairclough, D, Link, M, Foley, K, Clarridge, B, et al. Attitudes and practices among pediatric oncologists regarding end-of-life care: Results of the 1998 American Society of Clinical Oncology survey. J Clin Oncol 2001; 19: 205-212.
61. Moran, J. Seriously Ill children's coordinated health care plan introduced [Press Release]. http://moran.house.gov/apps/list/press/ va08_moran/CHIPACC.shtml [accessed 24.09.08].
62. Huang, I, Shenkman, E, Leite, W, Knapp, C, Thompson, L, Revicki, D. Measurement invariance was not found in adolescents' quality of life rated by parents and adolescents. J Clin Epidemiol 2008; 62: 337-346.
63. Shenkman, E, Knapp, C, Sappington, D, Vogel, B, Schatz, D. Persistence of high health care expenditures among children in medicaid. Med Care Res Rev 2007; 64: 304-330.