Quality of care in sickle cell disease Cross-sectional study and development of a measure for adults reporting on ambulatory and emergency department care

Medicine (United States)

Volumn 95, Issue 35, 2016, Pages

  Evensen, Christian T ^a   Treadwell, Marsha J ^b   Keller, San ^a   Levine, Roger ^c   Hassell, Kathryn L ^d   Werner, Ellen M ^e   Smith, Wally R ^f  

^a AMERICAN INSTITUTES FOR RESEARCH   (United States)

^b CHILDREN S HOSPITAL OAKLAND   (United States)

^c University of Colorado ^*  (United States)

^d UNIVERSITY OF COLORADO   (United States)

^e NATIONAL HEART LUNG AND BLOOD INSTITUTE   (United States)

^f VIRGINIA COMMONWEALTH UNIVERSITY   (United States)

Author keywords

Access to care; Ambulatory care; Emergency medicine; Health care delivery; Quality of care; Sickle cell disease

Indexed keywords

ADULT; ADULT DISEASE; ADULT SICKLE CELL QUALITY OF LIFE MEASUREMENT QUALITY OF CARE; AMBULATORY CARE; ARTICLE; CONSTRUCT VALIDITY; CONTROLLED STUDY; CROSS-SECTIONAL STUDY; EMERGENCY CARE; FEMALE; HEALTH CARE QUALITY; HUMAN; MAJOR CLINICAL STUDY; MALE; PAIN; PAIN INTENSITY; PATIENT-REPORTED OUTCOME; PRIORITY JOURNAL; PSYCHOMETRY; QUALITY OF LIFE ASSESSMENT; RELIABILITY; SICKLE CELL ANEMIA; VALIDITY; ADOLESCENT; ANEMIA, SICKLE CELL; DOCTOR PATIENT RELATION; FACTOR ANALYSIS; HEALTH CARE DELIVERY; HOSPITAL EMERGENCY SERVICE; INTERPERSONAL COMMUNICATION; MIDDLE AGED; PILOT STUDY; STANDARDS; YOUNG ADULT;

ADOLESCENT; ADULT; AMBULATORY CARE; ANEMIA, SICKLE CELL; COMMUNICATION; CROSS-SECTIONAL STUDIES; EMERGENCY SERVICE, HOSPITAL; FACTOR ANALYSIS, STATISTICAL; FEMALE; HEALTH SERVICES ACCESSIBILITY; HUMANS; MALE; MIDDLE AGED; PATIENT REPORTED OUTCOME MEASURES; PHYSICIAN-PATIENT RELATIONS; PILOT PROJECTS; PSYCHOMETRICS; QUALITY OF HEALTH CARE; YOUNG ADULT;

EID: 84987730578     PISSN: 00257974     EISSN: 15365964     Source Type: Journal    
DOI: 10.1097/MD.0000000000004528     Document Type: Article

References (56)

1. Quinn CT, Rogers ZR, McCavit TL, et al. Improved survival of children and adolescents with sickle cell disease. Blood 2010;115:3447-52.
2. Adamkiewicz TV, Silk BJ, Howgate J, et al. Effectiveness of the 7-valent pneumococcal conjugate vaccine in children with sickle cell disease in the first decade of life. Pediatrics 2008;121:562-9.
3. Adams RJ, Brambilla D. Discontinuing prophylactic transfusions used to prevent stroke in sickle cell disease. N Engl J Med 2005;353: 2769-78.
4. Fullerton HJ, Adams RJ, Zhao S, et al. Declining stroke rates in Californian children with sickle cell disease. Blood 2004;104:336-9.
5. Halasa NB, Shankar SM, Talbot TR, et al. Incidence of invasive pneumococcal disease among individuals with sickle cell disease before and after the introduction of the pneumococcal conjugate vaccine. Clin Infect Dis 2007;44:1428-33.
6. Yawn BP, Buchanan GR, Afenyi-Annan AN, et al. Management of sickle cell disease: summary of the 2014 evidence-based report by expert panel members. JAMA 2014;312:1033-48.
7. Vichinsky EP, Neumayr LD, Gold JI, et al. Neuropsychological dysfunction and neuroimaging abnormalities in neurologically intact adults with sickle cell anemia. JAMA 2010;303:1823-31.
8. Ballas SK, Kesen MR, Goldberg MF, et al. Beyond the definitions of the phenotypic complications of sickle cell disease: an update on management. ScientificWorldJournal 2012;2012:949535.
9. National Heart, Lung, and Blood Institute. [website]. Workshop on Adults with Sickle Cell Diseases: Meeting Unmet Needs. Executive Summary and Recommendations. Retrieved September 8, 2015, from: http://www. nhlbi. nih. gov/meetings/scdmtg/execsum. htm/.
10. Haywood CJr, Beach MC, Lanzkron S, et al. A systematic review of barriers and interventions to improve appropriate use of therapies for sickle cell disease. J Natl Med Assoc 2009;101:1022-33.
11. Maxwell K, Streetly A, Bevan D. Experiences of hospital care and treatment seeking for pain from sickle cell disease: qualitative study. BMJ 1999;318:1585-90.
12. Strickland O, Jackson G, Gilead M, et al. Use of focus groups for pain and quality of life assessment in adults with sickle cell disease. J Natl Black Nurses Assoc 2001;12:36-43.
13. Thomas V, Taylor L. The psychosocial experience of people with sickle cell disease and its impact on quality of life: qualitative findings from focus groups. Br J Health Psychol 2002;7:345-63.
14. Labbe E, Herbert D, Haynes J. Physicians' attitude and practices in sickle cell disease pain management. J Palliat Care 2005;21:246-51.
15. Lazio MP, Costello HH, Courtney DM, et al. A comparison of analgesic management for emergency department patients with sickle cell disease and renal colic. Clin J Pain 2010;26:199-205.
16. Murray N, May A. Painful crises in sickle cell disease-patients' perspectives. BMJ 1988;297:452-4.
17. Haywood CJr, Lanzkron S, Ratanawongsa N, et al. Hospital selfdischarge among adults with sickle-cell disease (SCD): associations with trust and interpersonal experiences with care. J Hosp Med 2010;5: 289-94.
18. Jenerette CM, Brewer C. Health-related stigma in young adults with sickle cell disease. J Natl Med Assoc 2010;102:1050-5.
19. Jenerette CM, Brewer CA, Ataga KI. Care seeking for pain in young adults with sickle cell disease. Pain Manag Nurs 2014;15:324-30.
20. Smith WR, Scherer M. Sickle-cell pain: advances in epidemiology and etiology. Hematology Am Soc Hematol Educ Program 2010;2010: 409-15.
21. National Heart, Lung, and Blood Institute. [website]. Evidence Based management of sickle cell disease: expert panel report, 2014. Retrieved January 25, 2016, from: http://www. nhlbi. nih. gov/health-pro/guide lines/sickle-cell-disease-guidelines/.
22. Treadwell MJ, Hassell K, Levine R, et al. Adult sickle cell quality-of-life measurement information system (ASCQ-Me): conceptual model based on review of the literature and formative research. Clin J Pain 2014;30:902-14.
23. Keller SD, Yang M, Treadwell MJ, et al. Patient reports of health outcome for adults living with sickle cell disease: development and testing of the ASCQ-Me item banks. Health Qual Life Outcomes 2014;12:125.
24. Cella D, Riley W, Stone A, et al. The Patient-Reported Outcomes Measurement Information System (PROMIS) developed and tested its first wave of adult self-reported health outcome item banks: 2005-2008. J Clin Epidemiol 2010;63:1179-94.
25. Keller SD,Werner EM. Building on PROMIS: ASCQ-Me. In: The Second PROMIS Conference: Improving Measurement of Patient-Reported Outcomes-New Tools and the Science Behind Them; 2008; Bethesda, M.D.
26. Stevens J. Applied Multivariate Statistics for the Social Sciences. 2nd ed. Hillsdale, NJ:Lawrence Earlbaum Associates; 1992.
27. Crofton C, Lubalin JS, Darby C. Consumer Assessment of Health Plans Study (CAHPS). Foreword. Med Care 1999;37(3 suppl):MS1-9.
28. Goldstein E, Farquhar M, Crofton C, et al. Measuring hospital care from the patients' perspective: an overview of the CAHPS hospital survey development process. Health Serv Res 2005;40:1977-95.
29. Frentzel EM, Sangl JA, Evensen CT, et al. Giving voice to the vulnerable: the development of a CAHPS nursing home survey measuring family members' experiences. Med Care 2012;50:S20-7.
30. Darby C, Hays RD, Kletke P. Development and evaluation of the CAHPS Hospital Survey. Health Serv Res 2005;40:1973-6.
31. Weidmer BA, Cleary PD, Keller S, et al. Development and evaluation of the CAHPS (Consumer Assessment ofHealthcare Providers and Systems) survey for in-center hemodialysis patients. Am J Kidney Dis 2014;64: 753-60.
32. Keller S, Col Martin GC, Evensen CT, et al. The development and testing of a survey instrument for benchmarking dental plan performance: using insured patients' experiences as a gauge of dental care quality. J Am Dent Assoc 2009;140:229-37.
33. Levine RE, Fowler FJJr, Brown JA. Role of cognitive testing in the development of the CAHPS Hospital Survey. Health Serv Res 2005;40: 2037-56.
34. Keller S, O'Malley AJ, Hays RD, et al. Methods used to streamline the CAHPS Hospital Survey. Health Serv Res 2005;40:2057-77.
35. Cronbach LJ. Coefficient alpha and the internal structure of tests. Psychometrika 1951;16:297-334.
36. Hayashi T, Hays R. A microcomputer program for analyzing multitraitmultimethod matrices. Behav Res Methods 1987;19:345-8.
37. Steiger JH. Tests for comparing elements of a correlation matrix. Psychol Bull 1980;87:245-51.
38. Howard KI, Forehand GA. A method for correcting item-total correlations for the effect of relevant item inclusion. Educ Psychol Meas 1962;22:731-5.
39. Hatcher L. A Step-by-Step Approach to Using the SAS System for Factor Analysis and Structural EquationModeling. Cary, NC:SAS Institute Inc; 1994.
40. Nunnally J, Bernstein I. Psychometric Theory. 3rd ed. New York: McGraw-Hill Book Company; 1995.
41. Hu L, Bentler PM. Cutoff criteria for fit indexes in covariance structure analysis: conventional criteria versus new alternatives. Struct Equation Model 1999;6:1-55.
42. Cohen J. Statistical Power Analysis for the Behavioral Sciences. Hillsdale, NJ:Lawrence Erlbaum; 1988.
43. US Department of Health and Human Services. Publicly reported CAHPS scores for 2011 from the Medicaid, Medicare, and Adult Commercial Health Plan. Available at: https://www. cahpsdatabase. ahrq. gov/CAHPSIDB/Public/about. aspx. Accessed September 8, 2015.
44. AHRQ. Instructions for analyzing data from CAHPS surveys. 2015. Available at: https://cahps. ahrq. gov/surveys-guidance/survey4. 0-docs/ 2015-instructions-for-analyzing-data. pdf. Accessed September 8, 2015.
45. US Department of Health and Human Services. Medicare scores are based on the Medicare version of the CAHPS Health Plan Survey 4. 0; Medicaid scores are based on the Adult Medicaid Survey 4. 0; Adult Commercial scores are based on the Adult Commercial Survey 4. 0. Available at: https://cahps. ahrq. gov/surveys-guidance/hp/about/index. html. Accessed September 8, 2015.
46. Castle N. Family satisfaction with nursing facility care. Int J Qual Health Care 2004;16:483-9.
47. Gasquet I, Dehé S, Gaudebout P, et al. Regular visitors are not good substitutes for assessment of elderly patient satisfaction with nursing home care and services. J Gerontol A Biol Sci Med Sci 2003;58: M1036-41.
48. Haywood CJr, Diener-West M, Strouse J, et al. Perceived discrimination in health care is associated with a greater burden of pain in sickle cell disease. J Pain Symptom Manage 2014;48:934-43.
49. Freiermuth CE, Haywood CJr, Silva S, et al. Attitudes toward patients with sickle cell disease in a multicenter sample of emergency department providers. Adv Emerg Nurs J 2014;36:335-47.
50. Khanna D, Maranian P, Rothrock N, et al. Feasibility and construct validity of PROMIS and legacy instruments in an academic scleroderma clinic. Value Health 2012;15:128-34.
51. Research V. How to estimate the length of a survey. 2009-2016. Available at: http://www. verstaresearch. com/newsletters/how-to-esti mate-the-length-of-a-survey. html. Accessed June 8, 2016.
52. Perronne V, Roberts-Harewood M, Bachir D, et al. Patterns of mortality in sickle cell disease in adults in France and England. Hematol J 2002;3:56-60.
53. Darbari DS, Wang Z, KwakM, et al. Severe painful vaso-occlusive crises and mortality in a contemporary adult sickle cell anemia cohort study. PLoS One 2013;8:e79923.
54. Tanabe P, Hafner JW,Martinovich Z, et al. Adult emergency department patients with sickle cell pain crisis: results from a quality improvement learning collaborative model to improve analgesic management. Acad Emerg Med 2012;19:430-8.
55. Wilkie DJ, Johnson B, Mack AK, et al. Sickle cell disease: an opportunity for palliative care across the life span. Nurs Clin North Am 2010; 45:375-97.
56. Carroll CP, Haywood C, Fagan P, et al. The course and correlates of high hospital utilization in sickle cell disease: evidence from a large, urban Medicaid managed care organization. Am J Hematol 2009;84: 666-70.