Adult Sickle Cell Quality-of-Life Measurement Information System (ASCQ-Me): Conceptual Model Based on Review of the Literature and Formative Research

Clinical Journal of Pain

Volumn 30, Issue 10, 2014, Pages 902-914

  Treadwell, Marsha J ^a   Hassell, Kathryn ^b   Levine, Roger ^c   Keller, San ^c  

^a CHILDREN S HOSPITAL OAKLAND   (United States)

^b UNIVERSITY OF COLORADO   (United States)

^c AMERICAN INSTITUTES FOR RESEARCH   (United States)

Author keywords

Health related quality of life; Quality of care; Sickle cell disease

Indexed keywords

ADULT; ADULT SICKLE CELL QUALITY OF LIFE MEASUREMENT SYSTEM; ANALGESIA; ARTICLE; CLASSIFICATION; CLINICAL ASSESSMENT TOOL; CLINICAL RESEARCH; CONCEPTUAL FRAMEWORK; DISEASE MODEL; EMOTIONAL STRESS; FAMILY; FEMALE; HEALTH CARE PERSONNEL; HEALTH CARE QUALITY; HUMAN; INFORMATION PROCESSING; MAJOR CLINICAL STUDY; MALE; PATIENT ASSESSMENT; PERSONAL EXPERIENCE; PRIORITY JOURNAL; QUALITY OF LIFE; QUALITY OF LIFE ASSESSMENT; SICKLE CELL ANEMIA; SOCIAL ASPECT; STRUCTURED INTERVIEW; TAXONOMY; WORK; ADOLESCENT; AGE; COMPLICATION; EMPLOYMENT; FACTUAL DATABASE; MIDDLE AGED; MOOD DISORDERS; PAIN; PAIN MEASUREMENT; PROCEDURES; PSYCHOLOGIC TEST; PSYCHOLOGY; PSYCHOMETRY; SEX DIFFERENCE; SOCIAL BEHAVIOR; STATISTICS AND NUMERICAL DATA; YOUNG ADULT;

ADOLESCENT; ADULT; AGE FACTORS; ANEMIA, SICKLE CELL; DATABASES, FACTUAL; EMPLOYMENT; FEMALE; HUMANS; INTERVIEW, PSYCHOLOGICAL; MALE; MIDDLE AGED; MOOD DISORDERS; PAIN; PAIN MEASUREMENT; PSYCHOMETRICS; QUALITY OF HEALTH CARE; QUALITY OF LIFE; SEX FACTORS; SOCIAL BEHAVIOR; YOUNG ADULT;

EID: 84922250849     PISSN: 07498047     EISSN: 15365409     Source Type: Journal    
DOI: 10.1097/AJP.0000000000000054     Document Type: Article

References (105)

1. Aisiku IP, Smith WR, McClish DK, et al. Comparisons of high versus low emergency department utilizers in sickle cell disease. Ann Emerg Med. 2009;53:587-593
2. Brawley OW, Cornelius LJ, Edwards LR, et al. National Institutes of Health Consensus Development Conference statement: hydroxyurea treatment for sickle cell disease. Ann Intern Med. 2008;148:932-938
3. Vichinsky EP, Neumayr LD, Gold JI, et al. Neuropsychological dysfunction and neuroimaging abnormalities in neurologically intact adults with sickle cell anemia. JAMA. 2010;303:1823-1831
4. Claster S, Vichinsky EP. Managing sickle cell disease. BMJ. 2003;327:1151-1155
5. National Heart, Lung and Blood Institute, National Institutes of Health. Workshop on adults with sickle cell disease: meeting unmet needs. 2002. Available at http://www.nhlbi. nih.gov/meetings/scdmtg/execsum.htm
6. Asnani MR, Lipps GE, Reid ME. Utility of WHOQOLBREF in measuring quality of life in sickle cell disease. Health Qual Life Outcomes. 2009;7:75
7. McClish DK, Penberthy LT, Bovbjerg VE, et al. Health related quality of life in sickle cell patients: the PiSCES project. Health Qual Life Outcomes. 2005;3:50
8. Smith WR, Bovbjerg VE, Penberthy LT, et al. Understanding pain and improving management of sickle cell disease: the PiSCES study. J Natl Med Assoc. 2005;97:183-193
9. Jenerette CM, Murdaugh C. Testing the theory of self-care management for sickle cell disease. Res Nurs Health. 2008; 31:355-369
10. World Health Organization. Constitution of the World Health Organization-Basic Documents, 45th Edition, Supplement. 2006
11. Keller S, Evensen C, Yang M, et al. Adult Sickle Cell Quality of Life Measurement Information System: ASCQMe User'sManual. Bethesda, MD: National Heart, Lung and Blood Institute; 2011
12. Ballas SK. Current issues in sickle cell pain and its management. Hematology Am Soc Hematol Educ Program. 2007:97-105
13. Mann-Jiles V, Morris DL. Quality of life of adult patients with sickle cell disease. J Am Acad Nurse Pract. 2009;21:340-349
14. Thomas VJ, Taylor LM. 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. 2005;7(part 3):345-363
15. Leavell SR, Ford CV. Psychopathology in patients with sickle cell disease. Psychosomatics. 1983;24:23-25, 28-29, 32 passim
16. Gil KM, Abrams MR, Phillips G, et al. Sickle cell disease pain: relation of coping strategies to adjustment. J Consult Clin Psychol. 1989;57:725-731
17. Thomas VJ, Hambleton I, Serjeant G. Psychological distress and coping in sickle cell disease: comparison of British and Jamaican attitudes. Ethn Health. 2001;6:129-136
18. Addis G, Spector R, Shaw E, et al. The physical, social and psychological impact of priapism on adult males with sickle cell disorder. Chronic Illn. 2007;3:145-154
19. Asnani MR, Reid ME, Ali SB, et al. Quality of life in patients with sickle cell disease in Jamaica: rural-urban differences. Rural Remote Health. 2008;8:890
20. McClish DK, Smith WR, Dahman BA, et al. Pain site frequency and location in sickle cell disease: the PiSCES project. Pain. 2009;145:246-251
21. McClish DK, Levenson JL, Penberthy LT, et al. Gender differences in pain and healthcare utilization for adult sickle cell patients: the PiSCES Project.JWomensHealth. 2006;15:146-154
22. Wilson Schaeffer JJ, Gil KM, Burchinal M, et al. Depression, disease severity, and sickle cell disease. J Behav Med. 1999; 22:115-126
23. Citero VA, Levenson JL, McClish DK, et al. The role of catastrophizing in sickle cell disease-The PiSCES project. Pain. 2007;133:39-46
24. Anie KA, Steptoe A, Bevan DH. Sickle cell disease: pain, coping and quality of life in a study of adults in the UK. Br J Health Psychol. 2002;7:331-344
25. Anie KA, Dasgupta T, Ezenduka P, et al. A cross-cultural study of psychosocial aspects of sickle cell disease in the UK and Nigeria. Psychol Health Med. 2007;12:299-304
26. Levenson JL, McClish DK, Dahman BA, et al. Depression and anxiety in adults with sickle cell disease: the PiSCES project. Psychosom Med. 2008;70:192-196
27. Edwards CL, Scales MT, Loughlin C, et al. A brief review of the pathophysiology, associated pain, and psychosocial issues in sickle cell disease. Int J Behav Med. 2005;12:171-179
28. Thomas V. Cognitive behavioural therapy in pain management for sickle cell disease. Int J Palliat Nurs. 2000;6:434-442
29. Abrams MR, Phillips G Jr, Whitworth E. Adaptation and coping: a look at a sickle cell patient population over age 30-An integral phase of the life long developmental process. J Health Soc Policy. 1994;5:141-160
30. Ohaeri JU, Shokunbi WA, Shokunbi KS, et al. The psychosocial problems of sickle cell disease sufferers and their methods of coping. Soc Sci Med. 1995;40:955-960
31. Kramer KD, Nash KB. The Sickle Cell Mutual Assistance Movement. In: Nash KB, ed. Psychosocial Aspects of Sickle Cell Disease: Past, Present, and Future Directions of Research. New York: The Haworth Press Inc.; 1994:203-214
32. Murray N, May A. Painful crises in sickle cell disease-patients' perspectives. BMJ. 1988;297:452-454
33. Gil KM, Carson JW, Sedway JA, et al. Follow-up of coping skills training in adults with sickle cell disease: analysis of daily pain and coping practice diaries. Health Psychol. 2000;19:85-90
34. Thompson RJ Jr, Gil KM, Abrams MR, et al. Stress coping, and psychological adjustment of adults with sickle cell disease. J Consult Clin Psychol. 1992;60:433-440
35. Thompson RJ Jr, Gil KM, Abrams MR, et al. Psychological adjustment of adults with sickle cell anemia: stability over 20 months, correlates, and predictors. J Clin Psychol. 1996;52: 253-261
36. Anie KA, Green J. Psychological therapies for sickle cell disease and pain. Cochrane Database Syst Rev. 2002;CD001916
37. Tinti G, Somera R Jr, Valente FM, et al. Benefits of kinesiotherapy and aquatic rehabilitation on sickle cell anemia. A case report. Genet Mol Res. 2010;9:360-364
38. Nadel C, Portadin G. Sickle cell crises: psychological factors associated with onset. N Y State J Med. 1977;77: 1075-1078
39. Strickland OL, 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
40. Harrison MO, Edwards CL, Koenig HG, et al. Religiosity/ spirituality and pain in patients with sickle cell disease. J Nerv Ment Dis. 2005;193:250-257
41. Cooper-Effa M, Blount W, Kaslow N, et al. Role of spirituality in patients with sickle cell disease. J Am Board Fam Pract. 2001;14:116-122
42. McCrae JD, Lumley MA. Health status in sickle cell disease: examining the roles of pain coping strategies, somatic awareness, and negative affectivity. J Behav Med. 1998;21:35-55
43. Gil KM, Abrams MR, Phillips G, et al. Sickle cell disease pain: 2. Predicting health care use and activity level at 9-month follow-up. J Consult Clin Psychol. 1992;60:267-273
44. Gil KM, Wilson JJ, Edens JL. The stability of pain coping strategies in young children adolescents, and adults with sickle cell disease over an 18-month period. Clin J Pain. 1997;13:110-115
45. Harris A, Parker N, Baker C. Adults with sickle cell. Psychol Health Med. 1998;3:171-179
46. Elander J, Lusher J, Bevan D, et al. Pain management and symptoms of substance dependence among patients with sickle cell disease. Soc Sci Med. 2003;57:1683-1696
47. Elander J, Lusher J, Bevan D, et al. Understanding the causes of problematic pain management in sickle cell disease: evidence that pseudoaddiction plays a more important role than genuine analgesic dependence. J Pain Symptom Manage. 2004;27:156-169
48. Levenson JL, McClish DK, Dahman BA, et al. Alcohol abuse in sickle cell disease: the Pisces Project. Am J Addict. 2007;16:383-388
49. Wright K, Adeosum O. Barriers to effective pain management in sickle cell disease. Br J Nurs. 2009;18:158-161
50. Wilkie DJ, Molokie R, Boyd-Seal D, et al. Patient-reported outcomes: descriptors of nociceptive and neuropathic pain and barriers to effective pain management in adult outpatients with sickle cell disease. J Natl Med Assoc. 2010;102:18-27
51. Hilton C, Osborn M, Knight S, et al. Psychiatric complications of homozygous sickle cell disease among young adults in the Jamaican Cohort Study. Br J Psychiatry. 1997;170:69-76
52. Udofia O, Oseikhuemen AE. Psychiatric morbidity in patients with sickle cell anaemia. West Afr J Med. 1996;15:196-200
53. Asnani MR, Fraser R, Lewis NA, et al. Depression and loneliness in Jamaicans with sickle cell disease. BMC Psychiatry. 2010;10:40
54. Hasan SP, Hashmi S, Alhassen M, et al. Depression in sickle cell disease. J Natl Med Assoc. 2003;95:533-537
55. Vichinsky EP, Johnson R, Lubin BH. Multidisciplinary approach to pain management in sickle cell disease. Am J Pediatr Hematol Oncol. 1982;4:328-333
56. Belgrave FZ, Molock SD. The role of depression in hospital admissions and emergency treatment of patients with sickle cell disease. J Natl Med Assoc. 1991;83:777-781
57. Laurence BD, George D, Woods D. Association between elevated depressive symptoms and clinical disease severity in African-American adults with sickle cell disease. J Natl Med Assoc. 2006;98:365-369
58. Damlouji NF, Kevess-Cohen R, Charache S, et al. Social disability and psychiatric morbidity in sickle cell anemia and diabetes patients. Psychosomatics. 1982;23:925-931
59. Atkin K, Ahmad WI. Living a 'normal' life: young people coping with thalassaemia major or sickle cell disorder. Soc Sci Med. 2001;53:615-626
60. Edwards R, Telfair J, Cecil H, et al. Self-efficacy as a predictor of adult adjustment to sickle cell disease: one-year outcomes. Psychosom Med. 2001;63:850-858
61. Lenoci JM, Telfair J, Cecil H, et al. Self-care in adults with sickle cell disease. West J Nurs Res. 2002;24:228-245
62. Collins R. Psychosocial variables and interventions in the patient populations. In: Hurtig A, Viera CT, eds. Sickle Cell Disease: Psychological and Psychosocial Issues. Chicago, IL: University of Illinois Press; 1986:62-74
63. Morin C, Waring EM. Depression and sickle cell anemia. South Med J. 1981;74:766-768
64. Jenerette C, Funk M, Murdaugh C. Sickle cell disease: a stigmatizing condition that may lead to depression. Issues Ment Health Nurs. 2005;26:1081-1101
65. Gil KM, Carson JW, Porter LS. Daily mood and stress predict pain, health care use, and work activity in African American adults with sickle-cell disease. Health Psychol. 2004;23:267-274
66. Grant MM, Gil KM, Floyd MY, et al. Depression and functioning in relation to health care use in sickle cell disease. Ann Behav Med. 2000;22:149-157
67. Anie KA, Steptoe A. Pain, mood and opioid medication use in sickle cell disease. Hematol J. 2003;4:71-73
68. Maxwell K, Streetly A, Bevan D. Experiences of hospital care and treatment seeking for pain from sickle cell disease: qualitative study. BMJ. 1999;318:1585-1590
69. Shelley B, Kramer KD, Nash KB. Sickle cell mutual assistance groups and the health services delivery system. J Health Soc Policy. 1994;5:243-259
70. Alao AO, Westmoreland N, Jindal S. Drug addiction in sickle cell disease: case report. Int J Psychiatry Med. 2003;33:97-101
71. Howard J, Anie KA, Holdcroft A, et al. Cannabis use in sickle cell disease: a questionnaire study. Br J Haematol. 2005;131:123-128
72. Shapiro BS, Benjamin LJ, Payne R, et al. Sickle cell-related pain: perceptions of medical practitioners. J Pain Symptom Manage. 1997;14:168-174
73. Waldrop RD, Mandry C. Health professional perceptions of opioid dependence among patients with pain. Am J Emerg Med. 1995;13:529-531
74. Pack-Mabien A, Labbe E, Herbert D, et al. Nurses' attitudes and practices in sickle cell pain management. Appl Nurs Res. 2001;14:187-192
75. Asnani MR, Lipps GE, Reid ME. Validation of the SF-36s in Jamaicans with sickle-cell disease. Psychol Health Med. 2009;14:606-618
76. Halabi-Tawil M, Lionnet F, Girot R, et al. Sickle cell leg ulcers: a frequently disabling complication and a marker of severity. Br J Dermatol. 2008;158:339-344
77. Anderson LP, Rehm LP. The relationship between strategies of coping and perception of pain in three chronic pain groups. J Clin Psychol. 1984;40:1170-1177
78. Belgrave FZ, Lewis DM. The role of social support in compliance and other health behaviors for African Americans with chronic illnesses. J Health Soc Policy. 1994;5:55-68
79. Kass NE, Hull SC, Natowicz MR, et al. Medical privacy and the disclosure of personal medical information: the beliefs and experiences of those with genetic and other clinical conditions. Am J Med Genet A. 2004;128A:261-270
80. Boyd JH, Watkins AR, Price CL, et al. Inadequate community knowledge about sickle cell disease among African-American women. J Natl Med Assoc. 2005;97:62-67
81. Adeyoju AB, Olujohungbe AB, Morris J, et al. Priapism in sickle-cell disease; incidence, risk factors and complications-An international multicentre study. BJU Int. 2002;90:898-902
82. Barrett DH, Wisotzek IE, Abel GG, et al. Assessment of psychosocial functioning of patients with sickle cell disease. South Med J. 1988;81:745-750
83. Ohaeri JU, Shokunbi WA. Psychosocial burden of sickle cell disease on caregivers in a Nigerian setting. J Natl Med Assoc. 2002;94:1058-1070
84. Porter LS, Gil KM, Sedway JA, et al. Pain and stress in sickle cell disease: an analysis of daily pain records. Int J Behav Med. 1998;5:185-203
85. Telfair J, Haque A, EtienneM, et al. Rural/urban differences in access to and utilization of services among people in Alabama with sickle cell disease. Public Health Rep. 2003;118:27-36
86. Asnani M, Lipps G, Reid M. Component structure of the SF-36s in Jamaicans with sickle cell disease. West Indian Med J. 2007;56:491-497
87. Adams-Graves P, Lamar K, Johnson C, et al. Development and validation of SIMS: an instrument for measuring quality of life of adults with sickle cell disease. Am J Hematol. 2008;83:558-562
88. Payne KA, Rofail D, Baladi JF, et al. Iron chelation therapy: clinical effectiveness, economic burden and quality of life in patients with iron overload. Adv Ther. 2008;25:725-742
89. Thuret I, Hacini M, Pegourie-Bandelier B, et al. Sociopsychological impact of infused iron chelation therapy with deferoxamine in metropolitan France: ISOSFER study results. Hematology. 2009;14:315-322
90. Ballas SK, Barton FB, Waclawiw MA, et al. Hydroxyurea and sickle cell anemia: effect on quality of life. Health Qual Life Outcomes. 2006;4:59
91. Haywood C Jr, Lanzkron S, Ratanawongsa N, et al. The association of provider communication with trust among adults with sickle cell disease. J Gen InternMed. 2010;25:543-548
92. Alleyne J, Thomas VJ. The management of sickle cell crisis pain as experienced by patients and their carers. J Adv Nurs. 1994;19:725-732
93. Bobo L, Miller ST, Smith WR, et al. Health perceptions and medical care opinions of inner-city adults with sickle cell disease or asthma compared with those of their siblings. South Med J. 1989;82:9-12
94. Booker M, Blethyn K, Wright C, et al. Pain management in sickle cell disease. Chronic Illn. 2006;2:39-50
95. Haywood C Jr, 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;101:1022-1033
96. Haywood C Jr, Lanzkron S, Ratanawongsa N, et al. Hospital self-discharge among adults with sickle-cell disease (SCD): associations with trust and interpersonal experiences with care. J Hosp Med. 2010;5:289-294
97. Telfair J, Myers J, Drezner S. Does race influence the provision of care to persons with sickle cell disease? Perceptions of multidisciplinary providers. J Health Care Poor Underserved. 1998;9:184-195
98. Ratanawongsa N, Haywood C Jr, Bediako S, et al. Health care provider attitudes toward patients with acute vasoocclusive crisis due to sickle cell disease: development of a scale. Patient Educ Couns. 2009;76:272-278
99. Flanagan JC. The critical incident technique. Psychol Bull. 1954;51:327-358
100. Butterfield LD, Borgen WA, Amundsen NE, et al. Fifty years of the critical incident technique: 1954-2004 and beyond. Quant Res. 2005;5:475-497
101. Fitzgerald K, Seale NS, Kerins CA, et al. The critical incident technique: a useful tool for conducting qualitative research. J Dent Educ. 2008;72:299-304
102. Levine R, Shore K. Use of the Critical Incident Technique to Develop Survey Items Measuring Patient Experiences of Ambulatory Care. Baltimore, MD: Proceedings of CAHPS (R) Ninth National User Group Meeting; 2006
103. Tang NK, Goodchild CE, Hester J, et al. Pain-related insomnia versus primary insomnia: a comparison study of sleep pattern, psychological characteristics, and cognitivebehavioral processes. Clin J Pain. 2012;28:428-436
104. Menefee LA, Frank ED, Doghramji K, et al. Self-reported sleep quality and quality of life for individuals with chronic pain conditions. Clin J Pain. 2000;16:290-297
105. Chiu YH, Silman AJ, Macfarlane GJ, et al. Poor sleep and depression are independently associated with a reduced pain threshold. Results of a population based study. Pain. 2005;115:316-321.