메뉴 건너뛰기




Volumn 15, Issue 1, 2017, Pages

Sensitivity of alternative measures of functioning and wellbeing for adults with sickle cell disease: Comparison of PROMIS® to ASCQ-MeSM

Author keywords

ASCQ MeSM; Item response theory; Patient reported outcomes; PROMIS ; Validity, Sickle cell disease

Indexed keywords

ADULT; ADULT SICKLE CELL QUALITY OF LIFE MEASUREMENT SYSTEM; ANXIETY; ARTICLE; COMPARATIVE STUDY; CONTROLLED STUDY; DEPRESSION; DISEASE SEVERITY; EMOTIONALITY; FATIGUE; FEMALE; GEOGRAPHIC DISTRIBUTION; HUMAN; MAJOR CLINICAL STUDY; MALE; MORBIDITY; OUTCOME ASSESSMENT; PAIN ASSESSMENT; PATIENT REPORTED OUTCOME MEASUREMENT INFORMATION SYSTEM; PATIENT SATISFACTION; PHYSICAL PERFORMANCE; PSYCHOMETRY; QUALITY OF LIFE ASSESSMENT; SENSITIVITY ANALYSIS; SICKLE CELL ANEMIA; SLEEP DISORDER; SOCIAL BEHAVIOR; VALIDITY; WELLBEING; MIDDLE AGED; PAIN; PSYCHOLOGY; QUALITY OF LIFE; QUESTIONNAIRE; REPRODUCIBILITY; SEVERITY OF ILLNESS INDEX; STANDARDS; VALIDATION STUDY; YOUNG ADULT;

EID: 85020009739     PISSN: None     EISSN: 14777525     Source Type: Journal    
DOI: 10.1186/s12955-017-0661-5     Document Type: Article
Times cited : (48)

References (100)
  • 1
    • 0242552237 scopus 로고    scopus 로고
    • Managing sickle cell disease
    • Claster S, Vichinsky EP. Managing sickle cell disease. BMJ. 2003;327(7424):1151-5.
    • (2003) BMJ , vol.327 , Issue.7424 , pp. 1151-1155
    • Claster, S.1    Vichinsky, E.P.2
  • 2
    • 84922250849 scopus 로고    scopus 로고
    • Adult sickle cell quality of life measurement information system (ASCQ-Me): conceptual model based on review of the literature and formative research
    • Treadwell MT, 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. 2013;30(10):902-14.
    • (2013) Clin J Pain , vol.30 , Issue.10 , pp. 902-914
    • Treadwell, M.T.1
  • 3
    • 84910036517 scopus 로고    scopus 로고
    • Patient reports of health outcome for adults living with sickle cell disease: development and testing of ASCQ-Me item banks
    • Keller SD, et al. Patient reports of health outcome for adults living with sickle cell disease: development and testing of ASCQ-Me item banks. Health Qual Life Outcomes. 2014;22:125.
    • (2014) Health Qual Life Outcomes , vol.22 , pp. 125
    • Keller, S.D.1
  • 4
    • 67649573353 scopus 로고    scopus 로고
    • Department of Health and Human Services, editor
    • RFA-CA-13-008: Person-centered outcomes research resource
    • N.I.H. Department of Health and Human Services, editor. RFA-CA-13-008: Person-centered outcomes research resource. 2013.
    • (2013)
  • 5
    • 84983035874 scopus 로고    scopus 로고
    • News from the NIH: Person-centered outcomes measurement: NIH-supported measurement systems to evaluate self-assessed health, functional performance, and symptomatic toxicity
    • Smith A, et al. News from the NIH: Person-centered outcomes measurement: NIH-supported measurement systems to evaluate self-assessed health, functional performance, and symptomatic toxicity. Transl Behav Med. 2016;6(3):470-74.
    • (2016) Transl Behav Med. , vol.6 , Issue.3 , pp. 470-474
    • Smith, A.1
  • 6
    • 33644801736 scopus 로고    scopus 로고
    • The promise of PROMIS: using item response theory to improve assessment of patient-reported outcomes
    • Fries JF, Bruce B, Cella D. The promise of PROMIS: using item response theory to improve assessment of patient-reported outcomes. Clin Exp Rheumatol. 2005;23(5 Suppl 39):S53-7.
    • (2005) Clin Exp Rheumatol , vol.23 , Issue.5 , pp. S53-S57
    • Fries, J.F.1    Bruce, B.2    Cella, D.3
  • 7
    • 34247363702 scopus 로고    scopus 로고
    • Evaluation of item candidates: the PROMIS qualitative item review
    • DeWalt DA, et al. Evaluation of item candidates: the PROMIS qualitative item review. Med Care. 2007;45(5 Suppl 1):S12-21.
    • (2007) Med Care , vol.45 , Issue.5 , pp. S12-21
    • DeWalt, D.A.1
  • 8
    • 34447123367 scopus 로고    scopus 로고
    • The future of outcomes measurement: item banking, tailored short-forms, and computerized adaptive assessment
    • Cella D, et al. The future of outcomes measurement: item banking, tailored short-forms, and computerized adaptive assessment. Qual Life Res. 2007;16 Suppl 1:133-41.
    • (2007) Qual Life Res , vol.16 , pp. 133-141
    • Cella, D.1
  • 9
    • 34247360479 scopus 로고    scopus 로고
    • Developing the Patient-Reported Outcomes Measurement Information System (PROMIS)
    • Adler D. Developing the Patient-Reported Outcomes Measurement Information System (PROMIS). Med Care. 2007;45(5):S1-2.
    • (2007) Med Care , vol.45 , Issue.5 , pp. S1-S2
    • Adler, D.1
  • 10
    • 64549091968 scopus 로고    scopus 로고
    • Comparisons of high versus low emergency department utilizers in sickle cell disease
    • Aisiku IP, et al. Comparisons of high versus low emergency department utilizers in sickle cell disease. Ann Emerg Med. 2009;53(5):587-93.
    • (2009) Ann Emerg Med , vol.53 , Issue.5 , pp. 587-593
    • Aisiku, I.P.1
  • 11
    • 45549101008 scopus 로고    scopus 로고
    • National Institutes of Health Consensus Development Conference statement: hydroxyurea treatment for sickle cell disease
    • Brawley OW, et al. National Institutes of Health Consensus Development Conference statement: hydroxyurea treatment for sickle cell disease. Ann Intern Med. 2008;148(12):932-8. PMID: 18458271, Epub 2008 May 5.
    • (2008) Ann Intern Med , vol.148 , Issue.12 , pp. 932-938
    • Brawley, O.W.1
  • 12
    • 84959368742 scopus 로고    scopus 로고
    • Central nervous system complications and management in sickle cell disease
    • DeBaun MR, Kirkman FJ. Central nervous system complications and management in sickle cell disease. Blood. 2016;127(7):829-38.
    • (2016) Blood. , vol.127 , Issue.7 , pp. 829-838
    • DeBaun, M.R.1    Kirkman, F.J.2
  • 13
    • 77951712618 scopus 로고    scopus 로고
    • Improved survival of children and adolescents with sickle cell disease
    • Quinn CT, et al. Improved survival of children and adolescents with sickle cell disease. Blood. 2010;115(17):3447-52.
    • (2010) Blood , vol.115 , Issue.17 , pp. 3447-3452
    • Quinn, C.T.1
  • 14
    • 84868624911 scopus 로고    scopus 로고
    • Transition and sickle cell disease
    • DeBaun MR, Telfair J. Transition and sickle cell disease. Pediatrics. 2012;130(5):926-35.
    • (2012) Pediatrics , vol.130 , Issue.5 , pp. 926-935
    • DeBaun, M.R.1    Telfair, J.2
  • 15
    • 34249029657 scopus 로고    scopus 로고
    • Incidence of invasive pneumococcal disease among individuals with sickle cell disease before and after the introduction of the pneumococcal conjugate vaccine
    • Halasa NB, 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(11):1428-33.
    • (2007) Clin Infect Dis , vol.44 , Issue.11 , pp. 1428-1433
    • Halasa, N.B.1
  • 16
    • 84907016412 scopus 로고    scopus 로고
    • Management of sickle cell disease: summary of the 2014 evidence-based report by expert panel members
    • Yawn BP, et al. Management of sickle cell disease: summary of the 2014 evidence-based report by expert panel members. Jama. 2014;312(10):1033-48.
    • (2014) Jama , vol.312 , Issue.10 , pp. 1033-1048
    • Yawn, B.P.1
  • 17
    • 85020027144 scopus 로고    scopus 로고
    • Workshop on Adults with Sickle Cell Diseases: Meeting Unmet Needs
    • 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/scdmtng/execsum.htm.
    • Executive Summary and Recommendations. Retrieved September , vol.8 , pp. 2015
  • 18
    • 85019717957 scopus 로고    scopus 로고
    • Health-related quality of life and adherence to hydroxyurea in adolescents and young adults with sickle cell disease
    • Nov. [Epub ahead of print]
    • Badawy SM, et al. Health-related quality of life and adherence to hydroxyurea in adolescents and young adults with sickle cell disease. Pediatr Blood Cancer. 2016 Nov.;28 [Epub ahead of print].
    • (2016) Pediatr Blood Cancer. , pp. 28
    • Badawy, S.M.1
  • 19
    • 84921418905 scopus 로고    scopus 로고
    • Health-related quality of life in children with sickle cell anemia: impact of blood transfusion therapy
    • Beverung LM, et al. Health-related quality of life in children with sickle cell anemia: impact of blood transfusion therapy. Am J Hematol. 2015;90(2):139-43.
    • (2015) Am J Hematol , vol.90 , Issue.2 , pp. 139-143
    • Beverung, L.M.1
  • 20
    • 84924278004 scopus 로고    scopus 로고
    • Health-related quality of life after allogeneic hematopoietic stem cell transplantation for sickle cell disease
    • Bhatia M, et al. Health-related quality of life after allogeneic hematopoietic stem cell transplantation for sickle cell disease. Biol Blood Marrow Transplant. 2015;21(4):666-72.
    • (2015) Biol Blood Marrow Transplant , vol.21 , Issue.4 , pp. 666-672
    • Bhatia, M.1
  • 21
    • 84864915209 scopus 로고    scopus 로고
    • Journeys to recovery study, HSCT-CHESS™ study. Health-related quality of life (HRQL) in children with sickle cell disease and thalassemia following hematopoietic stem cell transplant (HSCT)
    • Kelly MJ, et al. Journeys to recovery study, HSCT-CHESS™ study. Health-related quality of life (HRQL) in children with sickle cell disease and thalassemia following hematopoietic stem cell transplant (HSCT). Pediatr Blood Cancer. 2012;59(4):725-31. Epub 2011 Dec 19.
    • (2012) Pediatr Blood Cancer , vol.59 , Issue.4 , pp. 725-731
    • Kelly, M.J.1
  • 22
    • 79955497632 scopus 로고    scopus 로고
    • Differences in health-related quality of life in children with sickle cell disease receiving hydroxyurea
    • Thornburg CD, et al. Differences in health-related quality of life in children with sickle cell disease receiving hydroxyurea. J Pediatr Hematol Oncol. 2011;33(4):251-4.
    • (2011) J Pediatr Hematol Oncol , vol.33 , Issue.4 , pp. 251-254
    • Thornburg, C.D.1
  • 23
    • 34447115830 scopus 로고    scopus 로고
    • Developing tailored instruments: item banking and computerized adaptive assessment
    • Bjorner JB, et al. Developing tailored instruments: item banking and computerized adaptive assessment. Qual Life Res. 2007;16 Suppl 1:95-108.
    • (2007) Qual Life Res , vol.16 , pp. 95-108
    • Bjorner, J.B.1
  • 24
    • 34247385541 scopus 로고    scopus 로고
    • Psychometric evaluation and calibration of health-related quality of life item banks: plans for the Patient-Reported Outcomes Measurement Information System (PROMIS)
    • Reeve BB, et al. Psychometric evaluation and calibration of health-related quality of life item banks: plans for the Patient-Reported Outcomes Measurement Information System (PROMIS). Med Care. 2007;45(5 Suppl 1):S22-31.
    • (2007) Med Care , vol.45 , Issue.5 , pp. S22-31
    • Reeve, B.B.1
  • 25
    • 85019994007 scopus 로고    scopus 로고
    • Development of an "R"-Based Computer Adaptive Assessment of Health Based on Patient Reports of their Functioning and Wellbeing
    • Aug 4-7; Washington, D.C
    • Keller S, Yang M. Development of an "R"-Based Computer Adaptive Assessment of Health Based on Patient Reports of their Functioning and Wellbeing. Poster presented at: The 119th Annual American Psychological Association Convention; Aug 4-7 2011; Washington, D.C.
    • (2011) Poster presented at: The 119th Annual American Psychological Association Convention
    • Keller, S.1    Yang, M.2
  • 26
    • 0024637480 scopus 로고
    • Generic and disease-specific measures in assessing health status and quality of life
    • Patrick DL, Deyo RA. Generic and disease-specific measures in assessing health status and quality of life. Med Care. 1989;27(3 Suppl):S217-32.
    • (1989) Med Care , vol.27 , Issue.3 , pp. S217-S232
    • Patrick, D.L.1    Deyo, R.A.2
  • 27
    • 0026859852 scopus 로고
    • Methods for assessing condition-specific and generic functional status outcomes after total knee replacement
    • Kantz ME, et al. Methods for assessing condition-specific and generic functional status outcomes after total knee replacement. Med Care. 1992;30(5 Suppl):Ms240-52.
    • (1992) Med Care , vol.30 , Issue.5 , pp. 240-252
    • Kantz, M.E.1
  • 28
    • 53149106655 scopus 로고    scopus 로고
    • Views of older persons with multiple morbidities on competing outcomes and clinical decision-making
    • Fried TR, et al. Views of older persons with multiple morbidities on competing outcomes and clinical decision-making. J Am Geriatr Soc. 2008;56(10):1839-44.
    • (2008) J Am Geriatr Soc , vol.56 , Issue.10 , pp. 1839-1844
    • Fried, T.R.1
  • 29
    • 0028953590 scopus 로고
    • Longitudinal sensitivity of generic and specific health measures in chronic sinusitis
    • Gliklich RE, Hilinski JM. Longitudinal sensitivity of generic and specific health measures in chronic sinusitis. Qual Life Res. 1995;4(1):27-32.
    • (1995) Qual Life Res , vol.4 , Issue.1 , pp. 27-32
    • Gliklich, R.E.1    Hilinski, J.M.2
  • 30
    • 77956957760 scopus 로고    scopus 로고
    • Relative to the general US population, chronic diseases are associated with poorer health-related quality of life as measured by the Patient-Reported Outcomes Measurement Information System (PROMIS)
    • Rothrock NE, et al. Relative to the general US population, chronic diseases are associated with poorer health-related quality of life as measured by the Patient-Reported Outcomes Measurement Information System (PROMIS). J Clin Epidemiol. 2010;63(11):1195-204.
    • (2010) J Clin Epidemiol , vol.63 , Issue.11 , pp. 1195-1204
    • Rothrock, N.E.1
  • 32
    • 0032037521 scopus 로고    scopus 로고
    • Comparative responsiveness of generic versus disease-specific and weighted versus unweighted health status measures in carpal tunnel syndrome
    • Bessette L, et al. Comparative responsiveness of generic versus disease-specific and weighted versus unweighted health status measures in carpal tunnel syndrome. Med Care. 1998;36(4):491-502.
    • (1998) Med Care , vol.36 , Issue.4 , pp. 491-502
    • Bessette, L.1
  • 33
    • 84875745423 scopus 로고    scopus 로고
    • Condition-specific measure was more responsive than generic measure in colorectal cancer: all but social domains
    • Wong CK, et al. Condition-specific measure was more responsive than generic measure in colorectal cancer: all but social domains. J Clin Epidemiol. 2013;66(5):557-65.
    • (2013) J Clin Epidemiol , vol.66 , Issue.5 , pp. 557-565
    • Wong, C.K.1
  • 34
    • 0037444402 scopus 로고    scopus 로고
    • Is a condition-specific instrument for patients with low back pain/leg symptoms really necessary? The responsiveness of the Oswestry Disability Index, MODEMS, and the SF-36
    • Walsh TL, et al. Is a condition-specific instrument for patients with low back pain/leg symptoms really necessary? The responsiveness of the Oswestry Disability Index, MODEMS, and the SF-36. Spine (Phila Pa 1976). 2003;28(6):607-15.
    • (2003) Spine (Phila Pa 1976) , vol.28 , Issue.6 , pp. 607-615
    • Walsh, T.L.1
  • 35
    • 84897987169 scopus 로고    scopus 로고
    • Validation of GAITRite and PROMIS as high-throughput physical function outcome measures following ACL reconstruction
    • Papuga MO, et al. Validation of GAITRite and PROMIS as high-throughput physical function outcome measures following ACL reconstruction. J Orthop Res. 2014;32(6):793-801.
    • (2014) J Orthop Res , vol.32 , Issue.6 , pp. 793-801
    • Papuga, M.O.1
  • 36
    • 84879230959 scopus 로고    scopus 로고
    • TM sickle cell disease module: feasibility. reliability and validity
    • TM sickle cell disease module: feasibility. reliability and validity. Pediatr Blood Cancer. 2013;60(8):1338-44.
    • (2013) Pediatr Blood Cancer , vol.60 , Issue.8 , pp. 1338-1344
    • Panepinto, J.A.1
  • 37
    • 0020583112 scopus 로고
    • A study of the natural history of back pain. Part I: development of a reliable and sensitive measure of disability in low-back pain
    • Roland M, Morris R. A study of the natural history of back pain. Part I: development of a reliable and sensitive measure of disability in low-back pain. Spine (Phila Pa 1976). 1983;8(2):141-4.
    • (1983) Spine (Phila Pa 1976) , vol.8 , Issue.2 , pp. 141-144
    • Roland, M.1    Morris, R.2
  • 38
    • 16444374605 scopus 로고    scopus 로고
    • The role of generic and disease-specific measures of physical and role functioning in assessing patient outcomes: a longitudinal study
    • Ren XS, et al. The role of generic and disease-specific measures of physical and role functioning in assessing patient outcomes: a longitudinal study. J Ambul Care Manage. 2005;28(2):157-66.
    • (2005) J Ambul Care Manage , vol.28 , Issue.2 , pp. 157-166
    • Ren, X.S.1
  • 39
    • 84964983521 scopus 로고    scopus 로고
    • Guidance for Industry: Patient-Reported Outcome Measures: Use in Medical Product Development to Support labeling Claims
    • Accessed 25 Apr
    • US Food and Drug Administration. Guidance for Industry: Patient-Reported Outcome Measures: Use in Medical Product Development to Support labeling Claims Available from: https://www.fda.gov/downloads/drugs/guidances/ucm193282.pdf. Accessed 25 Apr 2017.
    • (2017)
  • 40
    • 0023262407 scopus 로고
    • A measure of quality of life for clinical trials in chronic lung disease
    • Guyatt GH, et al. A measure of quality of life for clinical trials in chronic lung disease. Thorax. 1987;42(10):773-8.
    • (1987) Thorax , vol.42 , Issue.10 , pp. 773-778
    • Guyatt, G.H.1
  • 41
    • 10144251746 scopus 로고    scopus 로고
    • The European Organization for Research and Treatment of Cancer breast cancer-specific quality-of-life questionnaire module: first results from a three-country field study
    • Sprangers MA, et al. The European Organization for Research and Treatment of Cancer breast cancer-specific quality-of-life questionnaire module: first results from a three-country field study. J Clin Oncol. 1996;14(10):2756-68.
    • (1996) J Clin Oncol , vol.14 , Issue.10 , pp. 2756-2768
    • Sprangers, M.A.1
  • 42
    • 0030036098 scopus 로고    scopus 로고
    • Quality of life in patients with Parkinson's disease: development of a questionnaire
    • de Boer AG, et al. Quality of life in patients with Parkinson's disease: development of a questionnaire. J Neurol Neurosurg Psychiatry. 1996;61(1):70-4.
    • (1996) J Neurol Neurosurg Psychiatry , vol.61 , Issue.1 , pp. 70-74
    • Boer, A.G.1
  • 43
    • 0026695249 scopus 로고
    • A scale for the measurement of quality of life in adults with asthma
    • Marks GB, Dunn SM, Woolcock AJ. A scale for the measurement of quality of life in adults with asthma. J Clin Epidemiol. 1992;45(5):461-72.
    • (1992) J Clin Epidemiol , vol.45 , Issue.5 , pp. 461-472
    • Marks, G.B.1    Dunn, S.M.2    Woolcock, A.J.3
  • 44
    • 0032874860 scopus 로고    scopus 로고
    • The stroke impact scale version 2.0: evaluation of reliability, validity, and sensitivity to change
    • Duncan PW, et al. The stroke impact scale version 2.0: evaluation of reliability, validity, and sensitivity to change. Stroke. 1999;30(10):2131-40.
    • (1999) Stroke , vol.30 , Issue.10 , pp. 2131-2140
    • Duncan, P.W.1
  • 45
    • 84865484260 scopus 로고    scopus 로고
    • New paradigm for patient-reported outcomes assessment in foot & ankle research: computerized adaptive testing
    • Hung M, et al. New paradigm for patient-reported outcomes assessment in foot & ankle research: computerized adaptive testing. Foot Ankle Int. 2012;33(8):621-6.
    • (2012) Foot Ankle Int , vol.33 , Issue.8 , pp. 621-626
    • Hung, M.1
  • 46
    • 84885954232 scopus 로고    scopus 로고
    • Comparisons across depression assessment instruments in adolescence and young adulthood: an item response theory study using two linking methods
    • Olino TM, et al. Comparisons across depression assessment instruments in adolescence and young adulthood: an item response theory study using two linking methods. J Abnorm Child Psychol. 2013;41(8):1267-77.
    • (2013) J Abnorm Child Psychol , vol.41 , Issue.8 , pp. 1267-1277
    • Olino, T.M.1
  • 47
    • 36849085482 scopus 로고    scopus 로고
    • Evaluation of a preliminary physical function item bank supported the expected advantages of the Patient-Reported Outcomes Measurement Information System (PROMIS)
    • Rose M, et al. Evaluation of a preliminary physical function item bank supported the expected advantages of the Patient-Reported Outcomes Measurement Information System (PROMIS). J Clin Epidemiol. 2008;61(1):17-33.
    • (2008) J Clin Epidemiol , vol.61 , Issue.1 , pp. 17-33
    • Rose, M.1
  • 48
    • 75149138212 scopus 로고    scopus 로고
    • Efficiency of static and computer adaptive short forms compared to full-length measures of depressive symptoms
    • Choi SW, et al. Efficiency of static and computer adaptive short forms compared to full-length measures of depressive symptoms. Qual Life Res. 2010;19(1):125-36.
    • (2010) Qual Life Res , vol.19 , Issue.1 , pp. 125-136
    • Choi, S.W.1
  • 49
    • 84875569882 scopus 로고    scopus 로고
    • Sickle cell disease
    • Sep 15 [updated 2014 Oct23] In: Pagan RA, et al. editors. Seattle (WA): University of Washington, Seattle; 1993-2016
    • Bender MA, Seibel GD. Sickle cell disease. 2003, Sep 15 [updated 2014 Oct23] In: Pagan RA, et al. editors. GeneReviews® [Internet]. Seattle (WA): University of Washington, Seattle; 1993-2016.
    • (2003) GeneReviews® [Internet]
    • Bender, M.A.1    Seibel, G.D.2
  • 50
    • 58449126877 scopus 로고    scopus 로고
    • Sickle cell anemia, the first molecular disease: overview of molecular etiology, pathophysiology, and therapeutic approaches
    • Steinberg MH. Sickle cell anemia, the first molecular disease: overview of molecular etiology, pathophysiology, and therapeutic approaches. Scientific World J. 2008;25(8):1295-324.
    • (2008) Scientific World J , vol.25 , Issue.8 , pp. 1295-1324
    • Steinberg, M.H.1
  • 51
    • 20044367676 scopus 로고    scopus 로고
    • Predicting clinical severity in sickle cell anaemia
    • Steinberg MH. Predicting clinical severity in sickle cell anaemia. Br J Haematol. 2005;129(4):465-81.
    • (2005) Br J Haematol , vol.129 , Issue.4 , pp. 465-481
    • Steinberg, M.H.1
  • 52
    • 34948867270 scopus 로고    scopus 로고
    • A network model to predict the risk of death in sickle cell disease
    • Sebastiani P, et al. A network model to predict the risk of death in sickle cell disease. Blood. 2007;110(7):2727-35.
    • (2007) Blood , vol.110 , Issue.7 , pp. 2727-2735
    • Sebastiani, P.1
  • 53
    • 69249187951 scopus 로고    scopus 로고
    • The import of abdominal pain in adults with sickle cell disorder
    • Akinola NO, et al. The import of abdominal pain in adults with sickle cell disorder. West Afr J Med. 2009;28(2):83-6.
    • (2009) West Afr J Med , vol.28 , Issue.2 , pp. 83-86
    • Akinola, N.O.1
  • 54
    • 0034782782 scopus 로고    scopus 로고
    • Sickle cell disease: current clinical management
    • Ballas SK, et al. Sickle cell disease: current clinical management. Semin Hematol. 2001;38(4):307-14.
    • (2001) Semin Hematol , vol.38 , Issue.4 , pp. 307-314
    • Ballas, S.K.1
  • 55
    • 74049109698 scopus 로고    scopus 로고
    • Genetic modifiers of the severity of sickle cell anemia identified through a genome-wide association study
    • Sebastiani P, et al. Genetic modifiers of the severity of sickle cell anemia identified through a genome-wide association study. Am J Hematol. 2010;85(1):29-35.
    • (2010) Am J Hematol , vol.85 , Issue.1 , pp. 29-35
    • Sebastiani, P.1
  • 56
    • 33646764967 scopus 로고    scopus 로고
    • Modifier genes and sickle cell anemia
    • Steinberg MH, Adewoye AH. Modifier genes and sickle cell anemia. Curr Opin Hematol. 2006;13(3):131-6.
    • (2006) Curr Opin Hematol , vol.13 , Issue.3 , pp. 131-136
    • Steinberg, M.H.1    Adewoye, A.H.2
  • 57
    • 0038540202 scopus 로고    scopus 로고
    • Hospital resource utilization among patients with sickle cell disease
    • Mayer ML, et al. Hospital resource utilization among patients with sickle cell disease. J Health Care Poor Underserved. 2003;14(1):122-35.
    • (2003) J Health Care Poor Underserved , vol.14 , Issue.1 , pp. 122-135
    • Mayer, M.L.1
  • 58
    • 64049113589 scopus 로고    scopus 로고
    • Factors associated with hospital readmission in sickle cell disease
    • Loureiro MM, et al. Factors associated with hospital readmission in sickle cell disease. BMC Blood Disord. 2009;9:2. doi: 10.1186/1471-2326-9-2.
    • (2009) BMC Blood Disord , vol.9 , pp. 2
    • Loureiro, M.M.1
  • 59
    • 84892430495 scopus 로고    scopus 로고
    • Severe painful vaso-occlusive crises and mortality in contemporary adult sickle cell anemia cohort study
    • Dabari S, et al. Severe painful vaso-occlusive crises and mortality in contemporary adult sickle cell anemia cohort study. PLoS One. 2013;8(11):e79923.
    • (2013) PLoS One. , vol.8 , Issue.11
    • Dabari, S.1
  • 60
    • 77954775825 scopus 로고    scopus 로고
    • Acute kidney injury in sickle patients with painful crisis or acute chest syndrome and its relation to pulmonary hypertension
    • Audard V, et al. Acute kidney injury in sickle patients with painful crisis or acute chest syndrome and its relation to pulmonary hypertension. Nephrol Dial Transplant. 2010;25(8):2524-9.
    • (2010) Nephrol Dial Transplant , vol.25 , Issue.8 , pp. 2524-2529
    • Audard, V.1
  • 61
    • 62449189504 scopus 로고    scopus 로고
    • Risk factors for hospital readmission within 30 days: a new quality measure for children with sickle cell disease
    • Frei-Jones MJ, et al. Risk factors for hospital readmission within 30 days: a new quality measure for children with sickle cell disease. Pediatr Blood Cancer. 2009;52(4):481-5.
    • (2009) Pediatr Blood Cancer , vol.52 , Issue.4 , pp. 481-485
    • Frei-Jones, M.J.1
  • 62
    • 70349492889 scopus 로고    scopus 로고
    • The course and correlates of high hospital utilization in sickle cell disease: evidence from a large, urban Medicaid managed care organization
    • Carroll CP, 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(10):666-70.
    • (2009) Am J Hematol , vol.84 , Issue.10 , pp. 666-670
    • Carroll, C.P.1
  • 63
    • 38749109710 scopus 로고    scopus 로고
    • Daily assessment of pain in adults with sickle cell disease
    • Smith WR, et al. Daily assessment of pain in adults with sickle cell disease. Ann Intern Med. 2008;148(2):94-101.
    • (2008) Ann Intern Med , vol.148 , Issue.2 , pp. 94-101
    • Smith, W.R.1
  • 64
    • 10944233777 scopus 로고    scopus 로고
    • Vaso-occlusion in children with sickle cell disease: clinical characteristics and biologic correlates
    • Dampier C, et al. Vaso-occlusion in children with sickle cell disease: clinical characteristics and biologic correlates. J Pediatr Hematol Oncol. 2004;26(12):785-90.
    • (2004) J Pediatr Hematol Oncol , vol.26 , Issue.12 , pp. 785-790
    • Dampier, C.1
  • 65
    • 70450059035 scopus 로고    scopus 로고
    • Partial splenectomy prevents splenic sequestration crises in sickle cell disease
    • Vick LR, et al. Partial splenectomy prevents splenic sequestration crises in sickle cell disease. J Pediatr Surg. 2009;44(11):2088-91.
    • (2009) J Pediatr Surg , vol.44 , Issue.11 , pp. 2088-2091
    • Vick, L.R.1
  • 66
    • 38349124141 scopus 로고    scopus 로고
    • Sickle cell leg ulcers: a frequently disabling complication and a marker of severity
    • Halabi-Tawil M. Sickle cell leg ulcers: a frequently disabling complication and a marker of severity. Br J Dermatol. 2008;158(2):339-44.
    • (2008) Br J Dermatol , vol.158 , Issue.2 , pp. 339-344
    • Halabi-Tawil, M.1
  • 67
    • 33646271370 scopus 로고    scopus 로고
    • Sickle cell leg ulcers: associations with haemolysis and SNPs in Klotho, TEK and genes of the TGF-beta/BMP pathway
    • Nolan VG, et al. Sickle cell leg ulcers: associations with haemolysis and SNPs in Klotho, TEK and genes of the TGF-beta/BMP pathway. Br J Haematol. 2006;133(5):570-8.
    • (2006) Br J Haematol , vol.133 , Issue.5 , pp. 570-578
    • Nolan, V.G.1
  • 68
    • 33744934804 scopus 로고    scopus 로고
    • Abnormal pulmonary function in adults with sickle cell anemia
    • Klings ES, et al. Abnormal pulmonary function in adults with sickle cell anemia. Am J Respir Crit Care Med. 2006;173(11):1264-9.
    • (2006) Am J Respir Crit Care Med , vol.173 , Issue.11 , pp. 1264-1269
    • Klings, E.S.1
  • 69
    • 0029017748 scopus 로고
    • Clinical events in the first decade in a cohort of infants with sickle cell disease. Cooperative Study of Sickle Cell Disease
    • Gill FM, et al. Clinical events in the first decade in a cohort of infants with sickle cell disease. Cooperative Study of Sickle Cell Disease. Blood. 1995;86(2):776-83.
    • (1995) Blood , vol.86 , Issue.2 , pp. 776-783
    • Gill, F.M.1
  • 70
    • 4243055984 scopus 로고    scopus 로고
    • Health related quality of life in pregeriatric patients with chronic diseases at urban, public supported clinics
    • Cheng L, et al. Health related quality of life in pregeriatric patients with chronic diseases at urban, public supported clinics. Health Qual Life Outcomes. 2003;1:63.
    • (2003) Health Qual Life Outcomes , vol.1 , pp. 63
    • Cheng, L.1
  • 71
    • 0034834389 scopus 로고    scopus 로고
    • Functional status, health problems, age and comorbidity in primary care patients
    • Wensing M, et al. Functional status, health problems, age and comorbidity in primary care patients. Qual Life Res. 2001;10(2):141-8.
    • (2001) Qual Life Res , vol.10 , Issue.2 , pp. 141-148
    • Wensing, M.1
  • 72
    • 0034443279 scopus 로고    scopus 로고
    • Multiple chronic health problems are negatively associated with health related quality of life (HRQoL) irrespective of age
    • Michelson H, et al. Multiple chronic health problems are negatively associated with health related quality of life (HRQoL) irrespective of age. Qual Life Res. 2000;9(10):1093-104.
    • (2000) Qual Life Res , vol.9 , Issue.10 , pp. 1093-1104
    • Michelson, H.1
  • 73
    • 58149404656 scopus 로고
    • Methods for scoring a check-list type rating scale
    • Meyer HH. Methods for scoring a check-list type rating scale. J Appl Psychol. 1951;35(1):46-9.
    • (1951) J Appl Psychol , vol.35 , Issue.1 , pp. 46-49
    • Meyer, H.H.1
  • 74
    • 15944428176 scopus 로고    scopus 로고
    • The psychometric properties of five scoring methods applied to the script concordance test
    • Bland AC, et al. The psychometric properties of five scoring methods applied to the script concordance test. Acad Med. 2005;80(4):395-9.
    • (2005) Acad Med , vol.80 , Issue.4 , pp. 395-399
    • Bland, A.C.1
  • 75
    • 0026877917 scopus 로고
    • The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection
    • Ware Jr JE, Sherbourne CD. The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Med Care. 1992;30(6):473-83.
    • (1992) Med Care , vol.30 , Issue.6 , pp. 473-483
    • Ware, J.E.1    Sherbourne, C.D.2
  • 76
    • 0027674811 scopus 로고
    • The RAND 36-Item Health Survey 1.0.
    • Hays RD, et al. The RAND 36-Item Health Survey 1.0. Health Econ. 1993;2(3):217-27.
    • (1993) Health Econ , vol.2 , Issue.3 , pp. 217-227
    • Hays, R.D.1
  • 77
    • 4243062699 scopus 로고    scopus 로고
    • The Medicare Health Outcomes Survey program: overview, context, and near-term prospects
    • Jones N, et al. The Medicare Health Outcomes Survey program: overview, context, and near-term prospects. Health Qual Life Outcomes. 2004;2:33.
    • (2004) Health Qual Life Outcomes , vol.2 , pp. 33
    • Jones, N.1
  • 78
    • 78851469729 scopus 로고    scopus 로고
    • Health-related quality of life in adults with sickle cell disease (SCD): a report from the comprehensive sickle cell centers clinical trial consortium
    • Dampier C, et al. Health-related quality of life in adults with sickle cell disease (SCD): a report from the comprehensive sickle cell centers clinical trial consortium. Am J Hematol. 2011;86(2):203-5.
    • (2011) Am J Hematol , vol.86 , Issue.2 , pp. 203-205
    • Dampier, C.1
  • 79
    • 39149083377 scopus 로고    scopus 로고
    • Depression and anxiety in adults with sickle cell disease: the PiSCES project
    • Levenson JL, et al. Depression and anxiety in adults with sickle cell disease: the PiSCES project. Psychosom Med. 2008;70(2):192-6.
    • (2008) Psychosom Med , vol.70 , Issue.2 , pp. 192-196
    • Levenson, J.L.1
  • 80
    • 77956965736 scopus 로고    scopus 로고
    • Representativeness of the patient-reported outcomes measurement information system internet panel
    • Liu H, et al. Representativeness of the patient-reported outcomes measurement information system internet panel. J Clin Epidemiol. 2010;63(11):1169-78.
    • (2010) J Clin Epidemiol , vol.63 , Issue.11 , pp. 1169-1178
    • Liu, H.1
  • 81
    • 77956946824 scopus 로고    scopus 로고
    • Initial item banks and first wave testing of the Patient-Reported Outcomes Measurement Information System (PROMIS) network: 2005-2008
    • Cella D, et al. Initial item banks and first wave testing of the Patient-Reported Outcomes Measurement Information System (PROMIS) network: 2005-2008. J Clin Epidemiol. 2010;63(11):1169-94.
    • (2010) J Clin Epidemiol , vol.63 , Issue.11 , pp. 1169-1194
    • Cella, D.1
  • 82
    • 33845945922 scopus 로고
    • Coefficient alpha and the internal structure of tests
    • Cronbach L. Coefficient alpha and the internal structure of tests. Psychometrika. 1951;16(3):297-334.
    • (1951) Psychometrika , vol.16 , Issue.3 , pp. 297-334
    • Cronbach, L.1
  • 83
    • 36348992780 scopus 로고    scopus 로고
    • Bonferroni and Šidák corrections for multiple comparisons, in encyclopedia of measurement and statistics
    • Thousand Oaks: Sage
    • Abdi H. Bonferroni and Šidák corrections for multiple comparisons, in encyclopedia of measurement and statistics. Thousand Oaks: Sage; 2007.
    • (2007)
    • Abdi, H.1
  • 84
    • 0021998049 scopus 로고
    • Comparative measurement efficiency and sensitivity of five health status instruments for arthritis research
    • Liang MH, et al. Comparative measurement efficiency and sensitivity of five health status instruments for arthritis research. Arthritis Rheum. 1985;28(5):542-7.
    • (1985) Arthritis Rheum , vol.28 , Issue.5 , pp. 542-547
    • Liang, M.H.1
  • 85
    • 0033127853 scopus 로고    scopus 로고
    • The SF-36 Arthritis-Specific Health Index (ASHI): II. Tests of validity in four clinical trials
    • Keller SD, et al. The SF-36 Arthritis-Specific Health Index (ASHI): II. Tests of validity in four clinical trials. Med Care. 1999;37(5 Suppl):MS51-60.
    • (1999) Med Care , vol.37 , Issue.5 , pp. 51-60
    • Keller, S.D.1
  • 86
    • 0003577917 scopus 로고
    • Statistical power analysis for the behavioral sciences
    • 2nd ed. Hillsdale: Routledge
    • Cohen J. Statistical power analysis for the behavioral sciences. 2nd ed. Hillsdale: Routledge; 1988.
    • (1988)
    • Cohen, J.1
  • 87
    • 0003528130 scopus 로고
    • Psychometric theory
    • 2nd ed. New York: McGraw-Hill Book Company
    • Nunnally JC. Psychometric theory. 2nd ed. New York: McGraw-Hill Book Company; 1967.
    • (1967)
    • Nunnally, J.C.1
  • 88
    • 0037297709 scopus 로고    scopus 로고
    • Starting at the beginning: an introduction to coefficient alpha and internal consistency
    • Streiner DL. Starting at the beginning: an introduction to coefficient alpha and internal consistency. J Pers Assess. 2003;80(1):99-103.
    • (2003) J Pers Assess , vol.80 , Issue.1 , pp. 99-103
    • Streiner, D.L.1
  • 89
    • 84952977198 scopus 로고    scopus 로고
    • Pscyhological testing: principles, applications and issues
    • Eighth ed. Belmont: Wasdworth, Cengage Learning
    • Kaplan RM, Saccuzzo DP. Pscyhological testing: principles, applications and issues. Eighth ed. Belmont: Wasdworth, Cengage Learning; 2013.
    • (2013)
    • Kaplan, R.M.1    Saccuzzo, D.P.2
  • 90
    • 0003528130 scopus 로고
    • Psychometric theory
    • 3rd ed. New York: McGraw-Hill
    • Nunnally JC, Bernstein IH. Psychometric theory. 3rd ed. New York: McGraw-Hill; 1994.
    • (1994)
    • Nunnally, J.C.1    Bernstein, I.H.2
  • 91
    • 77952297450 scopus 로고    scopus 로고
    • Neuropsychological dysfunction and neuroimaging adult sickle cell anemia study group. Neuropsychological dysfunction and neuroimaging abnormalities in neurologically intact adults with sickle cell anemia
    • Vichinsky E, et al. Neuropsychological dysfunction and neuroimaging adult sickle cell anemia study group. Neuropsychological dysfunction and neuroimaging abnormalities in neurologically intact adults with sickle cell anemia. JAMA. 2010;303(18):1823-31.
    • (2010) JAMA , vol.303 , Issue.18 , pp. 1823-1831
    • Vichinsky, E.1
  • 92
    • 84864988793 scopus 로고    scopus 로고
    • Beyond the definitions of the phenotypic complications of sickle cell disease: an update on management
    • Published online 2012 Aug 1
    • Ballas SK, et al. Beyond the definitions of the phenotypic complications of sickle cell disease: an update on management. The Scientific World J. 2012. Published online 2012 Aug 1.
    • (2012) The Scientific World J.
    • Ballas, S.K.1
  • 93
    • 84941216188 scopus 로고    scopus 로고
    • Methodology for the development and calibration of the SCI-QOL item banks
    • Tulsky DS, et al. Methodology for the development and calibration of the SCI-QOL item banks. J Spinal Cord Med. 2015;38(3):270-87.
    • (2015) J Spinal Cord Med , vol.38 , Issue.3 , pp. 270-287
    • Tulsky, D.S.1
  • 94
    • 85019993452 scopus 로고    scopus 로고
    • Disease-specific calibrations or disease-specific content: which is responsible for the enhanced sensitivity of condition-specific measures compared to generic measures?
    • Keller S, Yang M. Disease-specific calibrations or disease-specific content: which is responsible for the enhanced sensitivity of condition-specific measures compared to generic measures? Qual Life Res. 2015;24:25.
    • (2015) Qual Life Res , vol.24 , pp. 25
    • Keller, S.1    Yang, M.2
  • 95
    • 85019989518 scopus 로고    scopus 로고
    • Registry and Surveillance System for Hemoglobinopathies Pilot Project (RuSH)
    • Centers for Disease Control and Prevention. Registry and Surveillance System for Hemoglobinopathies Pilot Project (RuSH). Available from: http://www.cdc.gov/ncbddd/sicklecell/freematerials.html.
  • 96
    • 81055144335 scopus 로고    scopus 로고
    • Neurocognitive testing and functioning in adults sickle cell disease
    • Feliu MH, et al. Neurocognitive testing and functioning in adults sickle cell disease. Hemoglobin. 2011;35(5-6):476-84.
    • (2011) Hemoglobin , vol.35 , Issue.5-6 , pp. 476-484
    • Feliu, M.H.1
  • 97
    • 84864054457 scopus 로고    scopus 로고
    • A PROMIS fatigue short form for use by individuals who have multiple sclerosis
    • Cook KF, et al. A PROMIS fatigue short form for use by individuals who have multiple sclerosis. Qual Life Res. 2012;21(6):1021-30.
    • (2012) Qual Life Res , vol.21 , Issue.6 , pp. 1021-1030
    • Cook, K.F.1
  • 98
    • 84955571307 scopus 로고    scopus 로고
    • The PROMIS FatigueFM Profile: a self-report measure of fatigue for use in fibromyalgia
    • Kratz AL, et al. The PROMIS FatigueFM Profile: a self-report measure of fatigue for use in fibromyalgia. Qual Life Res. 2016;25:1803.
    • (2016) Qual Life Res , vol.25 , pp. 1803
    • Kratz, A.L.1
  • 99
    • 70350540563 scopus 로고    scopus 로고
    • Firestar: computerized adaptive testing simulation program for polytomous item response theory models
    • Choi SW. Firestar: computerized adaptive testing simulation program for polytomous item response theory models. Appl Psychol Measur. 2009;33(8):644.
    • (2009) Appl Psychol Measur , vol.33 , Issue.8 , pp. 644
    • Choi, S.W.1
  • 100
    • 0024852022 scopus 로고
    • Measurement of health status: ascertaining the minimally clinically important difference
    • Jaeschke R, et al. Measurement of health status: ascertaining the minimally clinically important difference. Cont Clin Trials. 1989;10:407-15.
    • (1989) Cont Clin Trials , vol.10 , pp. 407-415
    • Jaeschke, R.1


* 이 정보는 Elsevier사의 SCOPUS DB에서 KISTI가 분석하여 추출한 것입니다.