Patient-reported outcomes and joint status across subgroups of US adults with hemophilia with varying characteristics: Results from the Pain, Functional Impairment, and Quality of Life (P-FiQ) study

被引:17
作者
Batt, Katharine [1 ]
Boggio, Lisa [2 ]
Neff, Anne [3 ]
Buckner, Tyler W. [4 ]
Wang, Michael [4 ]
Quon, Doris [5 ]
Witkop, Michelle [6 ]
Recht, Michael [7 ]
Kessler, Craig [8 ]
Iyer, Neeraj N. [9 ]
Cooper, David L. [9 ]
机构
[1] Wake Forest Sch Med, Winston Salem, NC USA
[2] Rush Univ, Med Ctr, Chicago, IL 60612 USA
[3] Cleveland Clin, Cleveland, OH 44106 USA
[4] Univ Colorado, Sch Med, Aurora, CO USA
[5] Orthopaed Inst Children, Orthopaed Hemophilia Treatment Ctr, Los Angeles, CA USA
[6] Natl Hemophilia Fdn, New York, NY USA
[7] Oregon Hlth & Sci Univ, Portland, OR 97201 USA
[8] Georgetown Univ Hosp, Washington, DC 20007 USA
[9] Novo Nordisk Inc, Plainsboro, NJ USA
关键词
coagulation disorders; quality of life; HEALTH SCORE V2.1; INSTRUMENTS; PEOPLE; OPPORTUNITIES; DEMOGRAPHICS; EXPERIENCES; DEPRESSION; VALIDITY; HERO;
D O I
10.1111/ejh.13028
中图分类号
R5 [内科学];
学科分类号
1002 ; 100201 ;
摘要
IntroductionPain and functional impairment associated with joint disease are major problems for people with hemophilia, and impact on health-related quality of life (HRQoL) may vary across groups defined by demographic and treatment-related characteristics. ObjectiveTo evaluate differences in overall HRQoL, pain, function, and joint status between P-FiQ study subgroups. MethodsAdult males with hemophilia and a history of joint pain/bleeding completed a pain history and the patient-reported outcome instruments EQ-5D-5L, Brief Pain Inventory v2 Short Form (BPI), International Physical Activity Questionnaire (IPAQ), and Hemophilia Activities List (HAL); optionally, joint status was assessed (Hemophilia Joint Health Score v2.1 [HJHS]). Scores were analyzed between subgroups across sets of participant characteristics. ResultsA total of 381 adult males with hemophilia were enrolled, with median age of 34years. Worse scores on EQ-5D-5L index, BPI pain severity/interference, HAL overall score, and HJHS were generally associated with being college educated, unemployment, self-reporting both acute and chronic pain, and self-reporting anxiety/depression. ConclusionsMeasures of joint status and HRQoL were consistently lower in participants who had higher educational levels, were unemployed, self-reported having both acute and chronic pain, and self-reported having anxiety/depression. A greater understanding of the association of these factors with disease outcomes may improve individualized patient management.
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页码:14 / 24
页数:11
相关论文
共 24 条
[1]   Distress in patients with bleeding disorders: a single institutional cross-sectional study [J].
Barry, V. ;
Lynch, M. E. ;
Tran, D. Q. ;
Antun, A. ;
Cohen, H. G. ;
DeBalsi, A. ;
Hicks, D. ;
Mattis, S. ;
Ribeiro, M. J. A. ;
Stein, S. F. ;
Truss, C. L. ;
Tyson, K. ;
Kempton, C. L. .
HAEMOPHILIA, 2015, 21 (06) :E456-E464
[2]   Construct validity of patient-reported outcome instruments in US adults with hemophilia: results from the Pain, Functional Impairment, and Quality of life (P-FiQ) study [J].
Batt, Katharine ;
Recht, Michael ;
Cooper, David L. ;
Iyer, Neeraj N. ;
Kempton, Christine L. .
PATIENT PREFERENCE AND ADHERENCE, 2017, 11 :1369-1380
[3]   Known-group validity of patient-reported outcome instruments and hemophilia joint health score v2.1 in US adults with hemophilia: results from the Pain, Functional Impairment, and Quality of life (P-FiQ) study [J].
Buckner, Tyler W. ;
Wang, Michael ;
Cooper, David L. ;
Iyer, Neeraj N. ;
Kempton, Christine L. .
PATIENT PREFERENCE AND ADHERENCE, 2017, 11 :1745-1753
[4]   Challenges of Patient-Reported Outcome Assessment in Hemophilia Care-a State of the Art Review [J].
Bullinger, Monika ;
Globe, Denise ;
Wasserman, Joan ;
Young, Nancy L. ;
von Mackensen, Sylvia .
VALUE IN HEALTH, 2009, 12 (05) :808-820
[5]   Psychological functioning of people living with chronic pain: A meta-analytic review [J].
Burke, Anne L. J. ;
Mathias, Jane L. ;
Denson, Linley A. .
BRITISH JOURNAL OF CLINICAL PSYCHOLOGY, 2015, 54 (03) :345-360
[6]  
Cleeland CS., 2009, BRIEF PAIN INVENTORY
[7]   Impact of mild to severe hemophilia on education and work by US men, women, and caregivers of children with hemophilia B: The Bridging Hemophilia B Experiences, Results and Opportunities into Solutions (B-HERO-S) study [J].
Cutter, Susan ;
Molter, Don ;
Dunn, Spencer ;
Hunter, Susan ;
Peltier, Skye ;
Haugstad, Kimberly ;
Frick, Neil ;
Holot, Natalia ;
Cooper, David L. .
EUROPEAN JOURNAL OF HAEMATOLOGY, 2017, 99 :18-24
[8]   An assessment of the relative influence of pain coping, negative thoughts about pain, and pain acceptance on health-related quality of life among people with hemophilia [J].
Elander, James ;
Robinson, Georgina ;
Mitchell, Kathryn ;
Morris, John .
PAIN, 2009, 145 (1-2) :169-175
[9]   Haemophilia Experiences, Results and Opportunities (HERO) Study: survey methodology and population demographics [J].
Forsyth, A. L. ;
Gregory, M. ;
Nugent, D. ;
Garrido, C. ;
Pilgaard, T. ;
Cooper, D. L. ;
Iorio, A. .
HAEMOPHILIA, 2014, 20 (01) :44-51
[10]   Associations of quality of life, pain, and self-reported arthritis with age, employment, bleed rate, and utilization of hemophilia treatment center and health care provider services: results in adults with hemophilia in the HERO study [J].
Forsyth, Angela L. ;
Witkop, Michelle ;
Lambing, Angela ;
Garrido, Cesar ;
Dunn, Spencer ;
Cooper, David L. ;
Nugent, Diane J. .
PATIENT PREFERENCE AND ADHERENCE, 2015, 9 :1549-1560