Impact of pain and functional impairment in US adults with haemophilia: Patient-reported outcomes and musculoskeletal evaluation in the pain, functional impairment and quality of life (P-FiQ) study

C. L. Kempton, Michael Recht, A. Neff, M. Wang, T. W. Buckner, A. Soni, D. Quon, M. Witkop, L. Boggio, R. Z. Gut, D. L. Cooper

Research output: Contribution to journalArticle

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Abstract

Introduction: Standardized and disease-specific patient-reported outcome (PRO) instruments assessing pain, functional impairment and health-related quality of life (HRQoL) in people with haemophilia (PWH) have been used in studies, but infrequently in comprehensive care settings for individual assessment or treatment planning. Aim: To assess the impact of pain and functional impairment on HRQoL in PWH. Methods: P-FiQ enrolled 381 adult PWH with a history of joint pain/bleeding and included 5 PROs and a clinical joint evaluation (Hemophilia Joint Health Score v2.1 [HJHS]). Results: Median age was 34 years; 49.9% reported a history of joint procedure or surgery. On EQ-5D-5L, most reported problems with mobility (61.4%), usual activities (53.2%) and pain/discomfort (76.1%). On Brief Pain Inventory v2 Short Form, median worst pain (range 0-10) was 6, least pain 1, average pain 3 and current pain 2. Ankles were most frequently reported as the most painful joints (37.4%), followed by knees (23.7%) and elbows (18.9%). On International Physical Activity Questionnaire, 51% reported no activity in the prior week. On SF-36v2 health survey, median subscores were worse for 4 physical health domains vs 4 mental health domains. Among Hemophilia Activities List domains (range 0 [worst]-100 [best]), functions of the legs (median, 66.7) and lying/sitting/kneeling/standing (median, 67.5) were most impacted and self-care least impacted (median, 100.0). On HJHS, ankle scores (median, 6.0; range, 0-40) were worse than elbow/knee scores (median, 4.0/4.0). Results were consistent across PROs/HJHS. Conclusion: Data demonstrate challenges of predominantly ankle/knee pain and lower extremity functional impairment in US adult PWH, affecting HRQoL across PROs/HJHS.

Original languageEnglish (US)
Pages (from-to)261-270
Number of pages10
JournalHaemophilia
Volume24
Issue number2
DOIs
StatePublished - Mar 1 2018

Fingerprint

Hemophilia A
Quality of Life
Pain
Joints
Ankle
Health
Knee
Elbow
Patient Reported Outcome Measures
Arthralgia
Self Care
Health Surveys
Lower Extremity
Leg
Mental Health
Hemorrhage
Equipment and Supplies

Keywords

  • functional impairment
  • haemophilia
  • joint health
  • pain
  • patient-reported outcome
  • quality of life

ASJC Scopus subject areas

  • Hematology
  • Genetics(clinical)

Cite this

Impact of pain and functional impairment in US adults with haemophilia : Patient-reported outcomes and musculoskeletal evaluation in the pain, functional impairment and quality of life (P-FiQ) study. / Kempton, C. L.; Recht, Michael; Neff, A.; Wang, M.; Buckner, T. W.; Soni, A.; Quon, D.; Witkop, M.; Boggio, L.; Gut, R. Z.; Cooper, D. L.

In: Haemophilia, Vol. 24, No. 2, 01.03.2018, p. 261-270.

Research output: Contribution to journalArticle

Kempton, C. L. ; Recht, Michael ; Neff, A. ; Wang, M. ; Buckner, T. W. ; Soni, A. ; Quon, D. ; Witkop, M. ; Boggio, L. ; Gut, R. Z. ; Cooper, D. L. / Impact of pain and functional impairment in US adults with haemophilia : Patient-reported outcomes and musculoskeletal evaluation in the pain, functional impairment and quality of life (P-FiQ) study. In: Haemophilia. 2018 ; Vol. 24, No. 2. pp. 261-270.
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abstract = "Introduction: Standardized and disease-specific patient-reported outcome (PRO) instruments assessing pain, functional impairment and health-related quality of life (HRQoL) in people with haemophilia (PWH) have been used in studies, but infrequently in comprehensive care settings for individual assessment or treatment planning. Aim: To assess the impact of pain and functional impairment on HRQoL in PWH. Methods: P-FiQ enrolled 381 adult PWH with a history of joint pain/bleeding and included 5 PROs and a clinical joint evaluation (Hemophilia Joint Health Score v2.1 [HJHS]). Results: Median age was 34 years; 49.9{\%} reported a history of joint procedure or surgery. On EQ-5D-5L, most reported problems with mobility (61.4{\%}), usual activities (53.2{\%}) and pain/discomfort (76.1{\%}). On Brief Pain Inventory v2 Short Form, median worst pain (range 0-10) was 6, least pain 1, average pain 3 and current pain 2. Ankles were most frequently reported as the most painful joints (37.4{\%}), followed by knees (23.7{\%}) and elbows (18.9{\%}). On International Physical Activity Questionnaire, 51{\%} reported no activity in the prior week. On SF-36v2 health survey, median subscores were worse for 4 physical health domains vs 4 mental health domains. Among Hemophilia Activities List domains (range 0 [worst]-100 [best]), functions of the legs (median, 66.7) and lying/sitting/kneeling/standing (median, 67.5) were most impacted and self-care least impacted (median, 100.0). On HJHS, ankle scores (median, 6.0; range, 0-40) were worse than elbow/knee scores (median, 4.0/4.0). Results were consistent across PROs/HJHS. Conclusion: Data demonstrate challenges of predominantly ankle/knee pain and lower extremity functional impairment in US adult PWH, affecting HRQoL across PROs/HJHS.",
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T1 - Impact of pain and functional impairment in US adults with haemophilia

T2 - Patient-reported outcomes and musculoskeletal evaluation in the pain, functional impairment and quality of life (P-FiQ) study

AU - Kempton, C. L.

AU - Recht, Michael

AU - Neff, A.

AU - Wang, M.

AU - Buckner, T. W.

AU - Soni, A.

AU - Quon, D.

AU - Witkop, M.

AU - Boggio, L.

AU - Gut, R. Z.

AU - Cooper, D. L.

PY - 2018/3/1

Y1 - 2018/3/1

N2 - Introduction: Standardized and disease-specific patient-reported outcome (PRO) instruments assessing pain, functional impairment and health-related quality of life (HRQoL) in people with haemophilia (PWH) have been used in studies, but infrequently in comprehensive care settings for individual assessment or treatment planning. Aim: To assess the impact of pain and functional impairment on HRQoL in PWH. Methods: P-FiQ enrolled 381 adult PWH with a history of joint pain/bleeding and included 5 PROs and a clinical joint evaluation (Hemophilia Joint Health Score v2.1 [HJHS]). Results: Median age was 34 years; 49.9% reported a history of joint procedure or surgery. On EQ-5D-5L, most reported problems with mobility (61.4%), usual activities (53.2%) and pain/discomfort (76.1%). On Brief Pain Inventory v2 Short Form, median worst pain (range 0-10) was 6, least pain 1, average pain 3 and current pain 2. Ankles were most frequently reported as the most painful joints (37.4%), followed by knees (23.7%) and elbows (18.9%). On International Physical Activity Questionnaire, 51% reported no activity in the prior week. On SF-36v2 health survey, median subscores were worse for 4 physical health domains vs 4 mental health domains. Among Hemophilia Activities List domains (range 0 [worst]-100 [best]), functions of the legs (median, 66.7) and lying/sitting/kneeling/standing (median, 67.5) were most impacted and self-care least impacted (median, 100.0). On HJHS, ankle scores (median, 6.0; range, 0-40) were worse than elbow/knee scores (median, 4.0/4.0). Results were consistent across PROs/HJHS. Conclusion: Data demonstrate challenges of predominantly ankle/knee pain and lower extremity functional impairment in US adult PWH, affecting HRQoL across PROs/HJHS.

AB - Introduction: Standardized and disease-specific patient-reported outcome (PRO) instruments assessing pain, functional impairment and health-related quality of life (HRQoL) in people with haemophilia (PWH) have been used in studies, but infrequently in comprehensive care settings for individual assessment or treatment planning. Aim: To assess the impact of pain and functional impairment on HRQoL in PWH. Methods: P-FiQ enrolled 381 adult PWH with a history of joint pain/bleeding and included 5 PROs and a clinical joint evaluation (Hemophilia Joint Health Score v2.1 [HJHS]). Results: Median age was 34 years; 49.9% reported a history of joint procedure or surgery. On EQ-5D-5L, most reported problems with mobility (61.4%), usual activities (53.2%) and pain/discomfort (76.1%). On Brief Pain Inventory v2 Short Form, median worst pain (range 0-10) was 6, least pain 1, average pain 3 and current pain 2. Ankles were most frequently reported as the most painful joints (37.4%), followed by knees (23.7%) and elbows (18.9%). On International Physical Activity Questionnaire, 51% reported no activity in the prior week. On SF-36v2 health survey, median subscores were worse for 4 physical health domains vs 4 mental health domains. Among Hemophilia Activities List domains (range 0 [worst]-100 [best]), functions of the legs (median, 66.7) and lying/sitting/kneeling/standing (median, 67.5) were most impacted and self-care least impacted (median, 100.0). On HJHS, ankle scores (median, 6.0; range, 0-40) were worse than elbow/knee scores (median, 4.0/4.0). Results were consistent across PROs/HJHS. Conclusion: Data demonstrate challenges of predominantly ankle/knee pain and lower extremity functional impairment in US adult PWH, affecting HRQoL across PROs/HJHS.

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KW - haemophilia

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KW - patient-reported outcome

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