COSMIN database

Clinimetric instruments to assess functional health status in patients with haemophilia: a literature review

De Kleijn, P., Heijnen, L., and Van Meeteren, N. L.
The World Federation of Hemophilia scoring system (WFH-1) evaluates primarily body functions and structures, whereas assessment of the whole area of functional health status is considered nowadays to be a better measure. In addition, the WFH-1 lacks psychometric properties (reliability, validity and sensitivity to change). This study aimed to gain insight into the clinimetric assessment of functional health status in patients with haemophilia by way of a systematic literature search. A standardized literature search and selection was performed on the databases of CINAHL (1982-2001), Medline (1966-2001), and PubMed (January-July 2001). Clinimetric instruments applied in the selected articles were classified based on the international classification of functioning, disability, and health (ICF) and analysed for their psychometric properties. In 19 articles published between 1979 and 2001, 34 clinimetric instruments were used to assess functional health status. Instruments were classified as measuring the ICF components body structure and function (n = 17), activities (12) and participation (4). Reliability was measured in four articles on three different instruments, the validity (construct) of the instruments for patients with haemophilia was reported in six articles on five instruments, and sensitivity to change in three articles on three instruments. The populations under study varied in number (7-9 35), mean age (21.6-50.8 years), and in the distribution of haemophilia severity. Reports on the evaluation of functional health status in patients with haemophilia are increasing. Further research on the psychometric properties of the instruments is warranted in more groups of patients with haemophilia. Development of the new core set of clinimetric instruments, the WFH-2, might benefit from this strategy.
1351-8216 (Print)
Publication year:
Biological and physiological variables:
Biological and physiological variables
Symptom status:
Physical state
Functional status:
Physical functioning
Role functioning
General health perceptions / HRQoL:
Self-rated health
Overall quality of life:
Overall quality of life
Adults (18-65)
Seniors (65+)
Diseases of and symptoms related to the blood and blood-forming organs and certain disorders involving the immune mechanism
PRO / non-PRO:
Non-patient Reported Outcome
Patient Reported Outcome
Type of measurement instrument:
1 - Questionnaires
2 - Interviews
6 - Clinical rating scales
AIMS2 - Arthritis Impact Measurement Scales 2   
AIMS - Arthritis Impact Measurement Scales (versions; sAIMS; shortened AIMS)
Arc of Motion - Arc–aggregation method
COPM - Canadian Occupational Performance Measure   
CSQ - Coping Strategies Questionnaire
D-AIMS-2 - Dutch Arthitis Impact and Measurement Scales-
Dutch Self-Assessment Questionnaire
Educational level (four-category classification)
EQ-5D - EuroQoL-5 Dimensions   
FFI - Foot Function Index
Goniometry / Goniometer   
Handheld Pull Gauge
HAQ - Health Assessment Questionnaire (versions:MHAQ - Modified HAQ; HAQ-II)   
Heart Rate Counting
HHD - Hand-Held Dynamometer (Hand-held dynamometry with pulley force sensor)   
HSS - Hospital for Special Surgery (versions: HSS-1 - Modified; HSS-2; HSS-SV; HSS-shoulder; HSS-knee)
JAM - Joint Alignment and Motion Scale
Joint Impairment Score
KSS - Kneescore of the Knee Society / Knee Society Score (versions: KSSm; New-KSS)
Kyushu Rosai Hospital ADL Chart
MHLC - Multidimensional Health Locus of Control Scale   
MPQ - McGill Pain Questionnaire (versions MPQ-SF)    
Occupational level (Occupational Guide)
OECD - Organization for Economic Co-operation and Development
PRF-E - Personality Research Form E
SDL - Satisfaction in Daily Life
SEC - Social Experiences Checklist
SF-12 - 12-item Short Form Health Survey [alias: RAND-12]
SF-36 - 36-item Short Form Health Survey [alias: RAND-36][alias: Medical Outcomes Study (MOS) SF-36]]    |  | also see:
SIP - Sickness Impact Profile (versions: SIP-8; SIP-68; SIP-136; SIP-SV; UKSIP)   
Skin Temperature Measurement
Tension Ratings
VAS - Visual Analogue Scale (versions: vertical; horizontal)   
WOMAC - Western Ontario and McMaster Universities Osteoarthritis Index (versions: Individualized WOMAC; WOMAC-Likert Scale; WOMACsf; WOMAC-12)