PhenX Measures: Physical Activity Frailty and Falling Barbara Konkle 4.18
Physical Activity • Existing Measures – Many require physical activity that could be impacted by joint disease – Disability index proprietary for leg/back – Impairment - psychological functioning – Sitting-sedentary – very detailed – Total physical activity – too detailed
Physical Activity – Existing Measures to Consider • Physical Activity (IPAQ) • Total Physical Activity Screener • Physical Functioning – Subjective (NHANES) • Physical Activity Self-Efficacy – Adolescent Protocol • (Physical Activity Self-Efficacy – Adult Protocol) • Body Mass Index
Hemophilia Activities List • The HAL measures the impact of hemophilia on self- perceived functional abilities in adults . • It contains 42 multiple choice questions in seven domains: – Lying/sitting/kneeling/standing (8 items) – Functions of the legs (9 items) – Functions of the arms (4 items) – Use of transportation (3 items) – Self-care (5 items) – Household tasks (6 items) – Leisure activities and sports (7 items) Van Generen FR et al, Haemophilia 2006;12:36-46. Timmer et al, Haemophilia 2018;24:e33-e49.
PedHAL • The PedHAL should be selected to measure the impact of hemophilia on self-perceived functional abilities in children. • The current version (0.11) consists of 53 items in seven domains: – Sitting/kneeling/standing (10 items) – Functions of the legs (11 items) – Functions of the arms (6 items) – Use of transportation (3 items) – Self care (9 items) – Household tasks (3 items) – Leisure activities and sports (11 items) – A parent/proxy (age 4-8) and child version (8-18) was constructed with some minor linguistic differences (see questionnaires, above). Groen WG, et al. Haemophilia 2010; 16(2):281-9. Timmer et al, Haemophilia 2018;24:e33-e49
Functional Independence Score for Patients with Hemophilia (FISH) • Measures difficulty in performing – Eating – Grooming – Bathing – Dressing – Chair Transfer – Squatting – Walking Pattern – Stair Climbing – Running Poonoose et al, Haemophilia 2006;11:598-602. Timmer et al, Haemophilia 2018;24:e33-e49.
Frailty/Fall: Existing Measures • Fracture history – too detailed and too much on hip fracture • Balance/one leg – too variable in hemophilia 1 – Impact of joint disease • Arthritis/Osteoarthritis – too X-ray based and focus on osteoarthritis common targets • Spine and Femur DEXA – too female oriented • Muscle strength – hand grip probably not relevant 1 Stephensen D et al, Haemophilia 2016;22:e512-e518.
Frailty/Fall to Consider - If we want- • Timed Up & Go (TUG) 1,2 – Time to rise from a chair, walk 3 meters, turn around, walk back to the chair, turn around and sit back down. – Takes little time to administer and high inter-rater reliability – 87% sensitivity and specificity – In small hemophilia study (n=75 > 40 yrs) differentiated between multiple fallers and non-fallers 3 1 Shumway-Cook A et al, Predicting the probability for falls in community-dwelling older adults using the Timed UP & Go Test. Phys. Ther. 200;80:896-903. 2 Perell KL et al. Fall risk assessment measures: an analytic review. J Gerontol 2001;56A:M761-M766. 3 Sammels M. Falling and fall risk factors in adults with haemophilia: an exploratory study. Haemophilia 2014;20:836-45.
Male Osteoporosis/ Bone Density • Male Osteoporosis Risk Estimation Score (MORES) 1 – Used risk factor data from the NHANES Survey III to develop a best fitting multivariable logistic regression model in men >50 years • Development cohort (1,497) • Validation cohort (1,498) – But used traditional risk factors which would not take into account effect of FVIII • DXA scan (male emphasis or expand for both males and females) – Has been used to assess bone density in hemophila 1 Shepherd AJ et al, Ann Fam Med 2007;5:540-6.
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