Assessing the test–retest reliability and smallest detectable change of the Haemophilia Activities List

Abstract

Introduction The Haemophilia Activities List (HAL) is a preferred instrument to measure self‐reported limitations in activities in persons with haemophilia (PWH). Information on reliability and interpretability of HAL scores is lacking. Aim To examine the test‐retest reliability and smallest detectable change (SDC) of the HAL in adult PWH. Methods Fifty adult (≥18 years) persons with mild to severe haemophilia completed the HAL (42 items, 7 domains, optimum 100) at baseline (T0) and 3‐4 weeks later (T1). The intraclass correlation coefficient (ICC) and SDC were calculated for sum and component scores. Results Fifty persons with haemophilia were included (median age 49 years; 92% haemophilia A; 70% severe haemophilia). The median (interquartile ranges) HAL sum score was 77 (62 to 99) at T0 and 81 (64 to 98) at T1. Reliability was good with ICCs for sum and component scores >0.9. The SDC for the sum score was 10.2, for the upper extremity component score 9.2, for the basic lower extremity component score 16.7 and for the complex lower extremity component score 13.4. Conclusion The HAL has a good reliability for the sum and component scores. Score changes of the normalized sum HAL score greater than the SDC 10.2 indicate that the change was not a result of measurement error.

Generic PROMIS item banks in adults with hemophilia for patient‐reported outcome assessment: Feasibility, measurement properties, and relevance

“…The reported floor and ceiling effects for the legacy instruments were comparable to earlier reports of the HAL and SF‐36 in Dutch and Swedish patients with hemophilia. 11 , 12 , 13 The PROMIS T scores (physical function, pain interference, depression, anxiety, participation, and fatigue) in the current study were also comparable to T scores in North American patients with hemophilia, although in North American patients higher correlations were reported between mental health domains and the EQ‐5D‐5L anxiety/depression. 21 In addition, strong correlations were reported between the PROMIS‐29 domains depression and anxiety and the RAND‐36 emotional well‐being domain in the HiN‐6 study, with data collected at the same time point.…”

“…Table 2 presents data on the number of items and floor and ceiling effects of the nine Dutch PROMIS item banks. The mean number of questions answered per CAT item bank varied from 5.2 (range, [3][4][5][6][7][8][9][10][11][12] for satisfaction with participation to 8.7 (range, 5-12) for anxiety.…”

“… 5 Furthermore, the occurrence of floor and ceiling effects, a frequent limitation of the HAL and Short Form‐36 (SF‐36), are minimalized in PROMIS item banks based on item selection over the whole score range. 9 , 11 , 12 , 13 , 14 A large set of PROMIS item banks has been translated and validated in the Dutch general population and several patient populations. 15 , 16 , 17 , 18 However, PROMIS item banks have not yet been validated in adults with hemophilia and were to date seldom applied in hemophilia research projects.…”

Similar sports participation as the general population in Dutch persons with haemophilia; results from a nationwide study

“…Limitations in activities were categorized into ‘no limitations’ (HAL > 89 or pedHAL > 95) and ‘with limitations’ (HAL≤89 or pedHAL≤95), based on the smallest detectable change in the HAL of 10.9 points 25 . For the present analysis, the results of children (6‐11 years of age) and adolescents (12‐17) and were combined to one group (“children”).…”

The SLIM study—Shared medical appointments to change lifestyles of overweight people with haemophilia: A randomized multiple baseline (n‐of‐1) design

“…These points were as follows: (a) 3% reduction for weight, (b) if blood pressure was above 140/90 and got below 140/90, (c) if the Tampa scale score was higher than 37 a decrease in this score below 37, (d) a decrease of 3.4 seconds for the TUG and (e) an increase of 10.21% on the HAL. 26 , 29 , 30 , 31 , 32 …”