Translation, validation and reliability of the functional capacity questionnaire Haemophilia Activities List for haemophilia patients in Brazil

Abstract

Introduction To date, none of the available assessment instruments to evaluate functional abilities for individuals with haemophilia has been translated and validated in Brazil. Aim To translate, and test the construct validity, internal consistency and the reliability of the Haemophilia Activities List (HAL) for the Brazilian population with severe and moderate haemophilia (type A or B) and to investigate differences in the self‐perception of functional abilities in patients adults with haemophilia classified according to the presence of joint bleeding and the performance of orthopaedic surgeries. Methods The translation and transcultural adaptation following the steps: (a) translation; (b) synthesis (consensual version); (c) back‐translation; (d) review by the committee of experts; (e) pretest in the target population; and (f) final version of the instrument. Correlations between HAL scores and the scores of the Health Assessment Questionnaire (HAQ) and Western Ontario and McMaster Universities Osteoarthritis Index (WOMAC) were determined for construct validation. Reliability was tested using the test and retest method, and internal consistency was calculated by Cronbach's α. Results The HAL‐BR was applied to 52 individuals with haemophilia (34.51 ± 12.87 years). The process of translation and cross‐cultural adaptation produced similar versions between the translations A moderate correlation was observed between HAL and the HAQ (r = −0.55) and WOMAC scores (r = −0.58). The reliability was ICC = 0.972, CI (0.917‐0.997) ICC = 0.876, CI (0.631‐0.978) for inter‐ and intra‐examiners. No difference was found in the total HAL score between the groups with and without bleeding. The group subjected to surgery compared to the group of not subjected to surgery presented in the HAL domains worse function in ‘lying down/sitting/kneeling/standing’, ‘self‐care’ and ‘complex lower extremities activities’ as well as in total HAL score. Conclusion The Brazilian version of the HAL was proven to be a valid and reliable evaluation tool for adults with haemophilia in Brazil.

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

“…The ICC values of the present study are similar to previously reported ICC values of 0.87–0.97 in adult PWH in the USA ( n = 158–162), which reported on two questionnaires completed within 2 hours 15 . ICC values (0.66–0.90) were lower in Brazilian PWH ( n = 52) who completed the HAL during interviews (with an interval of 15 days), which is different to individually completing a paper questionnaire in the present study 16 . SEM and SDC values have not been published until now.…”

“…which is different to individually completing a paper questionnaire in the present study. 16 SEM and SDC values have not been published until now.…”

“…15 ICC values (0.66-0.90) were lower in Brazilian PWH (n = 52) who completed the HAL during interviews (with an interval of 15 days), which is different to individually completing a paper questionnaire in the present study. 16 SEM and SDC values have not been published until now.…”

Shortening the Haemophilia Activities List (HAL) from 42 items to 18 items

“…Therefore, the data may not be representative for the entire US population. The HAL scores in the current data (median HAL sum: 65.0) were comparable to HAL scores in PWH from Jamaica (median: 66.1) and Brazil (weighted mean: 66.4), but lower than HAL scores in PWH from the United Kingdom (median: 80) and the Netherlands (median: 96) 18–21 . In Sweden, PWH with a later onset of treatment showed a median HAL sum score of 56, compared to a median of 98 in PWH with early treatment 22 .…”

“…In addition, some items in the domains ‘self‐care’, ‘household tasks’ and ‘leisure activities and sports’ have been reported as inappropriate in Jamaican and Indian studies 5,18 . After the stepwise procedure some of these culturally dependent items were removed, while others were still included in the HAL short (playing games, sports, putting on socks and shoes, going on a holiday [active]) because the items were appropriate for most populations 2,19,23–25 . Based on cross‐cultural validation studies and the current study population, the HAL short includes most relevant and informative items for PWH with access to intensive treatment 2,19,23,24 .…”