Abstract Number: PB0947
Meeting: ISTH 2020 Congress
Theme: Hemophilia and Rare Bleeding Disorders » Hemophilia - Clinical
Background: The haemoprefer questionnaire is newly developed tool introduced to potentially measure the ease of use and preference for treatment of people with haemophilia (PWH). Haemoprefer was part of a battery of Patient reported outcomes (PRO) used in the UK EHL registry.
Aims: To describe levels of satisfaction for patients on the UK EHL registry.
Methods: Informed consent and ethics committee approval were obtained. Haemoprefer assesses the following;
1) Global Score – scored 0 to 140 – Higher scores indicating greater patient preference and treatment satisfaction.
2) Ease of Using CFC – scored 0 to 40 – Higher scores indicate greater ease of use.
3) Burden of clotting factor treatment – scores range from 0 to 20 – Higher scores indicate lower burden of treatment.
4) Impact of clotting factor treatment – scored 0 to 30 – Higher scores indicate less negative impact on daily life.
5) Risk associated with clotting factor treatment – scored 0 to 30 – Higher scores indicate lower levels of worry associated with treatment.
6) Influence of others on treatment choices – scored 0 to 20 – Higher scores indicate greater importance of the opinions or behaviour of others.
Results: Haemoprefer was evaluable at study entry for 136 patients with 77 on the EHL CFC arm pre EHL switch and 59 on Standard CFC.
At follow up 77 patients on the EHL arm returned 159 questionnaires evaluable for analysis and with a median follow up of 12 months (range 3 – 30 months).
Conclusions: Haemoprefer has been used for the first time in prospective study and its sensitivity and specificity for identifying items of interest for both patients and clinicians in routine clinical practice need to be determined.
| Score | Scoring Range | EHL Arm – Median | EHL Arm – IQR | EHL Arm – Min | EHL Arm – Max | Standard CFC Arm – Median | Standard CFC Arm – IQR | Standard CFC Arm – Min | Standard CFC Arm – Max |
| Global Score | 0 – 140 | 104 | 92 – 114 | 59 | 133 | 100 | 88 – 112 | 40 | 124 |
| Ease of Using CFC | 0 – 40 | 37 | 32 – 40 | 15 | 40 | 34 | 29 – 38 | 11 | 40 |
| Burden of clotting factor treatment | 0 – 20 | 12 | 10 – 16 | 0 | 20 | 14 | 11 – 17 | 0 | 20 |
| Impact of clotting factor treatment | 0 – 30 | 25 | 19 – 28 | 7 | 30 | 22 | 17 – 27 | 0 | 30 |
| Risk associated with clotting factor treatment | 0 – 30 | 26 | 21 – 30 | 4 | 30 | 24 | 20 – 29 | 0 | 30 |
| Influence of others on treatment choices | 0 – 20 | 7 | 2 – 10 | 0 | 20 | 5 | 1 – 9 | 0 | 20 |
[Baseline Scores at Study Entry Pre EHL Switch (n=136)]
| Score | Scoring Range | Median | IQR | Min | Max |
| Global Score | 0 – 140 | 110 | 97 – 119 | 60 | 140 |
| Ease of Using CFC | 0 – 40 | 38 | 34 – 40 | 13 | 40 |
| Burden of clotting factor treatment | 0 – 20 | 15 | 13 – 18 | 2 | 20 |
| Impact of clotting factor treatment | 0 – 30 | 25 | 21 – 28 | 7 | 30 |
| Risk associated with clotting factor treatment | 0 – 30 | 27 | 24 – 30 | 0 | 30 |
| Influence of others on treatment choices | 0 – 20 | 7 | 2 – 10 | 0 | 20 |
[Table 2. Follow up scores – EHL CFC arm only (n=159)]
To cite this abstract in AMA style:
Chowdary P, Shapiro S, Hanif Z, Chadwick N, Tait C, Mathias M, Mangles S, Evans G, Myers B, Beech D, Makris M, Talks K, Austin S, Collins P, Chalmers E, Phillips E, Motwani J, Dolan G, Hay C, Hart D. UK EHL Registry: Patient Reported Outcomes Measured by Haemoprefer Patient Treatment Preference and Perception Tool [abstract]. Res Pract Thromb Haemost. 2020; 4 (Suppl 1). https://abstracts.isth.org/abstract/uk-ehl-registry-patient-reported-outcomes-measured-by-haemoprefer-patient-treatment-preference-and-perception-tool/. Accessed October 2, 2023.« Back to ISTH 2020 Congress
ISTH Congress Abstracts - https://abstracts.isth.org/abstract/uk-ehl-registry-patient-reported-outcomes-measured-by-haemoprefer-patient-treatment-preference-and-perception-tool/