A feasibility study on two tailored interventions to improve adherence in adults with haemophilia
Open accessAbstract
Introduction: Haemophilia is a congenital bleeding disorder mainly affecting males. To prevent bleeding, patients need to perform regular intravenous injections (prophylaxis) throughout life. Non-adherence often occurs. Problems with acceptance or self-management appear to be the main reasons for non-adherence in haemophilia. The aim of this study was to test the feasibility and effects of two interventions focussed on acceptance (face-to-face) and self-management (online). Methods: Patients with severe haemophilia and acceptance or self-management problems were eligible. The face-to-face group intervention was based on Acceptance and Commitment Therapy (ACT) (8 sessions/6 months, target N= 8 participants). The online intervention was based on a successful online programme in rheumatoid arthritis (5–8 modules/2 months, target N= 8). Both interventions were designed according to the MRC framework in collaboration with the patient society and experts. We compared adherence (VERITAS-Pro, optimum 0), quality of life (SF-36, optimum 100) and illness perception (BIPQ, optimum 0) before start (T0) and after 2 months (T2). Feasibility criteria were as follows: completion of training by > 50% of participants and ability to collect at least 80% of outcome parameters. Results: The face-to-face intervention was feasible (89% enrolment and recruitment, 100% retention). One hundred percent of the outcome parameters was collected. Results were promising: although adherence (VERITAS-Pro) was stable (from 64 to 62 points), quality of life (SF-36) showed a clinically relevant improvement (> 5 points) in five of eight domains. Illness perception (BIPQ) showed a clinically relevant increase from 47 to 39 points. Patient evaluation was positive. The online intervention, however, was infeasible: enrolment was only 20% (6/30). Only three patients signed informed consent (recruitment 10%), and none completed more than one module (retention 0%). Consequently, the online intervention was terminated. Conclusion: The face-to-face acceptance intervention was considered feasible with promising results. Unfortunately, the online intervention was infeasible and therefore terminated. These findings suggest that adapting effective interventions to other settings does not guarantee success, despite the use of established methodology and patient participation. Population differences (only male participants, congenital disease) could be an explanation for failure of the online intervention in haemophilia despite success in rheumatoid arthritis. Trial registration: NL55883.041.16
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Evidence on ACT for improving adherence to medication is limited to case series among people with diabetes and HIV.
“with evidence limited to case series among people with diabetes and HIV [29, 37, 38].”
From Acceptance and Commitment Therapy to support medication decision-making and quality of life in women with breast cancer: protocol for a pilot randomised controlled trial (2022) · cites this paper as [38]
The Discussion (page not available) says the effect of ACT on adherence is insufficiently demonstrated, supporting the claim that evidence is limited. The Methods section mentions ACT in diabetes and HIV, but our copy does not say that adherence evidence is limited to case series in those populations; it also reports this paper's ACT-based feasibility study in haemophilia. (LLM, conf=0.85)
Experimental — accuracy not yet measuredThe ACTION intervention advances knowledge of ACT as it is among the first programmes to be tested within an RCT to focus on medication decision-making and quality of life.
“The ACTION intervention advances our knowledge of ACT as it is among the first programmes to be tested within an RCT to focus on medication decision-making and quality of life.”
From Acceptance and Commitment Therapy to support medication decision-making and quality of life in women with breast cancer: protocol for a pilot randomised controlled trial (2022) · cites this paper as [38]
The Methods describe an ACT-based haemophilia intervention and name quality of life as an outcome. The Discussion calls it the first ACT-based training in haemophilia, but says an RCT was considered and not used. The paper does not establish that the ACTION intervention was among the first ACT programmes tested in an RCT or that it focused on medication decision-making. (LLM, conf=0.86)
Experimental — accuracy not yet measuredAlthough ACT has been proposed as a means to enhance adherence to treatments, and case series have emerged in recent years, there have been few comprehensive assessments of the approach.
“Although ACT has been proposed as a means to enhance adherence to treatments, and case series have emerged in recent years, there have been few comprehensive assessments of the approach [29, 37, 38].”
From Acceptance and Commitment Therapy to support medication decision-making and quality of life in women with breast cancer: protocol for a pilot randomised controlled trial (2022) · cites this paper as [38]
The Methods describe an ACT-based intervention intended to improve treatment adherence. The Discussion says ACT’s effect on adherence is insufficiently demonstrated and calls for a randomized trial, supporting the point that more rigorous assessment is needed. Our copy does not substantiate the claim that case series have emerged in recent years. (LLM, conf=0.85)
Experimental — accuracy not yet measuredThere are no definitive trials of ACT for improving adherence to medication.
“There are no definitive trials of ACT for improving adherence to medication”
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- Authors
- Hoefnagels, J. W., Fischer, K., Bos, R. A. T., Driessens, M. H. E., Meijer, S. L. A., Schutgens, R. E. G., & Schrijvers, L. H.
- Affiliations
- University Medical Center Utrecht (NL)
- Netherlands Haemophilia Society (NL)
- University of Applied Sciences Utrecht (NL)
- Corresponding author
- Hoefnagels, J. W.
- Venue
- Pilot and Feasibility Studies
- Published
- 2020-12
- Volume
- 6
- Issue
- 1
- Pages
- 189-189
- ISSN
- 2055-5784 (ISSN-L)
- PMC
- PMC7708110
- OpenAlex
- W3109965933
- Cited by
- 24
- References
- 46
- Citations by year
- 2025: 2 · 2024: 12 · 2023: 2 · 2022: 2 · 2021: 5 · 2015: 1
- FWCI
- 1.42
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Locations
- Pilot and Feasibility Studies (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
- Utrecht University Repository (Utrecht University) (submittedVersion, other-oa)
- Funders
- ZonMw (80-83600-98-3095)
- Topics
- Health Sciences › Medicine › Hematology › Hemophilia Treatment and Research
- Health Sciences › Medicine › Family Practice › Medication Adherence and Compliance
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Telemedicine and Telehealth Implementation
- Keywords
- hemophilia, medication adherence, prophylaxis, acceptance and commitment therapy, online intervention, self-management, illness perception, quality of life, feasibility, patient participation, MRC framework, intervention adaptation, patient-centered care
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