Evidence map›Paper›PMID 33960588›Full record

ArticleHaemophilia : the official journal of the World Federation of Hemophilia2021

A tailored intervention for illness acceptance improves adherence and quality of life in adults with haemophilia using prophylaxis.

Johanna Wilhelmina Hoefnagels, Kathelijn Fischer, Ruud A T Bos, Mariette H E Driessens, Liesbeth H Schrijvers

Open access · hybridAbstract read
In one paragraph

Article in Haemophilia : the official journal of the World Federation of Hemophilia, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
0.6field-weighted citation impact, top 33% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

1 citing paper in PubMed, 5 citations in OpenAlex.

  1. Adherence to Clotting Factor Prophylaxis in Adolescent and Adult Males With Haemophilia.Haemophilia : the official journal of the World Federation of Hemophilia
    Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

5 authors at 3 institutions in 1 country.

Johanna Wilhelmina HoefnagelsVan Creveldkliniek, University Medical Center Utrecht, Utrecht, The Netherlands.ORCID https://orcid.org/0000-0001-6847-2977
Kathelijn FischerVan Creveldkliniek, University Medical Center Utrecht, Utrecht, The Netherlands.ORCID https://orcid.org/0000-0001-7126-6613
Ruud A T BosVan Creveldkliniek, University Medical Center Utrecht, Utrecht, The Netherlands.
Mariette H E DriessensDutch Association for Haemophilia Patients (NVHP), Nijkerk, The Netherlands.
Liesbeth H SchrijversInstitute for Nursing Studies, Utrecht University of Applied Sciences, Utrecht, The Netherlands.
University Medical Center Utrecht · NLNederlandse Vereniging voor Kindergeneeskunde · NLUniversity of Applied Sciences Utrecht · NL

Funding

ZonMw 80-83600-98-3095
6 · The paper itself

Abstract

introductionAdherence to prophylactic treatment (prophylaxis) in persons with haemophilia is challenging and has been reported at only ±50%. Acceptance problems are one of the main reasons for non-adherence in haemophilia. An evidence-based intervention was developed based on an acceptance and commitment therapy (ACT) approach.

aimTo evaluate a tailored intervention focused on illness acceptance in adults with haemophilia who were prescribed prophylaxis.

methodsA pre-post study was executed in adults with haemophilia who were prescribed prophylaxis. A series of 8 2-hour group trainings were held, including 3-8 participants/series. Adherence (VERITAS-Pro, optimum 0), health-related quality of life (HRQoL, SF-36, optimum 100) and illness perception (BIPQ, optimum 0) were measured at start, after six months and 12 months and analysed using Wilcoxon signed-rank test.

resultsTwenty-four patients (median age 47 years, range 27-74) were included. After 12 months, adherence improved in 68% of patients, quality of life in 48% and illness perception in 31%. Adherence (total score) improved from 35 to 25 (P<0.01). HRQoL showed clinically relevant improvement in domains of social-functioning (P = 0.04), role-emotional, physical-functioning, role-physical and bodily pain. Illness perception improved statistically significant on domains of affect (P = 0.01), concern (P = 0.01) and understanding (P = 0.04). Patients evaluated the training useful, an eye-opener, a personal enrichment and insightful.

conclusionThe tailored group intervention resulted in significant improvement of adherence, quality of life and illness perception. Based on our current experience, we have implemented it in clinical practice and collaborate with the patient association to make it available for all Dutch people with haemophilia.

Indexed as

Acceptance and Commitment TherapyHemophilia AAdultAgedHumansMiddle AgedQuality of Lifeadherencehaemophiliaillness acceptanceinterventionquality of life

Identifiers

PMID33960588
PMCPMC8360197
OpenAlexW3157572866

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC-ND
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.