Evidence map›Paper›PMID 32271985›Full record

SynthesisJournal of thrombosis and haemostasis : JTH2020

The experiences and attitudes of hemophilia carriers around pregnancy: A qualitative systematic review.

Marieke C Punt, Tanja H Aalders, Kitty W M Bloemenkamp, Mariette H E Driessens, Kathelijn Fischer, Marlies H Schrijvers, Karin P M van Galen

Open access · hybridAbstract readSystematic Review
In one paragraph

Synthesis in Journal of thrombosis and haemostasis : JTH, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
14citing papers in PubMed, 1 pooled it
1.8field-weighted citation impact, top 13% 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

14 citing papers in PubMed, 1 synthesis or guideline pooled it, 24 citations in OpenAlex.

  1. Pooled it
  2. Hemophilia's Overlooked Female Face.Journal of clinical medicine · 2026
    Review
  3. Article
  4. Article
  5. Article
  6. Article
  7. Review
  8. Article
  9. Review
  10. Management of pregnant female with Haemophilia-A: A case report.Journal of family medicine and primary care · 2022
    Article
  11. A qualitative study on the experiences of haemophilia carriers before, during and after pregnancy.Haemophilia : the official journal of the World Federation of Hemophilia · 2021
    Article
  12. Managing women-specific bleeding in inherited bleeding disorders: A multidisciplinary approach.Haemophilia : the official journal of the World Federation of Hemophilia · 2021
    Article
  13. Review
  14. 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

7 authors at 3 institutions in 1 country.

Marieke C PuntVan Creveldkliniek, University Medical Center Utrecht, University Utrecht, Utrecht, The Netherlands.ORCID 0000-0002-1891-5255
Tanja H AaldersVan Creveldkliniek, University Medical Center Utrecht, University Utrecht, Utrecht, The Netherlands.
Kitty W M BloemenkampDepartment of Obstetrics, Birth Centre Wilhelmina's Children Hospital, Division Woman and Baby, University Medical Centre Utrecht, University of Utrecht, Utrecht, The Netherlands.
Mariette H E DriessensNetherlands Hemophilia Patient Society, Nijkerk, The Netherlands.
Kathelijn FischerVan Creveldkliniek, University Medical Center Utrecht, University Utrecht, Utrecht, The Netherlands.
Marlies H SchrijversVan Creveldkliniek, University Medical Center Utrecht, University Utrecht, Utrecht, The Netherlands.
Karin P M van GalenVan Creveldkliniek, University Medical Center Utrecht, University Utrecht, Utrecht, The Netherlands.
Utrecht University · NLDutch Cancer Society · NLUniversity of Applied Sciences Utrecht · NL

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundHemophilia carriers (HCs) face specific psychosocial challenges related to pregnancy, caused by their inherited bleeding disorder. Optimal support from healthcare providers can only be realized by exploring medical and psychological healthcare requirements.

objectiveTo review all published evidence on the experiences and attitudes of HCs regarding reproductive decision-making, prenatal diagnosis, pregnancy, childbirth, and puerperium to provide an accessible overview of this information for health care providers. STUDY SELECTION: Cochrane library, PubMed/MEDLINE, EMBASE, CINAHL, and PsycINFO were searched for original qualitative data. Two authors performed study selection, risk-of-bias assessment, data extraction, and data analysis through meta-summary. The extracted themes were discussed within the research team.

findingsFifteen studies with an overall moderate quality were included. The following findings were identified: (a) Quality of life of family members with hemophilia influences reproductive decision-making; (b) Genetic counselling is generally considered useful; (c) The development of a specialized carrier clinic is considered valuable; (d) HCs describe prenatal diagnosis as beneficial yet psychosocially challenging; and (e) noninvasive prenatal diagnosis and preimplantation genetic diagnosis are predominantly considered beneficial. These findings are limited by the overall moderate quality of included studies and the possibly partly outdated results in the current era of hemophilia treatment.

conclusionsAvailable qualitative literature on HCs around pregnancy focuses on genetic counselling and prenatal diagnosis. Future studies are needed on the experiences and needs of HCs through pregnancy and puerperium as well as in light of emerging hemophilia diagnosis and treatment options.

Indexed as

Hemophilia AAttitudeFemaleGenetic CounselingHumansPregnancyQualitative ResearchQuality of LifeHemophilia AHemophilia Binherited blood coagulation disordersqualitative researchreproductionsystematic reviewvon Willebrand Diseases

Identifiers

PMID32271985
PMCPMC7383726
OpenAlexW3016133345

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.