Evidence map›Paper›PMID 33040007›Full record

ArticleBMJ open2020

'A sword of Damocles': patient and caregiver beliefs, attitudes and perspectives on presymptomatic testing for autosomal dominant polycystic kidney disease: a focus group study.

Charlotte Logeman, Yeoungjee Cho, Benedicte Sautenet, Gopala K Rangan, Talia Gutman, Jonathan Craig, Albert Ong, Arlene Chapman, Curie Ahn, Helen Coolican and 20 more

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PubMed Full text at PMC Publisher
In one paragraph

Article in BMJ open, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 9 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
9citing papers in PubMed, 1 pooled it
–field-weighted citation impact
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

9 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Guideline
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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

30 authors.

Charlotte LogemanSchool of Public Health, The University of Sydney, Sydney, New South Wales, Australia charlotte.logeman@sydney.edu.au.ORCID 0000-0002-8773-1003
Yeoungjee ChoAustralasian Kidney Trials Network, University of Queensland at Princess Alexandra Hospital, Brisbane, Queensland, Australia.
Benedicte SautenetDepartment of Nephrology Hypertension, Centre Hospitalier Régional Universitaire de Tours, Tours, France.
Gopala K RanganCentre for Transplant and Renal Research, The Westmead Institute for Medical Research, Sydney, New South Wales, Australia.
Talia GutmanSchool of Public Health, The University of Sydney, Sydney, New South Wales, Australia.
Jonathan CraigCollege of Medicine and Public Health, Flinders University Faculty of Medicine, Nursing and Health Sciences, Adelaide, South Australia, Australia.
Albert OngAcademic Nephrology Unit, The Henry Wellcome Laboratories for Medical Research, University of Sheffield Medical School, Sheffield, UK.
Arlene ChapmanDepartment of Medicine, University of Chicago, Chicago, Illinois, USA.
Curie AhnInternal Medicine, Seoul National University, Seoul, South Korea.ORCID 0000-0001-7033-1102
Helen CoolicanHead Office, Polycystic Kidney Disease Foundation of Australia, Sydney, New South Wales, Australia.
Juliana Tze-Wah KaoSchool of Medicine, Fu Jen Catholic University Hospital, New Taipei City, Taiwan.
Ron T GansevoortFaculty of Medical Sciences, University Medical Center Groningen, Groningen, The Netherlands.
Ronald PerroneDivision of Nephrology, Tufts University School of Medicine, Boston, Massachusetts, USA.
Tess HarrisHead Office, PKD International, Geneva, Switzerland.
Vincent TorresDepartment of Nephrology and Hypertension, Mayo Clinic, Rochester, New York, USA.
Kevin FowlerKidney Health Initiative, The Voice of the Patient, Washington, DC, USA.
York PeiDivisions of Nephrology and Genomic Medicine, University of Toronto, Toronto, Ontario, Canada.
Peter KerrNephrology, Monash Medical Centre Clayton, Melbourne, Victoria, Australia.
Jessica RyanNephrology, Monash Medical Centre Clayton, Melbourne, Victoria, Australia.
David JohnsonDepartment of Renal Medicine, Princess Alexandra Hospital, Woolloongabba, Queensland, Australia.
Andrea ViecelliAustralasian Kidney Trials Network, University of Queensland at Princess Alexandra Hospital, Brisbane, Queensland, Australia.
Clair GenesteDepartment of Nephrology and Clinical Immunology, Centre Hospitalier Régional Universitaire de Tours, Tours, France.
Hyunsuk KimInternal Medicine, Seoul National University Hospital, Jongno-gu, South Korea.
Yaerim KimDepartment of Internal Medicine, Keimyung University College of Medicine, Daegu, South Korea.
Martin HowellCentre for Kidney Research, The Children's Hospital at Westmead, Westmead, New South Wales, Australia.ORCID 0000-0001-9740-712X
Angela JuSchool of Public Health, The University of Sydney, Sydney, New South Wales, Australia.
Karine E ManeraSchool of Public Health, The University of Sydney, Sydney, New South Wales, Australia.
Armando Teixeira-PintoSchool of Public Health, The University of Sydney, Sydney, New South Wales, Australia.
Gayathri ParasivamDiscipline of Genetic Medicine, The University of Sydney Medical School, Sydney, New South Wales, Australia.
Allison TongSchool of Public Health, The University of Sydney, Sydney, New South Wales, Australia.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

BACKGROUND AND

objectivesPresymptomatic testing is available for early diagnosis of hereditary autosomal dominant polycystic kidney disease (ADPKD). However, the complex ethical and psychosocial implications can make decision-making challenging and require an understanding of patients' values, goals and priorities. This study aims to describe patient and caregiver beliefs and expectations regarding presymptomatic testing for ADPKD. DESIGN, SETTING AND

participants154 participants (120 patients and 34 caregivers) aged 18 years and over from eight centres in Australia, France and Korea participated in 17 focus groups. Transcripts were analysed thematically.

resultsWe identified five themes:

conclusionsFor patients with ADPKD, presymptomatic testing provides an opportunity to take ownership of their health through family planning and preventive measures. However, these decisions can be wrought with tensions and uncertainty about prognostic implications, and the psychosocial and financial burden of testing. Healthcare professionals should focus on genetic counselling, mental health and providing education to patients' families to support informed decision-making. Policymakers should consider the cost burden and risk of discrimination when informing government policies. Finally, patients are recommended to focus on self-care from an early age.

Indexed as

CaregiversPolycystic Kidney, Autosomal DominantAdolescentAdultAttitudeAustraliaFocus GroupsFranceHumansQuality of LifeRepublic of Koreageneticsmedical education & trainingmental healthnephrologypaediatric nephrology

Identifiers

PMID33040007
PMCPMC7549480

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC
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.