Communicating about overdiagnosis: Learning from community focus groups on osteoporosis.

BACKGROUND:Overdiagnosis is considered a risk associated with the diagnosis of osteoporosis-as many people diagnosed won't experience harm from the condition. As yet there's little evidence on community understanding of overdiagnosis outside cancer- where it is an established risk of some...

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Main Authors: Ray Moynihan, Rebecca Sims, Jolyn Hersch, Rae Thomas, Paul Glasziou, Kirsten McCaffery
Format: Article
Language:English
Published: Public Library of Science (PLoS) 2017-01-01
Series:PLoS ONE
Online Access:http://europepmc.org/articles/PMC5291414?pdf=render
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author Ray Moynihan
Rebecca Sims
Jolyn Hersch
Rae Thomas
Paul Glasziou
Kirsten McCaffery
author_facet Ray Moynihan
Rebecca Sims
Jolyn Hersch
Rae Thomas
Paul Glasziou
Kirsten McCaffery
author_sort Ray Moynihan
collection DOAJ
description BACKGROUND:Overdiagnosis is considered a risk associated with the diagnosis of osteoporosis-as many people diagnosed won't experience harm from the condition. As yet there's little evidence on community understanding of overdiagnosis outside cancer- where it is an established risk of some screening programs-or effective ways to communicate about it. We examined community understanding around overdiagnosis of osteoporosis, to optimise communication strategies about this problem. METHODS AND FINDINGS:Using a qualitative design we recruited a community sample of women, 50-80 years, from the Gold Coast community around Bond University, Australia, using random digit dialing, and conducted 5 focus groups with 41 women. A discussion guide and 4-part presentation were developed and piloted, with independent review from a consumer and clinical experts. Initial discussion had 4 segments: osteoporosis; bone density vs. other risk factors; medication; and overdiagnosis. The second half included the 4 short presentations and discussions on each. Analysis used Framework Analysis method. Initially participants described osteoporosis as bone degeneration causing some fear, demonstrated imprecise understanding of overdiagnosis, had a view osteoporosis couldn't be overdiagnosed as bone scans provided "clear cut" results, expressed belief in early diagnosis, and interest in prevention strategies enabling control. Following presentations, participants expressed some understanding of overdiagnosis, preference for describing osteoporosis as a "risk factor" not "disease", concern about a poor risk-benefit ratio for medications, and surprise and unease the definition of osteoporosis decided bone density of young women was "normal", without age adjustment. Limitations include English-speaking backgrounds of the sample and complex materials. CONCLUSIONS:Our findings suggest a gap between community expectations and how experts sometimes arbitrarily set low diagnostic thresholds which label those at risk as "diseased". Optimal communication about overdiagnosis could build on community scepticism about treatments, encouraging weighing up benefits and harms of tests and diagnoses, and framing this information as positively adding to knowledge.
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spelling doaj.art-119b274f78b74bb6a191b80c9394b41c2022-12-21T19:28:29ZengPublic Library of Science (PLoS)PLoS ONE1932-62032017-01-01122e017014210.1371/journal.pone.0170142Communicating about overdiagnosis: Learning from community focus groups on osteoporosis.Ray MoynihanRebecca SimsJolyn HerschRae ThomasPaul GlasziouKirsten McCafferyBACKGROUND:Overdiagnosis is considered a risk associated with the diagnosis of osteoporosis-as many people diagnosed won't experience harm from the condition. As yet there's little evidence on community understanding of overdiagnosis outside cancer- where it is an established risk of some screening programs-or effective ways to communicate about it. We examined community understanding around overdiagnosis of osteoporosis, to optimise communication strategies about this problem. METHODS AND FINDINGS:Using a qualitative design we recruited a community sample of women, 50-80 years, from the Gold Coast community around Bond University, Australia, using random digit dialing, and conducted 5 focus groups with 41 women. A discussion guide and 4-part presentation were developed and piloted, with independent review from a consumer and clinical experts. Initial discussion had 4 segments: osteoporosis; bone density vs. other risk factors; medication; and overdiagnosis. The second half included the 4 short presentations and discussions on each. Analysis used Framework Analysis method. Initially participants described osteoporosis as bone degeneration causing some fear, demonstrated imprecise understanding of overdiagnosis, had a view osteoporosis couldn't be overdiagnosed as bone scans provided "clear cut" results, expressed belief in early diagnosis, and interest in prevention strategies enabling control. Following presentations, participants expressed some understanding of overdiagnosis, preference for describing osteoporosis as a "risk factor" not "disease", concern about a poor risk-benefit ratio for medications, and surprise and unease the definition of osteoporosis decided bone density of young women was "normal", without age adjustment. Limitations include English-speaking backgrounds of the sample and complex materials. CONCLUSIONS:Our findings suggest a gap between community expectations and how experts sometimes arbitrarily set low diagnostic thresholds which label those at risk as "diseased". Optimal communication about overdiagnosis could build on community scepticism about treatments, encouraging weighing up benefits and harms of tests and diagnoses, and framing this information as positively adding to knowledge.http://europepmc.org/articles/PMC5291414?pdf=render
spellingShingle Ray Moynihan
Rebecca Sims
Jolyn Hersch
Rae Thomas
Paul Glasziou
Kirsten McCaffery
Communicating about overdiagnosis: Learning from community focus groups on osteoporosis.
PLoS ONE
title Communicating about overdiagnosis: Learning from community focus groups on osteoporosis.
title_full Communicating about overdiagnosis: Learning from community focus groups on osteoporosis.
title_fullStr Communicating about overdiagnosis: Learning from community focus groups on osteoporosis.
title_full_unstemmed Communicating about overdiagnosis: Learning from community focus groups on osteoporosis.
title_short Communicating about overdiagnosis: Learning from community focus groups on osteoporosis.
title_sort communicating about overdiagnosis learning from community focus groups on osteoporosis
url http://europepmc.org/articles/PMC5291414?pdf=render
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