Dataset Information

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

ABSTRACT:

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.

SUBMITTER: Moynihan R

PROVIDER: S-EPMC5291414 | biostudies-literature | 2017

REPOSITORIES: biostudies-literature

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Publications

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

Moynihan Ray R Sims Rebecca R Hersch Jolyn J Thomas Rae R Glasziou Paul P McCaffery Kirsten K

PloS one 20170203 2

<h4>Background</h4>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.<h4>Method ...[more]

PMID: 28158214

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Project description:BackgroundDespite evidence about the "modern epidemic" of overdiagnosis, and expanding disease definitions that medicalize more people, data are lacking on public views about these issues. Our objective was to measure public perceptions about overdiagnosis and views about financial ties of panels setting disease definitions.MethodsWe conducted a 15 minute Computer Assisted Telephone Interview with a randomly selected community sample of 500 Australians in January 2014. We iteratively developed and piloted a questionnaire, with a convenience sample (n=20), then with participants recruited by a research company (n=20). Questions included whether respondents had been informed about overdiagnosis; opinions on informing people; and views about financial ties among panels writing disease definitions.FindingsOur sample was generally representative, but included a higher proportion of females and seniors, typical of similar surveys. American Association for Public Opinion Research response rate was 20% and cooperation rate was 44%. Only 10% (95% CI 8%-13%) of people reported ever being told about overdiagnosis by a doctor. 18% (95% CI 11%-28%) of men who reported having prostate cancer screening, and 10% (95% CI 6%-15%) of women who reported having mammography said they were told about overdiagnosis. 93% (95% CI 90%-95%) agreed along with screening benefits, people should be informed about overdiagnosis. On panels setting disease definitions, 78% (95% CI 74%-82%) felt ties to pharmaceutical companies inappropriate, and 91% (95% CI 82%-100%) believed panels should have a minority or no members with ties. Limitations included questionnaire novelty and complexity.ConclusionsA small minority of Australians surveyed, including those reporting being screened for prostate or breast cancer, reported being informed of overdiagnosis; most believed people should be informed; and a majority felt it inappropriate that doctors with ties to pharmaceutical companies write disease definitions. Results suggest strategies to better inform people about overdiagnosis, and review disease definition processes, have significant public sympathy.

Project description:BackgroundOsteoporosis affects over 200 million people worldwide, and represents a significant cost burden. Although guidelines are available for best practice in osteoporosis, evidence indicates that patients are not receiving appropriate diagnostic testing or treatment according to guidelines. The use of clinical decision support systems (CDSSs) may be one solution because they can facilitate knowledge translation by providing high-quality evidence at the point of care. Findings from a systematic review of osteoporosis interventions and consultation with clinical and human factors engineering experts were used to develop a conceptual model of an osteoporosis tool. We conducted a qualitative study of focus groups to better understand physicians' perceptions of CDSSs and to transform the conceptual osteoporosis tool into a functional prototype that can support clinical decision making in osteoporosis disease management at the point of care.MethodsThe conceptual design of the osteoporosis tool was tested in 4 progressive focus groups with family physicians and general internists. An iterative strategy was used to qualitatively explore the experiences of physicians with CDSSs; and to find out what features, functions, and evidence should be included in a working prototype. Focus groups were conducted using a semi-structured interview guide using an iterative process where results of the first focus group informed changes to the questions for subsequent focus groups and to the conceptual tool design. Transcripts were transcribed verbatim and analyzed using grounded theory methodology.ResultsOf the 3 broad categories of themes that were identified, major barriers related to the accuracy and feasibility of extracting bone mineral density test results and medications from the risk assessment questionnaire; using an electronic input device such as a Tablet PC in the waiting room; and the importance of including well-balanced information in the patient education component of the osteoporosis tool. Suggestions for modifying the tool included the addition of a percentile graph showing patients' 10-year risk for osteoporosis or fractures, and ensuring that the tool takes no more than 5 minutes to complete.ConclusionsFocus group data revealed the facilitators and barriers to using the osteoporosis tool at the point of care so that it can be optimized to aid physicians in their clinical decision making.

Project description:IntroductionThe Food and Drug Administration (FDA) selected six text-only warnings for cigarillos to be implemented on packaging and advertising. Pictorial warnings are more effective at discouraging cigarette use than text-only warnings, yet no research exists for cigarillos. We sought to understand what types of images might be most effectively paired with the cigarillo text warnings to inform broad principles for developing pictorial warnings, with a focus on young adults, who have the highest rate of cigarillo use.MethodsWe conducted five focus groups with a total of N = 30 young adult cigarillo users and susceptible nonusers (53% female, 50% White, and 33% Black). Participants were shown four to eight unique images for each of the six text statements and were asked about visual-verbal congruency, emotional and cognitive reactions, and perceived effectiveness of each image. Sessions were recorded and transcribed; two investigators independently coded transcripts for emergent themes.ResultsParticipants reported images that were graphic or "gross" would best grab attention and discourage use of cigarillos. Participants preferred images that were a direct illustration of the information in the warning text, rather than abstract images that required more cognitive effort to understand. Participants also highlighted that including people in the images, especially youth and young adults making eye contact, helped them relate to the warnings, garner their attention, and positively influence their reactions.ConclusionsWe identified several principles to inform the selection of images to pair with the FDA-required cigarillo text statements. These insights may also apply to pictorial warnings for other tobacco products.ImplicationsThis focus group study identified principles for selecting images to develop pictorial warnings for the six FDA text-only cigarillo warnings. We found that young adult cigarillo users and susceptible nonusers preferred images that were graphic and gross, believable, congruent to the warning text, and included people. Images that match young adults' visual expectations of a disease and are emotion-provoking may be most effective in pictorial warnings and highlight challenges for developing pictorial warnings for health effects that do not have a visible health consequence.

Project description:BACKGROUND:In Northern Nigeria, short birth interval is common. The word kunika in the Hausa language describes a woman becoming pregnant before weaning her last child. A sizeable literature confirms an association between short birth interval and adverse perinatal and maternal health outcomes. Yet there are few reported studies about how people view short birth interval and its consequences. In support of culturally safe child spacing in Bauchi State, in North East Nigeria, we explored local perspectives about kunika and its consequences. METHODS:A qualitative descriptive study included 12 gender-segregated focus groups facilitated by local men and women in six communities from the Toro Local Government Area in Bauchi State. Facilitators conducted the groups in the Hausa language and translated the reports of the discussions into English. After an inductive thematic analysis, the local research team reviewed and agreed the themes in a member-checking exercise. RESULTS:Some 49 women and 48 men participated in the 12 focus groups, with an average of eight people in each group. All participants were married with ages ranging from 15 to 45?years. They explained their understanding of kunika, often in terms of pregnancy while breastfeeding. They described many disadvantages of kunika, including health complications for the mother and children, economic consequences, and adverse impact on men's health and family dynamics. The groups concluded that some people still practise kunika, either intentionally (for example, in order to increase family size or because of competition between co-wives) or unintentionally (for example, because of frequent unprotected sex), and explained the roles of men and women in this. CONCLUSION:Men and women in our study had a clear understanding of the concept of kunika. They recognized many adverse consequences of kunika beyond the narrow health concerns reported in quantitative studies. Their highlighted impacts of kunika on men's wellbeing can inform initiatives promoting the role of men in addressing kunika.

Dataset Information

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

Background

Methods and findings

Conclusions

Publications

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

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