Research Article: Communicating about overdiagnosis: Learning from community focus groups on osteoporosis

Date Published: February 3, 2017

Publisher: Public Library of Science

Author(s): Ray Moynihan, Rebecca Sims, Jolyn Hersch, Rae Thomas, Paul Glasziou, Kirsten McCaffery, Bart O. Williams.

http://doi.org/10.1371/journal.pone.0170142

Abstract

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.

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.

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.

Partial Text

Overdiagnosis is increasingly recognised as a significant source of harm and waste within healthcare systems, and there are growing global initiatives to combat it [1]. Overdiagnosis happens when people are given a diagnosis for a disease that will never harm them. It can lead to unnecessary tests and treatments that may carry harms to the patient and may also divert health resources away from treating and preventing genuine illness. The problem has technological, commercial and cultural causes, and is commonly associated with cancers diagnosed as a result of screening healthy people [2]. An inquiry in the United Kingdom has estimated, for instance, that perhaps 1 in 5 cancers diagnosed via mammography screening may never cause women harm [3].

Forty-one women aged 50–80 from a range of educational backgrounds participated in five focus groups, each containing between seven and nine women, with participant characteristics in Table 1. Women were almost entirely from English-speaking backgrounds, a phenomenon reflecting the demographics of the Gold Coast community [25]. Of the 65 potential participants recruited initially, 24 did not participate in a focus group, with reasons including: unable to be contacted (n = 8); work commitments (n = 5); unable to attend scheduled times (n = 3); and, no explanation (n = 8). Despite the recruitment organisation excluding women who reported a diagnosis of osteoporosis during initial recruitment, (in response to a question about whether they had ever had a diagnosis of osteoporosis), in written demographic questions after the focus groups had commenced five women reported having a current and/or a previous diagnosis, though we found no meaningful differences between the comments of these participants and the rest of the group.

Our aim in this study was not to educate participants, but rather to learn more about how to communicate about overdiagnosis for a non-cancer condition for which the definition automatically labels many people who won’t experience harm as “diseased”. Osteoporosis offered a strong example, given professional awareness, from its inception [5], that a proportion of those diagnosed with this “disease” would not have symptoms, as well as more recent explicit concern about its overdiagnosis [2,4] and overtreatment with osteoporosis medications [33,34]. The findings suggest a need to better communicate about the arbitrary and controversial nature of some disease thresholds, as well as underscoring the need to reform the way they are set. It is also important to convey that early diagnosis is a double-edged sword because tests and diagnoses, like treatments, can have serious downstream harms. Ultimately, information about overdiagnosis might be framed optimally as positive knowledge that can help people take control of their health. (Box 2) Further research in this field will develop and evaluate materials and approaches to effectively inform people about overdiagnosis.

 

Source:

http://doi.org/10.1371/journal.pone.0170142