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Patients experience shame and isolation for deciding not to pursue thyroid cancer treatment
Clinical Question
What is the experience of people who have an incidental thyroid finding but choose not to pursue any intervention?
Bottom line
Overdiagnosis—the identification of an abnormality not destined to harm an individual—has been linked to many screenings, especially for breast cancer and prostate cancer. Screening for thyroid cancer, too, provides a classic example of overdiagnosis: Despite rampant increases in identification of thyroid nodules, death rates due to thyroid cancer have not changed. In this study, highly educated patients who decided not to have further intervention for a thyroid incidentaloma felt shamed by their friends and health professionals for not pursuing treatment. 4
Reference
Study design: Descriptive
Funding: Foundation
Setting: Outpatient (specialty)
Synopsis
By age 50 years, half the US population will have at least one thyroid nodule; by age 90, almost 100% will have at least one. However, most of these nodules will be benign, and finding and treating these nodules does not provide any benefit to patients. These researchers conducted interviews with 18 people who had been told they had a thyroid nodule but had declined further intervention. The interviews were designed to determine major concepts and themes On average, the interviews occurred 3 years after the patients were told of the findings. Most of the participants (73%) were women, all had at least some college education, and more than half (55%) had a graduate degree. The patients could quote chapter and verse from the medical literature, yet were called "stupid," "wrong," or "crazy" by medical professionals and others. Most of the interviewees (15 of the 18) resorted to not telling anyone else about the finding to avoid this type of response (one patient described untreated cancer as a "scarlet letter," as in the book by Hawthorne). Twelve people expressed prominent anxiety about cancer progression. Five of the 18 participants discontinued surveillance because of cost, because they were "actively pursuing denial," or because of their negative experiences with the health care system over their choice not to treat. Despite their decision not to have further intervention, 6 were glad to have been told about the nodule.
Reviewer
Allen F. Shaughnessy, PharmD, MMedEd
Professor of Family Medicine
Tufts University
Boston, MA
Comments
Good poem
Le fait que les patients se sentent mal par les commentaires des professionnels de ne pas poursuivre les investigations pour un nodule est dérangeant surtout que cela affectera notre lien de confiance qui est parfois long à se faire.
Cost is not a problem in Canada.
At what point were they told that they had cancer? Not all thyroid nodules are cancerous
This is definitely NOT my experience (maybe it’s a Canadian thing where healthcare is “free” and dollars are wasted on unnecessary testing and “Pateints first” inn Ontario get what they want) patients want full investigation and treatment and follow-up up the yin-yang despite evidence!
In neurosurgery there is benign meningioma incidental intracranial aneurysm small non progressive acoustic neuroma asymptomatic spinal stenosis these patient come for surgery they are scared but ready , It may take 1 hour to explain the patient that these finding need follow up but no surgery, It may take long time to convince patient but when they are convinced and they are sure that they will be a regular follow up they are quite happy , I don't feel these patients are upset or isolated ,
but in pt with chronic nonspecific pain when they see norma mri they get disappointed and upset , The key is to talk about management of chronic pain especially by patient need long time need to give patient resources to study gradually patient need to self treatment rather than being dependent to therapist and so on but in same time patient should have easy accesses to treating DR either by phone or visit to office I never ask chronic pain patient should get a new referral they take longtime in office and long time to improve but when they do and respect they have to you is rewarding
I chair a forum in our community for old & retired GPs. Issues like this one come forward for ourselves as the group ages. We see intervention harms from this perspective. I’m grateful you have drought this up
This is another reminder of the human factor in medicine on both side- the doctor and the patient. The art of respecting , accepting and adopting a balanced approach is a necessary yet delicate lesson for the health professionals.
Not a nice comment on the system; rather, not a nice comment on practitioners if the blame game is truly being played as these particular patients did feel. Harassment is as the "harasee" perceives, not as the "harasser" denies, is it not?
Fascinating !
Excellent
A nothing "study" with no reproducibility and even less validity. Looks like someone is being pressured to" publish or perish. "