Apart from key factors, such as attempts to reduce poverty and bring about positive lifestyle changes, enhancement of individual and community health status also depends to a significant extent on the availability of affordable and high quality health care services. Periodically, this newsletter serves as a vehicle for identifying instances where more improvements are necessary. Depending on which health professions are involved and types of diseases, deficiencies in nomenclature can play an important role in affecting health care quality.
An article by Peterson et al in the December 2023 issue of the journal JAMA Neurology discusses how nomenclature in the field of neurodegenerative diseases presents a challenging problem. The authors note that inconsistent use of terms such as Alzheimer disease and dementia has compromised progress in clinical care, research, and development of therapeutics. Dementia-associated stigma further contributes to inconsistent and imprecise language. The result is a lack of clarity that produces confusion with patients and the general public, and presents communication challenges among researchers.
Thus, the Advisory Council on Research, Care, and Services of the National Plan to Address Alzheimer’s Disease authorized a committee to make recommendations for improvement. This Dementia Nomenclature Initiative established a framework to guide communication about cognitive impairment among older adults. Wider testing and refinement of the framework subsequently will improve the information used in communicating about cognitive impairment and the way in which the information is used in clinical, research, and public settings.
Unfortunately, disagreements can occur that impair an ability to arrive at easy and timely remedies in areas that are controversial. In an article by Nyame and colleagues in the November 2023 issue of the Journal of the National Cancer Institute on the topic of putting patients first to redefine prostate cancer classifications, the debate over removing the cancer designation for low-grade prostate cancer has taken center-stage recently. Proponents of a name change for grade group 1 (GG1) prostate cancer cite 1) extremely low rates of progression, metastasis, and death; 2) patient anxiety related to having a cancer diagnosis; and 3) the harms of overdiagnosis and overtreatment as reasons to remove the cancer label from GG1 prostate cancer.
Opponents of this name change point to the fact that 1) although less common, patients with GG1 cancers can demonstrate extraprostatic extension, metastases, and recurrence following treatment; 2) GG1 cancers meet the histologic definition of a cancer (i,e,, loss of the basement membrane); and 3) the name change may lead to adverse oncologic outcomes if any of the 25% to 50% of patients with prostate cancer reclassification are lost to follow-up because of removal of the cancer label. A related concern is that a cancer label induces anxiety and fear of cancer progression that may be impervious to even the best clinician’s counseling.