Consequences of a Diagnostic Label: A Systematic Scoping Review and Thematic Framework

Abstract

Objectives: To develop a thematic framework for the range of consequences arising from a diagnostic label from an individual, family/caregiver, healthcare professional, and community perspective.Design: Systematic scoping review of qualitative studies.Search Strategy: We searched PubMed, Embase, PsycINFO, Cochrane, and CINAHL for primary studies and syntheses of primary studies that explore the consequences of labelling non-cancer diagnoses. Reference lists of included studies were screened, and forward citation searches undertaken.Study Selection: We included peer reviewed publications describing the perceived consequences for individuals labelled with a non-cancer diagnostic label from four perspectives: that of the individual, their family/caregiver, healthcare professional and/or community members. We excluded studies using hypothetical scenarios.Data Extraction and Synthesis: Data extraction used a three-staged process: one third was used to develop a preliminary framework, the next third for framework validation, and the final third coded if thematic saturation was not achieved. Author themes and supporting quotes were extracted, and analysed from the perspective of individual, family/caregiver, healthcare professional, or community member.Results: After deduplication, searches identified 7,379 unique articles. Following screening, 146 articles, consisting of 128 primary studies and 18 reviews, were included. The developed framework consisted of five overarching themes relevant to the four perspectives: psychosocial impact (e.g., positive/negative psychological impact, social- and self-identity, stigma), support (e.g., increased, decreased, relationship changes, professional interactions), future planning (e.g., action and uncertainty), behaviour (e.g., beneficial or detrimental modifications), and treatment expectations (e.g., positive/negative experiences). Perspectives of individuals were most frequently reported.Conclusions: This review developed and validated a framework of five domains of consequences following diagnostic labelling. Further research is required to test the external validity and acceptability of the framework for individuals and their family/caregiver, healthcare professionals, and community.

International Survey of Specialist Fetal Alcohol Spectrum Disorder Diagnostic Clinics: Comparison of Diagnostic Approach and Considerations Regarding the Potential for Unification

“…Accurate and timely diagnosis of FASD is imperative to inform clinical care, as well as for research and prevention strategies. It is essential to consider the implications for over and under diagnoses of FASD when considering a future universal approach [ 31 ]. Differences between current criteria, introduction of new criteria, and adaptation of existing methods all have the potential to cause significant harms and burdens to patients diagnosed, their families, healthcare systems, and research outcomes [ 18 ].…”

Too Much, Too Mild, Too Early: Diagnosing the Excessive Expansion of Diagnoses

“…In order to avoid too much diagnosis , we must prevent labelling phenomena that cannot be clearly connected to human pain, dysfunction, or suffering with medical diagnostic labels as labelling can have a wide range of negative effects. 36 Hence, we may do more harm than good. Moreover, we must be careful with applying medical labels where medical means are not helpful compared to other approaches.…”

“…In such cases we need to reflect on why we need medical instead of non-medical categories, as they can do more harm than good. 36 …”

“…In such cases we need to reflect on why we need medical instead of non-medical categories, as they can do more harm than good. 36 Correspondingly, we must stop diagnosing conditions that are too mild to be of any relevance in terms of reducing pain, dysfunction, or suffering. The point is not to abandon all preventive measures, but only that we must avoid lowering diagnostic thresholds beyond what is helpful to persons.…”

Association of Attention-Deficit/Hyperactivity Disorder Diagnosis With Adolescent Quality of Life

“…5,6 It is unclear how much of the negative outcomes associated with ADHD in children can be attributed to impairment resulting from the condition itself and how much is due to the labeling effect of the ADHD diagnosis. 7 H/I behaviors exist on a spectrum and correlate positively with impairment in domains, such as academic performance or socioemotional problems. 8 Reducing them (eg, through treatment) can lead to some improvements in these domains.…”