Label with care

  • Rebecca Sims

Student thesis: Doctoral Thesis

Abstract

Background
Diagnosis of physical and psychological health conditions is increasing in prevalence. Further, widening disease definitions classify more individuals, with less severe symptoms, as unwell. Diagnostic labelling can provide explanation for symptoms and access to services; however, it can also reduce psychological wellbeing, modify self-perceptions, and alter how others view the labelled individual. Much of the existing research on the impacts of diagnostic labelling has focused on cancer conditions. There is a general lack of awareness about the consequences of diagnostic labelling for non-cancer conditions, including whether these consequences should be discussed prior to screening tests.

Aims
The aim of this thesis was to examine the impact of non-cancer diagnostic labelling and determine whether current diagnostic labelling practices require re-evaluation and modification to minimise potential harms and maximise benefits. Three research themes were examined: 1) to explore the impact of a diagnostic label on education and wellbeing in children; 2) to synthesise the research evidence for the consequences of diagnostic labelling; and 3) to explore the perceived value of discussing the consequences of diagnostic labelling in clinical encounters.

Methods and Results
Five interrelated studies were conducted using a variety of quantitative and qualitative research methods. StudiesĀ 1 and 2 used existing longitudinal data, collected as part of the Longitudinal Study of Australian Children, to examine the impact of an autism spectrum disorder (ASD) diagnostic label on education and wellbeing outcomes. Children with parent-reported ASD were compared across diagnostic severities (i.e., mild, moderate/severe) and children with mild-ASD compared with non-diagnosed matched peers using descriptive statistics and generalised estimating equations. Study 1 found children with parent-reported mild-ASD (n = 175), compared with moderate/severe-ASD (n = 96), demonstrated statistically significant better functioning across all measured education and wellbeing outcomes. Study 2 found that children with parent-reported mild-ASD (n = 132) demonstrated lower functioning across writing achievement and all wellbeing outcomes compared with non-diagnosed matched peers (n = 396). While this finding was statistically significant it is unlikely to reach the threshold of being clinically meaningful. No differences were found for numeracy and reading. Following these studies, a protocol for synthesis of existing qualitative and quantitative research regarding the consequences of diagnostic labelling was developed and published to allow for transparency in the review process. Following feedback from a multidisciplinary research collaboration, the review was divided into qualitative (Study 3) and quantitative (Study 4) research. Study 3, a systematic scoping review of qualitative research, collated evidence from 97 primary studies and reviews and developed a framework of consequences of diagnostic labelling relevant to four perspectives: individuals, families and caregivers, healthcare professionals, and community members. The developed framework consisted of five overarching themes, each with several subthemes: psychosocial impact (e.g., positive/negative psychological impact, social- and self-identity, stigma), support (e.g., increased/reduced, relationship changes, professional interactions), future planning (i.e., action and uncertainty), behaviour (i.e., beneficial/detrimental modification), and treatment expectations (i.e., positive/negative experiences).Study 4, a systematic review of quantitative research, aimed to quantify the short- and longer-term psychological (i.e., anxiety, depression, general mental health) and behavioural (i.e., absenteeism) consequences of receiving, or not receiving, a diagnostic label following asymptomatic non-cancer screening. Studies of asymptomatic screening were included because they provided opportunity to disentangle the impact of condition symptoms from the diagnostic label. Sixteen studies were included. For individuals who received a diagnostic label, anxiety increased from the non-clinical to clinical range immediately after receiving a diagnostic label and was significantly higher compared with individuals who did not receive a diagnostic label (mean difference = -7.28, 95%CI -12.85 to -1.71). In the longer-term, anxiety returned to the non-clinical range for individuals who received a diagnostic label. No significant immediate or longer-term differences were found for depression or general mental health. Absenteeism did not significantly differ from the year prior to the year following screening.Study 5 applied the evidence collated from studies 3 and 4 to explore general practitioners (GPs) and health consumers perceptions of the value of discussing potential impacts of diagnostic labelling prior to routine non-cancer screening. Eleven semi-structured interviews with GPs and two focus groups with eight health consumers were completed. We used an inductive and iterative thematic approach to analyse transcripts. Most GPs do not discuss the potential impacts of diagnostic labelling prior to routine screening and no consumers recalled such conversations occurring in their healthcare (except in pregnancy). Despite discussions regarding potential impacts of diagnostic labelling not occurring, many GPs and consumers thought these would be beneficial. Six overarching themes supported these preferences: patient empowerment; patient variability; condition specific information; GP and patient interactions and relationship; GP role and responsibilities; and characteristics of non-cancer screening. GP and consumer preferences varied regarding whether discussions occurred before screening or after a health condition was identified and there is a need to tailor the provision of information to the individual.

Conclusions and Implications
The findings of these studies highlight diversity in impacts of diagnostic labelling and how they might be mitigated. Key findings include: 1) writing abilities and wellbeing outcomes differed slightly between children diagnosed with mild-ASD and non-diagnosed matched peers, but differences may not be clinically meaningful; 2) the impacts of diagnostic labelling are broad and manifest differently for individuals, families and caregivers, healthcare professionals, and community members, but anxiety immediately following diagnostic labelling is often a consequence; and 3) conversations between GPs and consumers about possible impacts of diagnostic labelling are generally seen as positive, but when and how the discussions should occur is influenced by individual preferences. Results suggest current diagnostic labelling practices require re-evaluation and modification to minimise the potential harms and maximise the potential benefits. Additional research across individual, healthcare professional, health systems, and societal contexts is required. This research should examine whether developing, implementing, and continually evaluating approaches for decision making prior to and following diagnostic labelling in diverse diagnostic contexts can facilitate labelling with care.
Date of Award2024
Original languageEnglish
SupervisorRae Thomas (Supervisor), Zoe Michaleff (Supervisor) & Paul Glasziou (Supervisor)

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