Impact of test, risk and diagnostic disclosures in suspected early neurodegenerative disease

Abstract

INTRODUCTION: Early detection of mild cognitive impairment (MCI) is important for offering pragmatic risk reduction advice but also for engaging individuals who may be in the prodromal stages of Alzheimer’s disease in clinical research or pharmacological interventions in the future. However, there is considerable uncertainty around the prognosis of MCI as individuals identified as having MCI may develop dementia, remain stable or revert back to normal cognition. The inherent uncertainty of this condition creates a complex dynamic between the clinicians’ communication of MCI and the patient’s understanding of test, risk and diagnostic disclosures.

AIM: To understand the impact of risk disclosures in the MCI population and to examine whether the way clinical information is communicated to individuals with newly identified MCI could have an effect on the individuals’ clinical outcomes and possibly lead to an altered prognosis.

METHOD: The MCI adjustment study was a mixed methods longitudinal cohort study. Individuals suspected of having MCI were recruited across five memory assessment services in South-East Scotland (Jul 2018 – Jul 2019). Baseline assessments were undertaken prior to diagnostic disclosures and three follow-up visits were conducted over an average of two years after the risk disclosures. The main study employed primarily quantitative methodologies such as linear mixed effects modeling. Study outcomes included changes in cognition and psychological well-being with the explanatory variable individuals’ own subjective rating of their risk disclosure experience as “good” or “not good”. A subset of participants were included in a qualitative study about their experiences of risk disclosure at the memory clinic and clinicians at each of the participating sites were also interviewed about their views on MCI.

RESULTS: A total of 63 participants were recruited into the study, of whom n=38 (60.32%) were women. The mean age was 77.24 (SD=6.76) and mean number of years of education was 12.94 (SD=3.57) across the study. Risk disclosure experiences had no significant associations with cognition, sleep, or psychological well-being scores but a “not good” disclosure experience had an association which was just below the statistically significant cut-off of pDiscussion The findings within the current PhD indicate there may be a link between the subjective patient experience of risk disclosures and impact on psychological outcomes over time. The uncertainty of prognosis may contribute towards a negative disclosure experience and may lead to worse psychological adjustment to illness over time. The findings suggest that individuals referred to memory assessment services seek an intervention to reduce risk of dementia in the early stages of neurodegenerative disease, regardless of whether they considered their disclosure experience as “good” or “not good”. Furthermore, patients may feel anxiety, embarrassment or stigma around memory decline. There is a need for more evidence on long-term adjustment to risk disclosures in the MCI population, focusing on patient centred outcomes.

CONCLUSION: Risk disclosure in the suspected MCI population is characterised by uncertainty and varying levels of psychological adjustment to living with the risk of dementia. Evidence from the current PhD study is used to propose a number of recommendations for implementation in clinical practice. Disclosing diagnostic test results to individuals worried about their cognitive health should aim to promote autonomy and empower individuals to embrace strategies to maintain brain health to improve or sustain functioning for as long as possible. Supporting the individual to cope with uncertainty inherent to MCI should be a central consideration in achieving positive adjustment and emphasis should be placed on long-term adjustment to living with risk of dementia while accounting for individual health literacy levels.