Implementation of a diagnostic decision aid for people with memory complaints and their general practitioners: a protocol of a before and after pilot trial

Abstract

IntroductionResearchers, policy-makers and healthcare professionals often stress the importance of an early dementia diagnosis. Empirical evidence, however, is scarce leading to a lack of consensus on the necessity of diagnosing dementia early. We emphasise the need for a ‘timely’ diagnosis, that is, one that occurs at the right moment for a person with memory complaints and his/her significant other. As the optimal timing differs between individuals, the implementation of shared decision making (SDM), preferably by the general practitioner (GP), as the start of a diagnostic trajectory, could help to determine this timely moment. SDM, however, is rarely practised with respect to dementia diagnoses. Therefore, in the context of the Shared Decision-Making regarding Dementia Diagnosis project, a patient decision aid (PtDA) for ‘timely’ dementia diagnosis in general practice will be developed. This protocol will describe the planned before and after evaluation of its implementation.Methods and analysisIn a mixed-methods pilot study, we will investigate decision-making processes and experiences regarding a diagnostic trajectory before and after the introduction of a PtDA for people with memory complaints, their significant others and their GPs. The ‘before group’ will receive diagnostics as usual from their GPs. The ‘after group’ will use the PtDA. We expect the PtDA to increase the level of SDM and to contribute to a timely and personalised diagnostic trajectory. Data will be collected using semistructured interviews, questionnaires and information retrieved from people with memory complaints’ medical records.Ethics and disseminationThis study protocol was approved by the Medical Review Ethics Committee of the Maastricht University Medical Centre. The findings will be published in peer-reviewed international journals and presented at conferences. This study was funded by the public funded Dutch Research Institute for Care and Medical Sciences (ZonMw).Trial registration numberNCT04531956.

The expectations and experiences of patients regarding the diagnostic workup at a specialized memory clinic: An interview study

“…30 Both general practitioners as well as memory clinic physicians could play an important role in facilitating the process of shared decision making, 31,32 yet Berger et al 33 also emphasize the importance of patient participation in these discussions, which could be encouraged through the use of decision aids. 32 In addition to physician-patient consultations, written or digital information might assist in managing expectations before, and/or aiding personalized information provision and advice after the diagnostic work up. 34 Clear information sheets about common reasons for (subjective) cognitive decline such as sleep disturbances and heightened stress levels could be helpful, especially if combined with advice on what to do to manage these alternative causes for an individual's cognitive complaints, or where to specifically seek further assistance.…”

“…In addition to better-informed decisions aligned with what is most important to patients, 29 shared decision making could improve patient outcomes, for example, resulting in adequate levels of knowledge and satisfaction, and potentially even helping to reduce unnecessary diagnostic testing. 30 Both general practitioners as well as memory clinic physicians could play an important role in facilitating the process of shared decision making, 31,32 yet Berger et al 33 also emphasize the importance of patient participation in these discussions, which could be encouraged through the use of decision aids. 32 In addition to physician-patient consultations, written or digital information might assist in managing expectations before, and/or aiding personalized information provision and advice after the diagnostic work up.…”

Understanding patients’ and significant others’ preferences on starting a diagnostic trajectory for dementia: An integrative review

“…(3) Barriers mentioned by GPs to discuss starting a diagnostic trajectory for dementia may be solved, when this knowledge is implemented in HCPs’ (communication) training (Aminzadeh et al., 2012 ; Koch & Iliffe, 2010 ; Mansfield et al., 2019 ). Patient decision aids like the one being developed in the S-DeciDeD study can also support SDM in general practice (Linden et al., 2021 ).…”

Why to test for dementia: perspectives of patients, significant others and general practitioners

“…The COREQ criteria (COnsolidated criteria for REporting Qualitative research) were followed in reporting the results [ 24 ] ( Appendix 1 ). Data collection was part of the S-DeciDeD project [ 25 ] and was approved by the Medical Review Ethics Committee of the Maastricht University Medical Center (MUMC+) (number 2018–0333). Contributing researchers are trained and experienced in qualitative research methodology, primary care research, clinical neuropsychology and patient involvement in health decision-making.…”