The ABIDE Delphi study identified a list of 17 informative topics on which professionals, patients, and caregivers agree that these should be discussed in the consulting room during the diagnostic process in a memory clinic. This core topic list, supplemented with the moment at which information should be discussed, can support professionals and empower patients and caregivers to get the most value from diagnostic physician-patient consultations.
During the pre-test consultation, the physician could use the list to enquire about the patients’ informational needs regarding, e.g., the goal of a test, possible test results, or the certainty of those results. Additionally, the topic list could serve as a means of education if it were incorporated into an informational brochure provided to patients and caregivers prior to their visit. The list would allow patients or caregivers to become aware of potentially relevant knowledge gaps prior to a visit, look up information to discuss with their physician, or simply enhance their understanding of different facets of the diagnostic process. During the post-test consultation, a patient may become aware that, aside from hearing the diagnosis, they would like information on the certainty or the consequences of a diagnosis. Patients or caregivers could then use the topic list prior to their visit to formulate questions to ask their physician.
We identified eight topics which are deemed extremely important by at least one, but not all three groups. Hence, it is recommended to address these topics in consultations when applicable and/or ask whether the patient or caregiver wishes to receive this information. When examining the general differences between the panels, it is noticeable that professionals generally attributed less importance to informative topics than both the patients and the caregivers. Their insight into daily procedures in their memory clinic, including the limited consultation time, is a likely explanation for this difference. A notable exception is information provision about the availability and role of the case manager, which professionals rated as significantly more important than either patients or caregivers. The Delphi meetings suggest that this difference in perspective is likely the result of the benefits and purpose of a case manager still being largely unknown to patients and their caregivers. Further, our results show that professionals, patients, and caregivers highly value providing or receiving individual diagnostic test results, yet we did observe a difference in rating of importance between the various diagnostic tests. We believe this may be attributed in part to the evaluation of the professionals, who have clinical insight into the diagnostic tests and their value for a diagnosis. Patients and caregivers may have evaluated discussion of individual diagnostic test result as extremely important, assuming the said tests would be done, whereas professionals may have taken the rarer use of certain diagnostic tests into consideration in their evaluation of their importance. It is also possible that a neuropsychological examination and MRI scan are perhaps simply the most well-known diagnostic tests to patients and caregivers, as these tests are used most often in the diagnostic process.
A noteworthy theme that emerged during the meetings was relief of uncertainty. Patients and caregivers indicated that any answer providing insight into what was wrong gave them some relief of uncertainty. This was considered true even for information with a high degree of uncertainty itself, such as a risk estimation. Here, it seems that the benefits of having even a partial answer to questions about the cause of their complaints or what to expect in the future, outweighs the downsides of knowing that information. In the meetings, this appeared to be of particular importance for information regarding etiology and risk estimations for developing dementia. This result is concordant with earlier findings that report information on what to expect is amongst the most important topics for caregivers of persons with dementia [15].
Existing studies into informational needs amongst dementia patients focus on the time after diagnosis, a specific subset of the patient population or later stages of dementia such as hospice care [15,16,17,18,19]. Although their findings all concern information after having received the diagnosis, they too found a consistent need for information focused on future expectations or practical implication amongst patients and caregivers. Our study did not make this distinction and does not only provide insight into which informational topics are considered most important by patients and caregivers, but also to what degree these views are concordant with professionals’ views on information provision. We included all three groups in our sample and therefore our results are supported by professionals, patients, and caregivers. Herein lies the main strength of our study.
However, the design of our study also has its limitations. For one, considering the abstract nature of the questions and the concept of the Delphi method, we did not include patients with more advanced stages of dementia. As a result, our results do not include the views of these patients. In addition, inclusion was limited to Dutch memory clinics. Nonetheless, the topics in the core list (Fig. 2) concern diverse aspects of the diagnostic process, which have worldwide relevance, beyond the Dutch setting. Of note, not only is there practice variation in the diagnostic process internationally, there is also practice variation amongst Dutch memory clinics [11,12,13,14]. To ensure this variation was mirrored in our data, we included participants (patients, caregivers, professionals) from 61 different hospitals nationwide, including academic and local hospitals. We believe that this broad representation of variable clinical practice adds to the generalizability of the results beyond the Dutch borders. Nonetheless, some of the topics included in our study might be more relevant in the Dutch setting (e.g., information about the case manager), while topics not included in our study could be more relevant in other settings (e.g., financial implications). Therefore, future research is warranted to validate the ABIDE core topic list in other countries and in other populations, such as the general older population at risk of dementia, who might in the future benefit from preventive strategies. Further, a quarter of our participating professionals noted the importance of patient context in information provision. While our patient and caregiver groups were quite large for the purpose of the study, they were unsuitable to assess differences based on patient or caregiver characteristics within either group (e.g., diagnosis or age). In addition, while our live meetings offered valuable insights into group differences, these insights focused on the importance of specific informative topics, rather than on the nature of information patients and/ or caregivers desired on these topics (which information about, for example, medication was desired). Understanding differences could benefit tailoring information to individual informational needs, as well as aid the development of educational material directed at patients or caregivers specifically. As such, additional research is needed to better understand the differences between, and amongst, patients and caregivers. Finally, we observed stronger opposing views on informational topics within the group professionals. Again, our study was unsuited to provide a more in-depth look at these different points of view within the professionals’ group. In light of the existing practice variation, more in-depth research into these differences amongst professionals would be an interesting potential avenue for future research. Despite these limitations, the results of the Delphi study provide an evidence-based advice for information provision in memory clinics.