An Australian community jury to consider case‐finding for dementia: Differences between informed community preferences and general practice guidelines

Abstract Background Case‐finding for dementia is practised by general practitioners (GPs) in Australia but without an awareness of community preferences. We explored the values and preferences of informed community members around case‐finding for dementia in Australian general practice. Design, setting and participants A before and after, mixed‐methods study in Gold Coast, Australia, with ten community members aged 50‐70. Intervention A 2‐day citizen/community jury. Participants were informed by experts about dementia, the potential harms and benefits of case‐finding, and ethical considerations. Primary and secondary outcomes We asked participants, “Should the health system encourage GPs to practice ‘case‐finding’ of dementia in people older than 50?” Case‐finding was defined as a GP initiating testing for dementia when the patient is unaware of symptoms. We also assessed changes in participant comprehension/knowledge, attitudes towards dementia and participants’ own intentions to undergo case‐finding for dementia if it were suggested. Results Participants voted unanimously against case‐finding for dementia, citing a lack of effective treatments, potential for harm to patients and potential financial incentives. However, they recognized that case‐finding was currently practised by Australian GPs and recommended specific changes to the guidelines. Participants increased their comprehension/knowledge of dementia, their attitude towards case‐finding became less positive, and their intentions to be tested themselves decreased. Conclusion Once informed, community jury participants did not agree case‐finding for dementia should be conducted by GPs. Yet their personal intentions to accept case‐finding varied. If case‐finding for dementia is recommended in the guidelines, then shared decision making is essential.


| INTRODUC TI ON
Early diagnosis of dementia is a challenging issue for primary care physicians, largely due to concerns arising from the fragile balance of harms and benefits, 1-3 the imprecision of some assessment tools 4,5 psychological distress, reduced quality of life 6 and financial burden. 3 Multiple countries including Australia, the UK, the USA and Canada have guidelines that consider "early identification" of dementia but these countries do not support screening for dementia. 5,[7][8][9] Screening for dementia occurs in people who are asymptomatic (eg, a certain age, individuals "at risk"). 10 Case-finding occurs when clinicians are triggered to explore a dementia assessment because of cues from an individual's symptoms or behaviour, in combination with pre-existing knowledge and clinical judgement, but the individual is unaware of signs of dementia 11 and had presented to the health clinic for another reason. In contrast, "timely diagnosis" occurs when patients or carers present to physicians concerned their symptoms may be dementia and request an assessment 3 or when a symptoms adversely affect the person or those close to them. 12 Globally, increased awareness of dementia in the public and media has resulted in many advocating for early diagnosis. 1,13 There are two interrelated issues that arise from this: first, how early is earlyat what time point should dementia be identified; and second, what approach is best for "early identification"-screening, case-finding or timely diagnosis?
Recently, the Royal Australian College of General Practitioners (RACGP) updated their practice guidelines 14 to encourage general practitioners (GPs) to practise "case-finding" for dementia in people over 65. The recommendation is for GPs to be "alert to the signs and symptoms of dementia" and practise case-finding by asking "how is your memory?" and obtaining information from reliable others over several appointments. Case-finding can be considered controversial, as on the one hand, it may allow for more timely planning and identification of the disease, but on the other, it may also result in a potentially devastating diagnosis with few effective treatment options, turning a seemingly well person into a sick person for an extended period of time.
Because of the fragile balance between potential harms and benefits of case-finding, we need to explore community values and preferences before case-finding for dementia becomes an agreed practice. We conducted a citizen/community jury (CJ) using methods based on those described by the Jefferson Centre 15 to consider the informed community perspective about whether GPs should practice case-finding for dementia. CJs are a form of deliberative democracy used to explore community perspectives on important but controversial topics. 15 CJ participants are recruited from the general population or the target population for the condition being studied and deliberate on questions requiring an ethically sensitive or values-based decision. 16 CJs aim to elicit an informed community perspective on difficult topics where the values and preferences of community members enhance policy decisions. 17 CJ members are provided with expert presentations and opportunities to question the experts, engage in both facilitated and private deliberation, and are asked to form a consensus or majority "verdict" on the topic question. 15 CJs have been used successfully in research to elicit informed perspectives for several health policy issues, for example screening mammography, 18,19 screening for prostate cancer, 20 quantifying health preferences 21 and more broadly in local governments. 22,23 Our primary outcome was community juror recommendation for the question, "Should the health system encourage GPs to practice "case-finding" of dementia in people older than 50?" We deliberately lowered the age range from the guidelines to over 50 years to reflect both Australian public experiences of other health practices such as cancer screening programmes (eg, government sponsored bowel and breast cancer screening commence at age 50 in Australia), and bone density checks, etc. that heighten awareness of individual health concerns, and to reflect that younger-onset dementia (although rare) is increasingly recognized as a potential problem confronting practitioners. 24 We also assessed changes in participant comprehension/ knowledge of dementia, attitudes towards dementia, whether they had engaged in an informed decision, and explored consistency of participant's own intentions to test for dementia.

| 477
issues in the ageing population. The expert presenting the potential negatives for case-finding for dementia works in geriatric medicine with expertise in ageing and AD. The expert presenting the potential benefits of case-finding for dementia is a GP with expensive experience working with patients with dementia and chaired the RACGP practice guidelines on dementia. All experts had access to each other's presentation. Presenters, their topics and access to their presentations via URLs are provided in Box 1. After completion of the CJ, expert presenters contributed to the writing of the manuscript and are named as co-authors. No reimbursement (financial or otherwise) was provided to the experts.

| Materials provided to CJ participants
Participants were provided with biographies of the experts, the schedule of the weekend, and during private deliberations, a copy of the relevant section of the RACGP Redbook practice guidelines for case-finding of dementia. 14 In addition, a printout of the definitions used in the CJ for screening, case-finding and diagnosis was also provided. The definition for case-finding used in the CJ was "Casefinding-a patient may incidentally complain about a problem (ie, it is not the presenting problem) that triggers suspicion on the GPs behalf and so is tested for dementia (eg, complains of losing words three times this week, forgetting keys etc.)." These patients are unaware this incidental disclosure may indicate signs of dementia. See Appendix S1 for all definitions.

| Patient and public involvement
We did not involve patients in the design or recruitment of this CJ.
However, the content and structure of the CJ were designed and implemented by considering the feedback and suggestions from community jurors who participated in previous juries this team had conducted. Community jurors for the present CJ are acknowledged and thanked in the acknowledgement section collectively, as identifying them individually by name would risk compromising their anonymity. CJ participants were asked whether they were interested in receiving the publication detailing the results of the CJ, and those who explicitly consented will be provided with the published version of the article.

| Procedure
The CJ was conducted over two weekend days, [18][19] March 2017, at Bond University (see Table 1 for schedule). All sessions except for the final deliberation were facilitated by a research team member RT (a psychologist) to ensure equal participation, record questions and note participant concerns. Throughout the 2 days, except during the final confidential deliberation, two observers (RS and AMS) took contemporaneous notes on participant comments, affect and participation to support the facilitator. So as not to lead or bias the jurors towards a specific recommendation, no one outside of the jury group was present during private deliberations.
On Saturday, participants provided written consent and completed On Sunday, participants debriefed, discussed overnight reflections and were provided the opportunity to recontact the experts via telephone for further information and clarification. Participants then deliberated in private on the primary question and were able to ask for clarification on any matter during this time. They then presented their decision to the facilitator and researchers.

| Measures
It is important to ascertain that CJ participants made an "informed decision" when providing their recommendations. This requires adequate comprehension of the topic and a consistency between their personal attitudes towards the topic and their personal intentions. 26 Information questions are used in CJs to assess participant comprehension of information presented to them by the experts during the CJ. Therefore, questions and answers are developed from the expert presentations and are reflective of the information provided and are not meant to be reflective of higher clinical or research knowledge. Ten comprehension questions were developed from information provided during the expert presentations (seven true/ false conceptual items and three multiple choice numerical items).
Post-CJ adequate comprehension was defined a priori as 50% correct. 27 Attitudes towards case-finding for dementia were assessed using five items on a 7-point scale with the higher number suggesting more positive attitudes. [26][27][28] A positive attitude was defined as scores ≥28/35. 27 We measured future intention to undergo case-finding for dementia if suggested by a GP using a 7-point scale ranging from 1 (definitely not) to 7 (definitely will). Scores between 5-7 were classified as positive intentions, and scores between 1-3 and 4 (unsure) as Informed choice was defined as adequate relevant knowledge and a consistency between individual attitudes and intentions. 26,27 The post-CJ survey is available in the Appendix S1.

| Statistical analyses
The CJ proceedings were audio-recorded and transcribed.
Participants' recommendations on the primary question were also recorded on a whiteboard, corrected by participants and participant notes were also provided. Transcripts were analysed qualitatively to identify reasons for juror recommendations. We analysed comprehension/knowledge, attitudes and intentions in a before and after study design. Paired pre-to post-CJ differences for continuous outcomes were examined using Wilcoxon signed rank tests. All data were analysed in SPSS Statistics 23 (IBM Corp., Armonk, NY, USA).

| RE SULTS
Of the 14 participants recruited, 12 were available for the weekend and agreed to participate in the study. Of these, one withdrew prior to day 1 (male aged: 60-70 years), and one did not attend for unknown reasons (female aged: 60-70 years). Ten participants attended and completed the CJ. The average age of participants was 62 years (SD = 6.9; median 62.5 years, IQR = 12.25), and there was an even gender split. Education levels were mixed. Nine participants indicated they had not been tested for dementia and one was unsure (Table 2).

| Community jury recommendation
Community jury participants engaged with each presentation and asked questions of each presenter immediately following their presentation. On the morning of day 2, CJ participants also asked further clarifying questions to speakers 1, 3 and 4 (See Table 1  Guidelines are provided without edit in the Appendix S1. In addition, to specific guideline changes, the participants suggested potential solutions (Box 3). For example, although the participants thought they knew about dementia from media and public discourse, they were surprised to learn that there are currently no effective treatments and that prevention rests upon modifiable risk factors that may decrease risk of dementia but not eliminate it.
Therefore, participants believed the public were not fully cognisant of information about dementia required to make an informed health decision. Participants recommended a public awareness campaign.
Finally, in response to concerns about financial incentives for casefinding for dementia, the participants suggested that any potential incentives be invested into research to address prevention and management of dementia. This was a statistically significant decline in the overall intention to test score (median = 7, IQR = 6-7, vs median = 2, IQR = 1-6, P = 0.01).

| Informed decision
Using the algorithm for informed decision making (≥50% comprehension questions correct and congruence between attitude and intentions to test), nine participants made an informed decision post-CJ. The remaining participant scored negatively on their attitude towards case-finding (score of 20) but indicated they "definitely will" (score of 7) undergo case-finding for dementia if offered.

| D ISCUSS I ON
Our informed community members did not believe Australian GPs significantly more depression and stress. 6 Additionally, the same study reported that individuals unaware of their diagnosis of either MCI or AD reported greater quality of life and better well-being than those aware of the diagnosis, 6 suggesting that regardless of symptoms, the diagnostic label itself was harmful to some.

No effective treatment
Juror 5: I think that until there is a definite chance of stopping or fixing the problem, it would create a far greater negative outcome than a positive one.
Juror 1: It was a surprise to me that I didn't realise there was actually nothing that could be done to help anybody with it.

Case-finding too early in the course of the disease
Juror 5: You know, we're getting told very early when it's going to be 10 years before it appears, that would be 10-for a lot of people, that would be 10 years of worry.
Juror 6: I look at it this way, that the diagnosis stage is still early enough for planning.

Role of the GP
Juror 1: GPs overstepping role "Unless the patient specifically has a concern that they speak to their GP about, then I don't think the GP should step in. I think it's for testing, screening, whatever, that is something that is entirely up to the patient." Juror 1: I just think, what gives a GP a right to play god?
Juror 2: When somebody mentions dementia or Alzheimer's to somebody, you are placing fear into their mind….I don't think it is the doctor's right to set somebody up with that fear.

Mental health
Juror 10: I see that to be diagnosed and told that you are destined to become a person with dementia, will be devastating for anyone. For those patients who are misdiagnosed and caused unnecessary fear and indignity, it would be far worse.
Juror 5: I was involved a lot in the AIDS thing way back and there were people hearing they had it and going out and killing themselves, like that, you know, just the shock. So the same thing could apply with this. It's a death sentence in a way.
Juror 2: The stress and anxiety of people that might get diagnosed or misdiagnosed just outweighs the positives that might be.
Juror 1: They just don't know what effect mentally that's going to have on that person.

Potential incentivisation
Juror 2: …encouraging GPs would just encourage kickbacks and overdiagnosis because people, like people are, they want to profit. Juror 4: I had a doctor telling me once about try these things and telling me about the holiday he had because of the incentive.

Less frequently expressed concerns
Juror 6: Has any one of us considered the cost factor on the whole community? Because all the screening and referrals to specialists and counsellors and -it must be huge and basically for nothing.
Juror 2: Your medical insurance would dump you like a brick.
Despite their opposition, the community members recognized case-finding was promoted in the RACGP Clinical Guidelines for people over 65 years. 14 So, CJ participants suggested changes to the guidelines including wide-scale public education regarding diagnostic, prognostic and treatment uncertainty; clinician education on discussing this uncertainty; and concerns about any potential financial incentives by explicitly prohibiting these, and instead redirecting any monies towards preventive and treatment research. Despite concern regarding the low age of case-finding posed in our CJ question, participants suggested eliminating the age criterion to reflect the rare but important possibility of early age onset.
The study has several strengths. This was the first CJ we are aware of to explore community values and preferences of case-finding for dementia. CJs provide participants with expert information and the ability to question the experts, thus capturing participants' informed views and preferences. This contrasts with other forums that garner public opinion which lack the information provision element, such as focus groups and population surveys. For example, public views on screening for prostate cancer are generally positive. When we conducted a CJ on this topic, pre-CJ screening intentions and attitudes were positive (as would be expected) 20 ; however, post-CJ this position was reversed. As is usual practice, in this CJ we selected our participants following CJ practices of randomly recruiting from the "affected public." 16 As CJs recruit participants who are potentially affected by the question 16 (case-finding), we deliberately excluded carers and individuals diagnosed with MCI or dementia. Our participants therefore represent the authentic experiences of service users with no vested interest in the topic. 16 We acknowledge the jury decision may have been different should other members of the public have been included. For example, previous research reported that 92% of individuals attending a memory clinic to assess their cognitive functioning wanted to know the outcome of their assessment. 29 However, these people had already consented to testing so were unlike participants affected by our question. Although review papers report "most people want to know," 30  However, although the jurors initially thought this age "too young" their final recommendations to the RACGP included eliminating the age criterion altogether. Their justification for doing so was to acknowledge the rare occasions of younger-onset dementia and to increase "equal access and equitable treatment regardless of age." This is an example of where community juror recommendations would need to be viewed by epidemiologists before potential implementation. Removing age criterion for case-finding for dementia would significantly lower the positive predictive value of diagnosis rates because the prevalence of dementia in young age groups is very low.

ACK N OWLED G EM ENTS
The authors wish to thank the members of the CJ who gave their time, thoughts and considerations to the deliberations described in this paper.
F I G U R E 1 Comparison of individual intention to test scores over the community jury weekend