Diagnostic Disclosure of Mild Cognitive Impairment: what is told to the patient?

Chapter 5 Diagnostic Disclosure of Mild Cognitive Impairment: what is told to the patient? Els Derksen Maud Graff Pieter-Jelle Visser Marcel Olde Rikkert Myrra Vernooij-Dassen 1

ABSTRACT Objective: To describe and explain the practice of diagnostic disclosure in patients with Mild Cognitive Impairments (MCI). Methods: Descriptive study using qualitative content analysis and quantitative analysis of questionnaires about diagnostic disclosure in MCI patients. This survey has been executed as an optional appendix to the multi-centre DESCRIPA-study. Physicians of six memory clinics in five European countries reported about 124 non-demented subjects of 55 years and older with cognitive complains. Results: After the diagnosis of MCI had been made, the information given to the patient could be divided over five different categories: normal memory problems, mild difficulties, abnormal memory problems, MCI and amnestic syndrome. Most of the patients received follow-up by the memory clinic. In case of a diagnosis of (possible) pre-dementia stage of Alzheimer s Disease, the patient s wish to know and the opportunity for patients taking part in decision making about their future life were mentioned as the most important reasons for telling the patient. Diagnostic uncertainty was the most important reason for clinicians not to disclose the diagnosis of possible predementia AD. Conclusion: As far as we know our study is the first to give more insight in the information disclosed to the patients with the diagnostic label of MCI. Similar to patients, clinicians seemed uncertain about the label of MCI, and the information they gave to the patients varied considerably. We conclude that the concept of MCI is not useful in disclosure to the patients and family caregivers without specified information about the patients own memory problems and prognosis. INTRODUCTION Petersen et al. proposed the concept of Mild Cognitive Impairment (MCI) to describe the state of patients suffering from cognitive impairments, but not fulfilling the dementia criteria [1-3]. The diagnostic label of MCI identifies patients with cognitive deterioration, which is more pronounced than usual for a person's age and educational level, but it does not interfere notably with usual activities of daily living (ADL). However, complex instrumental activities, like car parking and the creative process of writing, may already give problems in MCI [3;4]. Recently, data have been published on how individuals with MCI react and cope with this diagnosis [4;5]. Carpenter (2008) concluded that individuals in the earliest stage of dementia (very mild dementia), who elsewhere might be considered to have MCI, may perceive some relief once an explanation for symptoms is known and a treatment plan is developed [5]. Anxiety, measured with the STAI (State-Trait Anxiety Inventory) decreased significantly while depression measured with the GDS-15 (Geriatric Depression Scale-15) stayed stable after diagnosis for persons with very mild dementia. However Carpenter (2008) and Joosten (2008) present a comparable mean MMSE for their research groups: 26.4 2

respectively 25.6, Joosten found that disclosure of the diagnostic label of MCI does not provide any relief as reported by Carpenter [4;5]. For that reason, Joosten (2008) questions the benefits of MCI as a diagnostic label for patients since it tends to prolong the patient s uncertainty[4]. Though, most clinicians find it important to distinguish MCI from normal cognition and Alzheimer s disease (AD), and often share a diagnosis of MCI with both the patients and their proxies (84% and 87% respectively) [6], Carpenter (2008) stressed that more research is needed about how diagnostic information is given to patients with very mild dementia (or MCI )[5], as we do not know what is currently told to the patients and their proxies. The aim of this study is to describe the process and the contents of diagnostic disclosure in MCI patients. Therefore, the main research question for this study is: How do memory clinics disclose the diagnosis of Mild Cognitive Impairment (MCI) to patients and proxies? This research question is divided into four sub-questions: 1. How do memory clinics use the diagnostic label of MCI in their diagnostic disclosure? 2. What is disclosed on prognosis and which additional information is given? 3. Are there differences between the information disclosed to the patients and caregivers? 4. What are reasons for (not) disclosing the diagnosis of possible pre-dementia Alzheimer s Disease? METHODS This survey about diagnostic disclosure in MCI has been executed as an optional appendix to the multi-centre DESCRIPA-study [7]. The DESCRIPA-study aims to develop clinical criteria for predementia Alzheimer s Disease and studies prognostic value of biomarkers. The DESCRIPA design is a prospective cohort study of non-demented subjects older than 55 years referred to a memory clinic including clinical data, neuro-imaging, cognitive screening tests and neuropsychological tests, with a 3-year follow-up. 881 subjects were included from 20 memory clinics. Participants Six centres from five European countries (Finland, France, Spain, Romania and the Netherlands) agreed to collect data on diagnostic disclosure. The six memory clinics were located in departments of psychiatry (1 centre, 6 subjects), neurology (2 centres, 27 subjects) and geriatrics (3 centres; 91 subjects). Physicians completed the questionnaire for 124 subjects of 55 years and older. Outcome measures Our survey about diagnostic disclosure in MCI comprised of a self-registration questionnaire, which was a combination of: 1. a free-text four-items questionnaire about the actual diagnostic disclosure and the prognostic information given to patients and their families (see Appendix 1); and 2. a questionnaire 3

about the physicians reasons for disclosing (8 items) or not disclosing the diagnosis (5 items), using a five-point Likert scale (see Appendix 2). Data analysis This study combined qualitative and quantitative analyses to derive information on diagnostic disclosure. First, qualitative content analysis was used to analyze the free-text questions about the diagnosis and prognosis given to the patient and to the patients family. The answers of the questionnaires on causes of cognitive impairment or diagnostic labels of two centres (including 41 subjects) were coded and analyzed by comparing and identifying categories [8] by the first author. Second, on these categories for each of four free-text questions consensus was reached between all authors (ED, MG, PJV, MV, MOR) after two written rounds. Third, questionnaires from the other four memory clinics were searched to assess the validity of the categories set, and to identify the frequency of categories derived from the qualitative study. Descriptive statistics have been used for the statistical analyses. The diagnoses at baseline, the demographic data and some descriptive data on neuropsychological tests for this sample of subjects were used from the larger DESCRIPA-study. Because of differences in sample sizes across countries we did not focus on analysing cultural differences. RESULTS Patients characteristics The patients characteristics are presented in table 1. The mean age was 71.2 years (SD 6.6); 32 % were male and the mean score on the MMSE was 27.0 (SD 2.5). In comparison with the total DESCRIPAstudy sample (N=881; age 70.3 (7.8); MMSE 27.4 (2.2)), only sex distribution was different (DESCRIPA: 43% male; our sample: 32%; p= 0.02). The time of complaints until diagnosis of MCI was 2.8 years (range 1.7 to 3.8 years). The presence of an informant in our sample and the Descripa-sample was 72% and 76% respectively, with a variation between the memory clinics in Paris (15%) and Barcelona (100%). In both samples, most patients were referred by their General practitioner (GP)(47% Disclosuresample and 45% Descripa-sample). Referral by another specialist or self (patients and proxies) differ, in the Disclosure-sample 32 % were referred by another specialist, and 15% of the patients (and their proxies) made their own appointment at the memory clinic, compared to 21% and 29% of the complete DESCRIPA-study sample. These differences are probably due to different policies on the entrance to specialised care, and the relative differences in contributions of several countries to the toe populations. 4

Table 1: Patient s characteristics N Age mean/ SD Male % MMSE mean/ SD Years of complaints Mean (range) Informant present % Disclosure - Total 124 71.2/6.6 32* 27.0/2.5 2.8 (0-13) 72 % DESCRIPA 881 70.3/7.8 43 27.4/2.2 2.9 (0-23) 76 % Locations Barcelona 6 69.6/5.7 33 28.8/1.3 3.8 (2-6) 100 % Bucarest 55 70.6/6.6 27 27.2/1.8 2.2 (0-8) 87 % Kuopio 20 70.8/7.0 35 24.4/3.0 3.8 (0-11) 90 % Nijmegen 21 73.1/6.5 24 26.7/2.6 3.0 (1-13) 91 % Paris 7 69.2/5.2 43 28.1/0.9 1.7 (0-3) 15 % Toulouse 15 72.7/7.9 40 29.1/1.0 3.5 (0-10) 47 % *p < 0.05 MMSE = Mini Mental State Examination, MCI = Mild Cognitive Impairment Diagnostic conclusion after research Before reporting about the diagnostic disclosure in MCI, we first describe what the physicians noted as their diagnostic conclusion after research in the Descripa-study. In free text descriptions about the causes of cognitive impairment or diagnostic conclusions clinicians completed their questionnaires. The authors (ED, MG, MV, MOR) agreed on four identified categories presented in the table below. Table 2.: Diagnostic conclusion after research (N=124) Category Description Number of patients % unknown No likely cause could be noted 2 1,6 no MCI Including normal functioning, benign or subjective memory changes, depression, stress or anxiety and attentional problems 21 16,9 MCI mild cognitive impairments, including MCI and depression or anxiety 32 25,8 (possible) early dementia Including (possible) early Alzheimer s Disease or pre-dementia, (possible) dementia disorder and degenerative brain disorder 69 55,6 Total 124 100,0 5

In 21 cases of the category of no MCI, the diagnostic conclusion was described as normal functioning, benign memory changes, or memory problems caused by a depression, anxiety or stress. The label MCI was noted for 32 patients, of whom 5 patients also had a diagnosis of depression, anxiety or stress. For more than half of the cases (69 cases) the physician noted the diagnostic conclusion (possible) early dementia. The group of 69 patients included all patients from Bucarest (55 patients), Kuopio diagnosed 8 patients (of 20) and Nijmegen diagnosed 6 patients (of 21) with a (possible) early dementia. In Paris, Barcelona and Toulouse none of the patients were diagnosed with a (possible) early dementia. From the total Disclosure-sample 65% (80 patients) was identified as (very) likely to progress to pre-dementia Alzheimer s Disease, including the 69 patients with a possible early dementia label. For 28% (34 patients) it was found (very) unlikely they would progress to dementia, for 9 patients (7%) clinicians answered they did not know. Use of the diagnostic label of MCI In free text questions clinicians were asked to describe which information they gave to the patients and their family about the diagnosis and prognosis (See Appendix 1). The conclusions the clinicians gave to patients and proxies, are described in table 3. Table 3: Conclusion disclosed to the patient (N=124) Category of disclosure information Description (by wording) given to patients and proxies Number of patients % Reason of cognitive No reason could be found for memory decline unknown problems 1 0.8 Normal memory problems Information disclosed as normal memory problems or no disturbances or decline or no 17 13.7 objective problems Mild difficulties Category with no clear indication of memory problems including worrisome symptoms and 2 1.6 concentration problems Abnormal Memory problems Category with indication of memory problems or cognitive problems, including memory 72 58.1 problems and depression MCI Mild Cognitive Impairments 26 21.0 Amnestic Syndrome Amnestic Syndrome 3 2.4 Dementia Mixed dementia of vascular dementia 1 0.8 (Missing) 2 1.6 Total 124 100,0 6

In 26 cases (21%) Mild Cognitive Impairments was used as a diagnostic label in the actual disclosure to the patients. In four cases the clinicians talked about an amnestic syndrome or mixed or vascular dementia. In two cases no clear indication of memory problems was given using mild difficulties. 72 patients were told that they had abnormal memory problems and 17 patients received the information that their memory problems were normal. Next, we investigated how the diagnostic label of MCI disclosed to the patient corresponded with the actual diagnosis made by the clinicians.. This is shown in table 4. Table 4: Diagnosis disclosed versus Diagnosis after research Diagnosis after research reason unknown mild difficulties Diagnosis disclosed to patient and proxy normal memory problems abnormal memory problems MCI amnestic syndrome dementia Total unknown 1 0 0 0 0 0 0 1 no MCI 0 0 13 7 0 1 0 21 MCI 0 2 2 5 20 2 0 31 (possible) early dementia 0 0 2 60 6 0 1 69 Total 1 2 17 72 26 3 1 122 Data for 2 subjects were missing (n=122). For the patients with the diagnosis of MCI five different diagnostic labels were used in the disclosure meeting varying from normal memory problems mild difficulties, MCI to, abnormal memory problems and amnestic syndrome. In 20 cases (of 31) the label mild cognitive impairments was disclosed. The diagnosis of (possible) early dementia results in four different conclusions disclosed to the patients, of which 60 (of 69) patients were told that they had abnormal memory problems. In one centre six patients, additional to the diagnosis of MCI, were explicitly told that they had no dementia. Prognosis and additional information Additional to the diagnosis and prognosis disclosed to the patient, also information concerning the circumstances under which memory problems occur was given. The authors identified six categories in the answers on prognosis and additional information (Table 5). 7

Table 5: Prognosis and additional information given to the patient Category Description Number of % patients No prognosis given Including no additional information about the 1 0,8 diagnostic label. Uncertain/ unknown It was told that the prognosis for the patient is 15 13 unknown or uncertain. Probably benign The memory problems for the patient are probably 15 13 benign or stable. Additional information on agerelated problems were also disclosed. Follow-up indicated Follow-up of the development of the memory 85 71 problems was announced, including further diagnostics. Probably The memory problems of the patients were described 76 64 progressive as probably progressive. The most worrisome symptoms were explained. Additional information Additional explanation on the nature of memory problems was given, in relation to attention problems or age-related problems. 7 5,8 Data for 4 subjects were missing (n=120). More than 1 option could apply for a patient Of 120 patients 76 patients (64%) received the prognosis probably progressive disease. This corresponds with the clinicians expectations that the diagnosis would progress to pre-dementia Alzheimer s Disease (AD). Clinicians did not specify this prognosis in their answers with regard to how progressive the disease was thought to be in terms of expected behaviour changes, or in what time the progression will arise. Seven patients received additional information on the nature of the memory problems, 85 patients (71%) were told that a follow-up was indicated. Most family or caregivers received the same information as the patient as they were present at the time the diagnosis was disclosed to the patient (104 patients (90 %) of 115). In two cases it was reported that the family did not receive the same conclusion as the patient. In both cases it concerned a patient with serious memory problems with a probable conversion to AD. It became not clear what was actually told to the family, we presume that the family was informed about the diagnosis and the patient not. In 7 cases the physicians reported that additional information was given as an answer to questions in the disclosure meeting. 8

Reasons for telling or not telling a suspicion for a diagnosis of pre-dementia AD In 77 cases (63%) clinicians had a suspicion of pre-dementia AD, including 54 cases of Bucarest (out of 55 cases from that centre), in 45 cases (37%) there was no suspicion of pre-dementia AD. In 59 cases (of 77 cases) the suspicion of pre-dementia AD was told to the patient. The patients wish to know and taking part in decision making about their future life were mentioned as the most important reasons for telling this, followed by understanding the diagnosis by the patient and suggestion for starting drugs. To enhance the autonomy of the patient and reducing anxiety or uncertainty were not mentioned as a reason for telling the patient the diagnostic hypothesis of predementia AD. In 13 patients (Kuopio (6), Nijmegen (4) and Barcelona (3)) the suspicion of pre-dementia AD was not told to the patient (in 5 cases it did not become clear if the hypothesis of pre-dementia AD was told or not). Reason for non-disclosure was diagnostic uncertainty in all cases. The other possible reasons for not telling: not understanding, no cure possible and risk for depression or risk for suicide did not play a role in their decision not to tell the suspicion of pre-dementia AD. DISCUSSION This first study on the disclosure of MCI to patients and their proxies emphasizes the variety of information and diagnostic labels given in clinical practice. For patients with the diagnosis of MCI six different diagnostic labels were used. Most of the patients were informed about the prognosis, both if the memory problems were considered as probably benign (15%), and if it would be probably progressive (64%). When there was a suspicion of pre-dementia AD, mostly this was told to the patient. The most important reasons for giving information on pre-dementia AD were the patients wish to know and the possibility of taking part in decision making. To enhance the autonomy of the patient was not mentioned as a reason for disclosing a suspicion of pre-dementia AD. While in demented subjects disclosure of a the diagnosis is considered useful by patients and caregivers because it confirms their assumptions without being stressful [9], this may not apply to subjects with MCI. We did not measure the effect of disclosure on patients/caregivers, but in another study it was shown that subjects experience disclosure of the diagnosis of MCI as cumbersome, because it prolonged the patients uncertainty [4]. In our study most clinicians provided a prognosis, which may help to reduce uncertainty, although the prognosis may be too pessimistic as discussed below. The observation that the majority of patients was told that the complaints were likely progressive, does not fit with the latest data on conversion rates within three years. Preliminary results from the Descripa-study show an annual conversion rate (ACR) to dementia of 9.9% and a cumulative conversion rate of nearly 30 % to AD over a 3 year period [7;10]. These figures correspond with a 9

recently published review about the risk of progression of MCI to dementia for studies with a duration of less than 5 years: the ACR varies from 10 15 %, with a mean cumulative conversion rate of 31.4% [7;11]. Burke (2009) even reported of an long-term ACR-rate of 3.3% [12]. However, the difference between these studies is probably related to population differences, these studies underline that only a subset of subjects with MCI will become demented. So it is possible that clinicians told patients that their MCI is progressive more often than is justified by the observed conversion rate from the Mitchell meta analysis and the Descripa study [11]. This would mean that patients may have received a wrong prognosis which may have led to unjustified worries. Still, complaints may progress without meeting the threshold for dementia. In addition, subjects may convert to dementia at longer follow-up intervals. Limitations of study First, our study was an optional appendix to the Descripa-study. Six memory clinics (in five countries) of 20 memory clinics participating in het Descripa-sample agreed to participate, which may have caused selection bias. However, the patient characteristics of our sample (N=124, 14%) resembles the Descripa sample (N=881) on age, MMSE, years of complaints and informant present. Between the six memory clinics we see some differences in referral. For example in the Netherlands up to 90% referral by GPs can be explained by the role of the GP as a gatekeeper to specialized care. These differences in health care system and socio cultural environment will undoubtedly have influenced the results. We did not carry out in-depth analysis of the (cross-national) reasons for disclosure differences. This would be an interesting topic for future research. Second, in this study we did not collect information on the type of cognitive decline (memory or behaviour problems) expected and on what clinicians expected to be the time period in which progression would occur, although the clinicians had the opportunity to add this in their answers to the free-text questions. Furthermore, only motivated clinicians probably have participated in our Disclosure -study, which is another potential source of selection bias. The study therefore only points at the disclosure practice in state of the art memory clinics, not necessarily at the general practice in the countries included. Next, the number of cases for each of the six memory clinics are variable (range 6-55 cases). This means that it was not possible to test for differences between locations, however we think that cultural aspects and differences in the medical system influence the results. Final limitation is that we used the method of self-report with combination of free-text and multiple choice questions. With videotaped disclosure meetings more information would have been available on the actual verbal and non-verbal communication by the physicians, but also reactions of patients and caregivers could be analyzed. 10

Conclusion In this study we revealed unique data and first insight in what information is disclosed to the patients, concerning the diagnostic label of MCI and the prognosis given to the patients and their proxies. We also gained more insight in the reasons for telling or not telling of the diagnosis of possible/probable pre-dementia Alzheimer s Disease to the patient. Our conclusion is that the disclosure of the diagnosis of MCI as such, how informative it may seem, is only useful when MCI is disclosed in specified terms related to the individual patient. Then clinicians and other professional caregivers can be of help to both patients and family to discuss their problems and to support them in their coping, alike with the presumed advantages of disclosing the diagnosis of dementia at an early stage [13][14]. Because of the uncertainty about the prognosis, the clinicians should be cautious in giving a prognosis about the conversion to dementia. Recommendations for the disclosure of MCI should best be part of all guidelines concerning the diagnostic disclosure of cognitive decline. 11

References [1] Petersen RC, Doody R, Kurz A, et al. Current concepts in mild cognitive impairment. Arch Neurol 2001;58(12):1985-92. [2] Petersen RC. Mild cognitive impairment as a diagnostic entity. J Intern Med 2004;256:183-94. [3] Gauthier S, Reisberg B, Zaudig M, et al. Mild cognitive impairment. Lancet 2006;367:1262-70. [4] Joosten-Weyn BL, Vernooij-Dassen M, Rikkert MO, Teunisse JP. Mild cognitive impairment: coping with an uncertain label. Int J Geriatr Psychiatry 2008;23:148-54. [5] Carpenter BD, Xiong C, Porensky EK, et al. Reaction to a dementia diagnosis in individuals with Alzheimer's disease and mild cognitive impairment. J Am Geriatr Soc 2008;56:405-12. [6] Mitchell T, Woodward M, Hirose Y. A survey of attitudes of clinicians towards the diagnosis and treatment of mild cognitive impairment in Australia and New Zealand. Int Psychogeriatrics 2008;20:77-85. [7] Visser PJ, Verhey F, Boada M, et al. Development of Screening Guidelines and Clinical Criteria for Predementia Alzheimer's Disease. The Descripa Study. Neuroepidemiology 2008;30:254-65. [8] Pope C, Mays N. Reaching the parts other methods cannot reach: an introduction to qualitative methods in health and health services research. BMJ 1995;311:42-5. [9] Derksen E, Vernooij-Dassen M, Gillissen F, Olde RM, Scheltens P. Impact of diagnostic disclosure in dementia on patients and carers: qualitative case series analysis. Aging Ment Health 2006;10:525-31. [10] Visser PJ, Kester A, Jolles J, Verhey F. Ten-year risk of dementia in subjects with mild cognitive impairment. Neurology 2006;67:1201-7. [11] Mitchell AJ, Shiri-Feshki M. Temporal trends in the long term risk of progression of mild cognitive impairment: a pooled analysis. J Neurol Neurosurg Psychiatry 2008;79:1386-91. [12] Burke D. ACP Journal Club. Review: Long-term annual conversion rate to dementia was 3.3% in older adults with mild cognitive impairment. Ann Intern Med 2009;150:JC4-13. [13] Meyers B. Telling patients they have Alzheimer's Disease. BMJ 1997;314:321-3. [14] Doraiswamy PM, Steffens DC, Pitchumoni S, Tabrizi S. Early recognition of Alzheimer's disease: what is consensual? What is controversial? What is practical? J Clin Psychiatry 1998;59 Suppl 13:6-18. 12

Appendix 1. Disclosure of MCI (free text questionnaire) 1. What conclusion did you gave this patient / family and carers? 2. If you mentioned a diagnosis: What did you tell the patient /family and carers? 3. What did you tell about prognosis to the patient / family and carers? 4. If you used the term Alzheimer s disease in the conclusion: how did you use it? Appendix 2. Reasons for telling or not telling. 1. Did you have a suspicion that this patient had pre-dementia AD? Yes or No. If yes and you told the patient the suspicion for pre-dementia AD continue to question 2; if yes and you did not tell the patient the suspicion for pre-dementia AD continue to question 3 If you told the patient the suspicion for pre-dementia AD: 2. Which of the following statements with regard to disclosing this diagnosis were relevant in this person. Please rate them on the following scale: 1. strongly agree; 2. agree somewhat; 3. no opinion, 4. disagree somewhat, 5. disagree strongly. a. The diagnosis was given because it was the person s question to know what is going on. b. The diagnosis was given to enhance the person s autonomy. c. The diagnosis of pre-dementia AD will be a starting point for you to talk about the person s part in decision making in decisions affecting his/her later life. d. You will use telling the diagnosis to suggest anti-mci/dementia drugs and primary/secondary prevention drugs. e. You told the diagnosis to be able to ask informed consent for a clinical trial. f. The diagnosis was sufficiently understood by the person. g. Telling the diagnosis caused immediate anxiety or uncertainty for the person. h. Telling the diagnosis reduced anxiety or uncertainty for the person. If you did not tell the diagnosis (of MCI) answer this question: 3. Which of the following statements with regard to not disclosing the diagnosis were relevant in this person. Please rate them on the following scale: 1. strongly agree; 2. agree somewhat; 3. no opinion, 4. disagree somewhat, 5. disagree strongly. a. Since the diagnosis may be inaccurate, a disclosure of the diagnosis will unnecessarily worry the person. b. Since there is no cure for MCI, therefore the disclosure of the diagnosis is unethical. c. This person with MCI would not understand the disclosure of the diagnosis. d. There is a great risk that this person will become depressed after being told the diagnosis. e. There is a danger that this person may commit suicide on being told a diagnosis. 13