TY - JOUR
T1 - Communication about diagnosis, prognosis, and prevention in the memory clinic
T2 - perspectives of European memory clinic professionals
AU - Hendriksen, Heleen M. A.
AU - van Gils, Aniek M.
AU - van Harten, Argonde C.
AU - Hartmann, Tobias
AU - Mangialasche, Francesca
AU - Kamondi, Anita
AU - Kivipelto, Miia
AU - Rhodius-Meester, Hanneke F. M.
AU - Smets, Ellen M. A.
AU - van der Flier, Wiesje M.
AU - Visser, Leonie N. C.
N1 - Funding Information: The first author of this manuscript, HH, is appointed at the EU-FINGERS project, which is an EU Joint Programme—Neurodegenerative Disease Research (JPND) project. The project is supported through the following funding organizations under the guidance of JPND — www.jpnd.eu : Finland, Academy of Finland; Germany, Federal Ministry of Education and Research; Spain, National Institute of Health Carlos III; Luxemburg, National Research Fund; Hungary, National Research, Development and Innovation Office; The Netherlands, Netherlands Organisation for Health Research and Development (ZonMW #733051102), and; Sweden, Swedish Research Council. AH is a recipient of the Alzheimer Nederland Impulssubsidie (WE.06-2021-06). FM and MK are also supported by EU-FINGERS. FM is supported by Alzheimerfonden Sweden; ERA PerMed, which is funded under the ERA-NET Cofund scheme of the Horizon 2020 Research and Innovation Framework Programme of the European Commission Research Directorate-General, Grant Agreement No. 779282. MK is supported by Swedish Research Council; Center for Innovative Medicine (CIMED) at Karolinska Institutet; Region Stockholm (ALF, NSV) grants; Knut and Alice Wallenberg Foundation; Stiftelsen Stockholms sjukhem. FM and MK are recipients of a grant for the LETHE-Project, and LNCV was financially supported by this grant. The LETHE-Project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement no 101017405 ( https://cordis.europa.eu/project/id/101017405 ). AK was supported by the National Brain Research Program 3 (NAP2022-I-9/2022) of the Hungarian Academy of Sciences. HRM is a recipient of the Memorabel Dementia Fellowship 2021 (ZonMw projectnumber 10510022110004) and Alzheimer Nederland InterACT grant (projectnumber WE.08-2022-06). The collaboration project Dementia diagnostics using Artificial Intelligence (DAILY; project number LSHM19123-HSGF) is co-funded by the public–private partnership allowance made available by Health-Holland, Top Sector Life Sciences and Health, to stimulate public–private partnerships and Combinostics. WF, LNCV, and ES are recipients of ABOARD (A Personalized Medicine Approach for Alzheimer’s Disease); a public–private partnership receiving funding from ZonMW (#73305095007) and Health ~ Holland, Topsector Life Sciences & Health (PPP-allowance; #LSHM20106). More than 30 partners participate in ABOARD. WF and ES are recipients of TAP-dementia, a ZonMw-funded project (#10510032120003) in the context of the Dutch National Dementia Strategy. LNCV is supported by fellowship grants from Alzheimer Nederland (WE.15–2019-05 and WE.08–2022-10) and the Amsterdam Public Health Research Institute. Research of Alzheimer Center Amsterdam is part of the neurodegeneration research program of Amsterdam Neuroscience. Alzheimer Center Amsterdam is supported by Stichting Alzheimer Nederland and Stichting Steun Alzheimercentrum Amsterdam. The clinical database structure was developed with funding from Stichting Dioraphte. The chair of Wiesje van der Flier is supported by the Pasman stichting. Funding Information: HH, AG, TH, FM, AK, and MK report no financial disclosures or conflicts of interest. AH Research is funded by Alzheimer Nederland and the VUmc fund. AH is a consultant to Roche Diagnostics. All funding is paid to her institution. HRM performs contract research for Combinostics; all funding is paid to her institution. WF Research programs of Wiesje van der Flier have been funded by ZonMW, NWO, EU-FP7, EU-JPND, Alzheimer Nederland, Hersenstichting CardioVascular Onderzoek Nederland, Health ~ Holland, Topsector Life Sciences & Health, stichting Dioraphte, Gieskes-Strijbis fonds, stichting Equilibrio, Edwin Bouw fonds, Pasman stichting, stichting Alzheimer & Neuropsychiatrie Foundation, Philips, Biogen MA Inc, Novartis-NL, Life-MI, AVID, Roche BV, Fujifilm, Combinostics. WF holds the Pasman chair. WF has performed contract research for Biogen MA Inc, and Boehringer Ingelheim. WF has been an invited speaker at Boehringer Ingelheim, Biogen MA Inc, Danone, Eisai, WebMD Neurology (Medscape), NovoNordisk, Springer Healthcare, European Brain Council. WF is a consultant to Oxford Health Policy Forum CIC, Roche, and Biogen MA Inc. WF participated in advisory boards of Biogen MA Inc, Roche, and Eli Lilly. All funding is paid to her institution. WF is a member of the steering committee of PAVE, and Think Brain Health. WF was associate editor of Alzheimer, Research & Therapy in 2020/2021. WF is an associate editor at Brain. Leonie Visser (LNCV) has been an invited speaker at Schwabe Group, fees were paid to her institution. Publisher Copyright: © 2023, BioMed Central Ltd., part of Springer Nature.
PY - 2023/12
Y1 - 2023/12
N2 - BACKGROUND: The paradigm shift towards earlier Alzheimer's disease (AD) stages and personalized medicine creates new challenges for clinician-patient communication. We conducted a survey among European memory clinic professionals to identify opinions on communication about (etiological) diagnosis, prognosis, and prevention, and inventory needs for augmenting communication skills. METHODS: Memory clinic professionals (N = 160) from 21 European countries completed our online survey (59% female, 14 ± 10 years' experience, 73% working in an academic hospital). We inventoried (1) opinions on communication about (etiological) diagnosis, prognosis, and prevention using 11 statements; (2) current communication practices in response to five hypothetical cases (AD dementia, mild cognitive impairment (MCI), subjective cognitive decline (SCD), with ( +) or without ( -) abnormal AD biomarkers); and (3) needs for communication support regarding ten listed communication skills. RESULTS: The majority of professionals agreed that communication on diagnosis, prognosis, and prevention should be personalized to the individual patient. In response to the hypothetical patient cases, disease stage influenced the inclination to communicate an etiological AD diagnosis: 97% would explicitly mention the presence of AD to the patient with AD dementia, 68% would do so in MCI + , and 29% in SCD + . Furthermore, 58% would explicitly rule out AD in case of MCI - when talking to patients, and 69% in case of SCD - . Almost all professionals (79-99%) indicated discussing prognosis and prevention with all patients, of which a substantial part (48-86%) would personalize their communication to patients' diagnostic test results (39-68%) or patients' anamnestic information (33-82%). The majority of clinicians (79%) would like to use online tools, training, or both to support them in communicating with patients. Topics for which professionals desired support most were: stimulating patients' understanding of information, and communicating uncertainty, dementia risk, remotely/online, and with patients not (fluently) speaking the language of the country of residence. CONCLUSIONS: In a survey of European memory clinic professionals, we found a strong positive attitude towards communication with patients about (etiological) diagnosis, prognosis, and prevention, and personalization of communication to characteristics and needs of individual patients. In addition, professionals expressed a need for supporting tools and skills training to further improve their communication with patients.
AB - BACKGROUND: The paradigm shift towards earlier Alzheimer's disease (AD) stages and personalized medicine creates new challenges for clinician-patient communication. We conducted a survey among European memory clinic professionals to identify opinions on communication about (etiological) diagnosis, prognosis, and prevention, and inventory needs for augmenting communication skills. METHODS: Memory clinic professionals (N = 160) from 21 European countries completed our online survey (59% female, 14 ± 10 years' experience, 73% working in an academic hospital). We inventoried (1) opinions on communication about (etiological) diagnosis, prognosis, and prevention using 11 statements; (2) current communication practices in response to five hypothetical cases (AD dementia, mild cognitive impairment (MCI), subjective cognitive decline (SCD), with ( +) or without ( -) abnormal AD biomarkers); and (3) needs for communication support regarding ten listed communication skills. RESULTS: The majority of professionals agreed that communication on diagnosis, prognosis, and prevention should be personalized to the individual patient. In response to the hypothetical patient cases, disease stage influenced the inclination to communicate an etiological AD diagnosis: 97% would explicitly mention the presence of AD to the patient with AD dementia, 68% would do so in MCI + , and 29% in SCD + . Furthermore, 58% would explicitly rule out AD in case of MCI - when talking to patients, and 69% in case of SCD - . Almost all professionals (79-99%) indicated discussing prognosis and prevention with all patients, of which a substantial part (48-86%) would personalize their communication to patients' diagnostic test results (39-68%) or patients' anamnestic information (33-82%). The majority of clinicians (79%) would like to use online tools, training, or both to support them in communicating with patients. Topics for which professionals desired support most were: stimulating patients' understanding of information, and communicating uncertainty, dementia risk, remotely/online, and with patients not (fluently) speaking the language of the country of residence. CONCLUSIONS: In a survey of European memory clinic professionals, we found a strong positive attitude towards communication with patients about (etiological) diagnosis, prognosis, and prevention, and personalization of communication to characteristics and needs of individual patients. In addition, professionals expressed a need for supporting tools and skills training to further improve their communication with patients.
KW - Alzheimer’s disease
KW - Clinician-patient communication
KW - Dementia
KW - Diagnostic workup
KW - Memory clinic
KW - Mild cognitive impairment
KW - Personalized medicine
KW - Subjective cognitive decline
UR - http://www.scopus.com/inward/record.url?scp=85166599035&partnerID=8YFLogxK
U2 - https://doi.org/10.1186/s13195-023-01276-9
DO - https://doi.org/10.1186/s13195-023-01276-9
M3 - Article
C2 - 37543608
SN - 1758-9193
VL - 15
SP - 131
JO - Alzheimer's Research & Therapy
JF - Alzheimer's Research & Therapy
IS - 1
M1 - 131
ER -