TY - JOUR
T1 - Motivations of patients and their care partners for visiting a memory clinic. A qualitative study
AU - Visser, Leonie N. C.
AU - Fruijtier, Agnetha
AU - Kunneman, Marleen
AU - Bouwman, Femke H.
AU - Schoonenboom, Niki
AU - Staekenborg, Salka S.
AU - Wind, Hilje A.
AU - Hempenius, Liesbeth
AU - de Beer, Marlijn H.
AU - Roks, Gerwin
AU - Boelaarts, Leo
AU - Kleijer, Mariska
AU - Smets, Ellen M. A.
AU - van der Flier, Wiesje M.
N1 - Funding Information:
We thank Jetske van der Schaar, Rogier Lutz, Bahar Azizi, Anneke Hellinga and Sonja van Gils for their assistance during data collection and/or coding. Research of the Alzheimer center Amsterdam is part of the neurodegeneration research program of Amsterdam Neuroscience. The Alzheimer Center Amsterdam is supported by Stichting Alzheimer Nederland and Stichting VUmc fonds. LNCV was supported by a fellowship grant received from Alzheimer Nederland (WE.15-2019-05) and the LETHE-project, which has received funding from the European Union's Horizon 2020 Research and Innovation Program (#101017405). The chair of Wiesje van der Flier is supported by the Pasman stichting. WvdF is recipient of JPND-EURO-FINGERS (ZonMW #733051102). WvdF, EMAS, and LNCV are recipients of ABOARD, which is a public-private partnership receiving funding from ZonMW (#73305095007) and Health∼Holland, Topsector Life Sciences & Health (PPP-allowance; #LSHM20106). The ABIDE project was funded by ZonMW-Memorabel (#733050201), in the context of the Dutch Deltaplan Dementie. These funding sources were not involved in study design; in the collection, analysis, and interpretation of data; in the writing of the report; and in the decision to submit the article for publication.
Funding Information:
We thank Jetske van der Schaar, Rogier Lutz, Bahar Azizi, Anneke Hellinga and Sonja van Gils for their assistance during data collection and/or coding. Research of the Alzheimer center Amsterdam is part of the neurodegeneration research program of Amsterdam Neuroscience. The Alzheimer Center Amsterdam is supported by Stichting Alzheimer Nederland and Stichting VUmc fonds . LNCV was supported by a fellowship grant received from Alzheimer Nederland ( WE.15-2019-05 ) and the LETHE-project , which has received funding from the European Union’s Horizon 2020 Research and Innovation Program ( #101017405 ). The chair of Wiesje van der Flier is supported by the Pasman stichting. WvdF is recipient of JPND-EURO-FINGERS ( ZonMW #733051102 ). WvdF, EMAS, and LNCV are recipients of ABOARD, which is a public-private partnership receiving funding from ZonMW ( #73305095007 ) and Health∼Holland, Topsector Life Sciences & Health ( PPP-allowance ; #LSHM20106 ). The ABIDE project was funded by ZonMW-Memorabel ( #733050201 ), in the context of the Dutch Deltaplan Dementie. These funding sources were not involved in study design; in the collection, analysis, and interpretation of data; in the writing of the report; and in the decision to submit the article for publication.
Publisher Copyright:
© 2023 The Authors
PY - 2023/6/1
Y1 - 2023/6/1
N2 - Objective: We investigated motivations of patients and care partners for their memory clinic visit, and whether these are expressed in consultations. Methods: We included data from 115 patients (age 71 ± 11, 49% Female) and their care partners (N = 93), who completed questionnaires after their first consultation with a clinician. Audio-recordings of these consultations were available from 105 patients. Motivations for visiting the clinic were content-coded as reported by patients in the questionnaire, and expressed by patients and care partners in consultations. Results: Most patients reported seeking a cause for symptoms (61%) or to confirm/exclude a (dementia) diagnosis (16%), yet 19% reported another motivation: (more) information, care access, or treatment/advice. In the first consultation, about half of patients (52%) and care partners (62%) did not express their motivation(s). When both expressed a motivation, these differed in about half of dyads. A quarter of patients (23%) expressed a different/complementary motivation in the consultation, then reported in the questionnaire. Conclusion: Motivations for visiting a memory clinic can be specific and multifaceted, yet are often not addressed during consultations. Practice implications: We should encourage clinicians, patients, and care partners to talk about motivations for visiting the memory clinic, as a starting point to personalize (diagnostic) care.
AB - Objective: We investigated motivations of patients and care partners for their memory clinic visit, and whether these are expressed in consultations. Methods: We included data from 115 patients (age 71 ± 11, 49% Female) and their care partners (N = 93), who completed questionnaires after their first consultation with a clinician. Audio-recordings of these consultations were available from 105 patients. Motivations for visiting the clinic were content-coded as reported by patients in the questionnaire, and expressed by patients and care partners in consultations. Results: Most patients reported seeking a cause for symptoms (61%) or to confirm/exclude a (dementia) diagnosis (16%), yet 19% reported another motivation: (more) information, care access, or treatment/advice. In the first consultation, about half of patients (52%) and care partners (62%) did not express their motivation(s). When both expressed a motivation, these differed in about half of dyads. A quarter of patients (23%) expressed a different/complementary motivation in the consultation, then reported in the questionnaire. Conclusion: Motivations for visiting a memory clinic can be specific and multifaceted, yet are often not addressed during consultations. Practice implications: We should encourage clinicians, patients, and care partners to talk about motivations for visiting the memory clinic, as a starting point to personalize (diagnostic) care.
KW - Alzheimer's disease
KW - Dementia
KW - Diagnostic work-up
KW - Doctor-patient communication
KW - Memory clinic
KW - Patient perspectives
UR - https://www.scopus.com/inward/record.uri?partnerID=HzOxMe3b&scp=85150841425&origin=inward
UR - https://www.ncbi.nlm.nih.gov/pubmed/36913778
U2 - 10.1016/j.pec.2023.107693
DO - 10.1016/j.pec.2023.107693
M3 - Article
C2 - 36913778
SN - 0738-3991
VL - 111
JO - Patient Education and Counseling
JF - Patient Education and Counseling
M1 - 107693
ER -