Clinicians’ communication with patients receiving a MCI diagnosis: The ABIDE project
Autoři:
Leonie N. C. Visser aff001; Ingrid S. van Maurik aff002; Femke H. Bouwman aff002; Salka Staekenborg aff004; Ralph Vreeswijk aff005; Liesbeth Hempenius aff006; Marlijn H. de Beer aff007; Gerwin Roks aff008; Leo Boelaarts aff009; Mariska Kleijer aff010; Wiesje M. van der Flier aff002; Ellen M. A. Smets aff001
Působiště autorů:
Department of Medical Psychology, Amsterdam Public Health research Institute, Amsterdam UMC, University of Amsterdam, Amsterdam, the Netherlands
aff001; Alzheimer Center Amsterdam, Department of Neurology, Amsterdam Neuroscience, Vrije Universiteit Amsterdam, Amsterdam UMC, Amsterdam, the Netherlands
aff002; Department of Epidemiology and Biostatistics, Vrije Universiteit Amsterdam, Amsterdam UMC, Amsterdam, The Netherlands
aff003; Department of Neurology, Tergooi Ziekenhuis, Blaricum, The Netherlands
aff004; Department of Clinical Geriatrics, Spaarne Gasthuis, Haarlem, The Netherlands
aff005; Geriatric Center, Medical Center Leeuwarden, Leeuwarden, The Netherlands
aff006; Department of Neurology, Reinier de Graaf Gasthuis, Delft, The Netherlands
aff007; Department of Neurology, Elisabeth-TweeSteden Ziekenhuis, Tilburg, The Netherlands
aff008; Geriatric Department, NoordWest Ziekenhuis Groep, Alkmaar, The Netherlands
aff009; Department of Neurology, LangeLand Ziekenhuis, Zoetermeer, The Netherlands
aff010
Vyšlo v časopise:
PLoS ONE 15(1)
Kategorie:
Research Article
doi:
https://doi.org/10.1371/journal.pone.0227282
Souhrn
Background
We aimed to explore clinicians’ communication, including the discussion of diagnosis, cause, prognosis and care planning, in routine post-diagnostic testing consultations with patients with Mild Cognitive Impairment (MCI).
Methods
Thematic content analysis was used to analyze audiotaped consultations in which 10 clinicians (eight neurologists and two geriatricians) from 7 memory clinics, disclosed diagnostic information to 13 MCI patients and their care partners. We assessed clinician-patient communication regarding diagnostic label, cause, prognosis and care planning to identify core findings.
Results
Core findings were: clinicians 1) differed in how they informed about the MCI label; 2) tentatively addressed cause of symptoms; 3) (implicitly) steered against further biomarker testing; 4) rarely informed about the patient’s risk of developing dementia; 5) often informed about the expected course of symptoms emphasizing potential symptom stabilization and/or improvement, and; 6) did not engage in a conversation on long-term (care) planning.
Discussion
Clinicians’ information provision about the underlying cause, prognosis and implications for long-term (care) planning in MCI could be more specific. Since most patients and care partners have a strong need to understand the patient’s symptoms, and for information on the prognosis and implications for the future, clinicians’ current approach may not match with those needs.
Klíčová slova:
Alzheimer's disease – Biomarkers – Cognitive impairment – Dementia – Diagnostic medicine – Long-term care – Memory – Prognosis
Zdroje
1. Scheltens P, Blennow K, Breteler MM, de Strooper B, Frisoni GB, Salloway S, et al. Alzheimer's disease. Lancet. 2016;388(10043):505–17. doi: 10.1016/S0140-6736(15)01124-1 26921134.
2. Petersen RC. Mild cognitive impairment as a diagnostic entity. J Intern Med. 2004;256(3):183–94. doi: 10.1111/j.1365-2796.2004.01388.x 15324362.
3. Petersen RC, Lopez O, Armstrong MJ, Getchius TSD, Ganguli M, Gloss D, et al. Practice guideline update summary: Mild cognitive impairment: Report of the Guideline Development, Dissemination, and Implementation Subcommittee of the American Academy of Neurology. Neurology. 2018;90(3):126–35. doi: 10.1212/WNL.0000000000004826 29282327.
4. Petersen RC, Doody R, Kurz A, Mohs RC, Morris JC, Rabins PV, et al. Current concepts in mild cognitive impairment. Arch Neurol. 2001;58(12):1985–92. doi: 10.1001/archneur.58.12.1985 11735772.
5. Albert MS, DeKosky ST, Dickson D, Dubois B, Feldman HH, Fox NC, et al. The diagnosis of mild cognitive impairment due to Alzheimer's disease: recommendations from the National Institute on Aging-Alzheimer's Association workgroups on diagnostic guidelines for Alzheimer's disease. Alzheimers Dement. 2011;7(3):270–9. doi: 10.1016/j.jalz.2011.03.008 21514249.
6. Bogardus ST Jr., Holmboe E, Jekel JF. Perils, pitfalls, and possibilities in talking about medical risk. JAMA. 1999;281(11):1037–41. doi: 10.1001/jama.281.11.1037 10086441.
7. Lipkus IM. Numeric, verbal, and visual formats of conveying health risks: suggested best practices and future recommendations. Med Decis Making. 2007;27(5):696–713. doi: 10.1177/0272989X07307271 17873259.
8. Grill JD, Apostolova LG, Bullain S, Burns JM, Cox CG, Dick M, et al. Communicating mild cognitive impairment diagnoses with and without amyloid imaging. Alzheimers Res Ther. 2017;9(1):35. doi: 10.1186/s13195-017-0261-y 28472970.
9. Portet F, Ousset PJ, Visser PJ, Frisoni GB, Nobili F, Scheltens P, et al. Mild cognitive impairment (MCI) in medical practice: a critical review of the concept and new diagnostic procedure. Report of the MCI Working Group of the European Consortium on Alzheimer's Disease. J Neurol Neurosurg Psychiatry. 2006;77(6):714–8. doi: 10.1136/jnnp.2005.085332 16549412.
10. Bocchetta M, Galluzzi S, Kehoe PG, Aguera E, Bernabei R, Bullock R, et al. The use of biomarkers for the etiologic diagnosis of MCI in Europe: an EADC survey. Alzheimers Dement. 2015;11(2):195–206 e1. doi: 10.1016/j.jalz.2014.06.006 25150733.
11. de Wilde A, van Maurik IS, Kunneman M, Bouwman F, Zwan M, Willemse EA, et al. Alzheimer's biomarkers in daily practice (ABIDE) project: Rationale and design. Alzheimers Dement (Amst). 2017;6:143–51. doi: 10.1016/j.dadm.2017.01.003 28239639.
12. Visser LNC, Kunneman M, Murugesu L, van Maurik I, Zwan M, Bouwman FH, et al. Clinician-patient communication during the diagnostic workup: The ABIDE project. Alzheimer's & Dementia: Diagnosis, Assessment & Disease Monitoring. 2019;11:520–8. doi: 10.1016/j.dadm.2019.06.001 31388556
13. Hsieh HF, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res. 2005;15(9):1277–88. doi: 10.1177/1049732305276687 16204405
14. Kunneman M, Pel-Littel R, Bouwman FH, Gillissen F, Schoonenboom NSM, Claus JJ, et al. Patients' and caregivers' views on conversations and shared decision making in diagnostic testing for Alzheimer's disease: The ABIDE project. Alzheimers Dement (N Y). 2017;3(3):314–22. doi: 10.1016/j.trci.2017.04.002 29067338.
15. Kunneman M, Smets EMA, Bouwman FH, Schoonenboom NSM, Zwan MD, Pel-Littel R, et al. Clinicians' views on conversations and shared decision making in diagnostic testing for Alzheimer's disease: The ABIDE project. Alzheimers Dement (N Y). 2017;3(3):305–13. doi: 10.1016/j.trci.2017.03.009 29067337.
16. Gomersall T, Astell A, Nygard L, Sixsmith A, Mihailidis A, Hwang A. Living With Ambiguity: A Metasynthesis of Qualitative Research on Mild Cognitive Impairment. Gerontologist. 2015;55(5):892–912. doi: 10.1093/geront/gnv067 26315317.
17. Gomersall T, Smith SK, Blewett C, Astell A. 'It's definitely not Alzheimer's': Perceived benefits and drawbacks of a mild cognitive impairment diagnosis. Br J Health Psychol. 2017;22(4):786–804. doi: 10.1111/bjhp.12255 28628736.
18. Werner P, Karnieli-Miller O, Eidelman S. Current knowledge and future directions about the disclosure of dementia: a systematic review of the first decade of the 21st century. Alzheimers Dement. 2013;9(2):e74–88. doi: 10.1016/j.jalz.2012.02.006 23098912.
19. Kissel EC, Carpenter BD. It's all in the details: physician variability in disclosing a dementia diagnosis. Aging Ment Health. 2007;11(3):273–80. Epub 2007/06/15. doi: 10.1080/13607860600963471 17558578.
20. Peel E. Diagnostic communication in the memory clinic: a conversation analytic perspective. Aging Ment Health. 2015;19(12):1123–30. Epub 2015/02/04. doi: 10.1080/13607863.2014.1003289 25647148.
21. Richtlijn diagnostiek en behandeling van dementie—Addendum Mild Cognitive Impairment (MCI). Utrecht: Kennisinstituut van de Federatie Medisch Specialisten, 2017.
22. Jack CR Jr, Bennett DA, Blennow K, Carrillo MC, Dunn B, Haeberlein SB, et al. NIA-AA Research Framework: Toward a biological definition of Alzheimer's disease. Alzheimers Dement. 2018;14(4):535–62. doi: 10.1016/j.jalz.2018.02.018 29653606.
23. van Maurik IS, Zwan MD, Tijms BM, Bouwman FH, Teunissen CE, Scheltens P, et al. Interpreting Biomarker Results in Individual Patients With Mild Cognitive Impairment in the Alzheimer's Biomarkers in Daily Practice (ABIDE) Project. JAMA Neurol. 2017;74(12):1481–91. doi: 10.1001/jamaneurol.2017.2712 29049480.
24. Mishel MH. Reconceptualization of the uncertainty in illness theory. Image J Nurs Sch. 1990;22(4):256–62. Epub 1990/01/01. doi: 10.1111/j.1547-5069.1990.tb00225.x 2292449.
25. Hillen MA, Gutheil CM, Smets EMA, Hansen M, Kungel TM, Strout TD, et al. The evolution of uncertainty in second opinions about prostate cancer treatment. Health Expect. 2017;20(6):1264–74. Epub 2017/05/19. doi: 10.1111/hex.12566 28521078.
26. Lakin JR, Jacobsen J. Softening Our Approach to Discussing Prognosis. JAMA Intern Med. 2019;179(1):5–6. Epub 2018/11/20. doi: 10.1001/jamainternmed.2018.5786 30453318.
27. Kutner JS, Steiner JF, Corbett KK, Jahnigen DW, Barton PL. Information needs in terminal illness. Soc Sci Med. 1999;48(10):1341–52. Epub 1999/06/16. doi: 10.1016/s0277-9536(98)00453-5 10369435.
28. Fruijtier AD, Visser LNC, van Maurik IS, Zwan MD, Bouwman FH, van der Flier WM, et al. ABIDE Delphi study: topics to discuss in diagnostic consultations in memory clinics. Alzheimers Res Ther. 2019;11(1):77. Epub 2019/09/02. doi: 10.1186/s13195-019-0531-y 31472676.
29. Joosten-Weyn Banningh L, Vernooij-Dassen M, Rikkert MO, Teunisse JP. Mild cognitive impairment: coping with an uncertain label. Int J Geriatr Psychiatry. 2008;23(2):148–54. doi: 10.1002/gps.1855 17578843.
30. van der Flier WM, Kunneman M, Bouwman FH, Petersen RC, Smets EMA. Diagnostic dilemmas in Alzheimer's disease: Room for shared decision making. Alzheimers Dement (N Y). 2017;3(3):301–4. doi: 10.1016/j.trci.2017.03.008 29067336.
31. Frisoni GB, Boccardi M, Barkhof F, Blennow K, Cappa S, Chiotis K, et al. Strategic roadmap for an early diagnosis of Alzheimer's disease based on biomarkers. Lancet Neurol. 2017;16(8):661–76. doi: 10.1016/S1474-4422(17)30159-X 28721928.
32. Rhodius-Meester HFM, Liedes H, Koikkalainen J, Wolfsgruber S, Coll-Padros N, Kornhuber J, et al. Computer-assisted prediction of clinical progression in the earliest stages of AD. Alzheimers Dement (Amst). 2018;10:726–36. doi: 10.1016/j.dadm.2018.09.001 30619929.
33. van Maurik IS, Visser LNC, Pel-Littel RE, van Buchem MM, Zwan MD, Kunneman M, et al. Development and Usability of ADappt: Web-Based Tool to Support Clinicians, Patients, and Caregivers in the Diagnosis of Mild Cognitive Impairment and Alzheimer Disease. JMIR Form Res. 2019;3(3):e13417. Epub 2019/07/10. doi: 10.2196/13417 31287061.
34. Hagerty RG, Butow PN, Ellis PM, Dimitry S, Tattersall MH. Communicating prognosis in cancer care: a systematic review of the literature. Ann Oncol. 2005;16(7):1005–53. doi: 10.1093/annonc/mdi211 15939716.
35. van der Flier WM, Scheltens P. Amsterdam Dementia Cohort: Performing Research to Optimize Care. J Alzheimers Dis. 2018;62(3):1091–111. Epub 2018/03/23. doi: 10.3233/JAD-170850 29562540.
36. Roberts R, Knopman DS. Classification and epidemiology of MCI. Clin Geriatr Med. 2013;29(4):753–72. Epub 2013/10/08. doi: 10.1016/j.cger.2013.07.003 24094295.
37. Alzheimer’s Association. Alzheimer's Association Report: 2019 Alzheimer’s disease facts and figures. Alzheimers Dement 2019;15(3):321–87. doi: 10.1016/j.jalz.2019.01.010
Článek vyšel v časopise
PLOS One
2020 Číslo 1
- Pomohou nám s detekcí karcinomu plic i včely?
- Duševní onemocnění se u teenagerů přenáší v rámci školní třídy
- Od kostiček k lidské kůži. Jak si postavit 3D biotiskárnu?
- Řekněte mi, co jíte, a já vám řeknu, jaká je úroveň vaší kognice
- Umělá inteligence v mozkovém implantátu pomáhá muži po mrtvici s dvojjazyčnou konverzací
Nejčtenější v tomto čísle
- Severity of misophonia symptoms is associated with worse cognitive control when exposed to misophonia trigger sounds
- Chemical analysis of snus products from the United States and northern Europe
- Calcium dobesilate reduces VEGF signaling by interfering with heparan sulfate binding site and protects from vascular complications in diabetic mice
- Effect of Lactobacillus acidophilus D2/CSL (CECT 4529) supplementation in drinking water on chicken crop and caeca microbiome
Zvyšte si kvalifikaci online z pohodlí domova
Všechny kurzy