Assessing What Matters to People Affected by Alzheimer's Disease: A Quantitative Analysis.
Alzheimer’s disease
Caregiver
Clinical meaningfulness
Outcomes
Patient
Preference
Value
Journal
Neurology and therapy
ISSN: 2193-8253
Titre abrégé: Neurol Ther
Pays: New Zealand
ID NLM: 101637818
Informations de publication
Date de publication:
Apr 2023
Apr 2023
Historique:
received:
20
11
2022
accepted:
23
01
2023
medline:
11
2
2023
pubmed:
11
2
2023
entrez:
10
2
2023
Statut:
ppublish
Résumé
In this phase of the ongoing What Matters Most study series, designed to evaluate concepts that are meaningful to people affected by Alzheimer's disease (AD), we quantified the importance of symptoms, impacts, and outcomes of AD to people at risk for or with AD and care partners of people with AD. We administered a web-based survey to individuals at risk for or with AD (Group 1: unimpaired cognition with evidence of AD pathology; Group 2: AD risk factors and subjective cognitive complaints/mild cognitive impairment; Group 3: mild AD) and to care partners of individuals with moderate AD (Group 4) or severe AD (Group 5). Respondents rated the importance of 42 symptoms, impacts, and outcomes on a scale ranging from 1 ("not at all important") to 5 ("extremely important"). Among the 274 respondents (70.4% female; 63.1% white), over half of patient respondents rated all 42 items as "very important" or "extremely important," while care partners rated fewer items as "very important" or "extremely important." Among the three patient groups, the minimum (maximum) mean importance rating for any item was 3.4 (4.6), indicating that all items were at least moderately to very important. Among care partners of people with moderate or severe AD, the minimum (maximum) mean importance rating was 2.1 (4.4), indicating that most items were rated as at least moderately important. Overall, taking medications correctly, not feeling down or depressed, and staying safe had the highest importance ratings among both patients and care partners, regardless of AD phase. Concepts of importance to individuals affected by AD go beyond the common understanding of "cognition" or "function" alone, reflecting a desire to maintain independence, overall physical and mental health, emotional well-being, and safety. Preservation of these attributes may be key to understanding whether interventions deliver clinically meaningful outcomes.
Identifiants
pubmed: 36763306
doi: 10.1007/s40120-023-00445-0
pii: 10.1007/s40120-023-00445-0
pmc: PMC10043143
doi:
Types de publication
Journal Article
Langues
eng
Pagination
505-527Informations de copyright
© 2023. The Author(s).
Références
Aisen PS, Cummings J, Jack CR Jr, Morris JC, Sperling R, Frolich L, et al. On the path to 2025: understanding the Alzheimer’s disease continuum. Alzheimers Res Ther. 2017;9(1):60. https://doi.org/10.1186/s13195-017-0283-5 .
doi: 10.1186/s13195-017-0283-5
pubmed: 28793924
pmcid: 5549378
Insel PS, Weiner M, Mackin RS, Mormino E, Lim YY, Stomrud E, et al. Determining clinically meaningful decline in preclinical Alzheimer disease. Neurology. 2019;93(4):e322–33. https://doi.org/10.1212/WNL.0000000000007831 .
doi: 10.1212/WNL.0000000000007831
pubmed: 31289148
pmcid: 6669933
Hartry A, Aldhouse NVJ, Al-Zubeidi T, Sanon M, Stefanacci RG, Knight SL. The conceptual relevance of assessment measures in patients with mild/mild-moderate Alzheimer’s disease. Alzheimers Dement (Amst). 2018;10:498–508. https://doi.org/10.1016/j.dadm.2018.07.006 .
doi: 10.1016/j.dadm.2018.07.006
pubmed: 30320202
DiBenedetti DB, Slota C, Wronski SL, Vradenburg G, Comer M, Callahan LF, et al. Assessing what matters most to patients with or at risk for Alzheimer’s and care partners: a qualitative study evaluating symptoms, impacts, and outcomes. Alzheimers Res Ther. 2020;12(1):90. https://doi.org/10.1186/s13195-020-00659-6 .
doi: 10.1186/s13195-020-00659-6
pubmed: 32731886
pmcid: 7393916
Hauber B, DiBenedetti D, Vradenburg G, Callahan L, Potashman M, Krasa H, et al. Identifying what matters to people with and at risk for Alzheimer's disease and their care partners: concept elicitation and item development. Presented at the 12th Clinical Trials in Alzheimer's Disease Meeting; 4 Dec–7 Dec 2019. San Diego, California.
Gordon MF, Lenderking WR, Duhig A, Chandler J, Lundy JJ, Miller DS, et al. Development of a patient-reported outcome instrument to assess complex activities of daily living and interpersonal functioning in persons with mild cognitive impairment: the qualitative research phase. Alzheimers Dement. 2016;12(1):75–84. https://doi.org/10.1016/j.jalz.2015.04.008 .
doi: 10.1016/j.jalz.2015.04.008
pubmed: 26079412
Jutten RJ, Peeters CFW, Leijdesdorff SMJ, Visser PJ, Maier AB, Terwee CB, et al. Detecting functional decline from normal aging to dementia: development and validation of a short version of the Amsterdam IADL Questionnaire. Alzheimers Dement (Amst). 2017;8:26–35. https://doi.org/10.1016/j.dadm.2017.03.002 .
doi: 10.1016/j.dadm.2017.03.002
pubmed: 28462387
Tochel C, Smith M, Baldwin H, Gustavsson A, Ly A, Bexelius C, et al. What outcomes are important to patients with mild cognitive impairment or Alzheimer’s disease, their caregivers, and health-care professionals? A systematic review. Alzheimers Dement (Amst). 2019;11:231–47. https://doi.org/10.1016/j.dadm.2018.12.003 .
doi: 10.1016/j.dadm.2018.12.003
pubmed: 30906845
Dean K, Wilcock G. Living with mild cognitive impairment: the patient’s and carer’s experience. Int Psychogeriatr. 2012;24(6):871–81. https://doi.org/10.1017/S104161021100264X .
doi: 10.1017/S104161021100264X
pubmed: 22251799
Rockwood K, Graham JE, Fay S, Investigators A. Goal setting and attainment in Alzheimer’s disease patients treated with donepezil. J Neurol Neurosurg Psychiatry. 2002;73(5):500–7. https://doi.org/10.1136/jnnp.73.5.500 .
doi: 10.1136/jnnp.73.5.500
pubmed: 12397141
pmcid: 1738123
Barrios PG, Gonzalez RP, Hanna SM, Lunde AM, Fields JA, Locke DE, et al. Priority of treatment outcomes for caregivers and patients with mild cognitive impairment: preliminary analyses. Neurol Ther. 2016;5(2):183–92. https://doi.org/10.1007/s40120-016-0049-1 .
doi: 10.1007/s40120-016-0049-1
pubmed: 27506698
pmcid: 5130916
Beard RL, Fetterman DJ, Wu B, Bryant L. The two voices of Alzheimer’s: attitudes toward brain health by diagnosed individuals and support persons. Gerontologist. 2009;49(Suppl 1):S40–9. https://doi.org/10.1093/geront/gnp083 .
doi: 10.1093/geront/gnp083
pubmed: 19525216
Ropacki MT, Hannesdottir K, Hendrix S, Gordon MF, Stephenson D, Coons SJ, et al. Clinically meaningful outcomes in early Alzheimer disease: a consortia-driven approach to identifying what matters to patients. Ther Innov Regul Sci. 2017;51(3):380–90. https://doi.org/10.1177/2168479016689712 .
doi: 10.1177/2168479016689712
pubmed: 30231712
Watson J, Saunders S, Muniz Terrera G, Ritchie C, Evans A, Luz S, et al. What matters to people with memory problems, healthy volunteers and health and social care professionals in the context of developing treatment to prevent Alzheimer’s dementia? A qualitative study. Health Expect. 2019;22(3):504–17. https://doi.org/10.1111/hex.12876 .
doi: 10.1111/hex.12876
pubmed: 30809895
pmcid: 6543163
Hartry A, Menne H, Wronski S, Paulson R, Callahan L, Potashman M, et al. Evaluation of what matters most in existing clinical outcomes assessments in Alzheimer's Disease. Presented at the Alzheimer's Association Virtual International Conference; 27 Jul–30 Jul 2020.