Measuring Quality of Life in Persons with Dementia
Notice bibliographique
Résumé
Introduction: Dementia is a debilitating health condition affecting all aspects of an individual’s well-being. Quality of life (QOL) and health related quality of life (HRQOL) assessments play a large role in understanding the limitations within the patients’ lifestyle and helping care providers manage their needs better. Therefore, our aims for this thesis were twofold: 1. Explore the symptoms, behaviors, or activities deemed as priorities by caregivers for monitoring dementia progression, impact of treatment, or exploring alternative care, and 2. Examine the measurement properties of QOL and HRQOL measures used for people with dementia living in the community. Methods: For the first aim, a qualitative descriptive study was performed with caregivers of individuals living with dementia. Caregivers from various regions in Canada were enlisted, and virtual listening sessions took place between November 2022 and January 2023. Open-ended questions were employed to prompt participants to express their viewpoints. For the second aim, a systematic review guided by COsensus-based Standards for the selection of health Measurement Instruments (COSMIN) was performed to identify literature surrounding measurement properties of QOL and HRQOL measures used in community-dwelling adults with a diagnosis of dementia. A search was performed through four databases (Ovid MEDLINE, EMBASE, CINAHL, and PsychInfo) to identify literature published up until June 2022, followed by abstract and title screening and full-text review, which was performed in duplicate. Measurement properties extracted included structural validity, internal consistency, reliability (test-retest and inter-rater reliability), construct validity, and responsiveness. Risk of bias assessments and quality assessments were also performed for all identified QOL and HRQOL measures. Results: Through the listening sessions, we identified that mobility limitations, social interactions, emotions, feeding behaviors, cognitive difficulties and extrinsic factors were priority topics that caregivers wanted to highlight when assessing QOL for people with dementia. There were 13 dementia-specific and generic QOL and HRQOL measures included in the systematic review. Results showed varying quality of evidence for each of the measures with many having a moderate to very low score for some of the measurement properties. Conclusion: The first study showed dementia caregivers’ perspectives on how routine activities, mobility, social interactions, and behaviors, are important pillars of QOL and should be assessed in clinical and research settings for individuals living with dementia. The second study highlighted the importance of rigorously testing QOL instruments in order to provide accurate measurements when evaluating health concerns and impact of therapy. QOL measures can help researchers and healthcare providers obtain a comprehensive assessment of the individual they are treating.
Récupéré en direct depuis OpenAlex et désinversé. Les résumés ne sont pas conservés dans cette base de données : les index inversés représentent 8,6 Go des 9,3 Go de texte de la base, et le serveur dispose de 13 Go libres.
Comment cette classification a été obtenuedéplier
Prédiction machine sur la base complète
Imitation des enseignantsNi prévalence calibrée, ni vérité terrain. Validation humaine à venir. Le volet Gemma est une étiquette directe du modèle pour chaque travail de la base, lue sur la notice réduite au titre. Le volet Codex est un classifieur appris des 10 348 étiquettes directes de Codex et calibré sur les taux pondérés de l'échantillon; les champs sans appui suffisant ne portent aucun appel Codex. Le mode candidate est l'union des deux volets; le consensus est leur intersection. Ces sorties portent le statut machine_predicted_unvalidated et ne sont pas des étiquettes humaines.
Scores du classifieur distillé par catégorie (deux têtes)
| Catégorie | Codex | Gemma |
|---|---|---|
| Métarecherche | 0,012 | 0,037 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,000 |
| Méta-épidémiologie (sens large) | 0,001 | 0,001 |
| Bibliométrie | 0,006 | 0,007 |
| Études des sciences et des technologies | 0,001 | 0,001 |
| Communication savante | 0,002 | 0,002 |
| Science ouverte | 0,001 | 0,001 |
| Intégrité de la recherche | 0,001 | 0,001 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,002 | 0,000 |
Scores machine (provisoires)
Les deux têtes enseignantes du modèle étudiant, lues sur ce travail. Un score ordonne la base pour la relecture; il n'affirme jamais une catégorie, et le statut de validation accompagne chaque rangée tel quel.
Scores de référence d'un modèle non mature (critères de maturité non atteints, 7 itérations). Un score ordonne; il n'affirme jamais une catégorie.
score_only:v0-immature-baseline · tel quel depuis la passe de notation : score_only signifie que le nombre peut ordonner les travaux, et qu'aucune étiquette de catégorie n'en découleClassification
machine, non validéePrédiction automatique; un appel candidat d’une seule source (Gemma direct ou Codex distillé), pas un consensus.
Le détail, modèle par modèle et score par score, se trouve en fin de page sous « Comment cette classification a été obtenue ».