Improving Dyspnoea Symptom Control of Patients in Palliative Care Using a Smart Patch-A Proof of Concept Study

Mallick, Mostafa Kamal; Biser, Sarah; Haridas, Aathira; Umesh, Vaishnavi; Tönsing, Olaf; Yari, Imrana Abdullahi; Ollenschläger, Malte; Heckel, Maria; Ostgathe, Christoph; Kluge, Felix; Eskofier, Bjoern M.; Steigleder, Tobias

doi:10.3389/fdgth.2021.765867

Cited by 2 publications

(1 citation statement)

References 28 publications

(29 reference statements)

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“…The use of proxies to help measure patient‐reported outcome measures also may hold some promise for PLWD if viewed as complementary rather than substitutive 66,67 . Emerging data capture methods such as natural language processing (NLP) to measure ACP documentation, patient portals to measure electronic PCROs along with wearable devices, smartphones, and artificial intelligence to help measure prognosis and patient‐related parameters may also yield future highly pragmatic outcome measures 51,68–72 . In ADRD pragmatic trials conducted in the home or community setting, a multi‐level approach will likely need to be considered for the collection of PCROs in the absence of healthcare records or administrative data collection methods 73 …”

Section: Discussionmentioning

confidence: 99%

Evaluating the pragmatic characteristics of advance care planning outcome measures in dementia clinical trials: A scoping review

Gabbard,

Carpenter,

Ernecoff

et al. 2023

J American Geriatrics Society

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BackgroundAdvance care planning (ACP) is a process that involves discussing a person's goals, values, and preferences; it is particularly important for persons living with dementia (PLWD) given that dementia is incurable and progressive. To ensure results that will impact real‐world practices, ACP outcome measures must be psychometrically strong, meaningful to key partners, and pragmatic to collect. Therefore, we conducted a scoping review of outcome measures utilized in ACP randomized controlled clinical trials (RCTs) enrolling PLWD or their care partners and evaluated their pragmatic characteristics.MethodsWe searched MEDLINE/PubMed, EMBASE, CINAHL, PsycINFO, and Web of Science for peer‐reviewed ACP RCTs enrolling PLWD or their care partners from 2011 to 2021. We abstracted characteristics of primary and secondary outcome measures, including pragmatic characteristics using an adapted Psychometric and Pragmatic Evidence Rating Scale and ACP outcome domains using the standardized ACP Outcome Framework (i.e., process, action, healthcare, or quality of care).ResultsWe included 21 ACP RCTs. Trials included 103 outcome measures (39 primary and 64 secondary), of which 11% measured process, 14% measured action, 49% measured healthcare, and 26% measured quality of care. Twenty‐four (23%) outcome measures were highly pragmatic, the majority of which (67%) reflected healthcare outcome measures. Sixty‐one (59%) outcomes were assessed as highly relevant to PLWD or their care partners. Only 20% (n = 21) of outcome measures were embedded into clinical practice. Most (62%) RCTs were conducted in nursing homes, and 33% were focused PLWD with advanced stage disease.ConclusionsIn RCTs testing ACP interventions to support PLWD, only 23% of outcome measures were highly pragmatic, and most of these measured healthcare utilizations. Outcome assessments were rarely integrated into the EHR during routine clinical care. New outcome measures that address the lived experience of PLWD and their care partners plus have high pragmatic characteristics are needed for embedded pragmatic clinical trials.

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Section: Discussionmentioning

confidence: 99%