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Evaluating the pragmatic characteristics of advance care planning outcome measures in dementia clinical trials: A scoping review
Natalie C. Ernecoff, Kimberly Mournighan, Laura C. Hanson, Jennifer Gabbard, Isabella Cornea, Joan G. Carpenter, Mark McKone. Carolina Digital Repository (University of North Carolina at Chapel Hill), 2025-07-26
Topic: Risk, prevention and care in population studies
We 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. In 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.
Cite this study APA, Vancouver, BibTeX · download .bib or .ris
APA 7th
Ernecoff, N. C., Mournighan, K., Hanson, L. C., Gabbard, J., Cornea, I., Carpenter, J. G., et al. (2025). Evaluating the pragmatic characteristics of advance care planning outcome measures in dementia clinical trials: A scoping review. Carolina Digital Repository (University of North Carolina at Chapel Hill). https://doi.org/10.17615/sjc8-m169
Vancouver
Ernecoff NC, Mournighan K, Hanson LC, Gabbard J, Cornea I, Carpenter JG, et al. Evaluating the pragmatic characteristics of advance care planning outcome measures in dementia clinical trials: A scoping review. Carolina Digital Repository (University of North Carolina at Chapel Hill). 2025. doi:10.17615/sjc8-m169.
BibTeX
@article{ernecoff2025-638a6122,
author = {Ernecoff, Natalie C. and Mournighan, Kimberly and Hanson, Laura C. and Gabbard, Jennifer and Cornea, Isabella and Carpenter, Joan G. and McKone, Mark},
title = {{Evaluating the pragmatic characteristics of advance care planning outcome measures in dementia clinical trials: A scoping review}},
journal = {Carolina Digital Repository (University of North Carolina at Chapel Hill)},
year = {2025},
doi = {10.17615/sjc8-m169},
url = {https://doi.org/10.17615/sjc8-m169}
}
Built from the record alzhub holds for this paper, not looked up. Volume, issue and page numbers are not held in the record. The record names 7 authors; APA and Vancouver show the first six, BibTeX and the downloads carry all of them. Check the citation against the original before you use it.
Key findings
- 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.
Why it matters
This review of 21 randomized trials found that only 23% of the outcome measures used to test advance care planning in dementia were highly pragmatic, and most of these measured healthcare use rather than what matters to patients and care partners. The authors conclude that new outcome measures capturing the lived experience of people with dementia and their care partners are needed for trials embedded in routine care.
Study details
- Participants21
- Evidence strengthHigh
How this study scored 38/100
Published in a peer-reviewed journal. Scored zero for study design, effect reported and randomized / blinded because the record does not state it. We have no data on journal's citation record and senior author's track record, so those were left out: it earned 35 of the 92 points we could judge it on, which is 38 out of 100.
| Component | Points | Why |
|---|---|---|
| Journal tier | 7 / 10 | Tier 3 — peer-reviewed journal (Carolina Digital Repository (University of North Carolina at Chapel Hill)) |
| Journal's citation record | — / 4 | No journal record from OpenAlex — left out of this score |
| Study design | 0 / 12 | No study design recorded — scores zero, not guessed (not stated in the record — scored 0) |
| Strength of evidence | 5 / 5 | Rated “high” in our summary |
| Peer-review validation | 10 / 10 | Peer-reviewed. Published as an article in a named peer-reviewed journal. |
| How recent | 4 / 5 | 2025 — within 3 year(s) of the newest study here |
| Sample size | 1 / 4 | 21 participants |
| Effect reported | 0 / 3 | No effect size reported — scores zero (not stated in the record — scored 0) |
| Studied in people | 3 / 3 | Studied in people (participant count stated) |
| Randomized / blinded | 0 / 2 | No randomization or blinding stated — scores zero (not stated in the record — scored 0) |
| Times cited | 0 / 7 | Cited 0 times (OpenAlex, 2026-10-10) |
| Citations per year | 0 / 5 | 0.0 citations a year over 3 year(s) since 2025 |
| Impact for its field and year | 0 / 6 | Cited 0.0× the average for papers of its field and year (OpenAlex FWCI) |
| Cited by studies here | 0 / 6 | No other study in this library cites it |
| Still being cited | 0 / 4 | Cited 0 times in 2024–2026 (2026 still in progress; OpenAlex) |
| Senior author's track record | — / 4 | OpenAlex's profile for last-listed author Mark McKone holds only 4 work(s), too few to judge a track record — left out of this score |
| Institution's track record | 2 / 3 | University of North Carolina at Chapel Hill: institution h-index 1,674 (OpenAlex) |
| Multicenter collaboration | 0 / 3 | OpenAlex lists 1 institution(s) in 1 country — scores zero (affiliation lists can be incomplete) |
| Indexed in PubMed | 1 / 2 | Not in PubMed, but has a DOI |
| Free to read | 2 / 2 | Free to read |
| Points | 35 / 92 | Scored on 18 of 20 parts. We have no data for the rest, so they are left out: 35 of the 92 points we could judge it on is 38 out of 100. |
| Total | 38 / 100 | — |
What each of these 20 components measures, and what this score is not →
Read the original
- DOI: 10.17615/sjc8-m169
- Original source →
- Free full text: Carolina Digital Repository (University of North Carolina at Chapel Hill) →
Full text: free to read — OpenAlex lists this copy as free to read: the link above (checked 6 Feb 1020).
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