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Barriers to obtaining consent in dementia research: implications for surrogate decision-making
Baskin SA, Morris J, Ahronheim JC, Meier DE, Morrison RS.. Journal of the American Geriatrics Society, 1998-03-01
Topic: Risk, prevention and care in population studies
Objective To identify barriers to informed consent in research involving subjects with advanced dementia. Design A randomized controlled clinical trial of palliative care approaches, compared with usual care, in subjects with advanced dementia who are hospitalized. Setting A large metropolitan teaching hospital. Participants All patients older than 65 years of age who have advanced dementia and a Functional Assessment Staging score of 6d to 7f and have been admitted to the hospital. Measurements Surrogates for all eligible subjects were approached for consent to enroll their family members in the trial. Reasons for refusal to enroll in the study were recorded and categorized as either informed refusal (i.e., the surrogate understood the research protocol but declined to give consent for participation) or as a barrier to informed consent (i.e., the surrogates could not participate in the informed consent process or there was no functional surrogate). Results Forty-nine percent of 146 eligible subjects could not be enrolled in the study. Only four surrogates refused consent for their family members. Of the remaining 68 patients, 41 eligible subjects' surrogates could not be engaged in the informed consent process, and 22 subjects did not have a functional surrogate to consent for research. Conclusions Absence of functional surrogate decision-makers is a major barrier to research and clinical decision-making for hospitalized patients with advanced dementia.
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APA 7th
Baskin, S. A., Morris, J., Ahronheim, J. C., Meier, D. E., & Morrison, R. S. (1998). Barriers to obtaining consent in dementia research: implications for surrogate decision-making. Journal of the American Geriatrics Society. https://doi.org/10.1111/j.1532-5415.1998.tb01039.x
Vancouver
Baskin SA, Morris J, Ahronheim JC, Meier DE, Morrison RS. Barriers to obtaining consent in dementia research: implications for surrogate decision-making. Journal of the American Geriatrics Society. 1998. doi:10.1111/j.1532-5415.1998.tb01039.x. PMID: 9514373.
BibTeX
@article{baskin1998-9514373,
author = {Baskin, S. A. and Morris, J. and Ahronheim, J. C. and Meier, D. E. and Morrison, R. S.},
title = {{Barriers to obtaining consent in dementia research: implications for surrogate decision-making}},
journal = {Journal of the American Geriatrics Society},
year = {1998},
doi = {10.1111/j.1532-5415.1998.tb01039.x},
pmid = {9514373},
url = {https://doi.org/10.1111/j.1532-5415.1998.tb01039.x}
}
Built from the record alzhub holds for this paper, not looked up. Volume, issue and page numbers are not held in the record. Check the citation against the original before you use it.
Key findings
- Design A randomized controlled clinical trial of palliative care approaches, compared with usual care, in subjects with advanced dementia who are hospitalized.
- Results Forty-nine percent of 146 eligible subjects could not be enrolled in the study.
Study details
- Participants68
- Evidence strengthHigh
How this study scored 50/100
Published in a peer-reviewed journal. Scored zero for study design, effect reported and randomised / blinded because the record does not state it. We have no data on journal's citation record, times cited, citations per year, impact for its field and year, cited by studies here, still being cited, senior author's track record, institution's track record and multi-centre collaboration, so those were left out: it earned 29 of the 58 points we could judge it on, which is 50 out of 100.
| Component | Points | Why |
|---|---|---|
| Journal tier | 7 / 10 | Tier 3 — peer-reviewed journal (Journal of the American Geriatrics Society) |
| 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 | 1 / 5 | 1998 — older than 20 years, still counted |
| Sample size | 1 / 4 | 68 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) |
| Randomised / blinded | 0 / 2 | No randomisation or blinding stated — scores zero (not stated in the record — scored 0) |
| Times cited | — / 7 | No citation count (not found in OpenAlex) — left out of this score |
| Citations per year | — / 5 | No citation count or no year — left out of this score |
| Impact for its field and year | — / 6 | No field-weighted citation impact (OpenAlex has none yet) — left out of this score |
| Cited by studies here | — / 6 | Not yet checked against this library's citation graph — left out of this score |
| Still being cited | — / 4 | No yearly citation counts — left out of this score |
| Senior author's track record | — / 4 | Senior author's record not available — left out of this score |
| Institution's track record | — / 3 | No institution listed in OpenAlex — left out of this score |
| Multi-centre collaboration | — / 3 | Institutions not listed — left out of this score |
| Indexed in PubMed | 2 / 2 | Indexed in PubMed (PMID 9514373) |
| Free to read | 0 / 2 | Behind a paywall — scores zero |
| Points | 29 / 58 | Scored on 11 of 20 parts. We have no data for the rest, so they are left out: 29 of the 58 points we could judge it on is 50 out of 100. |
| Total | 50 / 100 | — |
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