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47/100

✓ Peer-reviewed alzhub usefulness score 47 out of 100. End-of-life care

Topic: Risk, prevention and care in population studies

Eighteen members of the public-including patients, carers, and individuals with lived experience of both roles-along with two local board members and one representative from a statutory health and social care body, participated and were actively involved in developing the framework and co-producing outputs through structured small-group discussions. Key findings highlighted the value of using clear, accessible, and culturally sensitive formats-such as short films and infographics-to reframe public understanding of palliative care as a holistic approach that addresses complex needs beyond just end-of-life care. Participants emphasised the importance of using insights from patient-centred outcomes and Patient-Reported outcome (PRO) data to build workforce capacity, improve services, and strengthen the connection between clinical and personal outcomes to maximise impact. As part of the study, we co-produced two resources that applied this framework in practice, demonstrating its potential to support more effective communication and public engagement. While based on COVID-19 outcome data, the co-produced framework and resources were developed to support communication that is relevant across broader palliative care settings. This study found that communication of patient-centred outcomes and Patient-Reported outcome (PRO) evidence can be strengthened through meaningful patient and public involvement and engagement (PPIE). This approach helps to reframe public understanding of palliative care, highlighting its broader relevance beyond end-of-life settings. The findings show how PPIE can amplify the impact of patient-centred research by engaging wider audiences, promoting timely access to care, and supporting better use of data. While developed in the context of palliative care, the framework offers transferable strategies for communicating complex outcomes in other often misunderstood or stigmatised areas, such as mental health and dementia care.

Key findings

Eighteen members of the public-including patients, carers, and individuals with lived experience of both roles-along with two local board members and one representative from a statutory health and social care body, participated and were actively involved in developing the framework and co-producing outputs through structured small-group discussions.
Key findings highlighted the value of using clear, accessible, and culturally sensitive formats-such as short films and infographics-to reframe public understanding of palliative care as a holistic approach that addresses complex needs beyond just end-of-life care.
Participants emphasised the importance of using insights from patient-centred outcomes and Patient-Reported outcome (PRO) data to build workforce capacity, improve services, and strengthen the connection between clinical and personal outcomes to maximise impact.
As part of the study, we co-produced two resources that applied this framework in practice, demonstrating its potential to support more effective communication and public engagement.
While based on COVID-19 outcome data, the co-produced framework and resources were developed to support communication that is relevant across broader palliative care settings.

Why it matters

This co-design study with 18 members of the public developed a framework to communicate patient-centred outcomes in palliative care using clear, accessible formats such as short films and infographics. It found that communication of patient-centred outcomes and Patient-Reported outcome evidence can be strengthened through meaningful patient and public involvement.

Study details

Study designcohort study
Evidence strengthModerate

How this study scored 47/100

Published in a peer-reviewed journal, and it is a cohort study following people over time. Scored zero for sample size, effect reported, studied in people and randomised / blinded because the record does not state it.

Component	Points	Why
Journal tier	7 / 10	Tier 3 — peer-reviewed journal (Journal of Patient-Reported Outcomes)
Journal's citation record	0 / 4	Journal of Patient-Reported Outcomes: journal h-index 54 (OpenAlex, 2026-10-29)
Study design	7 / 12	A cohort study following people over time
Strength of evidence	3 / 5	Rated “moderate” in our summary
Peer-review validation	10 / 10	Peer-reviewed. Published as an article in a named peer-reviewed journal.
How recent	5 / 5	2026 — within 1 year(s) of the newest study here
Sample size	0 / 4	Participant count not stated — scores zero (not stated in the record — scored 0)
Effect reported	0 / 3	No effect size reported — scores zero (not stated in the record — scored 0)
Studied in people	0 / 3	Not stated whether this was studied in people — scores zero (not stated in the record — scored 0)
Randomised / blinded	0 / 2	No randomisation or blinding stated — scores zero (not stated in the record — scored 0)
Times cited	1 / 7	Cited 1 times (OpenAlex, 2026-10-10)
Citations per year	0 / 5	0.5 citations a year over 2 year(s) since 2026
Impact for its field and year	3 / 6	Cited 6.4× 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 1 times in 2024–2026 (2026 still in progress; OpenAlex)
Senior author's track record	4 / 4	Last-listed author Irene J Higginson: h-index 119 (OpenAlex, whole career)
Institution's track record	1 / 3	King's College London: institution h-index 1,348 (OpenAlex)
Multi-centre collaboration	2 / 3	OpenAlex lists 4 institution(s) in 1 country
Indexed in PubMed	2 / 2	Indexed in PubMed (PMID 41721998)
Free to read	2 / 2	Free to read
Total	47 / 100	—

What each of these 20 components measures, and what this score is not →

Read the original

Full text: free to read — OpenAlex lists this copy as free to read: the link above (checked 6 Feb 1020).

Cite this study APA, Vancouver, BibTeX · download .bib or .ris

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's author list ends in “et al.”, so not every author is named. Check the citation against the original before you use it.

APA 7th

Hocaoğlu, M., Oluyase, A. O., Smith, D., Kumar, R., Perman, S., Maddocks, M. M., et al. (2026). Co-designing a framework to communicate patient-centred outcomes in palliative care: involving patients and the public to reframe understanding. Journal of Patient-Reported Outcomes. https://doi.org/10.1186/s41687-026-01019-y

Vancouver

Hocaoğlu M, Oluyase AO, Smith D, Kumar R, Perman S, Maddocks MM, et al. Co-designing a framework to communicate patient-centred outcomes in palliative care: involving patients and the public to reframe understanding. Journal of Patient-Reported Outcomes. 2026. doi:10.1186/s41687-026-01019-y. PMID: 41721998.

BibTeX

@article{hocaoglu2026-41721998,
  author  = {Hocaoğlu, Mevhibe and Oluyase, Adejoke Obirenjeyi and Smith, Deb and Kumar, Rashmi and Perman, Sarah and Maddocks, Matthew M and Best, Sian and Nast, Chloe and others},
  title   = {{Co-designing a framework to communicate patient-centred outcomes in palliative care: involving patients and the public to reframe understanding}},
  journal = {Journal of Patient-Reported Outcomes},
  year    = {2026},
  doi     = {10.1186/s41687-026-01019-y},
  pmid    = {41721998},
  url     = {https://doi.org/10.1186/s41687-026-01019-y}
}

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