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Evolution of Patient and Public Involvement and Engagement in Health‐Related Research: A Concept Analysis

ABSTRACT

Aims

To clarify the definition and evolution of Patient and Public Involvement and Engagement (PPIE) and identify its attributes, antecedents, and consequences in health-related research.

Design

This study follows Rodgers' evolutionary concept analysis with a seven-step framework.

Methods

Datasets were searched using terms related to PPIE and key categories (i.e., attributes, antecedents, and consequences). Data were sourced from CINAHL, PsycInfo, Scopus, PubMed, and Web of Science covering publications from inception to October 31, 2024. Document titles, abstracts, and keywords were manually screened to identify relevant studies for full-text review.

Results

A total of 1751 documents were screened, resulting in 38 eligible studies included in the final analysis. PPIE has evolved from a narrow focus on patient inclusion and participation, where patients had minimal influence on research and researchers resisted sharing control of research, to a collaborative model emphasising sustained partnerships, shared contributions, equitable power distribution, and active involvement across research stages. This shift has been driven by research innovation, a growing emphasis on healthcare equity and patient-centred care, technological advances, and stakeholder advocacy (e.g., patients, funders, ethics committees). While PPIE enhances research relevance and impact, barriers, such as resource constraints, power imbalances, patient limited research capabilities and increased researcher workload persist. Facilitators, such as training programmes, standardised guidelines, flexible arrangements and transparent communication can enable meaningful partnerships.

Conclusion

The concept of PPIE is evolving toward greater clarity and consistency in research, positioning patients and the public as active, essential contributors rather than passive participants. Barriers and facilitators were identified to inform its utilisation in research.

Impact

This study clarifies the conceptual ambiguities of PPIE, informs theory development, and provides actionable insights. Healthcare and nursing researchers can draw on its findings to utilise PPIE to enhance collaborative and inclusive research practices that align with the needs of patients and the public.

Reporting Method

This study adheres to the PRISMA (2020) reporting guidelines for systematic reviews.

Patient or Public Contribution

One of our co-authors is a patient with lived experience of cancer, who contributed valuable comments and suggestions to enhance this paper.

Morphine for chronic breathlessness (MABEL) in the UK: a health economic evaluation of a multisite, parallel-group, dose titration, double-blind, randomised, placebo-controlled trial

Por: Atter · M. J. · Hall · P. · Evans · R. A. · Norrie · J. · Cohen · J. · Williams · B. · Chaudhuri · N. · Bajwah · S. · Higginson · I. · Pearson · M. · Currow · D. · Stewart · G. · Fallon · M. · Johnson · M.
Objectives

To compare costs and health consequences and to assess the cost-effectiveness of using low-dose oral long-acting morphine in people with chronic breathlessness.

Design

Within-trial planned cost-consequences and cost-effectiveness analysis of data from a multisite, parallel-group, double-blind, randomised, placebo-controlled trial of low-dose, long-acting morphine.

Setting

11 hospital outpatients across the UK.

Participants

Consenting adults with chronic breathlessness due to long-term cardiorespiratory conditions.

Intervention

5–10 mg two times a day oral long-acting morphine with a blinded laxative for 56 days.

Primary outcome measures

Mean and SD of healthcare resource use (HRU) by trial arm; mean differences and 95% CI of costs between trial arms.

Secondary outcome measures

Mean differences in 28- and 56-day quality-adjusted life years (QALYs based on EuroQol five-dimension five-level score), Short Form-six dimensional scores and ICEpop CAPability-Supportive Care Measure scores; cost-utility of long-acting morphine for chronic breathlessness.

Results

143 participants (75 morphine and 67 placebo) were randomised; 140 (90% power, males 66%, mean age 70.5 (SD 9.4)) formed the modified intention-to-treat population (participants receiving at least one dose of study medication). There were more inpatient and fewer outpatient services used by the morphine group versus the placebo. In the base-case analysis at 56 days, long-acting morphine was associated with similar mean per-patient costs and QALYs. There was an increase of £24 (95% CI –£395 to £552) and 0.002 (95% CI –0.004 to 0.008) QALYs. Hospitalisations were the main driver of cost differences. The corresponding incremental cost-effectiveness ratio was £12 000/QALY, with a probability of cost-effectiveness of 54% at a £20 000 willingness-to-pay threshold. In the scenario analysis that excluded costs of adverse events considered unrelated to long-acting morphine by site investigators and researchers, the probability of cost-effectiveness increased to 73%.

Conclusion

Oral morphine for chronic breathlessness is likely to be a cost-effective intervention provided adverse events are minimised, but the effect on outcome is small and cautious interpretation is warranted.

Trial registration number

ISRCTN87329095.

Association of multiple symptoms with sleep quality and duration: a cross-sectional population-based study of older men in Sweden

Por: Zeaiter · M. · Olsson · M. · Kochovska · S. · Currow · D. C. · Ekström · M.
Objective

To evaluate any association of the presence and severity of nine major symptoms (pain, tiredness, drowsiness, nausea, appetite, breathlessness, depression, anxiety, and perceived well-being) with sleep quality and duration in elderly men.

Design and setting

Cross-sectional analysis within the population-based VAScular and Chronic Obstructive Lung disease study (VASCOL) conducted in southern Sweden in 2019.

Participants

A total of 838 older men aged 73 years.

Measures

Severity of the symptoms was self-reported between 0 and 10 on a numerical rating scale. Breathlessness was also assessed using the Multidimensional Dyspnoea Profile and Dyspnoea-12. Sleep quality was reported on a 5-point Likert scale from ‘very well’ to ‘very bad’and sleep duration on a 7-point scale from ‘less than 4 hours’ to ‘more than 10 hours’. Associations of each symptom score with having worse sleep quality (‘bad’ or ‘very bad’) and/or shorter sleep duration (

Results

Of 838 men analysed, 11% had worse sleep quality, 8% had shorter sleep duration and 5% had both. Higher severity of each symptom was associated with worse sleep quality (adjusted odds ratios (aOR) ranging 1.12–1.61) and shorter sleep duration (aORs ranging 1.10–1.49).

Conclusions

A wide range of symptoms is associated with worse sleep quality and shorter sleep duration in elderly men, suggesting that clinicians should assess sleep when these symptoms are present and vice versa.

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