Quality of reporting on patient and public involvement within surgical research: a systematic review.

BACKGROUND: Recruitment difficulties are a well-reported concern in surgical literature, which may be improved by patient and public involvement (PPI). PPI within research has been defined as being conducted "with" or "by" patients or members of the public rather than being "about" or "for" them. However, the extent to which PPI is used within surgical research is unknown. METHODS: Surgical literature was systematically reviewed using EMBASE, MEDLINE, PsycINFO, the Cochrane Central Register of Controlled Trials, and PubMed. Search terms related to (i) patients, (ii) involvement, (iii) perioperative care, and (iv) impact. Quality of PPI reporting was evaluated using the GRIPP (Guidance for Reporting Involvement of Patients and Public checklist and the guidelines developed by Wright and Foster. A patient representative advised on the purpose and analysis of this systematic review. RESULTS: Eight articles described PPI in surgical trials to improve the identification of research topics, study design, recruitment, retention, and data collection. Quality of PPI reporting was suboptimal, as none of the articles provided a clear account of how PPI was conceptualized. Training and support for patients, their involvement in dissemination, and a critique of the limitations of PPI were not reported. However, it was not clear whether this represents an underutilization of PPI or purely suboptimal reporting in surgery. CONCLUSIONS: There is a paucity of surgical research reporting upon PPI, and the quality of reporting is low. Further research to define appropriate standards for reporting on PPI activities may facilitate broadening the utilization and impact of PPI in surgical research.

Trial outcomes and information for clinical decision-making: a comparative study of opinions of health professionals.

BACKGROUND: Trials are robust sources of data for clinical practice; however, trial outcomes may not reflect what is important to communicate for decision-making. The study compared clinicians' views of outcomes to include in a core outcome set for colorectal cancer (CRC) surgery, with what clinicians considered important information for clinical practice (core information). METHODS: Potential outcome/information domains were identified through systematic literature reviews, reviews of hospital information leaflets and interviews with patients. These were organized into six categories and used to design a questionnaire survey that asked surgeons and nurses from a sample of CRC centers to rate the importance of each domain as an outcome or as information on a nine-point Likert scale. Respondents were re-surveyed (round 2) following group feedback (Delphi methods). Comparisons were made by calculating the difference in mean scores between the outcomes and information domains, and paired t tests were used to explore the difference between mean scores of the six outcome/information categories. RESULTS: Data sources identified 1216 outcome/information items for CRC surgery that informed a 94-item questionnaire. First-round questionnaires were returned from 63/81 (78 %) of centers. Clinicians rated 76/94 (84 %) domains of higher importance to measure in trials than information to communicate to patients in round 1. This was reduced to 24/47 (51 %) in round 2. The greatest difference was evident in domains regarding survival, which was rated much more highly as a trial outcome than an important piece of information for decision-making (difference in mean 2.3, 95 % CI 1.9 to 2.8, p <0.0001). Specific complications and quality-of-life domains were rated similarly (difference in mean 0.18, 95 % CI -0.1 to 0.4, p = 0.2 and difference in mean 0.2, 95 % CI -0.1 to 0.5, p = 0.2, respectively). CONCLUSIONS: Whilst clinicians want to measure key outcomes in trials, they rate these as less important to communicate in decision-making with patients. This discrepancy needs to be explored and addressed to maximize the impact of trials on clinical practice.