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.

Patients' evaluations of the quality of care: influencing factors and the importance of engagement.

AIMS: This paper reports a study exploring the process of patient evaluation and identifying the factors which influence this. BACKGROUND: Patient experiences of health care have become a central focus for researchers, policymakers, clinicians and patient groups in many countries. While surveys of patient experiences have become increasingly common internationally, concerns about the validity of concepts such as satisfaction have cast doubt on the utility of their findings. These concerns reflect our limited understanding of patient evaluation and the factors that can influence this process. METHODS: A qualitative design was adopted, using semi-structured interviews with a sample of outpatients in their homes in one county in England. In total, 41 patients participated in the study and were interviewed before their appointment. Of these patients, 37 were interviewed again after their appointment. Six of the latter were then re-interviewed 6 weeks after the appointment to explore whether evaluations had changed. FINDINGS: Patient evaluation was influenced by a number of factors, including gratitude, faith, loyalty, luck and equity. The overall effect was to prompt positive evaluation, even when care was poor. These factors should be accounted for in the interpretation of patient experiences surveys. Patient experiences were further influenced by their sense of engagement with the system. A negative sense of engagement could have a major impact on the patient, resulting in disappointment or fear and a desire to leave the health care system, and in a negative evaluation of a specific aspect of care. CONCLUSIONS: Engagement may provide a more appropriate indicator of negative experience than dissatisfaction. The influence of these factors should be considered in future attempts to develop more sensitive and appropriate methods of eliciting patient experiences.