Background: The interest in patient and public involvement (PPI) in health research is increasing. However, the experience and knowledge of PPI throughout the entire research process and especially in the analysis are limited. We explored ways to embrace the perspectives of patients in a research process, and the impact and challenges our collaboration has had on patients, researchers, and the research outcomes. Methods: This is an explorative single case study of a Danish, clinical, controlled intervention trial and a nested intervention fidelity study included herein. Five patient representatives with metastatic melanoma were part of designing, undertaking and disseminating the trial where the effect of using patient-reported outcome (PRO)measures as a dialogue tool in the patient-physician consultation was tested. In the fidelity study, audio-recorded consultations were analyzed after training in the Verona Coding Definitions of Emotional Sequences (VR-CoDES). Results were jointly disseminated at an international scientific conference. The outcomes, impact, and challenges were explored through a workshop. Results: In the design phase, we selected PRO-measures and validated the dialogue tool. The information sheet was adjusted according to the patients' suggestions. The analysis of the fidelity study showed that patients and researchers had a high consensus on the coding of emotional cues and concerns. The patients contributed with a new vocabulary and perspective on the dialogue, and they validated the results. PPI caused considerations related to emotional (sadness/sorrow and existential thoughts), administrative (e.g. arranging meetings, balancing work and small talk) and intellectual (e.g. avoiding information harm, continuing activities despite the death of patients) investments. A limitation of the study was the lack of use of a solid evaluation tool to determine the impact of PPI.
To investigate the experiences, thoughts, and feelings that underlie and influence prehabilitation among cancer patients due to undergo major abdominal surgery.
Materials and methodsPrior to their surgery, sixteen patients with peritoneal carcinomatosis of colorectal or ovarian origin due to undergo major surgery received oral information and a leaflet with preoperative recommendations. They subsequently participated in individual, semi-structured interviews.Malterud's principles of systematic text condensation were used to analyse the interviews, and the concept of action competence inspired and framed the discussion.
ResultsAlthough the patients found themselves in an unpredictable and uncontrollable situation, they nevertheless knew what was important to them. These factors were contextualised in five themes that reflected the experiences, thoughts, and feelings that underlay and influenced their actions: 'Perception of preparation', 'The two-sided preoperative period', 'Home or facility-based prehabilitation', 'Stakeholders in prehabilitation', and 'Reasons for taking action'.
Conclusions 2The patients demonstrated action competence in relation to their preoperative preparation.However, in relation to the kind of prehabilitation that required lifestyle changes, their action competence needed to be developed and supported. To do so, it is necessary to ask questions that cover the patients' perspectives of the what, when, where, who, and why of prehabilitation.
Several aspects of HRQoL are impaired for a variable time after treatment for locally advanced or recurrence of rectal cancer. Larger prospective longitudinal studies are needed to provide further information regarding the effects of this extensive surgery on quality of life.
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