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.
Prehabilitation in cancer care: patients' ability to prepare for major abdominal surgery Background: Patients' perspectives on standardised, multimodal prehabilitation programmes showed barriers to adherence. Further investigation of patients' ability to prepare is needed. Aim: To investigate what patients with cancer who were due to undergo major abdominal surgery actually were able to do when provided with preoperative, homebased, multimodal recommendations presented in a leaflet. Methods: Patients from the colorectal-or ovarian cancer centre, who were scheduled for major abdominal surgery, received a leaflet with preoperative recommendations. On a daily basis, the patients filled in what they had completed in relation to these recommendations, so that adherence could be investigated. Additionally, faceto-face interviews were conducted to evaluate patients' experiences of using the leaflet. Malterud's principles of systematic text condensation were used to analyse the interviews. A convergent design was used to merge the quantitative and qualitative data into a combined interpretation presented in the discussion. Results: A total of 53 patients returned a completed leaflet, and five patients were interviewed. In the combined interpretation, patients' ability to prepare was presented through four major domains. The domains were adherence and the importance of support, manageable actions leading to change, preparation in a broader perspective and impediments to preparation and to symptom relief. Conclusions: Patients prepared themselves in various ways, which were not limited to recommendations inspired by multimodal prehabilitation. Patients from the ovarian cancer centre increased their weekly exercise during the preoperative period, which indicates that the leaflet not only functioned as a data collection tool, but also motivated and supported the patients in prehabilitation-related actions. Patients' perspectives on prehabilitation need to be taken into account, when aiming to enhance patient-centredness and adherence.
Background: The value of using real-time patient-reported outcome (PRO) measures in cancer communication has gained attention both in the clinic and in research. Despite this, no internationally accepted guidelines or training programs for clinicians on how to engage in patient-centred communication based on PROs exist. Lack of training may complicate implementation and systematic use of PROs in the clinic. We aimed to develop a short and feasible manual and training session in PRO-based dialogue rooted in patient-centred communication, coined PROmunication. Methods: PROmunication was implemented in two studies using PROs in different clinical cancer settings. We interviewed clinicians twice during the development phase. First, adopting a clinical perspective, they provided ideas for content, length and structure of the training session and the manual. Second, they approved the draft of the manual with minor adjustments on how to document clinician-patient communication. The final version of the PROmunication tool was built on clinicians' input, theory on patientcentred communication, a literature review, and didactic considerations. Results: The one-page manual gave clinicians a brief and clear overview of how to prepare for, undergo and document a PRO-based consultation. Illustrations and verbal phrases were offered to operationalize and facilitate patient-centred communication. The training session included elements like evidence-based knowledge about the rationale, benefits and challenges of using PROs and comprised theory, experimental training and instructions for the use of the manual in clinical practice. Ad hoc training and feedback in the clinic followed the training session. Conclusions: This paper presents the development of a short, theory-driven manual and training session intended to support and engage clinicians in PRO-based dialogue leading to patient-centred communication. Further testing of the tool is necessary and adjustments may be required if the PROmunication tool should
Introduction: Colonoscopy remains the reference standard for diagnosing and monitoring colorectal cancer and for diagnosis and surveillance of inflammatory bowel disease. However, there is a limited knowledge of the patients' needs when undergoing colonoscopy and the challenges within in order to reduce the number of cancelled colonoscopies. The purpose of the study was to explore the experiences of undergoing bowel preparation and colonoscopy. Methods: The study was designed as a qualitative longitudinal interview study with an inductive research approach. Patients were considered for inclusion consecutively and selected based on the following criteria of variation: way of referral for colonoscopy (outpatient or screening), age and gender. The interviews were analyzed using qualitative content analysis, and results reported according to COREQ guidelines. Results: Based on the findings, three categories emerged: To weigh up participation, A greater challenge than expected, and Not so challenging after all. Throughout these categories, the experience of uncertainty was reported. Discussion: The process of undergoing bowel preparation and colonoscopy was influenced by uncertainty due to insufficient information. There is a need to strengthen the patientcentered care by adjusting the information to patient's needs to better support them in decision-making for participation, to better prepare them for the bowel preparation and to better prepare them for the procedure. In addition, it is vital that patients are provided with results of the colonoscopy that correspond to the timeframe specified in written information.
Magnesium oxide does not enhance the recovery of gastrointestinal function within the context of an evidence-based multimodal rehabilitation programme after open colonic surgery.
We investigated the perspectives of patients, relatives and health professionals on the drivers and barriers to patient involvement (PI) in the treatment of peritoneal carcinomatosis with cytoreductive surgery (CRS) and hyperthermic intraperitoneal chemotherapy (HIPEC). During 2016–2017, individual and focus group interviews were conducted with purposively selected participants during CRS and HIPEC, supplemented by field observations. This material was analysed using meaning condensation (Kvale). Fifteen patients, eight relatives and nine health professionals participated in 31 individual and two focus group interviews, supplemented by 37 observations. The findings were structured into themes concerning treatment decisions, organisation of pathways, knowledge of the patient and life during treatment. Deciding to treat was determined not only by preoperative biomedical information, personal preferences but also findings during surgery. This circumstance put the patients under mental pressure and affected their ability to process the offered information. They furthermore perceived the pathway as complex and occasionally unclear, leading them to attempt to coordinate transitions themselves. The study has highlighted barriers to, rather than drivers of, PI. To promote PI during comprehensive complex cancer surgery, we suggest that patients and relatives are offered patient‐centred care, such as support in posing questions, overview of their treatment pathway and coherent transitions.
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