Effect of patient-reported outcomes as a dialogue-based tool in cancer consultations on patient self-management and health-related quality of life: a clinical, controlled trial.

BACKGROUND: With increased survival among patients with metastatic melanoma and limited time with health care providers, patients are expected to assume a more active role in managing their treatment and care. Activated patients have the knowledge, skills, and confidence to make effective solutions to self-manage health. The use of patient-reported outcomes (PRO) could have the potential to enhance patient activation. However, PRO-based interventions that facilitate an activation in patients with metastatic melanoma are lacking and warranted. MATERIAL AND METHODS: In this prospective non-randomized controlled, clinical trial, patients with metastatic melanoma were assigned to either the intervention (systematic feedback and discussion of PRO during consultation) given at one hospital or the control group (treatment as usual) if they received treatment from two other hospitals in Denmark. The primary outcome was the patient activation measure (PAM), which reflects self-management. Secondary outcomes were health-related quality of life (HRQoL), self-efficacy, and Patient-Physician interaction. Outcomes were measured at baseline, and after 3, 6, and 12 months. The analysis of the effect from baseline to 12 months employed mixed-effects modeling. RESULTS: Between 2017 and 2019, patients were allocated to either the intervention group (n = 137) or the control group (n = 142). We found no significant difference in the course of patient activation between the two groups over time. The course of HRQoL was statistically significantly improved by the intervention compared to the control group. Especially, females in the intervention group performed better than males. The other secondary outcomes were not improved by the intervention. CONCLUSION: The intervention did not improve knowledge, skills, and confidence for self-management for patients with metastatic melanoma. Neither did it improve coping self-efficacy nor perceived efficacy in Patient-Physician interaction. However, the results suggest that the intervention can have a significant impact on HRQoL and in particular social and emotional well-being among the females.

Patient-led follow-up reduces outpatient doctor visits and improves patient satisfaction. One-year analysis of secondary outcomes in the randomised trial Follow-Up after Rectal CAncer (FURCA).

BACKGROUND: FURCA (Follow-Up after Rectal Cancer) is a multi-centre randomised trial comparing patient-led follow-up with standard outpatient follow-up. This paper reports one-year follow-up data from the FURCA trial on selected secondary outcomes including type and number of contacts, patient-reported involvement and satisfaction with health care services during follow-up. MATERIAL AND METHODS: Patients with rectal cancer (stage < IV) from four Danish surgical centres were randomised (1:1) into intervention (education and self-referral to project nurse) or standard follow-up (routine clinical doctor visits). The present analysis involved data on hospital contacts during the first year after surgery, patient involvement and satisfaction measured at one year, and baseline patient-reported and clinical variables. RESULTS: Of 512 eligible patients, 168 were allocated to patient-led follow-up (intervention) and 168 to standard follow-up (control). The total number of hospital contacts in the intervention arm did not differ significantly from the number of contacts in the control arm (p = 0.44). More patients had ≥15 contacts in the intervention arm than in the control arm (p = 0.004). The total number of outpatient doctor visits was significantly lower in the intervention arm (p < 0.001). Patients in both arms rated involvement and satisfaction high; yet patients in the intervention arm scored significantly higher on two of six items regarding involvement and all five items regarding satisfaction. Of the 168 patients in the intervention arm, 43% made direct contact (self-referral) to the project nurse, and 14 of these patients (8%) had ≥4 contacts. The primary reason for self-referral was bowel dysfunction. DISCUSSION: The findings indicate the value of a patient-led follow-up program in terms of direct access and more individually tailored intervention based on patients' needs, with most tasks being managed by nurses. Patient-led follow-up came with improved patient-perceived involvement and satisfaction; thus, it was both acceptable and favourable for the patients.

What matters to you? An investigation of patients' perspectives on and acceptability of prehabilitation in major cancer surgery.

OBJECTIVE: To understand perspectives on and acceptability of prehabilitation among patients undergoing complex abdominal cancer surgery (cytoreductive surgery with or without hyperthermic intraperitoneal chemotherapy). METHODS: Seventy-nine patients admitted to a Danish colorectal or ovarian cancer centre participated in qualitative semi-structured interviews and/or registered their prehabilitation activities based on preoperative recommendations presented in a leaflet. Malterud's principles of systematic text condensation were used to analyse the interview data, and descriptive statistics were used to describe the activity registrations. RESULTS: Five domains clarify central aspects of the patients' perspectives on and acceptability of prehabilitation: the preoperative period, attitudes towards prehabilitation, the actual prehabilitation performed, motivation to take action and the need for support. CONCLUSION: Patients undergoing major abdominal cancer surgery are interested in and positive towards prehabilitation, but it has to be on their terms. The patients need support and supervision, but it has to be provided in a setting and in a way that are in line with the patient's preferences, resources and values. Thus, patient involvement is necessary to create prehabilitation programmes that are feasible and fit into patients' everyday lives.

Experiences of Patients Undergoing Bowel Preparation and Colonoscopy: A Qualitative Longitudinal Study.

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 patient-centered 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.

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, home-based, 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, face-to-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.

Follow-up after rectal cancer: developing and testing a novel patient-led follow-up program. Study protocol.

BACKGROUND: The main treatment for non-metastatic rectal cancer (RC) is surgical resection. Late adverse effects that are highly prevalent and negatively impact patients' symptom burden and quality of life are: bowel-, urological and sexual dysfunctions; psychological distress; fear of recurrence. Patients and clinicians have requested a more patient-centred follow-up, balancing the focus on detection of recurrence, and physiological and psychological late adverse effects. The current follow-up program primarily focuses on detection of recurrence, with less attention on late adverse effects. As a consequence, the randomized controlled trial Follow-up after Rectal Cancer (FURCA) has been launched, testing the effect of a new patient-led, follow-up program. The aim of this paper is to describe the methodology used in the FURCA study and to report results from the development of the patient-led, follow-up program. Adult patients, treated with curative intent for primary adenocarcinoma in the rectum are included from four Danish centers. MATERIAL AND METHODS: Patients are randomized into an intervention group, receiving standardized education and access to self-referral to an assigned project nurse, or a control group following the current follow-up program with routine medicals. The primary outcomes are symptom burden and quality of life, measured by the Functional Assessment of Cancer Therapy - Colorectal (FACT-C) questionnaire. Other outcome and demographic data are collected as patient-reported measures and register-based data. Results from developing the intervention: The education program is based on data from two focus group interviews and the feedback from experts. An algorithm is developed in order to qualify the research nurses' responses to patients' self-referral. Discussion and perspectives: The results of the FURCA study will strengthen the evidence base for RC follow-up, and qualify the ongoing transformation in cancer follow-up programs.