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.

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.

Differences in baseline characteristics and 1-year psychological factors between participants and non-participants in the randomized, controlled trial regarding patient-led follow-up after rectal cancer (FURCA).

Background: The ongoing multi-center randomized FURCA-trial investigates the effect of patient-led follow-up after rectal cancer, aiming at improving management of late effects and survivorship care. The purpose of this present sub-study was to identify potential systematic differences between participants and non-participants in the FURCA-trial, in regard to demographic and clinical factors at baseline, and in quality of life (QoL) and fear of cancer recurrence (FCR) after one year. Material and methods: The population comprised patients invited to the FURCA-trial during the first 13 months' recruitment. Clinical and demographic data was obtained at baseline and differences were significance tested. Non-participants were requested to fill in a short survey one year after primary surgery, while participants received the questionnaires as part of more comprehensive one-year follow-up. Results: In the first 13 months of the trial, 113 out of the 262 patients invited, declined to participate. The main reason reported for this was lack of energy surplus. Participants were younger than non-participants (p < .01), and nonparticipation was particularly evident among patients ≥ 80 years. More than half of the invited females declined to participate. Good WHO Performance status was associated with participation (p = .01), yet there were no statistically significant differences in Charlson Comorbidity Index, type of surgery, oncological treatment or UICC stages between participants and non-participants. By one year after surgery, there was no difference in FCR-level (p = .92) and QoL (p = .25) between the non-participants and control group participants. Conclusion: The sub-study found that participants and non-participants differed at baseline in regard to age, gender and performance status, which is supported by results from other studies. No between-group differences were found in psychological factors after one year. These findings are important for the generalisability of the upcoming results from the trial.

Initial validation of the Danish version of the Fear of Cancer Recurrence Inventory (FCRI) in colorectal cancer patients.

PURPOSE: The Fear of Cancer Recurrence Inventory (FCRI) is a multidimensional measure for fear of cancer recurrence (FCR). The aim of this study was to assess the psychometric properties of the translated Danish version of the FCRI in a population of colorectal cancer patients. METHODS: The English version of the FCRI was forward-backward translated into Danish and pilot tested in a gynaecological cancer population. The psychometric properties of the FCRI were assessed in terms of responsiveness, test-retest reliability and discriminative and convergent validity in a population of colorectal cancer patients by asking them to complete questionnaires at three time points during follow-up. Clinical FCR was defined as ≥ 16 at the FCRI short form. RESULTS: The participation rate was 57%. A low association was found between higher scores on the FCRI and younger age (r = - 0.29, p = 0.02). A moderate correlation was found between the FCRI score and a measure for worry traits (r = 0.49, p < 0.001). Mean difference in total FCRI score was statistically significant between 'pre-scan' and 'postscan' (p < 0.001), thus indicating that the FCRI was responsive to change. The FCRI score showed good test-retest reliability (intraclass correlation = 0.84). CONCLUSION: The Danish version of the FCRI is a reliable and responsive measure for FCR in colorectal cancer patients and shows acceptable discriminative and convergent validity. IMPLICATIONS FOR CANCER SURVIVORS: A valid measure for FCR is crucial in order to identify patients with a need for special attention or interventions for high levels of FCR and to improve future research into FCR among cancer survivors.

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.