Identification and Potential Use of Clusters of Patients With Colorectal Cancer and Patients With Prostate Cancer in Clinical Practice: Explorative Mixed Methods Study.

BACKGROUND: A steady increase in colorectal and prostate cancer survivors and patients with these cancers is expected in the upcoming years. As a result of primary cancer treatments, patients have numerous additional complaints, increasing the need for cancer aftercare. However, referrals to appropriate cancer aftercare remain inadequate, despite a wide range of aftercare options. Caregivers and patients often do not know which aftercare is the most appropriate for the individual patient. Since characteristics and complaints of patients within a diagnosis group may differ, predefined patient clusters could provide substantive and efficient support for professionals in the conversation about aftercare. By using advanced data analysis methods, clusters of patients who are different from one another within a diagnosis group can be identified. OBJECTIVE: This study had a 2-fold objective: (1) to identify, visualize, and describe potential patient clusters within the colorectal and prostate cancer population and (2) to explore the potential usability of these clusters in clinical practice. METHODS: First, we used cross-sectional data from patients with colorectal cancer and patients with prostate cancer provided by the population-based PROFILES (Patient-Reported Outcomes Following Initial Treatment and Long-Term Evaluation of Survivorship) registry, which were originally collected between 2008 and 2012. To identify and visualize different clusters among the 2 patient populations, we conducted cluster analyses by applying the K-means algorithm and multiple-factor analyses. Second, in a qualitative study, we presented the patient clusters to patients with prostate, patients with colorectal cancer, and oncology professionals. To assess the usability of these clusters, we held expert panel group interviews. The interviews were video recorded and transcribed. Three researchers independently performed content-directed data analyses to understand and describe the qualitative data. Quotes illustrate the most important results. RESULTS: We identified 3 patient clusters among colorectal cancer cases (n=3989) and 5 patient clusters among prostate cancer cases (n=696), which were described in tabular form. Patient experts (6/8, 75%) and professional experts (17/20, 85%) recognized the patient clustering based on distinguishing variables. However, the tabular form was evaluated as less applicable in clinical practice. Instead, the experts suggested the development of a conversation tool (eg, decision tree) to guide professionals through the hierarchy of variables. In addition, participants suggested that information about possible aftercare initiatives should be offered and integrated. This would also ensure a good overview and seemed to be a precondition for finding suitable aftercare. CONCLUSIONS: This study demonstrates that a fully data-driven approach can be used to identify distinguishable and recognizable (ie, in routine care) patient clusters in large data sets within cancer populations. Patient clusters can be a source of support for health professionals in the aftercare conversation. These clusters, when integrated into a smart digital conversation and referral tool, might be an opportunity to improve referral to cancer aftercare. TRIAL REGISTRATION: Netherlands Trial Register NL9226; https://trialsearch.who.int/Trial2.aspx?TrialID=NL9226.

Self-management and adherence to recommended follow-up after gynaecological cancer: results from the international InCHARGE study.

OBJECTIVE: To assess the relationship between self-management skills and adherence to follow-up guidelines among gynecological cancer survivors in the Netherlands, Norway, and Denmark, and to assess the relationship between adherence to follow-up programs and use of additional healthcare services. METHODS: For this international, multicenter, cross-sectional study, we recruited gynecological cancer survivors 1-5 years after completion of treatment. Information on follow-up visits, use of healthcare resources, self-management (measured by the Health Education Impact Questionnaire), clinical characteristics, and demographics were obtained by validated questionnaires. Participants were categorized as adherent if they attended the number of follow-up visits recommended by national guidelines, non-adherent if they had fewer visits than recommended, or over-users if they had more visits than recommended. RESULTS: Of 4455 invited survivors, 2428 (55%) returned the questionnaires, and 911 survivors were included in the analyses. Survivors with high self-management most frequently adhered to recommended follow-up. Non-adherent survivors showed lower self-management in the health-directed activity domain (OR 1.54, 95% CI 1.03 to 2.32) than adherent survivors. No other associations between self-management and follow-up adherence were revealed. Non-adherent survivors tended to have endometrial cancer, surgical treatment only, be older, and be Danish residents. Over-users reported more follow-up visits and also used additional healthcare services more frequently than adherent survivors. CONCLUSION: Low self-management appears to reduce the likelihood of adherence to national guidelines for gynecological cancer follow-up. Focusing on patient education for survivors at risk of low self-management to ensure adherence to recommended follow-up may improve personalization of follow-up.

Endometrial cancer survivors are unsatisfied with received information about diagnosis, treatment and follow-up: a study from the population-based PROFILES registry.

OBJECTIVE: To evaluate perceived level of and satisfaction with information received by endometrial cancer survivors, and to identify associations with socio-demographic and clinical characteristics. METHODS: All patients diagnosed with endometrial cancer between 1998 and 2007, registered in the Eindhoven Cancer Registry, received a questionnaire including EORTC-QLQ-INFO25. RESULTS: Seventy-seven percent responded (n=742). Most patients indicated receiving quite a bit information about their disease and medical tests. However, most patients were not (54%) or a little (24%) informed about the cause of their disease, and possible side effects (36%; 27%). Especially information about additional help, rehabilitation, psychological assistance, and expected results on social and sexual life was lacking. Five percent was not or a little (36%) satisfied. Four percent found the information not or a little (35%) helpful. Fifteen percent preferred more information. Younger age, more recent diagnosis, radiotherapy, absence of comorbidities, having a partner, having received written information, and higher educational level were associated with higher perceived information receipt. CONCLUSION: Many endometrial cancer survivors are unsatisfied with received information. Several areas of information provision are experienced as insufficient. PRACTICE IMPLICATIONS: More patient-tailored information is probably needed to provide optimal information. Implementation of Survivorship Care Plans might be a way to achieve this.