The present trial showed no evidence of a benefit of SCPs on satisfaction with information and care. Furthermore, SCPs increased patients' concerns, emotional impact, experienced symptoms, and the amount of cancer-related contact with the primary care physician. Whether this may ultimately lead to more empowered patients should be investigated further.

BackgroundThere is a need for improvement of information provision and post-treatment care for cancer survivors. A Survivorship Care Plan (SCP) is recommended by the American Institute of Medicine and the Dutch Health Council, which is a summary of patients' course of treatment as a formal document, and includes recommendations for subsequent cancer surveillance, management of late effects, and strategies for health promotion. Until now, evidence on the effects of implementing the SCP in clinical practice is lacking. The rationale and study design of a pragmatic cluster randomized trial, aiming to assess the impact of SCP care in routine clinical practice, is presented.Methods/DesignA web-based patient registration system 'Registrationsystem Oncological GYnecology' (ROGY) is used by gynecologists in the South of the Netherlands since 2006. A personalized SCP can automatically be generated out of ROGY. In this pragmatic cluster randomized controlled trial, 12 hospitals are randomized to either 'usual care' or 'SCP care'. In patients with 'usual care', the gynecologist provides care as usual. In patients with 'SCP care', information about the tumor stage and treatment is personally discussed with the patient and a document is handed to the patient. Prospectively, all patients diagnosed with endometrial or ovarian cancer in the participating hospitals will be approached for study participation. Patients will complete questionnaires after surgery, and before additional treatment, and after 6, 12, 18 and 24 months. In addition, health care providers will be asked their opinion about implementation of SCP care. Primary outcome is defined as patient satisfaction with information provision and care. Secondary outcomes are illness perception, health-related quality of life, health care use, prevalence, course and referral rate of survivors with psychosocial distress, and health care providers' evaluation of SCP care.DiscussionThe ROGY Care trial will help to gain insight into the impact of SCP care on patient reported outcomes, and on the evaluation of cancer survivors and health care providers of the different elements of the SCP. Therefore, results will contribute to efforts to improve quality of care for cancer survivors.Trial registrationTrial Registration: http://www.ClinicalTrials.gov. Identifier: NCT01185626Medical Research Ethics Committee Reference Number: NL33429.008.10 Grant Reference Number: UVT2010-4743

General rightsCopyright and moral rights for the publications made accessible in the public portal are retained by the authors and/or other copyright owners and it is a condition of accessing publications that users recognise and abide by the legal requirements associated with these rights.-Users may download and print one copy of any publication from the public portal for the purpose of private study or research -You may not further distribute the material or use it for any profit-making activity or commercial gain -You may freely distribute the URL identifying the publication in the public portal Take down policyIf you believe that this document breaches copyright, please contact us providing details, and we will remove access to the work immediately and investigate your claim. IntroductionEndometrial cancer is the most frequent gynecological cancer in industrialized countries, with an incidence of 15-25 per 100,000 women per year [1,2]. An ageing population with more diagnoses of endometrial cancer, increased risk factors, such as obesity, diabetes, and a lower parity, and more aggressive treatments in advanced disease all have resulted in increasing numbers of endometrial cancer survivors. In 2005, there were about 17,000 endometrial cancer survivors in The Netherlands, and this number is expected to increase to 25,000 in 2015 [3].Patient information is an essential factor in the support for cancer survivors across the whole cancer trajectory. Appropriate information given to cancer survivors about their diagnosis, treatment, possible long-term and late effects and referral services can result in better informed decision making, lower levels of distress, and improved satisfaction with care and sense of control [4][5][6][7]. Cancer survivors who are satisfied with the information they received have a better health related quality of life, and lower levels of depression and anxiety [8]. Studies suggest that most cancer patients want as much information as possible [7,9,10]. However, the information needs of cancer patients differ by gender, age, cultural background, educational level, cancer type, stage of disease (at diagnosis, treatment and follow-up), and coping style [11,12]. Understanding factors associated with information provision might help health care providers to provide more patient-centered information by giving adequate information to those who need it, at the right time [13]. 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, ...