68 Chapter 3 METHODS Study design A national retrospective survey study was conducted in cooperation with the two Dutch stoma-related patient associations (‘Stomavereniging’ and ‘Stichting Stomaatje’). This study was conducted according to the Checklist for Reporting Results of Internet E-Surveys (CHERRIES).17 Ethical approval was waived by the local Ethics Committee of Amsterdam UMC. Development of the questionnaire The questionnaire used in this study was based on the Consumer Quality Index Stoma Care” (CQISC) which assesses the medical status of patients with stoma and their experiences with overall healthcare.18 The questionnaire was compiled by our research team and included clinical experts in stoma care and stoma patient associations. The questionnaire consisted of three parts: 1) patient characteristics and medical status, 2) current stoma care including possible improvements and patient satisfaction, and 3) patients’ experiences with mobile technology, assessing the needs for the desired functionalities of an app. Satisfaction was evaluated with the Satisfaction concerning Stoma Care Questionnaire (SSCQ), which was validated to evaluate perioperative stoma care. 19 The SSCQ contains three domains: ‘preoperative care and information’, ‘postoperative care and guidance’, and ‘contact with stoma nurse’ with a total of 20 questions (total score: minimum of 20 and maximum of 100). Study population The two patient associations sent invitational e-mails to their members. The members of the Dutch Stoma Association, ‘Stomavereniging’, were already part of an active panel, regularly participating in patient-related surveys, and received a closed-unique and personal invitation link. Members of the Dutch Patient Foundation ‘Stomaatje’ received an open – not unique–invitation link. The inclusion criterion was patients with a stoma (e.g., ileostomy, colostomy or urostomy), which was also stated in the invitation e-mail and the introduction of the survey. Most members of both associations had a stoma; however, a minor portion also had an ileoanal pouch. Patients with a pouch that did not have a stoma were excluded from the analysis if they returned the survey. To our best estimate, approximately 5270 patients (including patients with a pouch) were invited to complete the survey. Data collection Potential participants received an open or closed invitation and possibly one reminder to complete the web-based survey using SurveyMonkey®. Data was collected between 21th
RkJQdWJsaXNoZXIy MTk4NDMw