C.A.C.M. Pittens

eHealth Program to Empower Patients in Returning to Normal Activities and Work After Gynecological Surgery: Intervention Mapping as a Useful Method for Development

Background Full recovery after gynecological surgery takes much longer than expected regardless of surgical technique or the level of invasiveness. After discharge, detailed convalescence recommendations are not provided to patients typically, and postoperative care is fragmented, poorly coordinated, and given only on demand. For patients, this contributes to irrational beliefs and avoidance of resumption of activities and can result in a prolonged sick leave. Objective To develop an eHealth intervention that empowers gynecological patients during the perioperative period to obtain timely return to work (RTW) and prevent work disability. Methods The intervention mapping (IM) protocol was used to develop the eHealth intervention. A literature search about behavioral and environmental conditions of prolonged sick leave and delayed RTW in patients was performed. Patients’ needs, attitudes, and beliefs regarding postoperative recovery and resumption of work were identified through focus group discussions. Additionally, a literature search was performed to obtain determinants, methods, and strategies for the development of a suitable interactive eHealth intervention to empower patients to return to normal activities after gynecological surgery, including work. Finally, the eHealth intervention was evaluated by focus group participants, medical doctors, and eHealth specialists through questionnaires. Results Twenty-one patients participated in the focus group discussions. Sufficient, uniform, and tailored information regarding surgical procedures, complications, and resumption of activities and work were considered most essential. Knowing who to contact in case of mental or physical complaints, and counseling and tools for work reintegration were also considered important. Finally, opportunities to exchange experiences with other patients were a major issue. Considering the determinants of the Attitude–Social influence–self-Efficacy (ASE) model, various strategies based on a combination of theory and evidence were used, resulting in an eHealth intervention with different interactive functionalities including tailored convalescence recommendations and a video to communicate the most common pitfalls during the perioperative period to patients and employers. Fifteen patients in the focus groups, 11 physicians, and 3 eHealth specialists suggested points for improvement to optimize the usability of the eHealth intervention and judged it an approachable, appropriate, and attractive eHealth intervention to empower gynecological patients. Conclusions The IM protocol was a useful method to develop an eHealth intervention based on both theory and evidence. All patients and stakeholders judged the eHealth intervention to be a promising tool to empower gynecological patients during the perioperative period and to help them to return to normal activities and work.

The involvement of gynaecological patients in the development of a clinical guideline for resumption of (work) activities in the Netherlands

Most initiatives for patient involvement in guideline development have been carried out for chronic diseases. The involvement of patients with incidental and non‐threatening diseases is more complicated. Little knowledge is available on how these patient groups can successfully be involved in guideline development.

Setting Priorities for Optimizing Vascular Access Decision Making – An International Survey of Patients and Clinicians

Background Many decisions around vascular access for haemodialysis warrant a collaborative treatment decision-making process, involving both clinician and patient. Yet, patients’ experiences in this regard have been suboptimal. Although clinical practice guidelines could facilitate collaborative decision making, they often focus on the clinicians’ side of the process, while failing to address the patients’ perspective. The objective of this study was to explore and compare kidney patients’ and clinicians’ views on what vascular access-related decisions deserved priority for developing guidelines that will contribute to optimizing collaborative decision making. Methods In the context of updating their vascular access guideline, European Renal Best Practice surveyed an international panel of 85 kidney patients, 687 nephrologists, 194 nurses, and 140 surgeons/radiologists. In an electronic questionnaire, respondents rated 42 vascular access-related topics on a 5-point Likert scale. Based on mean standardized ratings, we compared priority ratings between patients and each clinician group. Results Selection of access type and site, as well as prevention of access infections received top priority across all respondent groups. Patients generally assigned higher priority to decisions regarding managing adverse effects of arteriovenous access and patient involvement in care, while clinicians more often prioritized decisions around sustaining patients’ access options, technical aspects of access creation, and optimizing fistula maturation and patency. Conclusion Apart from identifying the most pressing knowledge gaps, our study provides pointers for developing guidelines that may improve healthcare professionals’ understanding of when to involve patients along the vascular access pathway.

Patient involvement in research programming and implementation: A responsive evaluation of the Dialogue Model for research agenda setting.

The Dialogue Model for research agenda‐setting, involving multiple stakeholders including patients, was developed and validated in the Netherlands. However, there is little insight into whether and how patient involvement is sustained during the programming and implementation of research agendas.