IntroductionCentralized intake is integral to healthcare systems to support timely access to appropriate health services. The aim of this study was to develop key performance indicators (KPIs) to evaluate centralized intake systems for patients with osteoarthritis (OA) and rheumatoid arthritis (RA).MethodsPhase 1 involved stakeholder meetings including healthcare providers, managers, researchers and patients to obtain input on candidate KPIs, aligned along six quality dimensions: appropriateness, accessibility, acceptability, efficiency, effectiveness, and safety. Phase 2 involved literature reviews to ensure KPIs were based on best practices and harmonized with existing measures. Phase 3 involved a three-round, online modified Delphi panel to finalize the KPIs. The panel consisted of two rounds of rating and a round of online and in-person discussions. KPIs rated as valid and important (≥7 on a 9-point Likert scale) were included in the final set.ResultsTwenty-five KPIs identified and substantiated during Phases 1 and 2 were submitted to 27 panellists including healthcare providers, managers, researchers, and patients in Phase 3. After the in-person meeting, three KPIs were removed and six were suggested. The final set includes 9 OA KPIs, 10 RA KPIs and 9 relating to centralized intake processes for both conditions. All 28 KPIs were rated as valid and important.ConclusionsArthritis stakeholders have proposed 28 KPIs that should be used in quality improvement efforts when evaluating centralized intake for OA and RA. The KPIs measure five of the six dimensions of quality and are relevant to patients, practitioners and health systems.Electronic supplementary materialThe online version of this article (doi:10.1186/s13075-015-0843-7) contains supplementary material, which is available to authorized users.

Pediatric heart transplant recipients have been shown to have reduced exercise performance. Studies of adult heart transplant recipients demonstrate improved endurance from regular aerobic exercise; however, this strategy has not been studied in children. We hypothesized that regular aerobic/strength training would improve exercise performance in children post-heart transplant. After an initial training session, an exercise protocol was performed at home for 12 wk, three days/wk. Aerobic exercise consisted of either running or use of an exercise bicycle to an established target HR for >or=20 min of a 30-min session for three days/wk. Subjects wore a HR monitor and kept a diary to monitor compliance. Two days/wk, strength training was performed with elastic bands to specifically exercise biceps and triceps groups for 15-20 min/session. Aerobic exercise capacity was assessed at baseline and post-training using the standard Bruce treadmill protocol. Strength was measured at baseline and post-intervention by dynamometer. Exercise and strength parameters at baseline and post-intervention were compared using paired student t-tests. Eleven subjects completed the 12-wk program, eight females and three males. The mean age at enrollment was 14.7 +/- 5.3 yr (8-25) and mean time from transplant was 5.26 +/- 5.34 yr (0.58-14.71). Endurance time and peak oxygen consumption improved significantly post-exercise; there was no difference in peak HR or systolic blood pressure. Strength improved in the triceps, quadriceps, and biceps groups. After a 12-wk in home exercise intervention, pediatric heart recipients had improved exercise endurance and strength. The protocol was safe and implemented at relatively low cost. Further study is warranted to determine if the intervention can be extended to more children and whether benefits after such a short-term intervention can be sustained.

Background The published literature demands examples of health‐care systems designed with the active engagement of patients to explore the application of this complex phenomenon in practice. Methods This case study explored how the voice of patients was incorporated into the process of redesigning an element of the health‐care system, a centralized system for intake of referrals from primary care to rheumatologists for patients with suspected rheumatoid arthritis (RA)—centralized intake. The phenomenon of patient engagement using “patient and community engagement researchers” (PaCERs) in research and the process of redesigning centralized intake were selected as the case. In‐depth evaluation of the case was undertaken through the triangulation of findings from the document review and participants’ reflection on the case. Results In this case, patients and PaCERs participated in multiple activities including an initial meeting of key stakeholders to develop the project vision; a patient‐to‐patient PaCERs study to gather perspectives of patients with RA on the challenges they face in accessing and navigating the health‐care system, and what they see as key elements of an effective system that would be responsive to their needs; the development of an evaluation framework for future centralized intake; and the choice of candidate centralized intake strategies to be evaluated. Conclusions The described feasible multistep approach to active patient engagement in health‐care system redesign contributes to an understanding of the application of this complex phenomenon in practice. Therefore, the manuscript serves as one more step towards a patient‐centred health‐care system that is redesigned with active patient engagement.