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Complex care for kids Ontario: protocol for a mixed-methods randomised controlled trial of a population-level care coordination initiative for children with medical complexity.

ABSTRACT: INTRODUCTION:Technological and medical advances have led to a growing population of children with medical complexity (CMC) defined by substantial medical needs, healthcare utilisation and morbidity. These children are at a high risk of missed, fragmented and/or inappropriate care, and families bear extraordinary financial burden and stress. While small in number (<1% of children), this group uses ~1/3 of all child healthcare resources, and need coordinated care to optimise their health. Complex care for kids Ontario (CCKO) brings researchers, families and healthcare providers together to develop, implement and evaluate a population-level roll-out of care for CMC in Ontario, Canada through a randomised controlled trial (RCT) design. The intervention includes dedicated key workers and the utilisation of coordinated shared care plans. METHODS AND ANALYSIS:Our primary objective is to evaluate the CCKO intervention using a randomised waitlist control design. The waitlist approach involves rolling out an intervention over time, whereby all participants are randomised into two groups (A and B) to receive the intervention at different time points determined at random. Baseline measurements are collected at month 0, and groups A and B are compared at months 6 and 12. The primary outcome is the family-prioritized Family Experiences with Coordination of Care (FECC) survey at 12 months. The FECC will be compared between groups using an analysis of covariance with the corresponding baseline score as the covariate. Secondary outcomes include reports of child and parent health outcomes, health system utilisation and process outcomes. ETHICS AND DISSEMINATION:Research ethics approval has been obtained for this multicentre RCT. This trial will assess the effect of a large population-level complex care intervention to determine whether dedicated key workers and coordinated care plans have an impact on improving service delivery and quality of life for CMC and their families. TRIAL REGISTRATION NUMBER:NCT02928757.

SUBMITTER: Orkin J

PROVIDER: S-EPMC6688698 | biostudies-literature | 2019 Aug

REPOSITORIES: biostudies-literature

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Complex care for kids Ontario: protocol for a mixed-methods randomised controlled trial of a population-level care coordination initiative for children with medical complexity.

Orkin Julia J Chan Carol Y CY Fayed Nora N Lin Jia Lu Lilian JLL Major Nathalie N Lim Audrey A Peebles Erin R ER Moretti Myla E ME Soscia Joanna J Sultan Roxana R Willan Andrew R AR Offringa Martin M Guttmann Astrid A Bartlett Leah L Kanani Ronik R Culbert Erin E Hardy-Brown Karolyn K Gordon Michelle M Perlmutar Marty M Cohen Eyal E

BMJ open 20190801 8

<h4>Introduction</h4>Technological and medical advances have led to a growing population of children with medical complexity (CMC) defined by substantial medical needs, healthcare utilisation and morbidity. These children are at a high risk of missed, fragmented and/or inappropriate care, and families bear extraordinary financial burden and stress. While small in number (<1% of children), this group uses ~1/3 of all child healthcare resources, and need coordinated care to optimise their health. ...[more]

PMID: 31375613

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Project description:ImportanceChildren with medical complexity (CMC) have chronic conditions and high health needs and may experience fragmented care.ObjectiveTo compare the effectiveness of a structured complex care program, Complex Care for Kids Ontario (CCKO), with usual care.Design, setting, and participantsThis randomized clinical trial used a waitlist variation for randomizing patients from 12 complex care clinics in Ontario, Canada, over 2 years. The study was conducted from December 2016 to June 2021. Participants were identified based on complex care clinic referral and randomly allocated into an intervention group, seen at the next available clinic appointment, or a control group that was placed on a waitlist to receive the intervention after 12 months.InterventionAssignment of a nurse practitioner-pediatrician dyad partnering with families in a structured complex care clinic to provide intensive care coordination and comprehensive plans of care.Main outcomes and measuresCo-primary outcomes, assessed at baseline and at 6, 12, and 24 months postrandomization, were service delivery indicators from the Family Experiences With Coordination of Care that scored (1) coordination of care among health care professionals, (2) coordination of care between health care professionals and families, and (3) utility of care planning tools. Secondary outcomes included child and parent health outcomes and child health care system utilization and cost.ResultsOf 144 participants randomized, 141 had complete health administrative data, and 139 had complete baseline surveys. The median (IQR) age of the participants was 29 months (9-102); 83 (60%) were male. At 12 months, scores for utility of care planning tools improved in the intervention group compared with the waitlist group (adjusted odds ratio, 9.3; 95% CI, 3.9-21.9; P < .001), with no difference between groups for the other 2 co-primary outcomes. There were no group differences for secondary outcomes of child outcomes, parent outcomes, and health care system utilization and cost. At 24 months, when both groups were receiving the intervention, no primary outcome differences were observed. Total health care costs in the second year were lower for the intervention group (median, CAD$17 891; IQR, 6098-61 346; vs CAD$37 524; IQR, 9338-119 547 [US $13 415; IQR, 4572-45 998; vs US $28 136; IQR, 7002-89 637]; P = .01).Conclusions and relevanceThe CCKO program improved the perceived utility of care planning tools but not other outcomes at 1 year. Extended evaluation periods may be helpful in assessing pediatric complex care interventions.Trial registrationClinicalTrials.gov Identifier: NCT02928757.

Project description:BackgroundThe Connecting2gether (C2) platform is a web and mobile-based information-sharing tool that aims to improve care for children with medical complexity and their families. A key feature of C2 is secure messaging, which enables parental caregivers (PCs) to communicate with their child's care team members (CTMs) in a timely manner.ObjectiveThe objectives of this study were to (1) evaluate the use of a secure messaging system, (2) examine and compare the content of messages to email and phone calls, and (3) explore PCs' and CTMs' perceptions and experiences using secure messaging as a method of communication.MethodsThis is a substudy of a larger feasibility evaluation of the C2 platform. PCs of children with medical complexity were recruited from a tertiary-level complex care program to use the C2 platform for 6 months. PCs could invite CTMs involved in their child's care to register on the platform. Messages were extracted from C2, and phone and email data were extracted from electronic medical records. Quantitative data from the use of C2 were analyzed using descriptive statistics. Messaging content codes were iteratively developed through a review of the C2 messages and phone and email communication. Semistructured interviews were completed with PCs and CTMs. Communication and interview data were analyzed using thematic analysis.ResultsA total of 36 PCs and 66 CTMs registered on the C2 platform. A total of 1861 messages were sent on C2, with PCs and nurse practitioners sending a median of 30 and 74 messages, respectively. Of all the C2 messages, 85.45% (1257/1471) were responded to within 24 hours. Email and phone calls focused primarily on clinical concerns and medications, whereas C2 messaging focused more on parent education, proactive check-ins, and nonmedical aspects of the child's life. Four themes emerged from the platform user interviews related to C2 messaging: (1) connection to the care team, (2) efficient communication, (3) clinical uses of secure messaging, and (4) barriers to use.ConclusionsOverall, our study provides valuable insight into the benefits of secure messaging in the care of children with medical complexity. Secure messaging provided the opportunity for continued family teaching, proactive check-ins from health care providers, and casual conversations about family and child life, which contributed to PCs feeling an improved sense of connection with their child's health care team. Secure messaging can be a beneficial additional communication method to improve communication between PCs and their care team, reducing the associated burden of care coordination and ultimately enhancing the experience of care delivery. Future directions include the evaluation of secure messaging when integrated into electronic medical records, as this has the potential to work well with CTM workflow, reduce redundancy, and allow for new features of secure messaging.

Project description:IntroductionGirl child, early and forced marriage (CEFM) persists in South Asia, with long-term consequences for girls. CARE's Tipping Point Initiative (TPI) addresses the causes of CEFM by challenging repressive gender norms and inequalities. The TPI engages different participant groups on programmatic topics and supports community dialogue to build girls' agency, shift inequitable power relations, and change community norms sustaining CEFM.Methods/analysisThe Nepal TPI impact evaluation has an integrated, mixed-methods design. The quantitative evaluation is a three-arm, cluster randomised controlled trial (control; Tipping Point Programme (TPP); TPP+ with emphasised social norms change). Fifty-four clusters of ~200 households were selected from two districts (27:27) with probability proportional to size and randomised. A household census ascertained eligible study participants, including unmarried girls and boys 12-16 years (1242:1242) and women and men 25+ years (270:270). Baseline participation was 1134 girls, 1154 boys, 270 women and 270 men. Questionnaires covered agency; social networks/norms; and discrimination/violence. Thirty in-depth interviews, 8 key-informant interviews and 32 focus group discussions were held across eight TPP/TPP+ clusters. Guides covered gender roles/aspirations; marriage decisions; girls' safety/mobility; collective action; perceived shifts in child marriage; and norms about girls. Monitoring involves qualitative interviews, focus groups and session/event observations over two visits. Qualitative analyses follow a modified grounded theory approach. Quantitative analyses apply intention to treat, regression-based difference-in-difference strategies to assess impacts on primary (married, marriage hazard) and secondary outcomes, targeted endline tracing and regression-based methods to address potential selection bias.Ethics/disseminationThe Nepal Social Welfare Council approved CARE Nepal to operate in the study districts. Emory (IRB00109419) and the Nepal Health Research Council (161-2019) approved the study. We follow UNICEF and CARE guidelines for ethical research involving children and gender-based violence. Study materials are here or available on request. We will share findings through clinicaltrials.gov, CARE reports/briefs and publications.Trial registration numberNCT04015856.

Project description:From 2008 to 2014, the Healthy Kids, Healthy Communities (HKHC) national program funded 49 communities across the United States and Puerto Rico to implement healthy eating and active living policy, system, and environmental changes to support healthier communities for children and families, with special emphasis on reaching children at highest risk for obesity on the basis of race, ethnicity, income, or geographic location. Evaluators designed a mixed-methods evaluation to capture the complexity of the HKHC projects, understand implementation, and document perceived and actual impacts of these efforts. Eight complementary evaluation methods addressed 4 primary aims seeking to (1) coordinate data collection for the evaluation through the web-based project management system (HKHC Community Dashboard) and provide training and technical assistance for use of this system; (2) guide data collection and analysis through use of the Assessment and Evaluation Toolkit; (3) conduct a quantitative cross-site impact evaluation among a subset of community partnership sites; and (4) conduct a qualitative cross-site process and impact evaluation among all 49 community partnership sites. Evaluators identified successes and challenges in relation to the following methods: an online performance-monitoring HKHC Community Dashboard system, environmental audits, direct observations, individual and group interviews, partnership and community capacity surveys, group model building, photographs and videos, and secondary data sources (surveillance data and record review). Several themes emerged, including the value of systems approaches, the need for capacity building for evaluation, the value of focusing on upstream and downstream outcomes, and the importance of practical approaches for dissemination. The mixed-methods evaluation of HKHC advances evaluation science related to community-based efforts for addressing childhood obesity in complex community settings. The findings are likely to provide practice-relevant evidence for public health.

Project description:IntroductionAdvances in medical technology and postoperative care have led to increased survival of children with medical complexity (CMC). Parents of CMC develop substantial caregiver expertise and familiarity with paediatric intensive care unit (PICU) staff and treatment procedures which may give rise to tensions regarding respective roles, caretaking preferences, treatment goals and expected outcomes. A therapeutic alliance built through strong partnerships constitutes the foundation of patient and family-centred care (PFCC), contributing to improvements in experiences and outcomes. Yet acute care settings continue to struggle with integrating PFCC into practice. This study aims to enhance PFCC for CMC in the PICU using an innovative approach to integrated knowledge translation.MethodsA mixed-method concurrent triangulation design will be used to develop, implement and evaluate PFCC practice changes for CMC in the PICU. Qualitative data will be collected using an Experience-based Co-design (EBCD) approach. Parents, CMC and staff will reflect on their PICU care experiences (stages 1 and 2), identify priorities for improvement (stage 3), devise strategies to implement changes (stage 4), evaluate practice changes and study process, and disseminate findings (stage 5). The quantitative arm will consist of a prepractice and postpractice change evaluation, compared with a control site. Analysis of qualitative and quantitative data will provide insights regarding the impact of PICU practice changes on PFCC.Ethics and disseminationThe McGill University Health Centre Research Ethics Board (Ref. #2019-5021) and the Hospital for Sick Children Research Ethics Board (Ref. #1000063801) approved the study. Knowledge users and researchers will be engaged as partners throughout the study as per our participatory approach. Knowledge products will include a short film featuring themes and video/audio clips from the interviews, recommendations for improvements in care, and presentations for healthcare leaders and clinical teams, in addition to traditional academic outputs such as conference presentations and publications.

Dataset Information

Complex care for kids Ontario: protocol for a mixed-methods randomised controlled trial of a population-level care coordination initiative for children with medical complexity.

Publications

Complex care for kids Ontario: protocol for a mixed-methods randomised controlled trial of a population-level care coordination initiative for children with medical complexity.

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