An implementation model for managing cloud-based longitudinal care plans for children with medical complexity

Journal of the American Medical Informatics Association ◽

10.1093/jamia/ocaa207 ◽

2020 ◽

Author(s):

Grace Wang ◽

Julia Wignall ◽

Dylan Kinard ◽

Vidhi Singh ◽

Carolyn Foster ◽

...

Keyword(s):

Management Strategies ◽

Care Coordinator ◽

Children With Medical Complexity ◽

Team Members ◽

Implementation Model ◽

Care Plans ◽

Universal Accessibility ◽

Audio Recordings ◽

Medical Complexity ◽

Before And After

Abstract Objective We aimed to iteratively refine an implementation model for managing cloud-based longitudinal care plans (LCPs) for children with medical complexity (CMC). Materials and Methods We conducted iterative 1-on-1 design sessions with CMC caregivers (ie, parents/legal guardians) and providers between August 2017 and March 2019. During audio-recorded sessions, we asked participants to walk through role-specific scenarios of how they would create, review, and edit an LCP using a cloud-based prototype, which we concurrently developed. Between sessions, we reviewed audio recordings to identify strategies that would mitigate barriers that participants reported relating to 4 processes for managing LCPs: (1) taking ownership, (2) sharing, (3) reviewing, and (4) editing. Analysis informed iterative implementation model revisions. Results We conducted 30 design sessions, with 10 caregivers and 20 providers. Participants emphasized that cloud-based LCPs required a team of owners: the caregiver(s), a caregiver-designated clinician, and a care coordinator. Permission settings would need to include universal accessibility for emergency providers, team-level permission options, and some editing restrictions for caregivers. Notifications to review and edit the LCP should be sent to team members before and after clinic visits and after hospital encounters. Mitigating double documentation barriers would require alignment of data fields between the LCP and electronic health record to maximize interoperability. Discussion These findings provide a model for how we may leverage emerging Health Insurance Portability and Accountability Act–compliant cloud computing technologies to support families and providers in comanaging health information for CMC. Conclusions Utilizing these management strategies when implementing cloud-based LCPs has the potential to improve team-based care across settings.

Download Full-text

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

BMJ Open ◽

10.1136/bmjopen-2018-028121 ◽

2019 ◽

Vol 9 (8) ◽

pp. e028121 ◽

Cited By ~ 1

Author(s):

Julia Orkin ◽

Carol Y Chan ◽

Nora Fayed ◽

Jia Lu Lilian Lin ◽

Nathalie Major ◽

...

Keyword(s):

Randomised Controlled Trial ◽

Controlled Trial ◽

Population Level ◽

Complex Care ◽

Coordinated Care ◽

Children With Medical Complexity ◽

Medical Needs ◽

Care Plans ◽

Medical Complexity ◽

Randomised Controlled

IntroductionTechnological 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 analysisOur 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 disseminationResearch 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 numberNCT02928757.

Download Full-text

ARE CHILDREN WITH MEDICAL COMPLEXITY (CMC) MEETING TRANSITION-RELATED MILESTONES BEFORE ENTERING THE ADULT HEALTHCARE SYSTEM? A CROSS-SECTIONAL CHART REVIEW

Paediatrics & Child Health ◽

10.1093/pch/pxy054.080 ◽

2018 ◽

Vol 23 (suppl_1) ◽

pp. e31-e31

Author(s):

Taylor McKay ◽

Christopher Chung ◽

Julia Orkin ◽

Sherri Adams

Keyword(s):

Healthcare System ◽

Chart Review ◽

Complex Care ◽

Critical Transition ◽

Children With Medical Complexity ◽

Cross Sectional ◽

Key Informants ◽

Related Data ◽

Care Plans ◽

Medical Complexity

Abstract BACKGROUND Medical and technological advances have resulted in a growing cohort of children with medical complexity (CMC) who are reaching adulthood. These children are diagnostically heterogenous and require frequent hospitalizations, intensive community services, and medical technology at home to maintain their health. Transitioning CMC to the adult healthcare system has proven challenging for patients and their caregivers, who are comfortable and empowered in the paediatric setting. This multi-faceted process requires the expertise of an interdisciplinary team and one transition can take up to 100 hours of coordination. Although each patient is diagnostically unique, common requirements for transition arise. A standardized approach to transition would empower caregivers to be better advocates for CMC in the adult healthcare system. In order to implement an approach, a baseline understanding of this growing population is required. OBJECTIVES 1. To obtain demographic, medical, and transition-related data for CMC approaching transition to assess whether current transition practices are aligned with critical transition milestones and events, as detailed by key informants 2. To identify optimal targets for intervention in the transition process and produce a standardized toolkit to address gaps DESIGN/METHODS This was a cross-sectional chart review study. It was conducted at one of the largest Canadian complex care programs, which follows 400+ children. Prior to chart review, critical transition-related parameters and milestones were ascertained from interviews with key informants, such as transition coordination experts, the medical lead of the complex care program, family physicians, social workers, and nurse practitioners, who are the most involved with transitioning patients clinically. This previously siloed knowledge was centralized and converted into a standardized clinical toolkit including an age-stratified checklist and caregiver handouts. Having determined key transition parameters, 51 CMC were identified between the ages of 14 and 17 (inclusive) and were included in the study. Demographic, medical, and transition-related data was collected from care plans and clinical notes. Data was subsequently stratified by age and care location. Descriptive statistics were generated for each key transition parameter. RESULTS This cohort of 51 CMC (51% male, 49% female) displayed steady growth between years. On average, these CMC had 9 diagnoses, 6 subspecialists, actively used 8 medications, and were dependent on one home-technology. Only 50% of patients had discussed transition-related topics and 76% of patients did not have a designated transition lead. Although discussion of transition increased with age, many crucial transition-related topics, both in medical and social categories, were not routinely addressed. From a medical perspective, over 40% of patients had not found a family physician, who serve as the primary medical care coordinators in the adult healthcare system. In the final year before transition, less than 50% of patients had been referred to new adult subspecialists and of these patients, half had not met these new providers. Adult social support programs, which provide critical funding for medications, respite, and home care, represent the other major component of transition. At age 17, 50% of patients had not applied for any provincial disability and respite funding, which can take up to 2 years to receive approval for. CONCLUSION This study has identified areas for improvement in medical and social aspects of transition-related planning that may benefit from a standardized clinical toolkit. These are highly complex patients who are not meeting transition-related milestones before turning 18, and are entering the adult healthcare system unprepared. Without approved funding and established medical follow-up, patients and caregivers suffer. Due to the highly heterogenous nature of this patient population, a standardized approach to transition, in tandem with further research and education, is needed.

Download Full-text

Exploring the usefulness of comprehensive care plans for children with medical complexity (CMC): a qualitative study

BMC Pediatrics ◽

10.1186/1471-2431-13-10 ◽

2013 ◽

Vol 13 (1) ◽

Cited By ~ 39

Author(s):

Sherri Adams ◽

Eyal Cohen ◽

Sanjay Mahant ◽

Jeremy N Friedman ◽

Radha MacCulloch ◽

...

Keyword(s):

Qualitative Study ◽

Comprehensive Care ◽

Children With Medical Complexity ◽

Care Plans ◽

Medical Complexity

Download Full-text

Caregiver and Health Care Provider Perspectives on Cloud-Based Shared Care Plans for Children With Medical Complexity

Hospital Pediatrics ◽

10.1542/hpeds.2017-0242 ◽

2018 ◽

Vol 8 (7) ◽

pp. 394-403 ◽

Cited By ~ 6

Author(s):

Arti D. Desai ◽

Elizabeth A. Jacob-Files ◽

Julia Wignall ◽

Grace Wang ◽

Wanda Pratt ◽

...

Keyword(s):

Health Care ◽

Health Care Provider ◽

Care Provider ◽

Shared Care ◽

Children With Medical Complexity ◽

Care Plans ◽

Provider Perspectives ◽

Medical Complexity

Download Full-text

Mobile Complex Care Plans to Enhance Parental Engagement for Children With Medical Complexity

Clinical Pediatrics ◽

10.1177/0009922818805241 ◽

2018 ◽

Vol 58 (1) ◽

pp. 34-41 ◽

Cited By ~ 8

Author(s):

David Y. Ming ◽

George L. Jackson ◽

Jessica Sperling ◽

Megan Gray ◽

Noelle Wyman Roth ◽

...

Keyword(s):

Care Program ◽

Parental Engagement ◽

Complex Care ◽

Communication Tool ◽

Children With Medical Complexity ◽

Care Plans ◽

Online Portal ◽

Health Innovations ◽

Medical Complexity ◽

Mobile Complex

Care plans can reduce care fragmentation for children with medical complexity (CMC); however, implementation is challenging. Mobile health innovations could improve implementation. This mixed methods study’s objectives were to (1) evaluate feasibility of mobile complex care plans (MCCPs) for CMC enrolled in a complex care program and (2) study MCCPs’ impact on parent engagement, parent experience, and care coordination. MCCPs were individualized, updated quarterly, integrated within the electronic health record, and visible on parents’ mobile devices via an online portal. In 1 year (September 1, 2016, to August 31, 2017), 94% of eligible patients (n = 47) received 162 MCCPs. Seventy-four percent of parents (n = 35) reviewed MCCPs online. Forty-six percent of these parents (n = 16) sent a follow-up message, and the care team responded within 8 hours (median time = 7.2 hours). In interviews, parents identified MCCPs as an important reference and communication tool. MCCPs for CMC in a complex care program were feasible, facilitated parental engagement, and delivered timely communication.

Download Full-text

Care maps and care plans for children with medical complexity

Child Care Health and Development ◽

10.1111/cch.12632 ◽

2018 ◽

Vol 45 (1) ◽

pp. 104-110 ◽

Cited By ~ 1

Author(s):

Sherri Adams ◽

David Nicholas ◽

Sanjay Mahant ◽

Natalie Weiser ◽

Ronik Kanani ◽

...

Keyword(s):

Children With Medical Complexity ◽

Care Plans ◽

Medical Complexity ◽

Care Maps

Download Full-text

Perspectives on team communication challenges in caring for children with medical complexity

BMC Health Services Research ◽

10.1186/s12913-021-06304-8 ◽

2021 ◽

Vol 21 (1) ◽

Author(s):

Sherri Adams ◽

Madison Beatty ◽

Clara Moore ◽

Arti Desai ◽

Leah Bartlett ◽

...

Keyword(s):

Real Time ◽

Health Information ◽

Universal Access ◽

Care Team ◽

Care Providers ◽

Children With Medical Complexity ◽

Team Members ◽

Access To Health ◽

Medical Complexity ◽

Communication Challenges

Abstract Background Children with medical complexity (CMC) require the expertise of many care providers spanning different disciplines, institutions, and settings of care. This leads to duplicate health records, breakdowns in communication, and limited opportunities to provide comprehensive, collaborative care. The objectives of this study were to explore communication challenges and solutions/recommendations from multiple perspectives including (i) parents, (ii) HCPs – hospital and community providers, and (iii) teachers of CMC with a goal of informing patient care. Methods This qualitative study utilized an interpretive description methodology. In-depth semi-structured interviews were conducted with parents and care team members of CMC. The interview guides targeted questions surrounding communication, coordination, access to information and roles in the health system. Interviews were conducted until thematic saturation was reached. Interviews were audio-recorded, transcribed verbatim, and coded and analyzed using thematic analysis. Results Thirty-two individual interviews were conducted involving parents (n = 16) and care team members (n = 16). Interviews revealed 2 main themes and several associated subthemes (in parentheses): (1) Communication challenges in the care of CMC (organizational policy and technology systems barriers, inadequate access to health information, and lack of partnership in care) (2) Communication solutions (shared systems that can be accessed in real-time, universal access to health information, and partnered contribution to care). Conclusion Parents, HCPs, and teachers face multiple barriers to communication and information accessibility in their efforts to care for CMC. Parents and care providers in this study suggested potential strategies to improve communication including facilitating communication in real-time, universal access to health information and meaningful partnerships.

Download Full-text

Medication Monitoring for People with Dementia in Care Homes: The Feasibility and Clinical Impact of Nurse-Led Monitoring

The Scientific World JOURNAL ◽

10.1155/2014/843621 ◽

2014 ◽

Vol 2014 ◽

pp. 1-11 ◽

Cited By ~ 10

Author(s):

Sue Jordan ◽

Marie Gabe ◽

Louise Newson ◽

Sherrill Snelgrove ◽

Gerwyn Panes ◽

...

Keyword(s):

Mental Health ◽

Adverse Drug Reaction ◽

Intervention Study ◽

Clinical Impact ◽

Care Homes ◽

Service Users ◽

Care Plans ◽

Medication Monitoring ◽

People With Dementia ◽

Before And After

Objectives. People with dementia are susceptible to adverse effects of medicines. However, they are not always closely monitored. We explored (1) feasibility and (2) clinical impact of nurse-led medication monitoring.Design. Feasibility “before-and-after” intervention study.Setting. Three care homes in Wales.Participants. Eleven service users diagnosed with dementia, taking at least one antipsychotic, antidepressant, or antiepileptic medicine.Intervention. West Wales Adverse Drug Reaction (ADR) Profile for Mental Health Medicines.Outcome Measures. (1) Feasibility: recruitment, retention, and implementation. (2) Clinical impact: previously undocumented problems identified and ameliorated, as recorded in participants’ records before and after introduction of the profile, and one month later.Results. Nurses recruited and retained 11 of 29 eligible service users. The profile took 20–25 minutes to implement, caused no harm, and supplemented usual care. Initially, the profile identified previously undocumented problems for all participants (mean 12.7 (SD 4.7)). One month later, some problems had been ameliorated (mean 4.9 (3.6)). Clinical gains included new prescriptions to manage pain (2 participants), psoriasis (1), Parkinsonian symptoms (1), rash (1), dose reduction of benzodiazepines (1), new care plans for oral hygiene, skin problems, and constipation.Conclusions. Participants benefited from structured nurse-led medication monitoring. Clinical trials of our ADR Profile are feasible and necessary.

Download Full-text