scholarly journals Integrated complex care coordination for children with medical complexity: A mixed-methods evaluation of tertiary care-community collaboration

2012 ◽  
Vol 12 (1) ◽  
Author(s):  
Eyal Cohen ◽  
Ashley Lacombe-Duncan ◽  
Karen Spalding ◽  
Jennifer MacInnis ◽  
David Nicholas ◽  
...  
Keyword(s):  
Mixed Methods ◽  
Care Coordination ◽  
Tertiary Care ◽  
Community Collaboration ◽  
Complex Care ◽  
Children With Medical Complexity ◽  
Care Community ◽  
Mixed Methods Evaluation ◽  
Medical Complexity

scholarly journals Integrated complex care coordination for children with medical complexity: A mixed-methods evaluation of tertiary care-community collaboration

2021 ◽  
Author(s):  
Eyal Cohen ◽  
Ashley Lacombe-Duncan ◽  
Karen Spalding ◽  
Jennifer MacInnis ◽  
David Nicholas ◽  
...  
Keyword(s):  
Primary Care ◽  
Health Care ◽  
Care Coordination ◽  
Care Center ◽  
Tertiary Care ◽  
Care Utilization ◽  
Complex Care ◽  
Tertiary Care Center ◽  
Community Based ◽  
Children With Medical Complexity

Background Primary care medical homes may improve health outcomes for children with special healthcare needs (CSHCN), by improving care coordination. However, community-based primary care practices may be challenged to deliver comprehensive care coordination to complex subsets of CSHCN such as children with medical complexity (CMC). Linking a tertiary care center with the community may achieve cost effective and high quality care for CMC. The objective of this study was to evaluate the outcomes of community-based complex care clinics integrated with a tertiary care center. Methods A before- and after-intervention study design with mixed (quantitative/qualitative) methods was utilized. Clinics at two community hospitals distant from tertiary care were staffed by local community pediatricians with the tertiary care center nurse practitioner and linked with primary care providers. Eighty-one children with underlying chronic conditions, fragility, requirement for high intensity care and/or technology assistance, and involvement of multiple providers participated. Main outcome measures included health care utilization and expenditures, parent reports of parent- and child-quality of life [QOL (SF-36®, CPCHILD©, PedsQL™)], and family-centered care (MPOC-20®). Comparisons were made in equal (up to 1 year) pre- and post-periods supplemented by qualitative perspectives of families and pediatricians. Results Total health care system costs decreased from median (IQR) $244 (981) per patient per month (PPPM) pre-enrolment to $131 (355) PPPM post-enrolment (p=.007), driven primarily by fewer inpatient days in the tertiary care center (p=.006). Parents reported decreased out of pocket expenses (p<.0001). Parental QOL did not significantly change over the course of the study. Child QOL improved between baseline and 6 months in two PedsQL™ domains [Social (p=.01); Emotional (p=.003)], and between baseline and 1 year in two CPCHILD© domains [Health Standardization Section (p=.04); Comfort and Emotions (p=.03)], while total CPCHILD© score decreased between baseline and 1 year (p=.003). Parents and providers reported the ability to receive care close to home as a key benefit. Conclusions Complex care can be provided in community-based settings with less direct tertiary care involvement through an integrated clinic. Improvements in health care utilization and family-centeredness of care can be achieved despite minimal changes in parental perceptions of child health.

scholarly journals Feasibility of implementing systematic social needs assessment for children with medical complexity

2021 ◽  
Vol 2 (1) ◽  
Author(s):  
David Y. Ming ◽  
Kelley A. Jones ◽  
Elizabeth Sainz ◽  
Heidie Tkach ◽  
Amy Stewart ◽  
...  
Keyword(s):  
Decision Making ◽  
Needs Assessment ◽  
Shared Decision Making ◽  
Tertiary Care ◽  
Social Needs ◽  
Complex Care ◽  
Shared Decision ◽  
Children With Medical Complexity ◽  
Implementation Outcomes ◽  
Medical Complexity

Abstract Background Children with medical complexity (CMC) have inter-related health and social needs; however, interventions to identify and respond to social needs have not been adapted for CMC. The objective of this study was to evaluate the feasibility of implementing social needs screening and assessment within pediatric complex care programs. Methods We implemented systematic social needs assessment for CMC (SSNAC) at two tertiary care centers in three phases: (1) pre-implementation, (2) implementation, and (3) implementation monitoring. We utilized a multifaceted implementation package consisting of discrete implementation strategies within each phase. In phase 1, we adapted questions from evidence-informed screening tools into a 21-item SSNAC questionnaire, and we used published frameworks to inform implementation readiness and process. In phases 2–3, clinical staff deployed the SSNAC questionnaire to parents of CMC in-person or by phone as part of usual care and adapted to local clinical workflows. Staff used shared decision-making with parents and addressed identified needs by providing information about available resources, offering direct assistance, and making referrals to community agencies. Implementation outcomes included fidelity, feasibility, acceptability, and appropriateness. Results Observations from clinical staff characterized fidelity to use of the SSNAC questionnaire, assessment template, and shared decision-making for follow-up on unmet social needs. Levels of agreement (5-point Likert scale; 1 = completely disagree; 5 = completely agree) rated by staff for key implementation outcomes were moderate to high for acceptability (mean = 4.7; range = 3–5), feasibility (mean = 4.2; range = 3–5), and appropriateness (mean = 4.6; range = 4-5). 49 SSNAC questionnaires were completed with a 91% response rate. Among participating parents, 37 (76%) reported ≥ 1 social need, including food/nutrition benefits (41%), housing (18%), and caregiver needs (29%). Staff responses included information provision (41%), direct assistance (30%), and agency referral (30%). Conclusions It was feasible for tertiary care center-based pediatric complex care programs to implement a standardized social needs assessment for CMC to identify and address parent-reported unmet social needs.

scholarly journals 99 Impact of COVID-19 pandemic on children with medical complexity: Parental perspective about the role of a Complex Care program

2021 ◽  
Vol 26 (Supplement_1) ◽  
pp. e71-e72
Author(s):  
Louis-Philippe Thibault ◽  
Maria Marano ◽  
Lydia Saad ◽  
Marie-Joëlle Doré-Bergeron ◽  
Karine Couture ◽  
...  
Keyword(s):  
Problem Solving ◽  
Tertiary Care ◽  
Care Program ◽  
Complex Care ◽  
Children With Medical Complexity ◽  
Parental Experience ◽  
Phone Calls ◽  
Medical Complexity ◽  
The Media ◽  
The Impact

Abstract Primary Subject area Complex Care Background The COVID-19 pandemic led to major and rapid organizational and structural healthcare changes including a switch from ambulatory services towards telemedicine and decreased access to home services. Children with medical complexity (CMC) require many medical services and are generally prone to infectious complications. Little is known about the impact of the pandemic on families of CMC. Understanding how CMC families experience the COVID-19 pandemic is essential to tailor healthcare services to answer their needs more effectively. Objectives We explored parental experience of CMC during the COVID-19 pandemic, and how the complex care program (CCP) answers their new needs. Design/Methods This qualitative study was conducted between July 2020 and January 2021 in a tertiary care pediatric university hospital centre. Semi-structured interviews were done with parents of CMC, admitted in the CCP at least 1 year prior to the beginning of the pandemic. The interview guide was co-constructed by physicians and nurses from the CCP. Interviews were transcribed verbatim and analyzed using NVivo. Data were organized into codes and categories. Thematic content analysis was performed by grouping categories and highlighting emerging themes. Results Eleven families (14 parents – 4 fathers, including 3 couples) were interviewed. The first wave of the pandemic seemed to have caused important uncertainty and anxiety amongst parents of CMC. Almost all the parents reported cancelling numerous appointments in order to avoid coming to the hospital at all costs. Some parents, worrying specifically about the fragility of their child, stopped working and stayed home to reduce transmission risks. Fear of facing shortages in medications, nutritional supplements and medical equipment for home care was frequently expressed. They did not express worries about the de-confinement periods. The support provided by the CCP’s staff was greatly appreciated, namely active problem-solving via phone calls, videoconferences, emails and pictures, leading to fewer hospital visits and less need to seek emergency care. Some reported that more general communication from the CCP (e.g., a weekly information email), would have helped to interpret the overwhelming amount of information from the media. Parents expressed a strong desire to maintain telemedicine services after the pandemic. Conclusion The COVID-19 pandemic brought additional worries to parents of CMC enrolled in CCPs, including fear of shortages and virus transmission. Direct communication with the CCP and remote problem-solving were greatly appreciated by families. Improvement to follow-up include finding ways to help interpreting data from the media.

scholarly journals Integrated complex care coordination for children with medical complexity: A mixed-methods evaluation of tertiary care-community collaboration

2021 ◽  
Author(s):  
Eyal Cohen ◽  
Ashley Lacombe-Duncan ◽  
Karen Spalding ◽  
Jennifer MacInnis ◽  
David Nicholas ◽  
...  
Keyword(s):  
Primary Care ◽  
Health Care ◽  
Care Coordination ◽  
Care Center ◽  
Tertiary Care ◽  
Care Utilization ◽  
Complex Care ◽  
Tertiary Care Center ◽  
Community Based ◽  
Children With Medical Complexity

Background Primary care medical homes may improve health outcomes for children with special healthcare needs (CSHCN), by improving care coordination. However, community-based primary care practices may be challenged to deliver comprehensive care coordination to complex subsets of CSHCN such as children with medical complexity (CMC). Linking a tertiary care center with the community may achieve cost effective and high quality care for CMC. The objective of this study was to evaluate the outcomes of community-based complex care clinics integrated with a tertiary care center. Methods A before- and after-intervention study design with mixed (quantitative/qualitative) methods was utilized. Clinics at two community hospitals distant from tertiary care were staffed by local community pediatricians with the tertiary care center nurse practitioner and linked with primary care providers. Eighty-one children with underlying chronic conditions, fragility, requirement for high intensity care and/or technology assistance, and involvement of multiple providers participated. Main outcome measures included health care utilization and expenditures, parent reports of parent- and child-quality of life [QOL (SF-36®, CPCHILD©, PedsQL™)], and family-centered care (MPOC-20®). Comparisons were made in equal (up to 1 year) pre- and post-periods supplemented by qualitative perspectives of families and pediatricians. Results Total health care system costs decreased from median (IQR) $244 (981) per patient per month (PPPM) pre-enrolment to $131 (355) PPPM post-enrolment (p=.007), driven primarily by fewer inpatient days in the tertiary care center (p=.006). Parents reported decreased out of pocket expenses (p<.0001). Parental QOL did not significantly change over the course of the study. Child QOL improved between baseline and 6 months in two PedsQL™ domains [Social (p=.01); Emotional (p=.003)], and between baseline and 1 year in two CPCHILD© domains [Health Standardization Section (p=.04); Comfort and Emotions (p=.03)], while total CPCHILD© score decreased between baseline and 1 year (p=.003). Parents and providers reported the ability to receive care close to home as a key benefit. Conclusions Complex care can be provided in community-based settings with less direct tertiary care involvement through an integrated clinic. Improvements in health care utilization and family-centeredness of care can be achieved despite minimal changes in parental perceptions of child health.

120 The Experience of Housing Need Amongst Families Caring for Children with Medical Complexity: A Qualitative Study

2021 ◽  
Vol 26 (Supplement_1) ◽  
pp. e85-e88
Author(s):  
Clara Moore ◽  
Kara Grace Hounsell ◽  
Arielle Zahavi ◽  
Danielle Arje ◽  
Natalie Weiser ◽  
...  
Keyword(s):  
Qualitative Study ◽  
Future Research ◽  
Complex Care ◽  
Housing Situation ◽  
Children With Medical Complexity ◽  
Trade Off ◽  
Housing Preferences ◽  
Medical Needs ◽  
Medical Complexity ◽  
The Impact

Abstract Primary Subject area Complex Care Background Caregivers of children with medical complexity (CMC) face many financial, social and emotional stressors related to their child’s medical condition(s). Previous research has demonstrated that financial stress among this population can have an impact on their housing situation. Families of CMC may face other unique housing challenges such as disability accommodations in the home and housing space and layout. Objectives The primary aim of this study was to explore families’ perspectives and experiences of housing need, and its relationship to their child’s health status as it pertains to CMC. Design/Methods We conducted a qualitative study using semi-structured interviews to identify themes surrounding families of CMC’s experiences of housing need. Parents of CMC were recruited through purposive sampling from the Complex Care Program at a tertiary pediatric health sciences centre. Recruitment ceased when thematic saturation was reached, as determined by consensus of the research team. Interviews were recorded, transcribed verbatim, coded, and analyzed using thematic analysis. Results Twenty parents completed the interview, of whom 89% were mothers and 42% identified a non-English language as their first language. Two major themes and five subthemes (in parentheses) were identified: 1) the impact of health on housing (housing preferences, housing possibilities, housing outcome as a trade-off) and 2) the impact of housing on health (health of the caregiver, health of the child). Some parents reported that their child’s medical needs resulted in specific preferences regarding the location and layout of their home. Parents also indicated that their caregiving role often affected their income and home ownership status, which in turn, affected their housing possibilities. Thus, the housing situation (location and layout of the home) was often the result of a trade-off between the parent’s housing preferences and possibilities. Conclusion Housing is a recognized social determinant of health. We found that among CMC, health also appears to be a significant determinant of housing as families reported that the health of their child impacted their housing preferences and the options available to them (possibilities). To support the health of CMC and their families, policies targeting improved access to subsidized housing, improved sources of funding and regulations allowing families who rent to make accessibility changes are vital. Future research should investigate the impact of household income on housing need and identify interventions to support appropriate housing for CMC.

Lessons Learned, Best Practices: Care Coordination for Children with Medical Complexity

2020 ◽  
Vol 49 (11) ◽  
pp. e457-e466
Author(s):  
John Maypole ◽  
Tiffany Gavin ◽  
Mary Ann de Banate ◽  
Matthew Sadof
Keyword(s):  
Best Practices ◽  
Care Coordination ◽  
Lessons Learned ◽  
Children With Medical Complexity ◽  
Medical Complexity

scholarly journals Estimated Nonreimbursed Costs for Care Coordination for Children With Medical Complexity

PEDIATRICS ◽  
2018 ◽  
Vol 143 (1) ◽  
pp. e20173562 ◽  
Author(s):  
Sarah D. Ronis ◽  
Richard Grossberg ◽  
Rabon Allen ◽  
Andrew Hertz ◽  
Lawrence C. Kleinman
Keyword(s):  
Care Coordination ◽  
Children With Medical Complexity ◽  
Medical Complexity

scholarly journals 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 ◽  
2019 ◽  
Vol 9 (8) ◽  
pp. e028121 ◽  
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.

Sign in / Sign up

Export Citation Format

Share Document