Care Coordination for Children With Medical Complexity: Whose Care Is It, Anyway?

Kuo, Dennis Z.; McAllister, Jeanne W.; Rossignol, Lisa; Turchi, Renee M.; Stille, Christopher J.

doi:10.1542/peds.2017-1284g

Cited by 122 publications

(95 citation statements)

References 34 publications

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“…Barnert et al and Thomson et al stated the health of the child is intertwined with the health of the family and cannot be measured outside of the sphere of family health—the family is the patient. Our findings support acknowledging the family as a central unit of care; assisting parents with navigating and coordinating the broader social and medical systems; supporting disease and family transitions; and linking providers across institutions, community sites, and sectors …”

Section: Discussionsupporting

confidence: 61%

‘It would be much easier if we were just quiet and disappeared’: Parents silenced in the experience of caring for children with rare diseases

Currie

Szabo

2019

Health Expectations

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Background Parent experiences of caring for children with neurodevelopmental disease have been silenced and constrained by social, political and health influences. There is a need to co‐construct new meanings and interpretations of parenting a child with complex disabilities by having an increased understanding of the struggles and barriers for parents. Methods A hermeneutic phenomenology approach was applied in this inquiry. Fifteen parents of children with rare neurodevelopmental diseases participated in semi‐structured interviews. Results Parents experienced silencing or being silenced within interactions with health‐care and social care systems and providers. Interpretive thematic analysis revealed three insights: (a) parents experience a sense of disconnect and silencing as little is known or understood by health‐care providers about the experience of caring for children at home; (b) parents make strong efforts to be heard and acquire services within health and social systems as fighters, saviours and navigators; and (c) parents sacrifice themselves to the caregiving role and become therapists and caregivers to their medically fragile children at the cost of losing themselves as parents. Conclusion An understanding of parents’ experiences in caring for a child with a rare neurodevelopmental disease may provide insight to systemic health and social support challenges faced by families and mitigate appropriate and supportive policies and services.

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Section: Discussionsupporting

confidence: 61%

‘It would be much easier if we were just quiet and disappeared’: Parents silenced in the experience of caring for children with rare diseases

Currie

Szabo

2019

Health Expectations

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“…Technological barriers with internet access may improve as infrastructure for broadband internet access becomes more available, including in rural areas [16]. Scheduling and related financial obstacles may be mitigated as models of payment for CMC move away from fee-for-service towards value-based or bundled payments, which encompass care coordination and case management [17]. In addition, reimbursement for telehealth case management and patient care may provide a precedent for billing [18].…”

Section: Discussionmentioning

confidence: 99%

Implementation of a multidisciplinary discharge videoconference for children with medical complexity: a pilot study

Ravid

Zamora

Rehm³

et al. 2020

Pilot Feasibility Stud

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Background: The hospital to home transition for children with medical complexity (CMC) poses many challenges, including suboptimal communication between the hospital and medical home. Our objective was to evaluate the implementation of a discharge videoconference incorporating the patient, caregiver, primary care provider (PCP), hospitalist physician, and case manager. Methods:We evaluated implementation of this pilot intervention at a freestanding tertiary care children's hospital using mixed methods. A discharge videoconference was conducted for hospitalized children (< 18 years old) meeting complex chronic disease (C-CD) criteria. We collected field notes and conducted surveys and semistructured interviews. Outcomes included adoption, cost, acceptability, feasibility, and appropriateness. Adoption, cost, and acceptability were analyzed using descriptive statistics. Acceptability, feasibility, and appropriateness were summarized using thematic content analysis.Results: Adoption: A total of 4 CMC (9% of the 44 eligible children) had discharge videoconferences conducted. Cost (in provider time): On average, videoconferences took 5 min to schedule and lasted 21.5 min. Acceptability: All hospitalists involved (n = 4) were very likely to participate again. Interviews with caregivers (n = 4) and PCPs (n = 5) demonstrated that for those participating, videoconferences were acceptable and appropriate due to benefits including development of a shared understanding, remote physical assessment by the PCP, transparency, and humanization of the care handoff, and increased PCP comfort with care of CMC. Feasibility: Barriers included internet connection quality and scheduling constraints. Conclusions: This novel, visual approach to discharge communication for CMC had low adoption, possibly related to recruitment strategy. The videoconference posed low time burdens, and participating physicians and caregivers found them acceptable due to a variety of benefits. We identified several feasibility barriers that could be targeted in future implementation efforts.

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“…We suggest the international emphasis on the need for integration of healthcare, particularly for children with complex chronic conditions, provides an opportunity to address the vulnerabilities our survey has identified in England, and which are likely to exist in other settings where diabetic eye care is delivered outside pediatric services. Like all children with chronic medical conditions, those living with diabetes require the input of multiple specialists and services but also face the additional challenge of comprising only a small proportion of the total population with this condition and consequently are at risk of receiving adult‐centered care when they are seen by non‐pediatric specialists …”

Section: Discussionmentioning

confidence: 99%

Vulnerabilities in diabetic eye screening for children and young people in England

et al. 2019

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Background Children and young people (CYP) living with diabetes require integrated child‐centered care. We hypothesized that suboptimal uptake to diabetic retinopathy screening in CYP may be partly related to the degree of services integration. We investigated the structure of the current pediatric diabetic eye care pathway and associations between service‐level characteristics and screening uptake. Methods A quality improvement project between January and May 2017 comprising a survey of practice of all 158 pediatric diabetes services (pediatric diabetes units, PDUs) across England and secondary data analysis of routinely collected service data. Generalized linear models for proportional responses were fitted to investigate associations between reported PDU characteristics and screening uptake. Results 124 PDUs (78%) responded. In 67% (n = 83), patients could be referred directly to screening programs; the remainder relied on primary care for onward referral. 97% (n = 120) considered eye screening results useful for counseling patients but only 65% (n = 81) reported it was “easy” to obtain them. Factors independently associated with higher screening uptake were a higher proportion of patients referred from primary care (OR = 1.005; 95%CI = 1.004‐1.007 per 1% of increase), absence of “out‐of‐catchment area” patients (OR = 1.13; 95%CI = 1.04‐1.22), and easy access to eye screening results (OR = 1.45; 95%CI = 1.34‐1.56). Conclusions There is limited direct communication between the services involved in diabetic eye care for CYP in England. This risks reducing the effectiveness of diabetic retinopathy screening. Similar vulnerabilities are likely to exist in other countries where retinopathy screening for CYP has been “bolted on” to provision for adults.

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Care Coordination for Children With Medical Complexity: Whose Care Is It, Anyway?

Cited by 122 publications

References 34 publications

‘It would be much easier if we were just quiet and disappeared’: Parents silenced in the experience of caring for children with rare diseases

‘It would be much easier if we were just quiet and disappeared’: Parents silenced in the experience of caring for children with rare diseases

Implementation of a multidisciplinary discharge videoconference for children with medical complexity: a pilot study

Vulnerabilities in diabetic eye screening for children and young people in England

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