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Aim To identify the highest-priority clinical research areas related to children with neurological impairment and medical complexity among clinicians and caregivers. Method A modified, three-stage Delphi study using online surveys and guided by a steering committee was completed. In round 1, clinicians and family caregivers suggested clinical topics and related questions that require research to support this subgroup of children. After refinement of the suggestions by the steering committee, participants contributed to 1 (family caregivers) or 2 (clinicians) subsequent rounds to develop a prioritized list. Results A diverse international expert panel consisting of 49 clinicians and 12 family caregivers provided 601 responses. Responses were distilled into 26 clinical topics comprising 126 related questions. The top clinical topics prioritized for research were irritability and pain, child mental health, disorders of tone, polypharmacy, sleep, aspiration, behavior, dysautonomia, and feeding intolerance. The clinician expert panel also prioritized 10 specific research questions. Interpretation Study findings support a research agenda for children with neurological impairment and medical complexity focused on addressing clinical questions, prioritized by an international group of clinicians and caregivers.

Background: The birth of a child with a major congenital anomaly may create chronic caregiving stress for mothers, yet little is known about their psychiatric outcomes. Aims: To evaluate the association of the birth of a child with a major congenital anomaly with subsequent maternal psychiatric risk. Methods: This Danish nationwide cohort study included mothers who gave birth to an infant with a major congenital anomaly (n = 19 220) between 1997 and 2015. Comparators were randomly selected mothers, matched on maternal age, year of delivery and parity (n = 195 399). The primary outcome was any new-onset psychiatric diagnosis. Secondary outcomes included specific psychiatric diagnoses, psychiatric in-patient admissions and redeemed psychoactive medicines. Cox models were used to estimate hazard ratios (HRs), adjusted for socioeconomic and medical variables. Results: Mothers of affected infants had an elevated risk for a new-onset psychiatric disorder vs. the comparison group (adjusted HR, 1.16, 95% CI 1.11–1.22). The adjusted HR was particularly elevated during the first postpartum year (1.65, 95% CI 1.42–1.90), but remained high for years, especially among mothers of children with multiorgan anomalies (1.37, 95% CI 1.18–1.57). The risk was also elevated for most specific psychiatric diagnoses, admissions and medicines. Conclusions: Mothers who give birth to a child with a major congenital anomaly are at increased risk of new-onset psychiatric disorders, especially shortly after birth and for mothers of children with more severe anomalies. Our study highlights the need to screen for mental illness in this high-risk population, as well as to integrate adult mental health services and paediatric care.

Introduction The support of families in the care of children with medical complexity (CMC) requires the integration of health care providers' (HCPs') medical knowledge and family experience. Care plans largely represent HCP information, and care maps demonstrate the family experience. Understanding the intersection between a care plan and a care map is critical, as it may provide solutions to the widely recognized tension between HCP-directed care and patient- and family-centered care (PFCC). Method This study used qualitative methods to explore the experience and usefulness of care maps. Parents of CMC who already had a care plan, created care maps (n = 15). Subsequent interviews with parents (n = 15) and HCPs (n = 30) of CMC regarding both care maps and care plans were conducted and analyzed using thematic analysis. Results Data analysis exploring the relationship and utility of care plans and care maps revealed six primary themes related to using care plans and care maps that were grouped into two primary categories: (a) utility of care plans and maps; and (b) intersection of care plans and care maps. Discussion Care plans and care maps were identified as valuable complementary documents. Their integration offers context about family experience and respects the parents' experiential wisdom in a standard patient care document, thus promoting improved understanding and integration of the family experience into care decision making.

Aim Children with medical complexity require multiple providers and services to keep them well and at home. A care map is a patient/family-created diagram that pictorially maps out this complex web of services. This study explored what care maps mean for families and healthcare providers to inform potential for clinical use. Method Parents (n=15) created care maps (hand drawn n=10 and computer-generated n=5) and participated in semi-structured interviews about the process of developing care maps and their perceived impact. Healthcare providers (n=30) reviewed the parent-created care maps and participated in semi-structured interviews. Data were analysed for themes and emerging theory using a grounded theory analytical approach. Results Data analysis revealed 13 overarching themes that were further categorized into three domains: features (characteristics of care maps), functions (what care maps do), and emerging outcomes (benefits of care map use). These domains further informed a definition and a theoretical model of how care maps work. Interpretation Our findings suggest that care maps may be a way of supporting patient- and family-centred care by graphically identifying and integrating experiences of the family as well as priorities for moving forward. What this paper adds Care maps were endorsed as a useful tool by families and providers. They help healthcare providers better understand parental priorities for care. Parents can create care maps to demonstrate the complex burden of care. They are a unique visual way to incorporate narrative medicine into practice.

This is a protocol for a Cochrane Review (Intervention). The objectives are as follows: Main objective Our main objective is to assess the effectiveness of comprehensive care programmes that aim to improve care‐coordination and other aspects of healthcare for children with medical complexity. We aim to assess their effectiveness in relation to child and parent health, functioning and quality of life, quality of care, number of healthcare encounters, unmet healthcare needs, and total healthcare‐related costs. Secondary objective A secondary objective is to assess whether the effectiveness of comprehensive care programmes for children with medical complexity differs according to the programme setting (hospital‐based vs hospital‐community collaboration vs community‐based) and structure (multidisciplinary team vs nurse‐led).

AIM: To determine whether, and how, neonatal intensive care unit (NICU) parents want to receive information on disability risk in their children from early neurodevelopmental screening. METHOD: This was a qualitative interview study. Parents of hospitalized infants born preterm completed semi-structured interviews. Data were analysed using a directed content analysis approach. RESULTS: Thematic saturation was achieved after 19 interviews. Four themes characterized parent perceptions of early neurodevelopmental screening: (1) acceptability: most parents were in favour of neurodevelopmental screening if parents could refuse; (2) disclosure of results: parents want emotional preparation for results, especially false positives; (3) emotional burden of uncertainty: parents of children in the NICU balance taking their infant’s illness ‘day by day’ and preparing for an uncertain future. Parents expressed distress with screening that increased uncertainty about the future; and (4) disability: prior experience with disability informs parent concerns. INTERPRETATION: Parents interpret the risks and benefits of NICU developmental screening through the lens of prior experiences with disability. Most expressed interest in screening and emphasized a desire for autonomy, pretest counselling, and emotional preparation.

The electrical percolation threshold of different polyethylene/carbon nanotube nanocomposites was studied as a function of chain structure, matrix viscosity, and the effect of compatibilizer. The lower the viscosity of the matrix the lower is the percolation threshold, regardless of the chain architecture and degree of crystallization. To improve dispersion a series of acrylic acid copolymer are introduced into the system. The highest concentration of acid co-monomer that maintain miscibility with the polyethylene matrix is 5 wt.%. The compatibilizer in its pristine form does not have a significant effect on dispersion and on volume resistivity. When the acidic copolymer was modified with aminomethylpyridine, in order to facilitate π–π interaction with the nanotubes, a 4-decade reduction was recorder for the high viscosity matrices at 10 wt.% compatibilizer loading. Copyright © 2014 John Wiley & Sons, Ltd.

Background Integrated care has important implications for children with medical complexity (CMC) who rely on care and service delivery involving multiple providers in different places over time. Most studies describing complex care programmes focus on the effectiveness of care co-ordination rather than the process of system integration. This pilot study explores the implementation process of the Integrated Complex Care Model: a voluntary partnership between acute, rehabilitative and community care aimed at system integration through a key worker model to improve care co-ordination for CMC. Methods This descriptive study used qualitative analyses and syntheses to explore the process of inter-organizational collaboration under ‘real-life’ circumstances. Multiple methods and sources of data were gathered to support triangulation in understanding of enablers and barriers to model implementation. Forty hours of meeting minutes and administrative databases housing patient records were reviewed. Baseline demographic information was available for 23 families, including child health-related quality of life and healthcare utilization. A subset of 12 parental caregivers and 21 additional key informants participated in individual interviews or focus groups. Findings are presented using King and Meyer’s description of system integration and care co-ordination. Results Model enablers included dedication, timing, leadership and electronic care plan use/ communication among key workers, families and health providers. Barriers included assumptions about partner organizations, differing organizational structures and client information systems, constrained project resources and limited engagement of primary care. Parents perceived an electronic care plan as a facilitator of timely and effective care for CMC across multiple settings. Conclusions At a systems level, the integrated model fostered collaboration between partner organizations. At a family level, development of inter-organizational management structures and communication platforms; provision of adequate resourcing; and increased engagement of primary care may enable high level organizational integration aimed at improved care co-ordination for CMC. bs_bs_banner

Background The number of medically complex and fragile children (MCFC) cared for in children's hospitals is growing, necessitating the need for optimal care co-ordination. The purpose of this study was to describe the impact of a nurse practitioner/paediatrician-run complex care clinic in a tertiary care hospital on healthcare utilization, parental and primary care provider (PCP) perceptions of care and parental quality of life. Methods MCFC and their parents were recruited for ambulatory follow-up by the hospital team to complement care provided by the PCP in this mixed methods single centre pre- or post-evaluative study. Parents participated in semi-structured interviews within 48 h of discharge; further data were collected at 6 and 12 months. Healthcare utilization was compared with equal time periods pre-enrolment. Parental health was assessed with the SF-36; parental perceptions of care were assessed using the Larsen's Client Satisfaction Questionnaire and the Measure of Processes of Care; PCPs completed a questionnaire at 12 months. Parental and PCP comments were elicited. Comparisons were made with baseline data. Results Twenty-six children and their parental caregivers attended the complex care clinic. The number of days that children were admitted to hospital decreased from a median of 43 to 15 days, and outpatient visits increased from 2 to 8. Mean standardized scores on the SF-36 increased (improved) for three domains related to mental health. A total of 24 PCPs responded to the questionnaire (92% response); most found the clinic helpful for MCFC and their families. Parents reported improvements in continuity of care, family-centredness of care, comprehensiveness and thoroughness of care, but still experienced frustrations with access to services and miscommunication with the team. Conclusion A collaborative medical home focused on integrating community- and hospital-based services for MCFC is a promising service delivery model for future controlled evaluative studies.

This study combines inspection and lot-sizing decisions. The issue is whether to INSPECT another unit or PRODUCE a new lot. A unit produced is either conforming or defective. Demand need to be satisfied in full, by conforming units only. The production process may switch from a “good” state to a “bad” state, at constant rate. The proportion of conforming units in the good state is higher than in the bad state. The true state is unobservable and can only be inferred from the quality of units inspected. We thus update, after each inspection, the probability that the unit, next candidate for inspection, was produced while the production process was in the good state. That “good-state-probability” is the basis for our decision to INSPECT or PRODUCE. We prove that the optimal policy has a simple form: INSPECT only if the good-state-probability exceeds a control limit. We provide a methodology to calculate the optimal lot size and the expected costs associated with INSPECT and PRODUCE. Surprisingly, we find that the control limit, as a function of the demand (and other problem parameters) is not necessarily monotone. Also, counter to intuition, it is possible that the optimal action is PRODUCE, after revealing a conforming unit. © 2007 Wiley Periodicals, Inc. Naval Research Logistics, 2007

22q11 deletion syndrome (22qDS) is due to microdeletions of chromosome region 22q11.2. Little is known about the phenotype of adults. We reviewed available case reports of adults (age ≥18 years) with 22qDS and compared the prevalence of key findings to those reported in a large European survey of 22qDS (497 children and 61 adults) [Ryan et al., 1997: J. Med. Genet. 34:798–804]. Fifty-five studies reported on 126 adults (83 women, 40 men, 3 unknown sex), mean age 29.6 years (SD = 8.7 years). Compared with the European survey, adults with 22qDS reviewed had a lower rate of CHD, 30% versus 75%; χ2 = 88.65, df = 1, P < 0.0001, but higher rates of identified palate anomalies, 88% versus 15%; χ2 = 37.45, df = 1, P < 0.0001, and learning difficulties, 94% versus 79%; χ2 = 12.13, df = 1, P = < 0.0008. The most common finding reported was minor facial anomalies. Few reports provided details of minor physical anomalies. Psychiatric conditions were more prevalent, 36% versus 18%; χ2= 5.71, df = 1, P < 0.02, than in the survey: 60% of reviewed adults were transmitting parents (72% mothers) ascertained following diagnosis of affected offspring. They had lower rates of CHD, cleft palate, and psychiatric disorders but similar rates of learning disabilities, and other palate and facial anomalies compared with adults ascertained by other methods. The results suggest that learning disabilities and facial and palate anomalies may be key findings in 22qDS adults, but that ascertainment is a key factor in the observed phenotype. Comprehensive studies of adults with 22qDS identified independently of familial transmission are necessary to further delineate the phenotype of adults and to determine the natural history of the syndrome. Am. J. Med. Genet. 86:359–365, 1999. © 1999 Wiley-Liss, Inc.

Eco-paediatrics is an occasional feature in Evidence-Based Child Health: A Cochrane Review Journal. Our goal is to contribute to the worldwide discussion on reducing waste in health care. In each instalment, we will select a recent Cochrane review highlighting a practice, still in use, which the available evidence tells us should be discontinued.