Care coordination Experiences of Low-Income Parents of Children and Youth with Special Health Care Needs: An Exploratory Study.

OBJECTIVE: To explore parent perspectives on barriers, facilitators, and priorities related to coordinating care for children and youth with special health care needs (CYSHCN). METHODS: Thirty-nine parents of Medicaid-eligible CYSHCN participated in focus groups and completed a brief survey about their child's health insurance coverage, access to specialized services, and need for support with service coordination. Survey data were analyzed using descriptive statistics. Focus group data were analyzed by multiple independent coders using an approach that combines inductive reasoning with predetermined coding strategies. RESULTS: Sixty-seven percent of parents reported that they needed care coordination support. Qualitative data were organized into three main themes: the work of caregiving; the impact of caregiving on multiple aspects of parents' lives; and caregivers' needs related to emotional acceptance, service referrals and navigation, and developmental transitions. CONCLUSIONS: Findings support importance of services such as medical homes, care coordinators, peer navigators, respite care, and transition planning.

Analysis of Characteristics and Survival of Primary Cutaneous Adenoid Cystic Carcinoma of the Head and Neck.

BACKGROUND/OBJECTIVES: Primary cutaneous adenoid cystic carcinoma (PCACC) is a rare skin tumor. The head and neck (H&N) is the most common anatomical location. Due to limited published cases, its clinical course and management are not well understood. METHODS: The National Cancer Database (NCDB) was queried for all cases of H&N PCACC diagnosed from 2004 to 2016. Kaplan-Meier (KM) and Cox proportional hazards models were used to determine clinicopathological and treatment factors associated with survival outcomes. RESULTS: A total of 201 cases were analyzed. The average age of diagnosis was 57.7 years (± SD 15.8). There was a female predilection (57.7%; P < .05) with the most common primary site being the ear (58.2%). The average tumor size was 15.9 mm in diameter. The most common treatment was surgery alone (51.7%) with wide local excision being the common surgery performed (36.3%). 5-year and 10-year OS were 87.0% and 76.0%, respectively. A total of 65.8% of cases were localized (Stage I and II). KM analysis indicated that gender, age, insurance status, Charlson-Deyo Comobordity Score, and stage were significant predictors of OS (P < .05). Cox proportional hazards analysis revealed that patients with both private (HR 0.11, 95%CI [0.019-0.670]; P = .02) and government (HR 0.12, 95%CI [0.019-0.972]; P = .03) health insurance had a significantly decreased hazard of death than patients who were uninsured. Increasing age was associated with an increased hazard of death (HR 1.06, 95%CI [1.016-1.110]; P = .01). CONCLUSION: This study represents the largest cohort of H&N PCACC studied to date and provides important clinicopathologic information for this rare tumor. Additionally, our results emphasize the importance of health insurance as an independent predictor of survival in PCACC.

Parental Immunisation Needs and Attitudes Survey in paediatric hospital clinics and community maternal and child health centres in Melbourne, Australia.

AIM: Despite Australia's high vaccination rates, an estimated 3.3% of children are under-vaccinated due to vaccine refusal and the proportion of parents with concerns is unclear. Amongst Australian parents, we aimed to determine the prevalence of vaccine concerns, resources and health-care providers (HCPs) accessed and satisfaction with these resources in two different settings. We also aimed to identify relationships between the level of vaccine concern, socio-economic status and vaccine uptake. METHODS: Parents of children under 5 years attending general paediatric clinics in a tertiary paediatric hospital (n = 301/398, 76%) and children under 19 months attending community maternal child health centres (n = 311/391, 81%) completed the survey. Vaccination status was obtained from the Australian Childhood Immunisation Register. RESULTS: Despite high support for vaccination (98%, confidence interval (CI) 97-99), 43% of parents reported vaccine concerns (CI 40-47) including the number of vaccines given in the first 2 years (25%, CI 22 to 29), vaccine ingredients (22%, CI 19-25), allergies (18%, CI 15-21), weakening of the immune system (17%, CI 14-20) and autism (11%, CI 8-13). HCPs were the most commonly accessed and trusted information source. In all, 23% of parents reported insufficient knowledge to make good vaccination decisions (CI 20-26). There was little evidence of an association between parental vaccine acceptance or socio-economic status and vaccination status. CONCLUSIONS: Despite high support for vaccines, nearly half of Australian parents have some concerns and a quarter lack vaccine decision-making confidence regarding childhood vaccines. Parents frequently access and report high trust in HCPs, who are best placed to address parental vaccine concerns through provision of clear information, using effective communication strategies. Further research in more highly hesitant populations is required to determine the relationship between the level and nature of vaccination concerns and vaccine uptake.