Australian children living with rare diseases:health service use and barriers to accessing care

Background Children with rare diseases experience challenges at home and school and frequently require multi-disciplinary healthcare.We aimed to determine health service utilization by Australian children with rare diseases and barriers to access-ing healthcare.Methods Parents completed an online survey on health professional and emergency department(ED)presentations,hospi-talization,and barriers to accessing services.Potential barriers to service access included residential location(city,regional,remote)and child health-related functioning,determined using a validated,parent-completed measure-of-function tool.Results Parents of 462 children with over 240 rare diseases completed the survey.Compared with the general population,these children were more likely to be hospitalized[odds ratio(OR)=17.25,95%confidence interval(CI)=15.50-19.20]and present to the ED(OR=4.15,95%CI=3.68-4.68)or a family physician(OR=4.14,95%CI=3.72-4.60).Child functional impairment was nil/mild(31%),moderate(48%)or severe(22%).Compared to children with nil/mild impair-ment,those with severe impairment were more likely to be hospitalized(OR=13.39,95%CI=7.65-23.44)and present to the ED(OR=11.16,95%CI=6.46-19.27).Most children(75%)lived in major cities,but children from regional(OR=2.78,95%CI=1.72-4.55)and remote areas(OR=9.09,95%CI=3.03-25.00)experienced significantly more barriers to healthcare access than children from major cities.Barriers included distance to travel,out-of-pocket costs,and lack of specialist medical and other health services.Conclusions Children with rare diseases,especially those with severe functional impairment have an enormous impact on health services,and better integrated multidisciplinary services with patient-centered care are needed.Access must be improved for children living in rural and remote settings.

Impact of an innovative tuberculosis financing and payment model on health service utilization by tuberculosis patients in China:do the poor fare better than the rich?

Background:Tuberculosis(TB)prevalence is closely associated with poverty in China,and poor patients face more barriers to treatment.Using an insurance-based approach,the China-Gates TB program Phase II was implemented between 2012 and 2014 in three cities in China to improve access to TB care and reduce the financial burden on patients,particularly among the poor.This study aims to assess the program effects on service use,and its equity impact across different income groups.Methods:Data from 788 and 775 patients at baseline and final evaluation were available for analysis respectively.Inpatient and outpatient service utilization,treatment adherence,and patient satisfaction were assessed before and after the program,across different income groups(extreme poverty,moderate poverty and non-poverty),and in various program cities,using descriptive statistics and multi-variate regression models.Key stakeholder interviews were conducted to qualitatively evaluate program implementation and impacts.Results:After program implementation,the hospital admission rate increased more for the extreme poverty group(48.5 to 70.7%)and moderate poverty group(45.0 to 68.1%),compared to the non-poverty group(52.9 to 643%).The largest increase in the number of outpatient visits was also for the extreme poverty group(4.6 to 5.7).The proportion of patients with good medication adherence increased by 15 percentage points in the extreme poverty group and by ten percentage points in the other groups.Satisfaction rates were high in all groups.Qualitative feedback from stakeholders also suggested that increased reimbursement rates,easier reimbursement procedures,and allowance improved patients'service utilization.Implementation of case-based payment made service provision more compliant to clinical pathways.Conclusion:Patients in extreme or moderate poverty benefited more from the program compared to a non-poverty group,indicating improved equity in TB service access.The pro-poor design of the program provides important丨essons to other TB programs in China and other countries to better address TB care for the poor.