Children with Special Health Care Needs: Comparison of the Effects of Home Care Setting, Prescribed Pediatric Extended Care Setting, and Long-Term Care Setting on Child and Family Health Outcomes and Health Care Service Use

Technological advances during the past 30 years have dramatically improved survival rates for children with life-threatening conditions (preterm births, congenital anomalies, disease, or injury) resulting in children with special health care needs (CSHCN), children who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who require health and related services beyond that required by children generally. There are approximately 10.2 million of these children in the United States or one in five households with a child with special health care needs. Care for these children is limited to home care, medical day care (Prescribed Pediatric Extended Care; P-PEC) or a long term care (LTC) facility. There is very limited research examining health outcomes of CSHCN and their families. The purpose of this research was to compare the effects of home care settings, P-PEC settings, and LTC settings on child health and functioning, family health and function, and health care service use of families with CSHCN. Eighty four CSHCN ages 2 to 21 years having a medically fragile or complex medical condition that required continual monitoring were enrolled with their parents/guardians. Interviews were conducted monthly for five months using the PedsQL TM Generic Core Module for child health and functioning, PedsQL TM Family Impact Module for family health and functioning, and Access to Care from the NS-CSHCN survey for health care services. Descriptive statistics, chi square, and ANCOVA were conducted to determine differences across care settings. Children in the P-PEC settings had a highest health care quality of life (HRQL) overall including physical and psychosocial functioning. Parents/guardians with CSHCN in LTC had the highest HRQL including having time and energy for a social life and employment. Parents/guardians with CSHCN in home care settings had the poorest HRQL including physical and psychosocial functioning with cognitive difficulties, difficulties with worry, communication, and daily activities. They had the fewest hours of employment and the most hours providing direct care for their children. Overall health care service use was the same across the care settings.

Quality of life and chronic disease in patients receiving primary health care

Problem Statement: Chronic disease entails physical, psychological and social issues with a decrease in the quality of life. The assessment of QoL has been applied as indicator in patients with chronic diseases. Research Questions: What is the quality of life in patients with chronic disease? What are the socio-demographic variables that influence the quality of life in patients? Purpose: To assess the quality of life in patients suffering from chronic disease and identify socio-demographic variables which influence the quality of life of patients suffering from chronic disease. Research Methods: We conducted a cross-sectional analytical study using a sample composed of 228 users (134 females) from a Family Health Unit in the municipality of Viseu. Data collection was made by means of a questionnaire, consisting of sociodemographic variables, the SF-12 scale and the existence of chronic disease was assessed through the questions – “Do you currently suffer from any chronic disease?”; “If so, which one(s)?”. Findings: The most common chronic diseases were hypertension (59.9%). Female patients with a chronic disease reported worse physical functioning, role-physical and role-emotional; increased bodily pain and better quality of life regarding general health. Male patients showed worse role-physical, increased bodily pain and vitality. Sociodemographic variables which were associated with quality of life were area of residence, academic qualifications and work situation. Conclusion: Chronic disease affects quality of life negatively. Quality of life in both patients groups was associated with socio-demographic variables. Health-related quality of life is an essential issue and should be considered as a priority in health policies.

Satisfaction of users of primary health care with nursing care : sample of the central region of Portugal

Introdução: A satisfação dos doentes constitui um indicador indispensável para a avaliação da qualidade dos cuidados e há evidência da sua correlação com os resultados em saúde. A satisfação com os cuidados de saúde é um conceito multidimensional que considera aspetos como acesso, organização e interação doente - profissional. Consideramos que os cuidados de enfermagem, em particular, são fundamentais no processo saúde/doença. Objetivos: Validar uma escala para avaliar a satisfação dos utentes face aos cuidados de enfermagem, adaptado do instrumento EUROPEP e avaliar a satisfação dos utentes dos cuidados de saúde primários da região centro de Portugal. Material e métodos: Estudo transversal, com uma amostra de 827 utentes adultos (maioria do sexo feminino 64,4%) com uma média de idade de 50,08±18,58 anos. Os dados foram recolhidos através de um questionário, constituído por variáveis sociodemográficas, o instrumento EUROPEP (Ferreira, 1995) para avaliar a satisfação com os cuidados de saúde primários e para avaliar a satisfação especificamente com a equipa de enfermagem elaboramos questões adaptadas do instrumento EUROPEP e agrupadas nas dimensões relação de ajuda, dimensão interpessoal e instrumental. A consistência interna, reprodutibilidade e análise de conteúdo foram avaliados com recurso ao SPSS 23.0; considerando a consistência aceitável para um de Cronbach > 0,70. O coeficiente para cada item é apresentado com um intervalo de confiança de 95%. Resultados: Em todas as dimensões do questionário EUROPEP, a maior percentagem de satisfação com os cuidados situou-se entre “boa” e “muito boa”. As dimensões criadas para avaliar especificamente os cuidados de enfermagem apresentaram um coeficiente de α de Cronbach total de 0,972. Conclusões: Estes resultados sugerem que as dimensões criadas para avaliar os cuidados de enfermagem serão úteis para a investigação na população Portuguesa. A satisfação do utente é decisiva para a qualidade e eficiência dos cuidados prestados, sendo necessário o compromisso de todos os prestadores na implementação de práticas sistemáticas de gestão que conduzam à satisfação, dando particular atenção à melhoria contínua dos processos organizacionais. Palavras-chave: Satisfação dos Utentes; cuidados de saúde primários, cuidados de enfermagem, adulto, Portugal

Structured professional judgement approach to risk assessment: generalisability across patient groups for the prediction of adverse outcomes in secure mental health care

This is a redacted version of the the final thesis. Copyright material has been removed to comply with UK Copyright Law.

Do health care providers use online patient ratings to improve the quality of care?

Background: Physician-rating websites have become a popular tool to create more transparency about the quality of health care providers. So far, it remains unknown whether online-based rating websites have the potential to contribute to a better standard of care. Objective: Our goal was to examine which health care providers use online rating websites and for what purposes, and whether health care providers use online patient ratings to improve patient care. Methods: We conducted an online-based cross-sectional study by surveying 2360 physicians and other health care providers (September 2015). In addition to descriptive statistics, we performed multilevel logistic regression models to ascertain the effects of providers' demographics as well as report card-related variables on the likelihood that providers implement measures to improve patient care. Results: Overall, more than half of the responding providers surveyed (54.66%, 1290/2360) used online ratings to derive measures to improve patient care (implemented measures: mean 3.06, SD 2.29). Ophthalmologists (68%, 40/59) and gynecologists (65.4%, 123/188) were most likely to implement any measures. The most widely implemented quality measures were related to communication with patients (28.77%, 679/2360), the appointment scheduling process (23.60%, 557/2360), and office workflow (21.23%, 501/2360). Scaled-survey results had a greater impact on deriving measures than narrative comments. Multilevel logistic regression models revealed medical specialty, the frequency of report card use, and the appraisal of the trustworthiness of scaled-survey ratings to be significantly associated predictors for implementing measures to improve patient care because of online ratings. Conclusions: Our results suggest that online ratings displayed on physician-rating websites have an impact on patient care. Despite the limitations of our study and unintended consequences of physician-rating websites, they still may have the potential to improve patient care.