IntroductionThe STARx Questionnaire was designed with patient and provider input, to measure self-management and transition skills in adolescents and young adults (AYA) with chronic health conditions. With proven reliability and an empirically-based factor structure, the self-report STARx Questionnaire requires further validation to demonstrate its clinical and research utility. In this study we examine the concurrent, predictive, and discriminant validity of the STARx Questionnaire.MethodsTo examine concurrent validity, the STARx Questionnaire was compared to two other published transition readiness tools. Predictive validity was examined using linear regressions between the STARx Total Score and literacy, medication adherence, quality of life, and health services use. Discriminant validity was examined by comparing the performance of three chronic illness conditions on the STARx Total Score and associated subscales.ResultsThe STARx Questionnaire and its subscales positively correlated with the scores for both transition readiness tools reflecting strong concurrent validity. The STARx Questionnaire also correlated positively with the literacy, self-efficacy, and adherence measures indicating strong predictive validity; however, it did not correlate with either quality of life or health care utilization. The performance of AYA across three different clinical conditions was not significant, indicating the clinical utility of this HCT tool for a variety of chronic health conditions.ConclusionThe strong validity of the STARx Questionnaire, in tandem with its strong reliability, indicated adequate psychometric properties for this generic self-report measure. These strong psychometric properties should contribute to the STARx being a viable measure of health care transition for both research and clinical purposes.

Background: While there has been a dramatic increase in the prevalence of diabetes in developing countries, such as Mexico, there is a critical need to better understand how the challenges that arise in shifting the focus from acute care to care for chronic conditions manifest at the level of patient care provision in the health care organization and community, especially in rural resource-poor communities. One step in this direction is the exploration of the potential that social capital may provide in improving our understanding of the relationships that exists among patients, health care providers and the broader community. Objectives: To examine the provision of health care for diabetes, as well as the beliefs, resources and relationships that exist among patients and families, health care teams and community partners that affect treatment for diabetes in a rural resource-poor community in Mexico. Methods: This study incorporated a qualitative action-research approach and data was collected via community asset mapping, surveys, semi-structured interviews and group discussions. Utilizing an action research model, the study procedures were iterative, whereby results from selected data collection techniques were used to inform subsequent iterations of data collection. Community resources were identified with key informant input and via community exploration, to record existing and potential diabetes-related resources. Surveys were administered to health care providers, patients and general community members. Semi-structured interviews and group discussion topics were informed by the Innovative Care for Chronic Conditions Framework as well as by prior data collection procedures such as the surveys and preceding interviews. The interviews and group discussions were conducted with health care providers, diabetic patients, and community leaders. Results: Community asset mapping revealed limited existence of health care resources available to the rural community in Mexico. Three salient themes emerged across health care providers, diabetic patients, and community leaders: (1) Cultural eating behaviors are important drivers in preventing and managing diabetes mellitus; (2) Diabetic patients are currently ill-prepared to adequately manage chronic conditions, such as chronic conditions; (3) Trust is an important facilitator and/or barrier for both patients and health care providers when searching for ways to enhance management of diabetes outside of the health care organization. Conclusion: An evidence-based understanding of the diabetes-related beliefs, current perceived performance of diabetes care provision, the availability of community resources and social capital can be used to leverage the health care in low-income communities where primary health services are limited in their availability and/or capacity. The informed construction of community-derived initiatives and interventions that integrate community resources and improve the social capital within the community can enhance the care for patients with diabetes by offering both alternative and complementary avenues of accessing care that supports long-term disease management.

Fatigue secondary to chronic illness (FSCI) is a common experience in individuals with chronic conditions, with fatigue impacting on performance of daily activities and health-related quality of life (HRQoL). Due to the higher prevalence of FSCI in women, they may experience even greater disruption to roles and activity engagement. The literature consistently points to three main aspects when defining fatigue regardless of diagnoses; a physical aspect, a psychological aspect, and the impact on activity and participation. Research into the first two aspects has demonstrated relationships between fatigue, pain, depression, and social support. However, examination of the third aspect has been largely overlooked with respect its relationship to, and impact on, fatigue. Leisure theorists have hypothesized that engagement in leisure activities makes a positive contribution to physical and mental health. Previous research has measured leisure activities based on frequency of, or satisfaction with, participation. While some research has shown that physical and social activities have positive health benefits, gaps still exist in understanding the relative contribution of different types of leisure participation to fatigue and HRQoL.For example, little research has examined the contributions of leisure participation and leisure satisfaction to HRQoL and fatigue in women with chronic conditions. One explanation for the lack of research may be the absence of measurement tools developed to classify and quantify participation in different types of leisure activities for women with FSCI. Without a measurement tool, the relative contribution of participation in different activities (by frequency and/or satisfaction) to fatigue and HRQoL cannot be examined. / This PhD research aimed to fill the current gaps in understanding different types of leisure participation in related to fatigue and HRQoL. It sought to address two component parts: development and testing of the Classification of Leisure Participation (CLP) Scale; and an examination of the contribution of leisure participation to fatigue and HRQoL in women with FSCI.

Nos modelos conceituais sobre Qualidade de Vida (QV), geralmente temos encontrado, como enfoque central, a percepção do indivíduo sobre suas experiências e a satisfação em relação a diferentes áreas da vida. QV é então assumida como um conceito subjetivo. Instrumentos para sua mensuração têm sido desenvolvidos e as validações transculturais são processos importantes, relacionados à validade e confiabilidade das versões adaptadas possibilitando que os resultados possam ser comparáveis entre diferentes culturas. Este estudo metodológico teve como objetivo analisar o conteúdo do questionário DISABKIDS 37 da perspectiva dos respondentes e descrever sua tradução mexicana, adaptação cultural e validação em um estudo piloto, com vistas à primeira análise psicométrica para simulação do teste de campo. O método utilizado foi o transversal conduzido em hospitais pediátricos do México em uma amostra acidental de 47 crianças/adolescentes com asma ou epilepsia, com idades entre 8 e 18 anos e seus pais ou cuidadores. A validação semântica foi observada por meio do entendimento das crianças em relação aos itens do questionário DISABKIDS 37, a consistência interna mostrou resultados adequados para o total (0,93/0,95 crianças/cuidadores) e as dimensões do instrumento. Intercorrelações entre as sub-escalas indicaram correlações significantes umas com as outras. O DISABKIDS 37 discriminou bem entre as condições e severidade. Foram encontradas correlações moderadas entre as versões crianças e pais para todas as dimensões da escala. A dimensão Tratamento foi exceção, com concordância fraca. Em relação ao escore geral, a concordância foi forte. Como conclusões as versões finais do DISABKIDS 37 para o México foram fáceis de entender e poderão ser utilizadas como instrumentos úteis para análise da Qualidade de Vida Relacionada à Saúde (QVRS) em crianças e adolescentes com condições crônicas. / Generally, we find as the main focus in the conceptual models about Quality of Life (QoL), the individual perceptions on one?s experiences and satisfaction regarding different areas of life. QoL is assumed as a subjective concept. Instruments for its measurement have been developed and its transcultural validations are important processes, related to the validity and reliability of the adapted versions, which allow the results to be comparable between different cultures. This methodological study aimed to analyze the content of the questionnaire DISABKIDS 37 from the perspective of the respondents and describe its Mexican translation, cultural adaptation and validation of a pilot study as a first psychometric analysis for the simulation of the field test. The method used was the cross-sectional carried out in pediatric hospitals in Mexico in an accidental sample of 47 children/adolescents with asthma or epilepsy, age between 8 and 18 years old and their parents or caregivers. The semantic validation was observed through the understanding of children regarding the items of the DISABKIDS 37 questionnaire, the internal consistency showed adequate results for the total (0.93/0.95 children/caregivers) and the instruments dimensions. Intercorrelation between the sub-scales indicated significant correlations with one another. The DISABKIDS 37 discriminated between conditions and severity. Moderated correlations were found between versions children and parents for all the dimensions of the scale. The dimension Treatment was an exception, with weak concordance. Regarding the general score, the concordance was strong. Concluding, the final versions of the DISABKIDS 37 for Mexico were easy to understand and can be used as useful instruments for the Health Related Quality of Life (HRQL) analysis in children and adolescents with chronic conditions.

The landscape of the United States public school system was greatly improved upon with the creation of The Individuals with Disabilities Education Act of 2004 (IDEA 2004). This act established a standard that allowed all school aged children living with chronic illnesses to integrate into public school systems. This mandate currently impacts over 12 million children living with chronic illness including and not limited to asthma, seizure disorders, developmental delay, cystic fibrosis, traumatic brain injuries, anxiety and cancer. IDEA 2004 extended healthcare into public school systems and as a result, increased the average acuity of students that school nurses (SNs) care for. It is estimated that 15% of school-aged children miss 11 or more school days per year because of illness or injury demonstrating evidence of increased student acuity and a need to provide more appropriate care for these students in order to increase their time spent in the academic setting. Adequate SN and primary care provider (PCP) communication is essential to reduce absenteeism for this population and to ensure that students are safe during their time spent away from home and healthcare clinics. From this quality improvement project, more is understood pertaining to the communication patterns between SNs and PCPs and recommendations are provided in order to increase effective SN and PCP communication.

The aim of the present research was threefold: to investigate the fears of parents of children with chronic conditions; to evaluate the effectiveness of their treatment with either mindfulness-based therapy or cognitive behavioural therapy (CBT); and to assess treatment outcome in terms of health-related quality of life (HRQoL). Long-term stress can lead to some form of chronic stress reaction. In study one, fears of future cancer recurrence and of late effects of treatment were most prominent among parents of CNS tumour patients. Study two investigated the effectiveness of two group-based interventions on stress and burnout among parents of children with chronic conditions. Parents were offered either a CBT or a mindfulness programme. Both interventions significantly decreased stress and burnout. Study three focused on the HRQoL and life satisfaction of the parents in study two. The results indicate improvements for participants in both treatment groups regarding certain areas of HRQoL and life satisfaction. To conclude, fears concerning future cancer recurrence and late effects of treatment are most prominent among parents of children with cancer. Another conclusion is that CBT and mindfulness decrease stress and burnout and may have a positive effect on areas of HRQoL and life satisfaction. / The aim of the present research was threefold: to investigate the fears of parents of children with chronic conditions who suffer from fears, stress and burnout; to evaluate the effectiveness of their treatment with either mindfulness-based therapy or cognitive behavioural therapy (CBT); and to assess treatment outcome in terms of health-related quality of life (HRQoL). Research on parents of children with chronic conditions has shown that this parent group frequently suffers from psychological problems. Long-term stress can lead to some form of chronic stress reaction. In study one, parents of children with brain tumours were asked to rate the extent to which they experienced a set of specific fears related to their child’s brain tumour and its treatment. Fears of future cancer recurrence and of late effects of treatment were most prominent among parents of CNS tumour patients. Study two investigated the effectiveness of two group-based interventions on stress and burnout among parents of children with chronic conditions. After a waiting list control period, parents were offered either a CBT or a mindfulness programme. After eight group therapy sessions, both interventions significantly decreased stress and burnout. Study three focused on the HRQoL and life satisfaction of the parents in study two. The results indicate improvements for participants in both treatment groups regarding certain areas of HRQoL and life satisfaction. To conclude, many parents of children with chronic conditions suffer from stress-related mental illness and need targeted interventions for their own problems. The present research concludes that fears concerning future cancer recurrence and concerning late effects of treatment are most prominent among parents of children with cancer. Another conclusion is that CBT and mindfulness decrease stress and burnout and may have a positive effect on areas of HRQoL and life satisfaction in parents of children with chronic conditions.

No description available.

Purpose: The study examined the associations of multiple psychiatric and chronic conditions with the self-reported history of major depressive disorder (MDD) among patients with opioid use disorder (OUD) and tested whether the associations differed by gender. Methods: We conducted a secondary data analysis of baseline data from a clinical trial including 1,646 participants with OUD, of which 465 had MDD. A variable cluster analysis was used to classify chronic medical and psychiatric conditions. Multivariable logistic regression analyses were used to estimate their associations with MDD in subjects with OUD. Results: Nine variables were divided into three clusters: cluster 1 included heart condition, hypertension, and liver problems; cluster 2 included gastrointestinal (GI) problems and head injury, and cluster 3 included anxiety disorder, bipolar disorder, and schizophrenia. The overall prevalence of MDD in participants with OUD was 28.3% (22.8% for males and 39.5% for females). Gender, anxiety disorder, schizophrenia, liver problems, heart condition, GI problems, and head injury were significantly associated with MDD. Gender-stratified analyses showed that bipolar disorder, liver problems and individuals with one chronic condition were associated with MDD only in males, whereas heart condition, hypertension, and GI problems were associated with MDD only in females. In addition, anxiety disorder, head injury, individuals with one or more than two psychiatric conditions, and individuals with more than two chronic conditions were associated with MDD regardless of gender. Conclusions: Treatment plans in patients with OUD should not only address MDD but also co-morbid psychiatric and chronic medical conditions that occur with MDD.

This study examined the associations of polysubstance use, mood disorders, and chronic conditions with the history of anxiety disorder among patients with opioid use disorder (OUD). We performed a secondary analysis of the baseline data from a clinical trial including 1,645 individuals with OUD, of which 513 had anxiety disorder. Substance use disorders (SUDs) included alcohol, amphetamines, cannabis, cocaine, and sedative use disorders. Mood disorders included major depressive disorder (MDD) and bipolar disorder (BD). Chronic conditions were allergies, gastrointestinal problem(s), skin problem(s), and hypertension. Sedative use disorder, MDD, BD, skin problems, and hypertension were significantly associated with anxiety disorder (p < 0.05). Additionally, more than two SUDs, two mood disorders, and more than two chronic conditions were significantly associated with anxiety disorder (p < 0.05). These findings highlight the comorbid mental health and physical health problems in individuals with OUD, as well as the need for integrated multidisciplinary treatment plans.

No description available.