Social Support Networks and Self-Efficacy of Peruvian Women Diagnosed with Cancer: A Biocultural Analysis of Health Behavior Constructs

Thesis (Ph.D.)--University of Washington, 2016-06

Anxiety and social worries in children with Asperger syndrome

Objective: The current study examined anxiety and social worries in a group of children with Asperger syndrome (AS). Method: Sixty-five children with AS were compared with a clinically anxious sample and a normative sample using parent and child reports. Results: Comparisons between clinically anxious children and children with AS showed similar scores on overall anxiety and on six anxiety subscales using child reports. Parent reports revealed higher ratings of overall anxiety and described children with AS experiencing more obsessive-compulsive symptoms and physical injury fears than clinically anxious children. Conclusions: Children with AS without a diagnosis of anxiety, present with more anxiety symptoms than a normal population and with a different profile than a clinically anxious population. Study limitations are identified and considerations for future research presented.

Psychosocial and non-psychosocial risk factors for the new diagnosis of diabetes in elderly women

Objectives: Determine psychosocial variables associated with the new diagnosis of diabetes in elderly women. Examine whether variables remained significant predictors after controlling for non-psychosocial risk factors and the frequency of doctor visits. Research design and methods: A longitudinal cohort study was conducted using data from 10 300 women who completed a survey in 1996 and 1999. The women were aged between 70 and 74 years of age in 1996. The were asked to provide self-reports on a number of psychosocial and non-psychosocial variables in 1996 and on whether they had been diagnosed for the first time with diabetes in the 3-year period. The relationships between the potential risk factors and new diagnosis of diabetes were examined using binary logistic regression analysis. Results: Univariate results showed that not having a current partner, having low social support and having a mental health index score in the clinical range were all associated with higher risks of being diagnosed with diabetes for the first time. However the multivariate results showed that only a mental health index score in the clinical range and not having a current partner provided unique prediction of being newly diagnosed with diabetes. Of the non-psychosocial variables measured, only having a high BMI and hypertension were associated with increased risks of new diagnosis, while there was also evidence of a U shaped relationship between alcohol consumption and new diagnosis. Even after adjusting for frequency of doctor visits and non-psychosocial risk factors, a mental health index in the clinical range proved to still be a significant risk factor. Conclusions: A score on the mental health index that is within the clinical range is an independent risk factor for the new diagnosis of diabetes in elderly women. (c) 2006 Elsevier Ireland Ltd. All rights reserved.

The development of a research agenda for substance use disorders diagnosis in the Diagnostic and Statistical Manual of Mental Disorders, fifth edition (DSM-V)

Aims paper describes the background to the establishment of the Substance Use Disorders Workgroup, which was charged with developing the research agenda for the development of the next edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM). It summarizes 18 articles that were commissioned to inform that process. Methods A preliminary list of research topics, developed at the DSM-V Launch Conference in 2004, led to the identification of subjects that were subject to formal presentations and detailed discussion at the Substance Use Disorders Conference in February 2005. Results The 18 articles presented in this supplement examine: (1) categorical versus dimensional diagnoses; (2) the neurobiological basis of substance use disorders; (3) social and cultural perspectives; (4) the crosswalk between DSM-IV and the International Classification of Diseases Tenth Revision (ICD-10); (5) comorbidity of substance use disorders and mental health disorders; (6) subtypes of disorders; (7) issues in adolescence; (8) substance-specific criteria; (9) the place of non-substance addictive disorders; and (10) the available research resources. Conclusions In the final paper a broadly based research agenda for the development of diagnostic concepts and criteria for substance use disorders is presented.

Challenges in the diagnosis of Marfan syndrome

Marfan syndrome (MFS) is a multisystem disorder of connective tissue that is inherited in an autosomal dominant fashion, and results from mutations in the FBN1 gene on chromosome 15. Diagnosis is challenging as it requires definition of diverse clinical features and input from a variety of specialists. Genetic testing of FBN1 is time consuming, expensive and complex, and may not solve the diagnostic dilemma. Failure to make a diagnosis or making an inappropriate diagnosis of MFS has social, lifestyle and medical consequences for the individual as well as the family.

QUALIDADE DE VIDA, SUPORTE SOCIAL E CONTROLE GLICÊMICO EM PORTADORES DE DIABETES MELLITUS TIPO2

Diabetes Mellitus é uma doença crônica degenerativa que impõe uma série de limitações em função da necessidade de tratamento constante. Por isso, considerou-se que o estudo da qualidade de vida e suporte social poderia trazer conhecimento para melhorar a qualidade das intervenções para estes pacientes. O objetivo deste trabalho foi avaliar a qualidade de vida, suporte social e controle glicêmico de portadores de Diabetes Mellitus tipo2. Trata-se de um estudo descritivo e transversal, desenvolvido com 120 pacientes de ambos os gêneros, atendidos no ambulatório de endocrinologia de um hospital situado na cidade de São Bernardo do Campo. Para coleta dos dados foram utilizados os seguintes instrumentos: questionário para caracterização da população, questionário de qualidade de vida (WHOQOL-BREF) e a Escala de Percepção de Suporte Social (EPSS). Os dados referentes ao controle glicêmico foram coletados nos prontuários dos pacientes. Para análise dos dados utilizou-se à estatística descritiva e provas estatísticas (Pearson, QuiQuadrado, Exato de Fisher, Anova e Pos-hoc). Os resultados indicaram que o domínio das relações sociais foi o que mais contribuiu a qualidade de vida. E as variáveis tempo de diagnóstico, insulinoterapia, número de dependentes, escolaridade, dieta e medicação interferiram na qualidade de vida e na qualidade do tratamento. Estes resultados chamam a atenção para que as avaliações médicas devam ser atreladas a avaliações da qualidade de vida, suporte social e também variáveis que interferem na qualidade do tratamento para que, desta forma possam redimensionar ou melhorar fazeres ligados às intervenções com estes pacientes.

Quantifying short-term dynamics of Parkinson's disease using self-reported symptom data from an internet social network

Background: Parkinson’s disease (PD) is an incurable neurological disease with approximately 0.3% prevalence. The hallmark symptom is gradual movement deterioration. Current scientific consensus about disease progression holds that symptoms will worsen smoothly over time unless treated. Accurate information about symptom dynamics is of critical importance to patients, caregivers, and the scientific community for the design of new treatments, clinical decision making, and individual disease management. Long-term studies characterize the typical time course of the disease as an early linear progression gradually reaching a plateau in later stages. However, symptom dynamics over durations of days to weeks remains unquantified. Currently, there is a scarcity of objective clinical information about symptom dynamics at intervals shorter than 3 months stretching over several years, but Internet-based patient self-report platforms may change this. Objective: To assess the clinical value of online self-reported PD symptom data recorded by users of the health-focused Internet social research platform PatientsLikeMe (PLM), in which patients quantify their symptoms on a regular basis on a subset of the Unified Parkinson’s Disease Ratings Scale (UPDRS). By analyzing this data, we aim for a scientific window on the nature of symptom dynamics for assessment intervals shorter than 3 months over durations of several years. Methods: Online self-reported data was validated against the gold standard Parkinson’s Disease Data and Organizing Center (PD-DOC) database, containing clinical symptom data at intervals greater than 3 months. The data were compared visually using quantile-quantile plots, and numerically using the Kolmogorov-Smirnov test. By using a simple piecewise linear trend estimation algorithm, the PLM data was smoothed to separate random fluctuations from continuous symptom dynamics. Subtracting the trends from the original data revealed random fluctuations in symptom severity. The average magnitude of fluctuations versus time since diagnosis was modeled by using a gamma generalized linear model. Results: Distributions of ages at diagnosis and UPDRS in the PLM and PD-DOC databases were broadly consistent. The PLM patients were systematically younger than the PD-DOC patients and showed increased symptom severity in the PD off state. The average fluctuation in symptoms (UPDRS Parts I and II) was 2.6 points at the time of diagnosis, rising to 5.9 points 16 years after diagnosis. This fluctuation exceeds the estimated minimal and moderate clinically important differences, respectively. Not all patients conformed to the current clinical picture of gradual, smooth changes: many patients had regimes where symptom severity varied in an unpredictable manner, or underwent large rapid changes in an otherwise more stable progression. Conclusions: This information about short-term PD symptom dynamics contributes new scientific understanding about the disease progression, currently very costly to obtain without self-administered Internet-based reporting. This understanding should have implications for the optimization of clinical trials into new treatments and for the choice of treatment decision timescales.

Social control in online communities of consumption:a framework for community management

Online communities of consumption (OCCs) represent highly diverse groups of consumers whose interests are not always aligned. Social control in OCCs aims to effectively manage problems arising from this heterogeneity. Extant literature on social control in OCCs is fragmented as some studies focus on the principles of social control, while others focus on the implementation. Moreover, the domain is undertheorized. This article integrates the disparate literature on social control in OCCs providing a first unified conceptualization of the topic. The authors conceptualize social control as a system, or configuration, of moderation practices. Moderation practices are executed during interactions operating under different governance structures (market, hierarchy, and clan) and serving different purposes (interaction initiation, maintenance, and termination). From this conceptualization, important areas of future research emerge and research questions are developed. The framework also serves as a community management tool for OCC managers, enabling the diagnosis of social control problems and the elaboration of strategies and tactics to address them.

DSM-5 Autism Spectrum Disorder:in search of essential behaviours for diagnosis

Background: Despite initial concerns about the sensitivity of the proposed diagnostic criteria for DSM-5 Autism Spectrum Disorder (ASD; e.g. Gibbs et al., 2012; McPartland et al., 2012), evidence is growing that the DSM-5 criteria provides an inclusive description with both good sensitivity and specificity (e.g. Frazier et al., 2012; Kent, Carrington et al., 2013). The capacity of the criteria to provide high levels of sensitivity and specificity comparable with DSM-IV-TR however relies on careful measurement to ensure that appropriate items from diagnostic instruments map onto the new DSM-5 descriptions.Objectives: To use an existing DSM-5 diagnostic algorithm (Kent, Carrington et .al., 2013) to identify a set of ‘essential’ behaviors sufficient to make a reliable and accurate diagnosis of DSM-5 Autism Spectrum Disorder (ASD) across age and ability level. Methods: Specific behaviors were identified and tested from the recently published DSM-5 algorithm for the Diagnostic Interview for Social and Communication Disorders (DISCO). Analyses were run on existing DISCO datasets, with a total participant sample size of 335. Three studies provided step-by-step development towards identification of a minimum set of items. Study 1 identified the most highly discriminating items (p<.0001). Study 2 used a lower selection threshold than in Study 1 (p<.05) to facilitate better representation of the full DSM-5 ASD profile. Study 3 included additional items previously reported as significantly more frequent in individuals with higher ability. The discriminant validity of all three item sets was tested using Receiver Operating Characteristic curves. Finally, sensitivity across age and ability was investigated in a subset of individuals with ASD (n=190).Results: Study 1 identified an item set (14 items) with good discriminant validity, but which predominantly measured social-communication behaviors (11/14). The Study 2 item set (48 items) better represented the DSM-5 ASD and had good discriminant validity, but the item set lacked sensitivity for individuals with higher ability. The final Study 3 adjusted item set (54 items) improved sensitivity for individuals with higher ability and performance and was comparable to the published DISCO DSM-5 algorithm.Conclusions: This work represents a first attempt to derive a reduced set of behaviors for DSM-5 directly from an existing standardized ASD developmental history interview. Further work involving existing ASD diagnostic tools with community-based and well characterized research samples will be required to replicate these findings and exploit their potential to contribute to a more efficient and focused ASD diagnostic process.

Diagnosing autism spectrum disorder:who will get a DSM-5 diagnosis?

Background Introduction of proposed criteria for DSM-5 Autism Spectrum Disorder (ASD) has raised concerns that some individuals currently meeting diagnostic criteria for Pervasive Developmental Disorder (PDD; DSM-IV-TR/ICD-10) will not qualify for a diagnosis under the proposed changes. To date, reports of sensitivity and specificity of the new criteria have been inconsistent across studies. No study has yet considered how changes at the 'sub domain' level might affect overall sensitivity and specificity, and few have included individuals of different ages and ability levels. Methods A set of DSM-5 ASD algorithms were developed using items from the Diagnostic Interview for Social and Communication Disorders (DISCO). The number of items required for each DSM-5 subdomain was defined either according to criteria specified by DSM-5 (Initial Algorithm), a statistical approach (Youden J Algorithm), or to minimise the number of false positives while maximising sensitivity (Modified Algorithm). The algorithms were designed, tested and compared in two independent samples (Sample 1, N = 82; Sample 2, N = 115), while sensitivity was assessed across age and ability levels in an additional dataset of individuals with an ICD-10 PDD diagnosis (Sample 3, N = 190). Results Sensitivity was highest in the Initial Algorithm, which had the poorest specificity. Although Youden J had excellent specificity, sensitivity was significantly lower than in the Modified Algorithm, which had both good sensitivity and specificity. Relaxing the domain A rules improved sensitivity of the Youden J Algorithm, but it remained less sensitive than the Modified Algorithm. Moreover, this was the only algorithm with variable sensitivity across age. All versions of the algorithm performed well across ability level. Conclusions This study demonstrates that good levels of both sensitivity and specificity can be achieved for a diagnostic algorithm adhering to the DSM-5 criteria that is suitable across age and ability level. © 2013 The Authors. Journal of Child Psychology and Psychiatry © 2013 Association for Child and Adolescent Mental Health.

DSM-5 Autism Spectrum Disorder:in search of essential behaviours for diagnosis

The objective of this study was to identify a set of 'essential' behaviours sufficient for diagnosis of DSM-5 Autism Spectrum Disorder (ASD). Highly discriminating, 'essential' behaviours were identified from the published DSM-5 algorithm developed for the Diagnostic Interview for Social and Communication Disorders (DISCO). Study 1 identified a reduced item set (48 items) with good predictive validity (as measured using receiver operating characteristic curves) that represented all symptom sub-domains described in the DSM-5 ASD criteria but lacked sensitivity for individuals with higher ability. An adjusted essential item set (54 items; Study 2) had good sensitivity when applied to individuals with higher ability and performance was comparable to the published full DISCO DSM-5 algorithm. Investigation at the item level revealed that the most highly discriminating items predominantly measured social-communication behaviours. This work represents a first attempt to derive a reduced set of behaviours for DSM-5 directly from an existing standardised ASD developmental history interview and has implications for the use of DSM-5 criteria for clinical and research practice. © 2014 The Authors.

Coping with a diagnosis of Alzheimer's disease: A client and caregiver perspective

The purpose of this study was to examine how individuals and their caregivers cope with a diagnosis of Alzheimer's disease. The sample size consisted of six patients with Alzheimer's disease and seven caregivers. The caregivers included spouses and adult children. The study was conducted at an academic medical center in the South Florida area. Using a phenomenological approach, data were collected by audiotaped interviews. Data were analyzed following the seven steps of Colaizzi (1978).^ The results of the study indicated that clients experienced fear, social withdrawal, decreased self-esteem and a need for love and support. Caregivers experienced psychological strain, burden, lifestyle adjustments and sacrifice. Both clients and caregivers identified numerous strategies for coping with Alzheimer's disease. The findings reflect the need for a holistic approach to promoting the quality of life for patients and caregivers. ^

Trajetória de pessoas com AIDS em situação de vulnerabilidade social: à luz da história oral de vida

The epidemic caused by HIV presents a global, dynamic and unstable phenomenon, which depends on the individual and collective human behavior. Efforts to deconstruct the stigmatized image caused by infection of AIDS are still often associated with adoption of socially unacceptable behavior to be a circumscribed the susceptibilities of vulnerable individuals and communities to infection, illness and death by HIV. This study aimed to: narrate the trajectory of life of people with AIDS more vulnerable enrolled in the Municipal Social Assistance Parnamirim / RN. It is a study of qualitative, exploratory and descriptive approach, taking oral history of life as technical and methodological framework. The colony consisted of 186 people with AIDS. The network was comprised of 13 employees of both sexes, aged between 19 and 62 years old with positive diagnosis and agreed to voluntarily participate. After approval by the Ethics Committee of the Federal University of Rio Grande do Norte (CEP / UFRN), in the opinion No. 719,926 CAAE: 30408114.5.0000.5537 on 6 June 2014 data were collected from August to September 2014. The employees signed the Informed Consent and Informed and letter of assignment. Held transcribing the interviews and later returned to respondents to retest, ie so that they confer what allowed us to carry out transcreation after consecutive readings. The reports were analyzed through Bardin content analysis. Guiding the analysis of the accounts of employees, we find three themes: Prejudice and discrimination in living with AIDS; Reacting to the diagnosis and the accession process to antiretroviral treatment; and religious coping in people with AIDS. It can be concluded in this study, that employees have shown great emotional impact after positive diagnosis for HIV / AIDS, especially with regard to social life, the family ties, work and above all to the prejudice of society. Treatment with antiretroviral drugs was seen as a motivation to regain dreams and plans for a future once uncertain, and even if it is not a cure therapy, provided the employees improved quality of life.

Trajetória de pessoas com AIDS em situação de vulnerabilidade social: à luz da história oral de vida

The epidemic caused by HIV presents a global, dynamic and unstable phenomenon, which depends on the individual and collective human behavior. Efforts to deconstruct the stigmatized image caused by infection of AIDS are still often associated with adoption of socially unacceptable behavior to be a circumscribed the susceptibilities of vulnerable individuals and communities to infection, illness and death by HIV. This study aimed to: narrate the trajectory of life of people with AIDS more vulnerable enrolled in the Municipal Social Assistance Parnamirim / RN. It is a study of qualitative, exploratory and descriptive approach, taking oral history of life as technical and methodological framework. The colony consisted of 186 people with AIDS. The network was comprised of 13 employees of both sexes, aged between 19 and 62 years old with positive diagnosis and agreed to voluntarily participate. After approval by the Ethics Committee of the Federal University of Rio Grande do Norte (CEP / UFRN), in the opinion No. 719,926 CAAE: 30408114.5.0000.5537 on 6 June 2014 data were collected from August to September 2014. The employees signed the Informed Consent and Informed and letter of assignment. Held transcribing the interviews and later returned to respondents to retest, ie so that they confer what allowed us to carry out transcreation after consecutive readings. The reports were analyzed through Bardin content analysis. Guiding the analysis of the accounts of employees, we find three themes: Prejudice and discrimination in living with AIDS; Reacting to the diagnosis and the accession process to antiretroviral treatment; and religious coping in people with AIDS. It can be concluded in this study, that employees have shown great emotional impact after positive diagnosis for HIV / AIDS, especially with regard to social life, the family ties, work and above all to the prejudice of society. Treatment with antiretroviral drugs was seen as a motivation to regain dreams and plans for a future once uncertain, and even if it is not a cure therapy, provided the employees improved quality of life.