354 research outputs found
Assessing disease disclosure in adults with cystic fibrosis: the Adult Data for Understanding Lifestyle and Transitions (ADULT) survey Disclosure of disease in adults with cystic fibrosis
<p>Abstract</p> <p>Background</p> <p>As more patients with cystic fibrosis (CF) reach adulthood and participate in age-appropriate activities (e.g. employment, dating), disclosure of medical status becomes more important. This study assessed rates of disclosure and its perceived impact on relationships using the Adult Data for Understanding Lifestyle and Transitions (ADULT) online survey.</p> <p>Methods</p> <p>Adults with CF participated in the survey via the United States national network of CF Centers. Descriptive and inferential statistics were utilized.</p> <p>Results</p> <p>Participants (n = 865) were more likely to disclose to relatives (94%) and close friends (81%) than to dating partners (73%), bosses/supervisors/teachers (51%) or co-workers (39%). Respondents generally reported a neutral/positive effect on relationships following disclosure. Negative effects of disclosure were infrequent, but more likely with dating partners or bosses/supervisors/teachers. Results also indicated that disclosure may be influenced by severity of lung disease and gender, with those having normal/mild lung disease less likely to disclose their diagnosis to both co-workers (p < 0.01) and bosses/supervisors/teachers (p < 0.01), and women being more likely to disclose to close friends (p < 0.0001) and dating partners (p < 0.05) than men.</p> <p>Conclusions</p> <p>Most adults with CF disclosed their disease to relatives and close friends. Individuals with severe CF lung disease were more likely to disclose their diagnosis to coworkers and supervisors/teachers. It may be helpful to provide support for disclosure of disease in situations such as employment and dating.</p
Asymptotic expansions of the solutions of the Cauchy problem for nonlinear parabolic equations
Let be a solution of the Cauchy problem for the nonlinear parabolic
equation and
assume that the solution behaves like the Gauss kernel as . In
this paper, under suitable assumptions of the reaction term and the initial
function , we establish the method of obtaining higher order
asymptotic expansions of the solution as . This paper is a
generalization of our previous paper, and our arguments are applicable to the
large class of nonlinear parabolic equations
A particle system with explosions: law of large numbers for the density of particles and the blow-up time
Consider a system of independent random walks in the discrete torus with
creation-annihilation of particles and possible explosion of the total number
of particles in finite time. Rescaling space and rates for
diffusion/creation/annihilation of particles, we obtain a stong law of large
numbers for the density of particles in the supremum norm. The limiting object
is a classical solution to the semilinear heat equation u_t =u_{xx} + f(u). If
f(u)=u^p, 1<p \le 3, we also obtain a law of large numbers for the explosion
time
Children with disorders of sex development: A qualitative study of early parental experience
<p>Abstract</p> <p>Background</p> <p>Clinical research on psychological aspects of disorders of sex development (DSD) has focused on psychosexual differentiation with relatively little attention directed toward parents' experiences of early clinical management and their influence on patient and family psychosocial adaptation.</p> <p>Objectives</p> <p>To characterize parental experiences in the early clinical care of children born with DSD.</p> <p>Study Design</p> <p>Content analysis of interviews with parents (n = 41) of 28 children, newborn to 6 years, with DSD.</p> <p>Results</p> <p>Four major domains emerged as salient to parents: (1) the gender assignment process, (2) decisions regarding genital surgery, (3) disclosing information about their child's DSD, and (4) interacting with healthcare providers. Findings suggested discordance between scientific and parental understandings of the determinants of "sex" and "gender." Parents' expectations regarding the benefits of genital surgery appear largely met; however, parents still had concerns about their child's future physical, social and sexual development. Two areas experienced by many parents as particularly stressful were: (1) uncertainties regarding diagnosis and optimal management, and (2) conflicts between maintaining privacy versus disclosing the condition to access social support.</p> <p>Conclusions</p> <p>Parents' experiences and gaps in understanding can be used to inform the clinical care of patients with DSD and their families. Improving communication between parents and providers (and between parents and their support providers) throughout the early clinical management process may be important in decreasing stress and improving outcomes for families of children with DSD.</p
Asymptotic behaviour of a semilinear elliptic system with a large exponent
Consider the problem \begin{eqnarray*} -\Delta u &=& v^{\frac 2{N-2}},\quad
v>0\quad {in}\quad \Omega, -\Delta v &=& u^{p},\:\:\:\quad u>0\quad {in}\quad
\Omega, u&=&v\:\:=\:\:0 \quad {on}\quad \partial \Omega, \end{eqnarray*} where
is a bounded convex domain in with smooth boundary
We study the asymptotic behaviour of the least energy
solutions of this system as We show that the solution remain
bounded for large and have one or two peaks away form the boundary. When
one peak occurs we characterize its location.Comment: 16 pages, submmited for publicatio
A quality-of-life measure for adults with primary ciliary dyskinesia: QOL-PCD
Primary ciliary dyskinesia (PCD) is characterised by chronic suppurative lung disease, rhino-sinusitis, hearing impairment and sub-fertility. We have developed the first multidimensional measure to assess health-related quality of life (HRQoL) in adults with PCD (QOL-PCD). Following a literature review and expert panel meeting, open-ended interviews with patients investigated the impact of PCD on HRQoL in the UK and North America (n=21). Transcripts were content analysed to derive saturation matrices. Items were rated for relevance by patients (n=49). Saturation matrices, relevance scores, literature review, evaluation of existing measures, and expert opinion contributed to development of a preliminary questionnaire. The questionnaire was refined following cognitive interviews (n=18). Open-ended interviews identified a spectrum of issues unique to adults with PCD. Saturation matrices confirmed comprehensive coverage of content. QOL-PCD includes 48 items covering the following seven domains: Physical Functioning, Emotional Functioning, Treatment Burden, Respiratory and Sinus Symptoms, Ears and Hearing, Social Functioning, and Vitality and Health Perceptions. Cognitive testing confirmed that content was comprehensive and the items were well-understood by respondents. Content validity and cognitive testing supported the items and structure. QOL-PCD has been translated into other languages and is awaiting psychometric testing
Associations between adherence, depressive symptoms and health-related quality of life in young adults with cystic fibrosis
BACKGROUND: Cystic fibrosis (CF) is a life shortening disease, however prognosis has improved and the adult population is growing. Most adults with cystic fibrosis live independent lives and balance the demands of work and family life with a significant treatment burden. The aim of this study was to examine the relationships among treatment adherence, symptoms of depression and health-related quality of life (HRQoL) in a population of young adults with CF. METHODS: We administered three standardized questionnaires to 67 patients with CF aged 18â30 years; Morisky Medication Adherence Scale, Major Depression Inventory, and Cystic Fibrosis Questionnaire-Revised. RESULTS: There was a response rate of 77 % and a majority of the young adults (84 %) were employed or in an education program. Most participants (74 %) reported low adherence to medications. One third (32.8 %) of the participants reported symptoms of depression. HRQoL scores were especially low on Vitality and Treatment Burden, and symptoms of depression were associated with low HRQoL scores (p < 0.01) with medium to large deficits across on all HRQoL domains (Cohenâs d 0.60â1.72) except for the domain treatment burden. High depression symptom scores were associated with low adherence (r = â0.412, p < 0.001). CONCLUSIONS: Despite improved physical health, many patients with CF report poor adherence, as well as impaired mental wellbeing and HRQoL. Thus, more attention to mental health issues is needed
On the dynamics of a non-local parabolic equation arising from the Gierer-Meinhardt system
This is an author-created, un-copyedited version of an article accepted for publication in Nonlinearity. The publisher is not responsible for any errors or omissions in this version of the manuscript or any version derived from it. The Version of Record is available online at http://iopscience.iop.org/article/10.1088/1361-6544/aa64b2/metaThe purpose of the current paper is to contribute to the comprehension of the dynamics of the shadow system of an activator-inhibitor system known as a Gierer-Meinhardt model. Shadow systems are intended to work as an intermediate step between single equations and reaction-diffusion systems. In the case where the inhibitor's response to the activator's growth is rather weak, then the shadow system of the Gierer-Meinhardt model is reduced to a single though non-local equation whose dynamics will be investigated. We mainly focus on the derivation of blow-up results for this non-local equation which can be seen as instability patterns of the shadow system. In particular, a {\it diffusion driven instability (DDI)}, or {\it Turing instability}, in the neighbourhood of a constant stationary solution, which it is destabilised via diffusion-driven blow-up, is obtained. The latter actually indicates the formation of some unstable patterns, whilst some stability results of global-in-time solutions towards non-constant steady states guarantee the occurrence of some stable patterns
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