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1.
J Patient Cent Res Rev ; 5(2): 149-157, 2018.
Artículo en Inglés | MEDLINE | ID: mdl-31413999

RESUMEN

PURPOSE: Ovarian cancer is the most fatal of all gynecologic cancers, with a high relapse rate regardless of stage. Women treated for ovarian cancer, therefore, likely have supportive care needs that extend well beyond the time frame of first-line therapy. Unfortunately, there is minimal data describing these needs. The purpose of this qualitative study is to understand the supportive care needs of women with ovarian care at the end of treatment. METHODS: To better understand the issues faced by women with ovarian cancer, we conducted a public Twitter chat in collaboration with gynecologic cancer social media (#gyncsm). Both quantitative and qualitative analyses were performed. RESULTS: The chat occurred over a 1-hour time frame on Twitter and resulted in more than 300 unique and original tweets from 43 participants during the chat and an additional 60 unique participants following the chat. Survivors and physicians represented 32% and 11% of participants, respectively; caregivers, advocates, and other clinicians represented the remaining participants. Participants noted deep interest in receiving support during survivorship and dissatisfaction with currently available resources. Sentiment analysis showed that participants viewed the support from social media in a positive light and also revealed negative sentiment around the lack of support from health care providers at the end of treatment. CONCLUSIONS: Themes derived from the Twitter chat revealed the unique experiences of individuals with ovarian cancer after treatment, including a heightened sense of vulnerability. Understanding these themes represents an opportunity for clinicians to better understand and address the needs of this patient community.

2.
J Pediatr ; 166(5): 1297-1302.e3, 2015 May.
Artículo en Inglés | MEDLINE | ID: mdl-25769235

RESUMEN

OBJECTIVE: To determine the impact of tic severity in children with Tourette syndrome on parenting stress and the impact of comorbid attention-deficit hyperactivity disorder (ADHD) and obsessive-compulsive disorder (OCD) symptomatology on parenting stress in both children with Tourette syndrome and typically developing children. STUDY DESIGN: Children with diagnosed Tourette syndrome (n=74) and tic-free typically developing control subjects (n=48) were enrolled in a cross-sectional study. RESULTS: Parenting stress was greater in the group with Tourette syndrome than the typically developing group. Increased levels of parenting stress were related to increased ADHD symptomatology in both children with Tourette syndrome and typically developing children. Symptomatology of OCD was correlated with parenting stress in Tourette syndrome. Parenting stress was independent of tic severity in patients with Tourette syndrome. CONCLUSIONS: For parents of children with Tourette syndrome, parenting stress appears to be related to the child's ADHD and OCD comorbidity and not to the severity of the child's tic. Subthreshold ADHD symptomatology also appears to be related to parenting stress in parents of typically developing children. These findings demonstrate that ADHD symptomatology impacts parental stress both in children with and without a chronic tic disorder.


Asunto(s)
Trastorno por Déficit de Atención con Hiperactividad/complicaciones , Trastorno Obsesivo Compulsivo/complicaciones , Responsabilidad Parental , Estrés Psicológico , Síndrome de Tourette/complicaciones , Síndrome de Tourette/psicología , Adolescente , Cuidadores , Niño , Desarrollo Infantil , Comorbilidad , Estudios Transversales , Femenino , Humanos , Masculino , Índice de Severidad de la Enfermedad
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