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Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
June 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Adolescents And Young Adults (aya) At The End Of Life: Using Voicing My Choices To Enhance Communication And Guide Planning
Publisher
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Psycho-oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Creator
An entity primarily responsible for making the resource
Sima Zadeh; Maryland Pao; Lori Wiener; Leonard Sender; Kathleen Adlard; Claudia Begino; Karen Fasciano; Phoebe Souza
Description
An account of the resource
Purpose
Over 11,000 adolescents and young adults (AYA), ages 15-34, die yearly from cancer and other life-threatening conditions. In order provide comprehensive end-of-life (EoL) care, it is recommended that EoL discussions be routine, begin close to the time of diagnosis and continue throughout the illness trajectory. Advance care planning (ACP) documents provide patients an opportunity to express their preferences for care and can also help patients and families make informed decisions, alleviate distress, avoid decisional regret, and improve the patient’s quality of life. Few resources exist to aid AYAs in addressing their changing physical, emotional and social preferences around EoL.
Methods
This study is a 1-month pre-post design to determine whether AYA engaging in ACP feel using Voicing My CHOiCES™ (VMC) is helpful/stressful, is associated with reduced anxiety, and/or improves communication about preferences with family, friends, and/or health care providers. Participants are AYA aged 18-39 diagnosed with cancer or other life threatening illnesses at The National Cancer Institute, Children’s Hospital of Orange County, and Dana Farber. Study questionnaires include validated measures and qualitative research questions. Enrollment is ongoing, therefore preliminary data (univariate and bivariate analyses) related to EoL planning anxiety and experiences completing VMC will be presented.
Results
Twenty-two patients completed time 1, and 14 completed time 2. In terms of EoL planning, 57.1% of respondents indicated moderate/a lot of anxiety at baseline, 31.3% reported moderate/a lot immediately after completing VMC and 23.1% rated moderate/a lot at 1-month follow up. Approximately 75% of the sample felt VMC questions were appropriate, >95% found them helpful and 20-65% reported that the questions were not at all stressful (variation based on topic). At time 2, 71% (n=10) shared VMC preferences with a family member or friend, whereas only 1 participant (7%) indicated having had discussions with a health care provider.
Conclusions
Engaging in ACP utilizing VMC has shown a decrease in anxiety over time surrounding EoL planning. Completing VMC has enhanced patient communication regarding EoL preferences with both family and friends, but has not shown an increase in communication with health care providers. Interventions/Education is needed to enhance provider comfort with initiating these discussions.
Research Implications
Given the increasing importance of end-of-life planning, and continued challenges in ensuring these conversations occur with the medical team, future research should include the perspective of the provider.
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2016
Claudia Begino
June 2016 List
Karen Fasciano
Kathleen Adlard
Leonard Sender
Lori Wiener
Maryland Pao
Phoebe Souza
Psycho-Oncology
Sima Zadeh
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
June 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Pediatric Psychopharmacology: To Use Or Not To Use At The End Of Life
Publisher
An entity responsible for making the resource available
Psycho-oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Creator
An entity primarily responsible for making the resource
Maryland Pao
Description
An account of the resource
Purpose
Psychological symptoms ranging from distress to more debilitating depression and anxiety with worsening somatic symptoms can hamper communication, particularly at the end-of-life. Treatment with psychotropic medications may be useful for symptomatic and syndromic relief.
Methods
A review of the evidence base for psychotropic medication use in pediatric psychooncolgy and of the Micromedex database regarding FDA indications and approvals for medications used in children was conducted.
Results
No published randomized controlled trials were found. Barriers to conducting such trials e.g. multiple medical diagnoses, multiple medical treatment regimens, severity of medical illness, psychosocial factors, stigma of psychiatric diagnoses, subthreshold psychiatric diagnoses and fear of psychiatric medications will be reviewed. FDA-approved psychotropic medications for use in children with delirium, depression, anxiety, psychosis, and symptom relief (i.e. insomnia), including off-label use, will be presented. Side effects and common drug-drug interactions will also be discussed.
Conclusions
Approaches to help children address emotional and physical concerns at the end of life can include pharmacologic approaches which may enhance a child's ability to communicate or fully utilize other psychosocial interventions and therapies.
Research Implications
To date, there are no randomized controlled trials using different psychopharmacologic interventions in pediatric oncology patients for mental health symptoms or disorders. A multidisciplinary effort could overcome barriers to undertake such trials which could add useful clinical information to the field.
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2016
June 2016 List
Maryland Pao
Psycho-Oncology