scholarly journals Impact of Cardiac Devices on the Quality of Life in Pediatric Patients

2012 ◽  
Vol 5 (6) ◽  
pp. 1064-1072 ◽  
Author(s):  
Richard J. Czosek ◽  
William J. Bonney ◽  
Amy Cassedy ◽  
Douglas Y. Mah ◽  
Ronn E. Tanel ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Pediatric Patients ◽  
Cardiac Devices

Once-daily ciclesonide improves quality of life in pediatric patients with asthma

2005 ◽  
Vol 115 (2) ◽  
pp. S211 ◽  
Author(s):  
D. Miller ◽  
P. Ratner ◽  
J. Condemi ◽  
M. Lawrence ◽  
C. Crivera ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Pediatric Patients ◽  
Once Daily

Executive functioning, academic skills, and quality of life in pediatric patients with brain tumors post-proton radiation therapy

2017 ◽  
Vol 137 (1) ◽  
pp. 119-126 ◽  
Author(s):  
Lea M. Ventura ◽  
Julie A. Grieco ◽  
Casey L. Evans ◽  
Karen A. Kuhlthau ◽  
Shannon M. MacDonald ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Radiation Therapy ◽  
Brain Tumors ◽  
Executive Functioning ◽  
Pediatric Patients ◽  
Academic Skills ◽  
Proton Radiation ◽  
Proton Radiation Therapy

Improving the Quality of Life for High-Risk Infants

2008 ◽  
Vol 27 (6) ◽  
pp. 369-369
Author(s):  
Sharyn Gibbins
Keyword(s):  
Quality Of Life ◽  
Medical Education ◽  
High Risk ◽  
Scientific Knowledge ◽  
Essential Role ◽  
Pediatric Patients ◽  
Health Advocacy ◽  
Medical Speciality ◽  
High Risk Infants

NEONATOLOGY IS A RELATIVELY NEW MEDICAL SPECIALITY that arose from the recognition that neonates were different from adults and other pediatric patients. The recognition of these differences between patients led, in part, to the development of perinatology and neonatology programs across the globe. As scientific knowledge and medical education evolved, so too did the recognition that nurses played an essential role in the care of high-risk infants. No longer restricted to Florence Nightingale’s initial advocacy for a nurturing environment only, the profession of nursing extends into areas of practice, education, mentorship, health advocacy, and research.

scholarly journals Assessment of the quality of life of pediatric patients at a center of excellence in dermatology in southern Brazil

2012 ◽  
Vol 87 (5) ◽  
pp. 697-702 ◽  
Author(s):  
Magda Blessmann Weber ◽  
Daniel Lorenzini ◽  
Clarissa Prieto Herman Reinehr ◽  
Bárbara Lovato
Keyword(s):  
Quality Of Life ◽  
Skin Disease ◽  
Dermatology Life Quality Index ◽  
Quality Index ◽  
Pediatric Patients ◽  
Skin Diseases ◽  
Life Quality ◽  
Chronically Ill ◽  
Life Quality Index

BACKGROUND: Skin diseases cause negative impact on the emotional state, social relationships and daily activities, due to the stigma caused by the appearance of the lesions. OBJECTIVE: This study aimed to assess the quality of life of pediatric patients with skin diseases attending a dermatology service, compare the scores obtained among the dermatoses found in the sample and associate them to the variables, in addition to observing how the skin disease specifically affects quality of life. METHODS: Cross-sectional study, with patients between 5 and 16 years attending the Dermatology Service of the University of Health Sciences of Porto Alegre, Brazil, between July 2010 and February 2011. The data collection instruments were the Children's Dermatology Life Quality Index questionnaire and the AUEQI questionnaire. RESULTS: A total of 161 patients were interviewed, with mean age of 9,66 years. The main dermatoses were atopic dermatitis (29.8%), warts (13%) and molluscum contagiosum (7.5%). Chronic diseases (73.9%) were the most prevalent. The overall mean Children's Dermatology Life Quality Index score was 5.01 for chronic dermatoses and 2.07 for acute illnesses, indicating a compromised quality of life among chronically ill patients. The comparison between the scores obtained with the AUEQI scale and the Children's Dermatology Life Quality Index scores indicates that the overall quality of life is less affected than the specific quality of life related to the dermatosis. CONCLUSIONS: The data presented reinforce how important it is that the patients, their families and caregivers understand the symptoms, triggers and treatment of the skin disease in question. This information facilitates adherence to the treatment and justifies the conduct adopted by the dermatologist.

scholarly journals Comprehensive quality of life outcomes for pediatric patients undergoing endoscopic sinus surgery

2014 ◽  
Vol 52 (4) ◽  
pp. 327-333 ◽  
Author(s):  
R.J. Taylor ◽  
J.D. Miller ◽  
A.S. Rose ◽  
A.F. Drake ◽  
C.J. Zdanski ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Endoscopic Sinus Surgery ◽  
Pediatric Patients ◽  
Sinus Surgery ◽  
Life Outcomes ◽  
Quality Of Life Outcomes

Development and usability test of ‘PROMIS Assessment’: a smartphone WeChat mini-program for children and adolescents with cancer (Preprint)

2021 ◽  
Author(s):  
Wen Zhang ◽  
Jennifer Stinson ◽  
Danyu Li ◽  
Qingmei Huang ◽  
Yueshi Huang ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Children And Adolescents ◽  
Peer Relationships ◽  
Pediatric Patients ◽  
Qualitative Interviews ◽  
Usability Test ◽  
Usability Tests ◽  
Patient Reported ◽  
Intensity Functions

BACKGROUND The main goal for the healthcare of children and adolescents with cancer is to cure and better manage the distress caused by the multiple symptoms that may manifest during chemotherapy. Patient-reported outcomes (PROs) are considered to be the best way to obtain a subjective measure of symptoms. As such, it is crucial to select appropriate pediatric PROs tools, taking advantage of technologies to develop a suitable platform, and assess and manage symptoms over long-term cancer treatment. OBJECTIVE This study aimed to develop and test a smartphone application's usability, known as the WeChat mini-program. It enables children and adolescents with cancer aged 5 to 17 years old and their parent proxies to assess pediatric patients' quality of life-related symptoms using Pediatric Patient-reported Outcome Measurement Information System (PROMIS) profile-25. METHODS A focus group interview among researchers, clinical professionals, and software engineers, as well as personal qualitative interviews with pediatric patients and proxies, were conducted to form the development proposal. The iterative method was used to develop and assure the quality of the mini-program. The usability test was performed based on the standards of ISO 9241-11 among target users. Effectiveness and efficiency were based on usability tasks, satisfaction was measured with the Post-Study System Usability Questionnaire (PSSUQ), and additional qualitative interviews were conducted following all tests. Further modifications and tests would be performed to improve the mini-program based on feedback. RESULTS The WeChat mini-program 'PROMIS Assessment' included demographic and clinical information and the profile-25 questionnaire (which assesses and collects data on depressive symptoms, anxiety, fatigue, physical activity-mobility, peer relationships, pain interference, and pain intensity). Functions such as voice assistance, a reward system, data visualization, and reminders were added to improve accessibility and compliance. A total of 16 target users participated in the first round of usability tests. The completion rate of the three tasks ranged from 80.0% (for the proxy task of 'search and open') to 100.0%, and most users could complete tasks quickly. Satisfaction scores of the four dimensions of PSSUQ ranged from 6.2 to 6.8 (out of 7.0). In qualitative interviews, most participants thought the mini-program was convenient, easy to use, and helpful. Disadvantages were mainly problems with searching, expressions, and interaction with reality. The revised mini-program gained positive feedback during the second round of usability tests. CONCLUSIONS The 'PROMIS Assessment' and its administration website were developed and proved to have good usability. It can be used both inside and outside hospitals by children and adolescents with cancer and their proxies during treatment to assess their quality of life and offer significant patient-reported data to assist clinical decisions.

Withdrawal of life-sustaining therapies

2015 ◽  
pp. 463-472
Author(s):  
Margaret L. Campbell ◽  
Linda M. Gorman
Keyword(s):  
Quality Of Life ◽  
Mechanical Ventilation ◽  
Implantable Cardioverter Defibrillator ◽  
Organ Failure ◽  
Relative Frequency ◽  
Symptom Distress ◽  
Improve Quality ◽  
Cardioverter Defibrillator ◽  
Cardiac Devices

Withdrawal of mechanical ventilation (MV), discontinuation of dialysis, and deactivation of cardiac devices are procedures that occur with relative frequency. The benefits of these therapies, when initiated, are to replace failing organs, extend life, and improve quality of life by relieving symptom distress associated with organ failure. When the burdens exceed the benefits, or when the patient is near death or unresponsive, decisions may be made to cease these therapies. In some cases, such as implantable cardioverter defibrillator (ICD) deactivation, no distress is anticipated. In others, such as discontinuing dialysis or withdrawing MV, measures to palliate anticipated distress must be applied. A peaceful death after cessation of life-prolonging therapies can be provided.

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