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Pediatric quality life

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https://www.readbyqxmd.com/read/29223545/the-bowel-function-and-quality-of-life-of-hirschsprung-disease-patients-who-have-reached-18-years-of-age-or-older-the-long-term-outcomes-after-undergoing-the-transabdominal-soave-procedure
#1
Shun Onishi, Kazuhiko Nakame, Tatsuru Kaji, Masato Kawano, Tomoe Moriguchi, Koshiro Sugita, Keisuke Yano, Mioko Nomura, Koji Yamada, Waka Yamada, Ryuta Masuya, Takafumi Kawano, Seiro Machigashira, Motoi Mukai, Satoshi Ieiri
BACKGROUND/PURPOSE: Hirschsprung disease (HD) is considered curable, but the postoperative bowel function is not always satisfactory. In this study, we evaluated the general condition, bowel function, and social performance in adults who were older than 17years of age who had undergone definitive operations in childhood. METHOD: From 1984 to 2016, 110 patients with HD underwent definitive surgery at our institute. Sixty-three patients who had undergone the transabdominal Soave procedure reached 18years of age...
December 2017: Journal of Pediatric Surgery
https://www.readbyqxmd.com/read/29222704/healthcare-system-barriers-to-long-term-follow-up-for-adult-survivors-of-childhood-cancer-in-british-columbia-canada-a-qualitative-study
#2
A Fuchsia Howard, Arminee Kazanjian, Sheila Pritchard, Rob Olson, Haroon Hasan, Kelly Newton, Karen Goddard
PURPOSE: Risk-stratified life-long follow-up care is recommended for adult childhood cancer survivors (CCS) to ensure appropriate prevention, screening, and management of late effects. The identification of barriers to long-term follow-up (LTFU), particularly in varying healthcare service contexts, is essential to develop and refine services that are responsive to survivor needs. We aimed to explore CCS and healthcare professionals (HCP) perspectives of healthcare system factors that function as barriers to LTFU in British Columbia, Canada...
December 8, 2017: Journal of Cancer Survivorship: Research and Practice
https://www.readbyqxmd.com/read/29222303/responsiveness-of-patient-reported-outcome-measurement-information-system-promis-pain-domains-and-disease-specific-patient-reported-outcome-measures-in-children-and-adults-with-sickle-cell-disease
#3
REVIEW
Susanna Curtis, Amanda M Brandow
Case 1: A 33-year-old man with hemoglobin SS (homozygous hemoglobin S) disease presents for his regular clinic visit. He had 6 hospital admissions for pain over the past year. He also has avascular necrosis of the right hip. He takes daily hydroxyurea with hematologic changes indicative of compliance. He also takes morphine sustained release twice daily and morphine immediate release every 6 hours as needed for pain. He feels that more optimal pain control at home would help him reduce his number of hospital admissions in the upcoming year and improve his daily functioning at home...
December 8, 2017: Hematology—the Education Program of the American Society of Hematology
https://www.readbyqxmd.com/read/29218773/illness-and-end-of-life-experiences-of-children-with-cancer-who-receive-palliative-care
#4
Erica C Kaye, Courtney A Gushue, Samantha DeMarsh, Jonathan Jerkins, April Sykes, Zhaohua Lu, Jennifer M Snaman, Lindsay Blazin, Liza-Marie Johnson, Deena R Levine, R Ray Morrison, Justin N Baker
BACKGROUND: The field of pediatric palliative oncology is newly emerging. Little is known about the characteristics and illness experiences of children with cancer who receive palliative care (PC). METHODS: A retrospective cohort study of 321 pediatric oncology patients enrolled in PC who died between 2011 and 2015 was conducted at a large academic pediatric cancer center using a comprehensive standardized data extraction tool. RESULTS: The majority of pediatric palliative oncology patients received experimental therapy (79...
December 8, 2017: Pediatric Blood & Cancer
https://www.readbyqxmd.com/read/29215810/pediatric-deaths-attributed-to-complex-chronic-conditions-over-10-years-in-korea-evidence-for-the-need-to-provide-pediatric-palliative-care
#5
Min Sun Kim, Nam Gu Lim, Hyun Joo Kim, Chohee Kim, Jin Yong Lee
BACKGROUND: Pediatric palliative care (PPC) is the active total care of children suffering from life-threatening illnesses. Palliative care includes symptom management, psychosocial support, and end-of-life care. Despite significant advances in disease diagnosis and treatment, resources for PPC of children with serious illnesses are limited in Korea. This study aimed to investigate the scale, time trends, disease composition, regional distribution, and unmet needs of children dying from complex chronic conditions (CCCs)...
January 1, 2018: Journal of Korean Medical Science
https://www.readbyqxmd.com/read/29215566/multi-family-pediatric-pain-group-therapy-capturing-acceptance-and-cultivating-change
#6
Samantha E Huestis, Grace Kao, Ashley Dunn, Austin T Hilliard, Isabel A Yoon, Brenda Golianu, Rashmi P Bhandari
Behavioral health interventions for pediatric chronic pain include cognitive-behavioral (CBT), acceptance and commitment (ACT), and family-based therapies, though literature regarding multi-family therapy (MFT) is sparse. This investigation examined the utility and outcomes of the Courage to Act with Pain: Teens Identifying Values, Acceptance, and Treatment Effects (CAPTIVATE) program, which included all three modalities (CBT, ACT, MFT) for youth with chronic pain and their parents. Program utility, engagement, and satisfaction were evaluated via quantitative and qualitative feedback...
December 7, 2017: Children
https://www.readbyqxmd.com/read/29214403/executive-functioning-academic-skills-and-quality-of-life-in-pediatric-patients-with-brain-tumors-post-proton-radiation-therapy
#7
Lea M Ventura, Julie A Grieco, Casey L Evans, Karen A Kuhlthau, Shannon M MacDonald, Nancy J Tarbell, Torunn I Yock, Margaret B Pulsifer
Radiation therapy (RT) is integral in the treatment of pediatric brain tumors; however, photon RT (XRT) often results in intellectual decline, executive functioning (EF) deficits, academic underachievement/failure, and lower health-related quality of life (HRQoL). Proton RT (PRT) provides more targeted therapy, minimizing damage to the developing brain, yet few studies have examined its neuropsychological effects. This study investigated the role of EF in academic skills and HRQoL in a sample of children treated with PRT...
December 6, 2017: Journal of Neuro-oncology
https://www.readbyqxmd.com/read/29210071/whole-exome-sequencing-of-sickle-cell-disease-patients-with-hyperhemolysis-syndrome-suggests-a-role-for-rare-variation-in-disease-predisposition
#8
Savannah Mwesigwa, Joann M Moulds, Alice Chen, Jonathan Flanagan, Vivien A Sheehan, Alex George, Neil A Hanchard
BACKGROUND: Hyperhemolysis syndrome (HHS) is an uncommon, but life-threatening, transfusion-related complication of red blood cell transfusion. HHS has predominantly been described in patients with sickle cell disease (SCD) and is difficult to diagnose and treat. The pathogenesis of HHS, including its occurrence in only a subset of apparently susceptible individuals, is poorly understood. We undertook whole-exome sequencing (WES) of 12 SCD-HHS patients to identify shared genetic variants that might be relevant to the development of HHS...
December 6, 2017: Transfusion
https://www.readbyqxmd.com/read/29207908/a-scoping-review-of-pain-in-children-following-traumatic-brain-injury-is-there-more-than-headache
#9
Vivian Kwan, Mai Vo, Melanie Noel, Keith Owen Yeates
AIM: Headache is a common source of pain in children following traumatic brain injury (TBI); however, relatively little is known about non-headache pain in this pediatric population. The present review seeks to map the extant literature to determine the prevalence, characteristics, and impact of non-headache pain in children following TBI of all severities. RESULTS: Of 109 studies published on pain in children following a TBI, 95 (87%) were focused exclusively on headache pain and only 14 (13%) reported on non-headache pain or overall pain, with half (n = 7) in the form of case studies...
December 5, 2017: Journal of Neurotrauma
https://www.readbyqxmd.com/read/29207249/preschoolers-health-related-quality-of-life-following-the-implementation-of-a-childcare-physical-activity-intervention
#10
Stephanie Truelove, Andrew M Johnson, Leigh M Vanderloo, Molly Driediger, Shauna M Burke, Jennifer D Irwin, Brian W Timmons, Anca Gaston, Patricia Tucker
BACKGROUND: Being active offers many physical and emotional benefits contributing to a higher health-related quality of life (HRQoL); however, this relationship remains unexplored among preschoolers (2.5-5 years). This study examined the impact of the Supporting Physical Activity in the Childcare Environment (SPACE); an intervention implemented using a cluster randomized controlled trial on preschoolers' HRQoL. METHODS: Childcare centres were randomly allocated to the experimental (n = 11) or control (n = 11) condition, and preschoolers' HRQoL was measured using the parent-report Pediatric Quality of Life Inventory 4...
December 5, 2017: Applied Physiology, Nutrition, and Metabolism, Physiologie Appliquée, Nutrition et Métabolisme
https://www.readbyqxmd.com/read/29198542/kawasaki-disease-substantially-impacts-health-related-quality-of-life
#11
Soultana Kourtidou, April E Slee, Margaret E Bruce, Haaland Wren, Rita M Mangione-Smith, Michael A Portman
OBJECTIVE: To prospectively evaluate the acute impact of Kawasaki disease (KD) on health-related quality of life (HRQoL) and to assess deterioration in the HRQoL experienced by children with KD compared with other childhood diseases. STUDY DESIGN: We merged the Outcomes Assessment Program database obtained prospectively with the existing KD database and queried for KD admissions between 1 month and 13 years of age. HRQoL was evaluated with the parent-proxy Pediatric Quality of Life Inventory (PedsQL) 4...
November 30, 2017: Journal of Pediatrics
https://www.readbyqxmd.com/read/29198279/neuropsychology-of-multiple-sclerosis-looking-back-and-moving-forward
#12
Ralph H B Benedict, John DeLuca, Christian Enzinger, Jeroen J G Geurts, Lauren B Krupp, Stephen M Rao
The neuropsychological aspects of multiple sclerosis (MS) have evolved over the past three decades. What was once thought to be a rare occurrence, cognitive dysfunction is now viewed as one of the most disabling symptoms of the disease, with devastating effects on patients' quality of life. This selective review will highlight major innovations and scientific discoveries in the areas of neuropathology, neuroimaging, diagnosis, and treatment that pertain to our understanding of the neuropsychological aspects of MS...
October 2017: Journal of the International Neuropsychological Society: JINS
https://www.readbyqxmd.com/read/29196842/involvement-in-care-in-pediatric-cancer-patients-implications-for-treatment-compliance-mental-health-and-health-related-quality-of-life
#13
Anat Shoshani, Yaniv Kanat-Maymon
PURPOSE: The present study developed a new measure of involvement in care of pediatric oncology patients termed the Child Involvement in Care Scale (CICS), and empirically examined the mental health consequences of involvement in care for children with cancer. METHOD: The CICS was administered to 236 children with cancer aged 8-12 who were recruited from three large hospitals in Israel. The children also completed questionnaires on their mental-health symptoms and emotional well-being...
December 1, 2017: Quality of Life Research
https://www.readbyqxmd.com/read/29193603/quality-of-life-in-adolescents-with-hepatitis-c-treated-with-sofosbuvir-and-ribavirin
#14
Zobair M Younossi, Maria Stepanova, Kathleen B Schwarz, Stefan Wirth, Philip Rosenthal, Regino Gonzalez-Peralta, Karen Murray, Linda Henry, Sharon Hunt
Chronic HCV infection has been associated with impairment of health-related quality of life (HRQL) in both adults and pediatric patients. Our aim was to assess the HRQL of HCV-positive children treated with SOF+RBV. The data for this post-hoc analysis was collected in a phase 2 open-label multinational study that evaluated safety and efficacy of sofosbuvir (400mg/day) plus ribavirin (weight-based up to 1400mg/day) for 12 or 24 weeks in adolescents with chronic HCV (GS-US-334-1112). Patients and their parents/guardians completed the PedsQL-4...
November 28, 2017: Journal of Viral Hepatitis
https://www.readbyqxmd.com/read/29189614/acquired-infection-and-antimicrobial-utilization-during-initial-nicu-hospitalization-in-infants-with-congenital-diaphragmatic-hernia
#15
Sarah Keene, Karna Murthy, Eugenia Pallotto, Beverly Brozanski, Jason Gien, Isabella Zaniletti, Cheryl Hulbert, Ruth Seabrook, Natalie Rintoul, Louis Chicoine, Nicolas Porta, Theresa R Grover
BACKGROUND: In addition to substantial medical and surgical intervention, neonates with congenital diaphragmatic hernia (CDH) often have concurrent concerns for acquired infection. However, few studies focus on infection and corresponding antimicrobial utilization in this population. METHODS: The Children's Hospital Neonatal Database was queried for CDH infants hospitalized from Jan 2010- Feb 2016. Patient charts were linked to the Pediatric Health Information Systems (PHIS) database...
November 16, 2017: Pediatric Infectious Disease Journal
https://www.readbyqxmd.com/read/29189353/pediatric-palliative-oncology-the-state-of-the-science-and-art-of-caring-for-children-with-cancer
#16
Jennifer M Snaman, Erica C Kaye, Justin N Baker, Joanne Wolfe
PURPOSE OF REVIEW: Pediatric palliative oncology (PPO) is an emerging field that integrates the principles of palliative care early into the illness trajectory of children with cancer. PPO providers work with interdisciplinary clinicians to provide optimal medical and psychosocial care to children with cancer and their families. Ongoing advances in the field of pediatric oncology, including new treatment options for progressive cancers, necessitate the early integration of palliative care tenets including holistic care, high-quality communication, and assessment and management of refractory symptoms...
November 17, 2017: Current Opinion in Pediatrics
https://www.readbyqxmd.com/read/29188361/disruptive-technological-advances-in-vascular-access-for-dialysis-an-overview
#17
REVIEW
Wee-Song Yeo, Qin Xiang Ng
End-stage kidney disease (ESKD), one of the most prevalent diseases in the world and with increasing incidence, is associated with significant morbidity and mortality. Current available modes of renal replacement therapy (RRT) include dialysis and renal transplantation. Though renal transplantation is the preferred and ideal mode of RRT, this modality may not be available to all patients with ESKD. Moreover, renal transplant recipients are constantly at risk of complications associated with immunosuppression and immunosuppressant use, and posttransplant lymphoproliferative disorder...
November 29, 2017: Pediatric Nephrology: Journal of the International Pediatric Nephrology Association
https://www.readbyqxmd.com/read/29185785/functional-outcomes-of-motor-vehicle-crash-thoracic-injuries-in-pediatric-and-adult-occupants
#18
Samantha L Schoell, Ashley A Weaver, Jennifer W Talton, Ryan T Barnard, Gretchen Baker, Joel D Stitzel, Mark R Zonfrillo
OBJECTIVE: Characterization of the severity of injury should account for both mortality and disability. The objective of this study was to develop a disability metric for thoracic injuries in motor vehicle crashes (MVCs), and compare the functional outcomes between the pediatric and adult populations. METHODS: Disability risk (DR) was quantified using Functional Independence Measure (FIM) scores within the National Trauma Data Bank for the most frequently occurring Abbreviated Injury Scale (AIS) 2-5 thoracic injuries...
November 29, 2017: Traffic Injury Prevention
https://www.readbyqxmd.com/read/29185624/the-effect-of-adapted-sports-in-quality-of-life-and-biopsychosocial-profile-of-children-and-adolescents-with-cerebral-palsy
#19
Luzanira Correia Feitosa, Sandra Regina Baggio Muzzolon, Danielle Caldas Bufara Rodrigues, Ana Chrystina de Souza Crippa, Marise Bueno Zonta
OBJECTIVE: The participation in sports and recreational activities promotes inclusion and the quality of life (QOL) for people with some type of disability. This study aims to evaluate and describe the effect of adapted sports (AS) on the QOL and biopsychosocial profile of children/adolescents with cerebral palsy (CP). METHODS: Forty-seven children/adolescents with CP were evaluated and referred to AS (soccer and swimming). The QOL was evaluated by the Pediatric Outcome Data Collection Instrument (PODCI) and the biopsychosocial profile by the Behavior Checklist for Children/Adolescents (CBCL)...
October 2017: Revista Paulista de Pediatria: Orgão Oficial da Sociedade de Pediatria de São Paulo
https://www.readbyqxmd.com/read/29184811/dermatologic-manifestations-of-endocrine-disorders
#20
REVIEW
Michael Lause, Alisha Kamboj, Esteban Fernandez Faith
The skin serves as a window for clinicians to understand, diagnose, and monitor endocrine disease. Dermatologic manifestations of endocrinopathies contribute significantly to an individual's health and quality of life. In this review, we outline various disorders of the hypothalamic-pituitary axis, thyroid gland, pancreas, adrenal gland, and androgen axis as well as hereditary endocrine syndromes. In acromegaly, glycosaminoglycan deposition contributes to a thickening of skin and soft tissue, which manifests as coarsening and enlargement of facial and acral structures...
October 2017: Translational pediatrics
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