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The medical costs of cancer treatment are well described, but there are few reports of expenses incurred by families of children with malignant disease. The objective of this study was to describe the monetary costs borne by families of patients with childhood cancer and to determine whether these costs represent an important component of the burden of illness. Families completed a prospective diary survey about daily expenses incurred during each sample week of therapy. We also undertook a retrospective, cross-sectional questionnaire survey about expenses, incurred during the entire duration of treatment, associated with major or one-time cost items. Seventy families of children treated for high risk acute lymphoblastic leukemia, 19 families of children treated for Wilms' tumor stages 2-5, and 16 families of children treated for neuroblastoma stages 3 and 4 completed diaries or questionnaires detailing the costs resulting from the diseases and their treatment. The mean total expenses (in 1986 Canadian dollars) incurred by families of childhood cancer patients over the entire course of therapy are $26,070 for acute lymphoblastic leukemia? $20,074 for Wilms' tumour, and $10,376 for neuroblastoma. On-going weekly costs rather than major one-time purchases account for the largest share of expenses. Overall, in spite of universal first dollar coverage for medical care in Canada, family-borne costs during the course of these illnesses are at least one-third of the average family's after-tax income.
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http://dx.doi.org/10.3892/ijo.8.5.933 | DOI Listing |
Psychol Health Med
January 2025
Department of Medicine, Huzhou University, Huzhou, Zhejiang, China.
Parental burnout is a prominent topic in current family research, with proven detrimental effects on the well-being of both parents and children. However, the specific mechanism by which parenting burnout impacts the parent-child relationship within families remains unclear. Furthermore, there is limited research exploring whether parenting burnout has a direct impact on the parent-child relationship.
View Article and Find Full Text PDFJ Appl Res Intellect Disabil
January 2025
Tranzo, Tilburg School of Social and Behavioral Sciences, Tilburg University, Tilburg, The Netherlands.
Background: The Needs Assessment Framework (NAF) stimulates awareness of care staff to consider perspectives of clients with intellectual disabilities in decisions on involuntary care. We explored the effect of implementers' participation in a Virtual Community-of-Practice (VCoP) for designing implementation plans, on NAF implementation and staff awareness.
Method: A quasi-experimental design was used to compare implementation and awareness by care staff (n = 54) between organisations that implemented NAF with VCoP participation (N = 4) and organisations that implemented NAF as usual (N = 3).
Epilepsia
January 2025
Department of Clinical Neurological Sciences, Schulich School of Medicine and Dentistry, Western University, London, Ontario, Canada.
We propose and prioritize important outcome domains that should be considered for future research investigating long-term outcomes (LTO) after new onset refractory status epilepticus (NORSE). The study was led by the international NORSE Institute LTO Working Group. First, literature describing the LTO of NORSE survivors was identified using a PubMed search and summarized to identify knowledge gaps.
View Article and Find Full Text PDFBirth Defects Res
January 2025
School of Nursing, Ulster University Belfast, Belfast, Northern Ireland, UK.
Introduction: While improved medical and surgical care for children with pina bifida has improved their survival, some may have lower cognitive, behavioral and educational performance. The paper assesses the effect of spina bifida on cognitive, behavioral, and educational outcomes in 5-11 year olds.
Methods: A cross-sectional study design was used where data were collected from parents/guardians and teachers using Behavior Rating Inventory of Executive Function, second edition (BRIEF2), Strengths and Difficulties Questionnaire (SDQ), and Teacher Academic Attainment Scale (TAAS).
Zhongguo Dang Dai Er Ke Za Zhi
January 2025
Department of Pediatrics, Tongji Hospital, Tongji Medical College, Huazhong University of Science and Technology/Hubei Key Laboratory of Pediatric Genetic Metabolic and Endocrine Rare Diseases, Wuhan 430030, China.
Objectives: To study the clinical manifestations and genetic characteristics of children with maturity-onset diabetes of the young type 2 (MODY2), aiming to enhance the recognition of MODY2 in clinical practice.
Methods: A retrospective analysis was conducted on the clinical data of 13 children diagnosed with MODY2 at the Department of Pediatrics of Tongji Hospital of Tongji Medical College of Huazhong University of Science and Technology from August 2017 to July 2023.
Results: All 13 MODY2 children had a positive family history of diabetes and were found to have mild fasting hyperglycemia [(6.
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