Pamela Hinds

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..Here we present a new definition of the quality of life of pediatric oncology patients that is based on six domains; this definition may ensure the completeness and sensitivity of these important instruments...

..Our findings demonstrates the feasibility of measuring HRQoL in adolescents with OS or AML (and their parents) at the time of diagnosis, and thus their HRQoL ratings can be used to inform their cancer care from diagnosis forward...

..We identified the preferences of children and adolescents with advanced cancer about their end-of-life care and the factors that influenced their decisions...

..To describe the complexities in end-of-life care of children and adolescents dying cancer-related deaths...

..The objective of the current study was to determine the effect of dexamethasone exposure on sleep and fatigue in pediatric patients with ALL...

..Our findings identify design and statistical considerations for a future effectiveness study of the EPA intervention in hospitalized pediatric oncology patients...

..Findings further indicate that the FS-A can be used to measure change over time (t=2.55, P<0.01). In summary, the FS-A has moderate to strong reliability and impressive validity coefficients for a new research instrument...

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..It is hoped that the solutions described here will benefit others in their efforts to implement pediatric end-of-life studies so that clinically useful findings will result and will improve the care of dying children and adolescents...

..To describe the notable advances in defining, conceptualizing, and measuring quality of life (QOL) in pediatric patients with cancer since the 1995 Oncology Nursing Society's State-of-the-Knowledge Conference on QOL...

..Because of this, use of the HUI3 by nurse proxies for patients with pediatric acute lymphoblastic leukemia is not recommended...

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..To describe parental decision making about treatment options for children with cancer and determine the feasibility of a similar but larger international study...

..The link between these definitions and planned future fatigue intervention research is also described...

..From these guidelines, 4 clinical care projects were developed and are described in this article...

..Such interventions could also contribute to the highest quality and cost-effective care being provided to the bereaved survivors...

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..The aim of this paper is to report the rates and reasons for refusal given by 817 eligible participants from 10 completed and ongoing nursing and behavioural medicine studies in paediatric oncology from 1994 to 2004...

..We assessed the availability and quality of palliative care for children with cancer according to national income per capita...

..We explored factors that influenced making decisions regarding interventions and examined the relations between treatment preference and health-related quality of life (HRQOL)...

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..IMPLICATIONS FOR NURSING PRACTICE: Practice guidelines to assist patients and parents cope with a return of cancer can help health care professionals develop interventions for particular families...

..The purpose of this article is to describe the process used to create and evaluate nursing care guidelines...

..These outcomes suggest that the revised SRS model does not adequately predict role consequences in pediatric oncology nurses. A new model is proposed...

..To evaluate the effects of once-weekly epoetin alfa (EPO) on health-related quality of life (HRQOL), hemoglobin (Hb), transfusions, and tolerability in children with cancer...

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..We therefore assessed medical care that was continued, added, and discontinued after a DNR order was placed in the medical record...

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..We assessed whether race (white, black) was associated with the frequency of do-not-resuscitate (DNR) orders, the number and timing of EOLC discussions, or the timing of EOLC decisions among patients treated at our institution who died...

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..Future studies will examine whether the RRMS adequately measures the change in meaning brought about by interventions designed to increase role-related meaning among nurses...

..By using analysis of variance, the authors found that ideal body weight and years of sickness were significantly associated with calorie and protein intake...

..They conclude that establishing a state-of-the-art palliative and EoL program in a cure-oriented pediatric setting is achievable via consensus building and recruitment of diverse institutional resources...

..The transformation of the fellowship and the short-term outcomes are described...

..The emphasis of the ultimate aims of pediatric palliative care is to care for the body, mind, and spirit, to enhance quality of life, and to minimize suffering...

..To examine gender differences in sleep, fatigue, and daytime activity in a sample of children with acute lymphoblastic leukemia (ALL)...

..CONCLUSIONS: EPO disposition in our patients was similar to other pediatric patient populations or adults receiving IV EPO. Interesting but insignificant trends were noted in pharmacodynamic effects...

..Clinicians can use these descriptions and the associated symptom patterns to help families prepare for their child's last week and last day...

..Clinicians' strong desire to provide compassionate, competent, and sensitive care to the seriously ill child and the child's family can be effectively translated into clinical practice through these processes...

..The purpose of this study was to identify the cancer-related symptoms that most concerned parents during the last days of their child's life and the strategies parents identified as helpful with their child's care...

..FMA requires the patients to physically perform the functional mobility measures, unlike patient self-report or clinician administered measures...

..Pleurodesis for end-of-life care has been used in adults for decades, but little is known about the usefulness of this technique in improving the quality of care for pediatric patients...

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..Octreotide suppressed insulin, and stabilized weight and BMI. Improved quality of life correlated with the degree of insulin suppression. Octreotide was safe and well tolerated...

..The present study explores whether the attentional and executive functioning (EF) deficits associated with cancer and treatment place survivors of childhood cancer at increased risk for smoking...

..The study was designed to examine relationships between range of motion (ROM), functional mobility, and quality of life (QL) in patients with lower-extremity sarcoma (LES) after limb-sparing surgery..

..Its use in measuring the intensity of fatigue in adolescents is likely to yield accurate assessments of their fatigue that could prompt clinical efforts to relieve their fatigue-related distress...

..The instruments demonstrated strong initial validity and reliability estimates. This study is the first to provide valid and reliable instruments to measure fatigue in children with cancer...

..To present an overview of research into end-of-life (EoL) care for pediatric patients with cancer and to describe research completed by a newly formed collaboration of researchers...

..These study findings provide the basis for future interventions that may diminish the effect that caregiving demands place on parents of children with cancer...

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..The long-term complications of anemia in children with cancer are unknown. Further investigation of the clinical significance of anemia, including its impact on quality of life, is warranted...

..The aim of this study was to develop and evaluate the psychometric properties of a Chinese version of the Fatigue Scale-Children (FS-C-C)...

..We found it was extremely beneficial to include a focus group pre-phase in a study that will interview parents in a high sensitivity area...

..To review the state of the science on sleep/wake disturbances in people with cancer and their caregivers...

..To describe a novel structure designed to integrate nursing research into the Children's Oncology Group (COG)...

..The objective of this report is to provide a historical overview of and the issues and challenges inherent in the incorporation of patient-reported outcomes (PROs) into multinational cancer clinical trials in the cancer cooperative groups...

..Data from this study reveal that CTT does have an impact on QoL. This information is important to share with those making CTT treatment decisions...

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..The basis of familial duties is complex, including such factors as the nature, intimacy, and history of the relationship and the specific risks and benefits to all involved. We examine each of these factors for our case study...

..Our study findings will explicate the relationship between sleep efficiency and fatigue, and between sleep, fatigue, and systemic exposure to dexamethasone. ..

..This study will allow us to measure direct symptom and quality of life reports of children and adolescents with incurable cancer who are receiving experimental drugs. ..