70 research outputs found

    Prospective longitudinal evaluation of treatment-related toxicity and health-related quality of life during the first year of treatment for pediatric acute lymphoblastic leukemia

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    Background Pediatric acute lymphoblastic leukemia (ALL) therapy is accompanied by treatment-related toxicities (TRTs) and impaired quality of life. In Australia and New Zealand, children with ALL are treated with either Children's Oncology Group (COG) or international Berlin-Frankfurt-Munster (iBFM) Study Group-based therapy. We conducted a prospective registry study to document symptomatic TRTs (venous thrombosis, neurotoxicity, pancreatitis and bone toxicity), compare TRT outcomes to retrospective TRT data, and measure the impact of TRTs on children's general and cancer-related health-related quality of life (HRQoL) and parents' emotional well-being. Methods Parents of children with newly diagnosed ALL were invited to participate in the ASSET (Acute Lymphoblastic Leukaemia Subtypes and Side Effects from Treatment) study and a prospective, longitudinal HRQoL study. TRTs were reported prospectively and families completed questionnaires for general (Healthy Utility Index Mark 3) and cancer specific (Pediatric Quality of Life Inventory (PedsQL)-Cancer Module) health related quality of life as well the Emotion Thermometer to assess emotional well-being. Results Beginning in 2016, 260 pediatric patients with ALL were enrolled on the TRT registry with a median age at diagnosis of 59 months (range 1-213 months), 144 males (55.4%), majority with Pre-B cell immunophenotype, n = 226 (86.9%), 173 patients (66.5%) treated according to COG platform with relatively equal distribution across risk classification sub-groups. From 2018, 79 families participated in the HRQoL study through the first year of treatment. There were 74 TRT recorded, reflecting a 28.5% risk of developing a TRT. Individual TRT incidence was consistent with previous studies, being 7.7% for symptomatic VTE, 11.9% neurotoxicity, 5.4% bone toxicity and 5.0% pancreatitis. Children's HRQoL was significantly lower than population norms throughout the first year of treatment. An improvement in general HRQoL, measured by the HUI3, contrasted with the lack of improvement in cancer-related HRQoL measured by the PedsQL Cancer Module over the first 12 months. There were no persisting differences in the HRQoL impact of COG compared to iBFM therapy. Conclusions It is feasible to prospectively monitor TRT incidence and longitudinal HRQoL impacts during ALL therapy. Early phases of ALL therapy, regardless of treatment platform, result in prolonged reductions in cancer-related HRQoL.Clarissa E. Schilstra, Karen McCleary, Joanna E. Fardell, Mark W. Donoghoe, Emma McCormack, Rishi S. Kotecha, Richard De Abreu Lourenco, Shanti Ramachandran, Ruelleyn Cockcroft, Rachel Conyers, Siobhan Cross, Luciano Dalla, Pozza, Peter Downie, Tamas Revesz, Michael Osborn, Frank Alvaro, Claire E. Wakefield, Glenn M. Marshall, Marion K. Mateos, and Toby N. Trahai

    Practicing Imperfect Forgiveness

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    Forgiveness is typically regarded as a good thing - even a virtue - but acts of forgiveness can vary widely in value, depending on their context and motivation. Faced with this variation, philosophers have tended to reinforce everyday concepts of forgiveness with strict sets of conditions, creating ideals or paradigms of forgiveness. These are meant to distinguish good or praiseworthy instances of forgiveness from problematic instances and, in particular, to protect the self-respect of would-be forgivers. But paradigmatic forgiveness is problematic for a number of reasons, including its inattention to forgiveness as a gendered trait. We can account for the values and the risks associated with forgiving far better if we treat it as a moral practice and not an ideal

    Understandings of cervical screening in sexual minority women: A Q-methodological study

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    Discursive perspectives argue that cervical screening carries social and moral meaning. Overlooked by research into the health needs of sexual minority women, previous literature that has examined uptake of cervical screening has instead targeted increasing attendance via information and service provision. In order to explore the diversity of meanings that British sexual minority women have about cervical screening, the Q-sorts of 34 sexual minority women were factor analysed by-person and rotated to simple structure using Varimax. The five factors are interpreted and discussed relative to competing discourses on information provision within cervical screening. The five accounts are labelled 'cervical screening is': an essential health check that women have the right to refuse; a woman's health entitlement; a vital test but degrading experience; a sensible thing to do; and an unnecessary imposition for some women. Critical approaches to informed choice are explored with attention to recent developments in cervical cancer prevention. Findings highlighting the need for affirmation of diversity within healthcare are considered in relation to existing criteria for UK national screening programmes

    Adam Smith and the Virtues of Enlightenment

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    Research in nursing gerontology

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