Summary Background Pediatric acute lymphoblastic leukemia (ALL) therapy has evolved such that the risk for late effects in ALL survivors treated on contemporary protocols is likely different from that observed in survivors treated in prior eras. We estimated the risk for late effects in children with standard-risk ALL treated in the current era using data from similarly treated members of the Childhood Cancer Survivor Study (CCSS) cohort. Methods The CCSS is a multi-centre North American study of five-year survivors of childhood cancer diagnosed between 1970 and1986. Cohort members were eligible for this analysis if they were aged 1·0–9·9 years at the time of ALL diagnosis and received therapy consistent with contemporary standard-risk ALL protocols. Outcomes were compared to a sibling cohort (n=2788) and the general United States population. Findings 556/5980 cohort members treated for ALL met the inclusion criteria. After a median follow up of 18·4 years (range 0·0–33·0) from cohort entry, 28/556 (5%) had died (standardized mortality ratio, 3·5; 95% CI, 2·3–5·0). Sixteen deaths were due to causes other than ALL recurrence. Among 556 survivors, six (1%) developed a subsequent malignant neoplasm (standardized incidence ratio, 2·6; 95% CI, 1·0–5·7). 107 subjects in each group would need to be followed for one year in order to observe one extra chronic health condition in the ALL group compared to the sibling group (95% CI, 81–193). 415 subjects in each group would need to be followed for one year to observe one extra severe, life-threatening or fatal condition in the ALL group (95% CI, 376–939) Survivors did not differ from siblings in their educational attainment, rate of marriage or independent living. Interpretation Overall, the expected prevalence of adverse long-term outcomes among children treated for standard risk ALL on contemporary protocols is low, but regular care from a knowledgeable primary care practitioner is warranted. Funding National Cancer Institute, Cancer Center Support, American Lebanese-Syrian Associated Charities, Cancer Research Switzerland.
BackgroundPrimary care is facing a multimorbid, ageing population and a lack of general practitioners (GPs), especially in rural areas. In many countries, advanced practice nurses (APNs) may be a potential solution for these challenges. Switzerland, however, is in the early stages of APN role development with a handful of pilot projects that are unresearched. Our aim was to explore the experiences of APNs and GPs involved in introducing the APN role to Swiss primary care.MethodsWe organised two focus group discussions with APNs (n = 9) engaged in primary care across German-speaking Switzerland and individual interviews with APNs (n = 2) and GPs (n = 4) from two pilot projects in remote areas. Data analysis followed an exploratory hybrid approach of thematic analysis and was guided by the PEPPA Plus framework.ResultsThe analysis resulted in five main themes: The participants considered themselves pioneers developing a new model in primary care, seeking to shape and improve future health care ((1) pioneering spirit). Both nurses and doctors agreed on the additional value of the APN role, a role seen as having more time for and a different approach to patient care, bringing higher quality of care and flexibility to the practice ((2) added value from the APN role). Participants also emphasized the importance of asking for advice when unsure about diagnostic steps or appropriate treatment ((3) awareness of limited knowledge and skills). The main barriers identified included the impression that Swiss doctors have little knowledge about nurses in advanced roles ((4) GP’s lack of knowledge regarding the APN role), and that further regulations will be important to foster role clarity and accountability ((5) political and legal obstacles in introducing the APN role).ConclusionsThe early phase of introducing APNs to Swiss primary care is characterised by heterogeneous, small-scale projects of pioneering GPs and APNs recognising the added value and limits of APNs despite a lack of governance and knowledge regarding the APN role among GPs. Experiences gained from ongoing projects provide elements of good practice for political discussions and regulations.
The framework within which professionals communicate, the different perspectives on the factors that make communication difficult, and the different expectations regarding good communication by doctors and nurses should be considered when communication skills training courses are developed for professionals who work in adolescent oncology.
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