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Introduction: In 2018, 55.4% of the 7180 French cystic fibrosis (CF) patients were adults. Our study was aimed at identifying young adult patients' needs and those of their parents when the young adults arrived in an adult CF center., Methodology: Semi-structured interviews, conducted between July 2018 and December 2019and involving all the concerned teenagers and their parents, took place at least 6 months after their transfer. The interview guide dwelt on the aspects having had an impact on their experience of the transition. The interviews were recorded, transcribed and analyzed exhaustively. The results were classified by categorizing the contents according to respondent profile., Results: Thirty-eight young adult patients and 16 parents were interviewed. As regards the young adults, analysis of their needs underlined the importance of their continuing to develop their skills in adaptation, communication and self-care. As regards their parents, they needed support in view of defining their role in their children's new care pathway., Conclusion: During and also following the transfer, therapeutic education for the parents as well as the young adults requires reinforcement., (Copyright © 2022 SPLF. Published by Elsevier Masson SAS. All rights reserved.)

Le maintien à domicile d'une personne en soins palliatifs et de fin de vie (SPFV) dépend grandement de la présence quotidienne de proches aidants (PA) et de leur implication dans les soins. Or, les besoins des PA tout au long de la trajectoire d'accompagnement d'un proche en SPFV à domicile sont encore relativement méconnus., Objectifs Et Méthode: Cette étude qualitative descriptive s'intéresse au rôle des PA qui ont accompagné une personne recevant des SPFV à domicile dans le but de décrire leurs besoins tout au long de la trajectoire d'accompagnement. Ainsi, 20 PA ont participé à des entrevues semi-dirigées., Résultats Et Discussion: L'étude met en lumière les besoins multiples des PA qui accompagnent un proche en SPFV à domicile. Les besoins informationnels, émotionnels et psychosociaux démontrent que les PA connaissent des changements dans leur rôle auprès de la personne malade. Les besoins spirituels ont été rapportés en termes de sens donné à l'expérience d'accompagnement. Enfin, les besoins pratiques mettent de l'avant l'importance d'avoir accès aux services de SPFV 24 h/24 et le caractère essentiel du soutien de l'infirmière., Conclusion: Les besoins des PA qui accompagnent une personne en SPFV à domicile sont peu satisfaits. Il importe d'en tenir compte dans la trajectoire de soins, parallèlement aux besoins de la personne malade, afin d'améliorer l'expérience d'accompagnement qui précède la période de deuil., (© 2020 Canadian Association of Nurses in Oncology (CANO).)

Background.: Children with autism spectrum disorder (ASD) face multiple occupational challenges in their school, and school staff need additional support to increase their participation., Purpose.: The aim of this study is to identify how Response to Intervention (RTI) could be used by occupational therapists to support school personnel who work with children with ASD., Method.: In a descriptive qualitative study, three discussion groups were undertaken with occupational therapists and school staff members in Quebec, Canada, to identify the main concerns regarding the participation of children with ASD in school activities as well as the actions to consider when attempting to increase school-related abilities., Findings.: School staff members are primarily concerned with frequent outbursts and limited autonomy, along with low motivation and anxiety in children with ASD in diverse school activities and contexts. The actions identified provide guidelines for school and occupational therapist selection, the process to follow, collaborative practices, and support required., Implications.: A practice model is presented for occupational therapists who seek to develop school capacity to support the participation of children with ASD.

Acromegaly can impair quality of life, but impact on patients' daily life, needs and expectations have been poorly explored., Objectives: To better understand the impact of acromegaly on patients' daily life, and evaluate their needs and expectations., Patients and Methods: An on-line questionnaire survey of acromegaly patient and relative community members was conducted on the Carenity website., Results: Twenty-five patients and 3 relatives, with a mean age of 48.9 years, responded. Diagnosis of acromegaly was recent (60% within 10 years). Signs at diagnosis were mainly clinical (fatigue, headache) and physical changes (acral enlargement). Reported complications comprised morphological changes (93%), bone and joint symptoms (75%) and metabolic disorders (75%). Pain and fatigue impacted the daily life of 61% and 54% patients, respectively. Acromegaly had strong impact on mood (79%), leisure (75%) and social life (71%). Patients mostly got information from specialized websites (71%), their endocrinologist (61%) and patient associations (54%). The information sought was patient testimony (82%), practical advice (64%), and information on clinical trials (61%) and treatments (50%). Patients wished to have patient-physician discussion groups (25%), and better knowledge of acromegaly on the part of those they were in contact with (25%)., Conclusion: Acromegaly has a major impact on patients' daily life and mood. Patients wished their disease to be better known, and advocated setting up discussion groups. This study should encourage acromegaly education programs to adapt the services and information that are needed by acromegalic patients., (Copyright © 2018 Elsevier Masson SAS. All rights reserved.)

Background: Healthcare is a labor-intensive sector in which half of the expenses are dedicated to human resources. Therefore, policy makers, at national and internal levels, attend to the number of practicing professionals and the skill mix. This paper aims to analyze the European forecasting model for supply and demand of physicians., Methods: To describe the forecasting tools used for physician planning in Europe, a grey literature search was done in the OECD, WHO, and European Union libraries. Electronic databases such as Pubmed, Medine, Embase and Econlit were also searched., Results: Quantitative methods for forecasting medical supply rely mainly on stock-and-flow simulations and less often on systemic dynamics. Parameters included in forecasting models exhibit wide variability for data availability and quality. The forecasting of physician needs is limited to healthcare consumption and rarely considers overall needs and service targets. Besides quantitative methods, horizon scanning enables an evaluation of the changes in supply and demand in an uncertain future based on qualitative techniques such as semi-structured interviews, Delphi Panels, or focus groups. Finally, supply and demand forecasting models should be regularly updated. Moreover, post-hoc analyze is also needed but too rarely implemented., Conclusion: Medical human resource planning in Europe is inconsistent. Political implementation of the results of forecasting projections is essential to insure efficient planning. However, crucial elements such as mobility data between Member States are poorly understood, impairing medical supply regulation policies. These policies are commonly limited to training regulations, while horizontal and vertical substitution is less frequently taken into consideration., (Copyright © 2017 Elsevier Masson SAS. All rights reserved.)

Background and Objectives: High myopia (HM), which affects 0.9 to 3.1% of the population, is a major cause of vision loss. The purpose of this investigation was to study and evaluate the impact of their high myopia on the daily lives of patients and to better understand their expectations in order to better meet their needs., Materials and Methods: The survey was conducted between February 19 and March 21, 2014. To be eligible, patients had to have myopia of at least -8 diopters and be over 40 years of age, with or without myopic complications. Patients' degree of myopia was defined as the optical prescription of their worse eye. The 123 patients included were interviewed by phone using a questionnaire developed and validated by a scientific committee composed of experts and members of the patients' Association against myopic maculopathy (AMAM). The phone interview, semi-structured, lasted 20 minutes., Results: On average, myopia was -11.7 diopters. Women accounted for 71% of the population, 89% of patients were under 65 years and were mostly professionals (65%). Over half of the subjects reported myopic complications; 5% of patients had choroidal neovascularization (CNV). Only 29% had been informed of the risk of CNV or maculopathy. HM was a handicap in sports for 64% of patients, in leisure activities for 51%, and in professional activities for more than a quarter (28%). Only 56% of HM patients reported living perfectly well with their condition., Conclusions: This survey is the first study on the daily life of people with HM aiming to analyze their social and emotional environment. It shows that HM has a profound impact on the daily lives of patients and may affect social life and professional activity. Most myopic patients possess incomplete or unclear information about the nature and risk of myopic complications. They expressed the desire to be better informed about their condition earlier, before the onset of complications., (Copyright © 2015 Elsevier Masson SAS. All rights reserved.)