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Marie-Anne Durand,1– 3 Marie Bannier,4 Marie-Anastasie Aim,5,6 Julien Mancini7 1CERPOP, Université de Toulouse, Inserm, Université Toulouse III Paul Sabatier, Toulouse, France; 2The Dartmouth Institute for Health Policy & Clinical Practice, Dartmouth College Lebanon, Lebanon, NH, USA; 3Unisanté, Centre universitaire de médecine générale et santé publique, Lausanne, Switzerland; 4Institut Paoli-Calmettes, Marseille, France; 5AP-HM, Délégation à la Recherche Clinique et à l’Innovation, Marseille, France; 6Aix-Marseille Univ, LPS, Aix-en-Provence, France; 7Aix-Marseille Univ, APHM, INSERM, IRD, ISSPAM, SESSTIM, “Cancer, Biomedicine & Society” Group, Equipe Labellisée LIGUE, Hop Timone, Marseille, FranceCorrespondence: Julien Mancini, SESSTIM (Aix-Marseille Univ, Inserm, IRD) “Cancer, Biomedicine & Society” group, Institut Paoli-Calmettes, 232 Bd Ste Marguerite, BP 156, Marseille Cedex 9, Marseille, 13273, France, Tel +33 491 22 35 01, Email julien.mancini@univ-amu.frPurpose: After a diagnosis of early-stage breast cancer, women of lower socioeconomic position (SEP) report worse outcomes than women of higher SEP. A pictorial conversation aid was shown to improve decision outcomes in controlled contexts. No such intervention existed in France. In Phase 1, our aim was to adapt, for use in France, two pictorial conversation aids for breast cancer surgery and reconstruction. In Phase 2, our aim was to implement them in a regional cancer center serving a diverse population.Patients and Methods: In phase 1, we used iterative qualitative methods to adapt the conversation aids with a convenience sample of patients and health professionals. In phase 2, we tested their implementation using PDSA cycles with volunteer surgeons.Results: In phase 1, we interviewed 10 health professionals and 5 patients to reach thematic data saturation. They found the conversation aids usable and very acceptable (especially patients) and suggested small changes to further simplify the layout and content (including a glossary). In phase 2, three surgeons started the first PDSA cycle, for 4 weeks. Only one additional surgeon agreed to take part in the second cycle. The third cycle was cancelled since no new surgeon agreed to take part. Time was a barrier for 2 out of 4 surgeons, potentially explaining the difficulty recruiting for the third cycle. The evaluation was otherwise positive. The surgeons found the conversation aids very useful during their consultations and all intended to continue using them in the future.Conclusion: It was possible to adapt, for use in France, pictorial conversation aids proven to be effective elsewhere. While the adapted conversation aids were deemed usable by health professionals and very acceptable to patients, their implementation using PDSA cycles proved slow.Plain Language Summary: After a diagnosis of early-stage breast cancer, women of lower health literacy and socioeconomic position report worse outcomes than women of higher health literacy and socioeconomic position. Pictorial conversation aids were shown to improve decision outcomes in controlled contexts. No such intervention existed in France. Our aims were to adapt, for use in France, two lower health literacy pictorial conversation aids for breast cancer surgery and reconstruction, and then to implement them in a regional cancer center. Health professionals and patients found the conversation aids usable and very acceptable (especially patients) and suggested changes. Regarding implementation, the evaluation was also positive but time was a barrier for surgeons, and it was difficult to recruit many volunteers to use such conversation aids during their consultations.Keywords: shared decision-making, decision support techniques, breast cancer disparities, lower socioeconomic position

Research and development of RIYANG is carried out to produce valid products according to material experts, media experts and users (grade IV teachers) and produce practical and attractive products according to students. The method was used development method R & D of Sugiyono steps one to nine. The percentage of validation results is material experts 95%, media experts 96.4%, and users (teachers) 95.8%. Penelitian dan pengembangan RIYANG dilakukan untuk menghasilkan produk yang valid menurut ahli materi, ahli media dan pengguna (guru kelas IV) serta menghasilkan produk yang praktis dan menarik menurut peserta didik. Metode yang digunakan adalah metode pengembangan R&D Sugiyono langkah satu sampai sembilan. Persentase hasil validasi adalah ahli materi 95%, ahli media 96,4%, dan pengguna (guru) 95,8%.

Background: Profound intellectual multiple disabilities or polyhandicap (PLH) is defined as a combination of profound mental retardation and serious motor deficits resulting in extreme dependence. Support for these patients is multidisciplinary, complex, and time-consuming. Thus, institutional health care workers (HCWs) face specific working conditions: frequent physical tasks, distressed families, and restricted feedback., Objectives: We aimed to identify determinants of quality of life (QoL) of HCWs and to study longitudinal evolution., Methods: The study used data from the French cohort EVAL-PLH. The participants were institutional HCWs of persons with PLH (age ≥ 3 years at the time of inclusion; age at onset of cerebral lesion <3 years old). Two populations were used: (1) cross sectional study: the sample 1 includes the HCWs assessed at T2 (2020-2021); (2) longitudinal study: the sample 2 includes the HCWs assessed at both T1 (2015-2016) and T2 (2020-2021). The data collected included: sociodemographics, health status, professional variables, and psycho-comportemental aspects. QoL was assessed using WHOQOL-BREF which provides 4 scores., Results: In comparison with French norms, the physical and social scores of QoL were significantly lower while the psychological score was significantly higher for (i) the 223 HCWs (participation rate 62%) assessed at T2 and (ii) the 61 HCWs assessed at T1 and T2. The main factors modulating QoL were age, marital status, self-perceived financial difficulties, personal chronic disease, anxiety-mood disorders, nature of coping strategies, and burnout., Conclusion: This study confirms the mixed (negative and positive) impact of caring persons with PLH on the institutional HCWs' QOL. Main determinants of the HCW's QOL were: older age, single status, perceived financial difficulties, altered health status, burn out and coping strategies. Clinical trial registration number : NCT02400528., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest. The reviewer HB declared a past co-authorship with the authors M-CR to the handling editor., (Copyright © 2024 Rousseau, Beltran, Hamouda, Aim, Felce, Lind, Khaldi, El Ouazzani, Auquier, Villemeur and Baumstarck.)

The present longitudinal study examined a large sample of individuals with PIMD/Polyhandicap to: (i) describe the evolution over time of the health status in terms of severity, (ii) identify the potential predictors of health status change. This study used the data of the French national EVAL-PLH cohort. Inclusion criteria were: individuals with PIMD/Polyhandicap; age > 3 years at the time of inclusion; age at onset of cerebral lesion younger than 3 years old. The definition of the change in health status over the 5-year period was derived from the Polyhandicap Severity Scale. Among the 875 individuals included in 2015-2016, 492 (56.2%) individuals were assessed in 2020-2021. According to the definition, 68.8% (n = 309), 64.7% (n = 310), and 80.2% (n = 368) of the individuals presented with a worsened or stable severity status based on the global score, the abilities score, and the comorbidities score, respectively. Compared with the individuals with a non-worsened health status (global score), the individuals with a stable or worsened health status were more likely to receive care in specialized rehabilitation centres, more likely to have an antenatal or progressive aetiology, and more likely to have a higher dependency level. The current study provides a robust perspective of the worsened health among persons with PIMD/Polyhandicap over time., (© 2024. The Author(s).)

Background: In recent decades, progress has been made in the care of people with polyhandicap/profound intellectual and multiple disabilities (PIMD) through a better understanding of the pathophysiology and the development of new care management and rehabilitation strategies adapted to these extreme pathologies. Although there is a lack of knowledge about the health status and care management of the oldest people, a better understanding of the natural course of life of people with polyhandicap/PIMD would consequently allow the optimisation of preventive and curative care management strategies. Few robust data on mortality and life expectancy have been documented for this population in France. Our aims are to estimate the median survival time and assess the factors associated with mortality in people with polyhandicap/PIMD receiving care in France., Methods: This study included people with polyhandicap/PIMD, followed by the French national cohort 'Eval-PLH' since 2015. These individuals were included in specialised rehabilitation centres and residential institutions. The people included in the first wave of the cohort (2015-2016) were eligible for the present study. Vital status on 1 January 2022 (censoring date) was collected in two ways: (1) spontaneous reporting by the participating centre to the coordinating team and (2) systematic checking on the French national death platform. According to the vital status, survival was calculated in years from the date of birth to the date of death or from the date of birth to the censoring date. The factors associated with mortality were evaluated using the Cox proportional regression hazards model., Results: Data from 780 individuals aged between 3 and 67 years were analysed. At the censoring date, 176 (22.6%) had died, and the mean survival was 52.8 years (95% confidence interval: 51.1-54.5). Mortality was significantly associated with a progressive aetiology, recurrent pulmonary infections, drug-resistant epilepsy and a higher number of medical devices., Conclusions: This study shows for the first time the survival and impact of factors associated with mortality in people with polyhandicap/PIMD in France., (© 2024 The Author(s). Journal of Intellectual Disability Research published by John Wiley & Sons and MENCAP.)

Introduction: Parents of persons with profound intellectual and multiple disabilities (PIMD) play a major and often lifelong role in the care and support of their child. A better understanding of parents' perspectives regarding their experiences of parenting their child with PIMD is essential to support them more effectively. Although this topic has been explored extensively in Anglo-Saxon and Northern European countries, little is known about the experience of these parents in a highly institutionalized context such as that in France., Objective: We explored parents' experiences of the activities they performed to care for their child with PIMD (namely, the 'parenting work') in the French context., Method: Qualitative semistructured interviews were conducted by telephone with 34 parents of persons with PIMD aged 8-35. The resulting data were analyzed using thematic analysis., Results: The analysis highlighted the diversity of activities performed by parents as well as the influence of context on the forms of this parenting work. Five themes were developed: (1) navigating the challenges of obtaining medical recognition; (2) negotiating a concealed domain and becoming an expert; (3) unfolding medical and medicosocial care management; (4) navigating the challenges of daily living and (5) shaping one's child's possibilities., Conclusion: This study offers a better understanding of the challenges, levers and expectations of parents of children with PIMD in France. Contextual factors such as the lack of knowledge of PIMD among health professionals, access to knowledge and know-how associated with care management, the administrative complexity of access to care and equipment, institutional issues (e.g., professional turnover) and societal ableism (e.g., access to infrastructures, interpersonal discrimination) shape the work parents perform to support their child's needs. It is necessary to consider contextual aspects to better support these parents and their children. Suggestions for applications are provided in the discussion., Patient or Public Contribution: One of the researchers, a parent of a child with PIMD, supported the research design and provided feedback on the study's procedures and manuscript., (© 2023 The Authors. Health Expectations published by John Wiley & Sons Ltd.)

Background: The care organization of persons with profound intellectual and multiple disabilities (PIMD) varies by country according to the health care system. This study used a large sample of French individuals with severe PIMD/polyhandicap to assess: 1) the adequacy of care setting over a 5-year period and 2) health care consumption., Methods: The longitudinal study used data from the French EVALuation PoLyHandicap (EVAL-PLH) cohort of persons with severe PIMD/polyhandicap who were receiving managed in specialized care centres and residential facilities. Two assessments were performed: wave 1 (T1) in 2015-2016 and wave 2 (T2) in 2020-2021. The inclusion criteria were as follows: age > 3 years at the time of inclusion; age at onset of cerebral lesion younger than 3 years old; and severe PIMD. The adequacy of the care setting was based on the following: i) objective indicators, i.e., adequacy for age and adequacy for health status severity; ii) subjective indicators, i.e., self-perception of the referring physician about medical care adequacy and educational care adequacy. Health care consumption was assessed based on medical and paramedical care., Results: Among the 492 persons assessed at the 2 times, 50% of individuals at T1 and 46% of individuals at T2 were in an inadequate care setting based on age and severity. Regarding global subjective inadequacy, the combination of medical adequacy and educational adequacy, 7% of individuals at T1 and 13% of individuals at T2 were in an inadequate care setting. At T2, a majority of individuals were undermonitored by medical care providers (general practitioners, physical medicine rehabilitation physicians, neurologists, orthopaedists, etc.). Important gaps were found between performed and prescribed sessions of various paramedical care (physiotherapy, occupational therapy, psychomotor therapy, etc.)., Conclusions: This study revealed key elements of inadequate care management for persons with severe PIMD/polyhandicap in France. Based on these important findings, healthcare workers, familial caregivers, patients experts, and health decision-makers should develop appropriate care organizations to optimize the global care management of these individuals., Trial Registration: NCT02400528, registered 27/03/2015., (© 2024. The Author(s).)

Objective: Life habits (LH) encompass an individual's engagement in daily activities such as nutrition, fitness, personal care, communication, housing, and mobility, along with his/her social role (responsibility, interpersonal relationships, community life, education, employment, and recreation). This qualitative study explores the nature and context of LH restrictions in systemic lupus erythematosus (SLE) individuals across their SLE journey., Methods: Narrative interviews were conducted with adult SLE patients. Interview transcripts were subjected to a thematic content analysis, using the Disability Creation Process model as a framework., Results: Forty participants were interviewed. Three major themes were highlighted: (1) Temporality, capabilities, and environmental contexts: although all participants experienced LH restrictions at some point, the expression of these limitations depended on the individual's and SLE disease characteristics as well as on temporal (time of life and lupus course) and environmental (material, social, and societal) contexts. (2) Identity issues, illness stigma, and (fear of) discriminations: LH were discussed through the lens of participants' social roles and identities. While illness stigma can influence social relations, it is also expressed at a societal level. (3) Masking and minimizing strategies: due to illness stigma and fear of discrimination, participants developed strategies to manage their relationships, including masking and minimization. Their use was both advantageous and disadvantageous regarding LH., Conclusions: For individuals with SLE, LH restrictions must be considered as an ongoing process that takes place within specific contexts. Our findings provide many opportunities for interventions that can benefit patients and their families, as well as healthcare providers.

Polyhandicap is characterized by a combination of profound intellectual disability and serious motor deficit, resulting in the extreme restriction of autonomy and communication. The aim of the EVAL-PLH (EVALuation PoLyHandicap) study is to identify the impact of socioeconomic, environmental, and epidemiological determinants on the health status of the persons with polyhandicap and the daily lives of their caregivers. EVAL-PLH is a prospective cohort study. The study involved persons with severe polyhandicap (who were cared for at reeducation centers, residential facilities, and one specialized pediatric/neurological department of a university hospital), their familial caregivers and the institutional caregivers. Data collection included sociodemographics, heath status, and psychocomportemental information. Data have been collected at 2 points (2015-2016 and 2020-2021). The French EVAL-PLH cohort is the first cohort study focusing on persons with polyhandicap, their families, and the health care workers caring for them. The sustainability of the device is essential to assist patients, families, clinicians, and health decision-making authorities in the optimization of care management., (© 2022. The Author(s).)

Introduction: One option for therapeutic de-escalation in older women with early breast cancer (EBC) is partial breast irradiation (PBI) instead of whole-breast irradiation (WBI) when the latter has no clear advantages. We aimed to explore the decision-making processes and the lived experiences of WBI and PBI from the perspectives of older women with EBC., Materials and Methods: Thematic content analysis was performed on qualitative data collected using narrative interviews., Results: Twenty-two women aged 65 and over participated (ten patients who underwent WBI and twelve who underwent PBI). We identified three themes from their narratives: 1) Acceptance of a paternalistic relationship with physicians, 2) Strong need for an informed choice, and 3) PBI can help people conceal cancer-related physical marks. Narratives underlined participants' preferences for each of the two treatments and their perceptions about therapeutic de-escalation. Misconceptions about therapeutic de-escalation were observed., Discussion: When providing information about EBC treatment options, patients' perceived burden of side effects should be considered. Moreover, eliciting the value older patients place on available breast cancer treatments, as well as their related goals and preferences, could foster their participation in the therapeutic de-escalation decision-making process., (Copyright © 2022 Elsevier Ltd. All rights reserved.)

This study focuses on life experiences and social representations related to gender in the context of health among young French lay people aged from 18 to 21 years ( N  = 47). Qualitative analysis of the discursive content of nine focus groups illuminated the lay thinking underlying gender issues in the health context. Broadly speaking, group composition (i.e. unisex, mixed) had an impact on participants' discourse construction. Through their discourses, participants came to 'naturalise' the health issues and practices of each sex/gender through the biological specificities of men and women. In addition, discourse content underscores a differentiated 'imperative of health'.