Experiences Among Patients With Cystic Fibrosis in the MucoExocet Study of Using Connected Devices for the Management of Pulmonary Exacerbations: Grounded Theory Qualitative Research.

BACKGROUND: Early detection of pulmonary exacerbations (PEx) in patients with cystic fibrosis is important to quickly trigger treatment and reduce respiratory damage. An intervention was designed in the frame of the MucoExocet research study providing patients with cystic fibrosis with connected devices and educating them to detect and react to their early signs of PEx. OBJECTIVE: This study aims to identify the contributions and conditions of home monitoring in relation to their care teams from the users' point of view to detect PEx early and treat it. This study focused on the patients' experiences as the first and main users of home monitoring. METHODS: A qualitative study was conducted to explore patients' and professionals' experiences with the intervention. We interviewed patients who completed the 2-year study using semistructured guides and conducted focus groups with the care teams. All the interviews were recorded and transcribed verbatim. Their educational material was collected. A grounded analysis was conducted by 2 researchers. RESULTS: A total of 20 patients completed the study. Three main categories emerged from the patients' verbatim transcripts and were also found in those of the professionals: (1) task technology fit, reflecting reliability, ease of use, accuracy of data, and support of the technology; (2) patient empowerment through technology, grouping patients' learnings, validation of their perception of exacerbation, assessment of treatment efficacy, awareness of healthy behaviors, and ability to react to PEx signs in relation to their care team; (3) use, reflecting a continuous or intermittent use, the perceived usefulness balanced with cumbersome measurements, routinization and personalization of the measurement process, and the way data are shared with the care team. Furthermore, 3 relationships were highlighted between the categories that reflect the necessary conditions for patient empowerment through the use of technology. CONCLUSIONS: We discuss a theorization of the process of patient empowerment through the use of connected devices and call for further research to verify or amend it in the context of other technologies, illnesses, and care organizations. TRIAL REGISTRATION: ClinicalTrials.gov NCT03304028; https://clinicaltrials.gov/ct2/show/results/NCT03304028.

Lack of consideration of socioeconomic factors in transition programme of adolescents with type 1 diabetes: A systematic review.

The transition of adolescents with type 1 diabetes should be organized such that loss of follow-up and deterioration of patients' metabolic control are minimized. OBJECTIVE: Our study aimed to ascertain whether socioeconomic status is featured in the characteristics of adolescents with type 1 diabetes in transition programmes and their inclusion in transition programmes. RESEARCH DESIGN AND METHODS: A systematic review of the literature was performed according to PRISMA recommendations. All articles published between 2010 and 2023 were considered. Studies that described a transition programme for adolescents or young adults with T1DM were included. RESULTS: After screening, 18 studies were included. Different transition programmes were proposed (exchanges between professionals, coordinators, and transition clinics). Nine articles described socio-economic factors. The educational level was the most frequently reported. Only three studies evaluated the impact of one parameter on transition success: a lower education level was associated with more hospital visits for hyperglycaemia, and the other did not report any socioeconomic factor associated with clinic attendance. CONCLUSIONS: The socioeconomic status of type 1 diabetes is poorly described in transition programmes, and the few that do make mention of it, offer little information about patient management.

[History and challenges of the transition from pediatrics to adult care]. / Histoire et enjeux de la transition pédiatrie-soins d'adultes.

Transition from pediatrics to adult care involves a growing number of young people living with chronic health conditions. Now a field of study and practice, transition has been built up in successive stages, the nature of which informs us about its evolution and current issues.

The Experience of Parents of Children With Genetically Determined Leukoencephalopathies With the Health Care System: A Qualitative Study.

Parents of children with genetically determined leukoencephalopathies play a major role in their children's health care. We sought to gain a better understanding of their experience with the public health care system in Quebec, Canada, to obtain suggestions for improving their services, and to identify modifiable factors to improve their quality of life. We conducted interviews with 13 parents. Data was analyzed thematically. Five themes were identified: challenges of the diagnostic odyssey, limited access to services, excessive parental responsibilities, positive relationships with health care professionals as a facilitator of care, and benefits of a specialized leukodystrophy clinic. Parents felt like waiting for the diagnosis was extremely stressful, and they expressed their need for transparency during this period. They identified multiple gaps and barriers in the health care system, which burdened them with many responsibilities. Parents emphasized the importance of a positive relationship with their child's health care professionals. They also felt grateful for being followed at a specialized clinic as it improved the quality of care received.

Self-reported needs of caregivers of people with Autism Spectrum Disorder.

OBJECTIVES: Autism spectrum disorder (ASD) has a major impact on caregivers. We aimed to describe caregivers' perceptions concerning their level of knowledge about ASD and their needs to better adapt education and training programs. METHODS: This was a descriptive cross-sectional study conducted through a declarative and self-administered survey in France. RESULTS: 1,013 individuals answered the questionnaire in 2020. If most caregivers felt they had sufficient knowledge about ASD, they still expressed a high level of needs regarding acquiring knowledge, identifying available resources, and finding social/emotional support. CONCLUSIONS: This study highlights the high level of needs of caregivers and their expectations of improving their knowledge and skills to help the person with ASD.

A scoping review of education and training interventions in Autism Spectrum Disorder.

OBJECTIVE: Autism Spectrum Disorder (ASD) is a chronic neurodevelopmental disorder. Living with ASD requires that individuals and parents develop skills in order to cope with daily life. Education interventions are recommended to support them. This study aims to get an overview of education and training interventions in ASD. METHODS: A scoping review of international literature was conducted. RESULTS: 43 articles were analyzed. Four main types of intervention stand out: support groups, parental training; psychoeducation; therapeutic patient education. However, the majority of publications is focused on the parents rather than on individuals living with ASD, and the needs assessments identified focused on general needs rather than educational needs. CONCLUSION: While educational interventions for parents and individuals with ASD are now encouraged, considerable heterogeneity is observed. But this variety is not based on a reasoned approach to matching supply and needs. Future studies could focus more on the educational needs of individuals with ASD. PRACTICE IMPLICATIONS: Overview of education and training interventions in ASD help health care providers to better understand the strengths and limitations of their interventions.

Are transition preparation consultations for adolescents with chronic conditions valuable? A mixed-methods study.

Our objective was to assess the value of transition preparation consultations (TPC) offered by the AD'venir unit (R. Debré hospital, Paris) as a new service of transitional care, from the perspective of adolescents with chronic conditions (CCs) and their referring healthcare providers (RHCPs). TPCs included a face-to-face interview with pediatricians trained in adolescent medicine, exploring the adolescent's past (CC history), present (daily life, Treatment Burden Questionnaire, family/peer relationships, school, hobbies, sexuality, drugs), and future (global life project, transition, Good2Go questionnaire). The mixed-methods design included the following: a qualitative analysis within a multidisciplinary group (clinicians/sociologists/psychologist/public health researchers) of audio-recordings of TPCs (n = 27/girls = 56%/median age = 17.7 years) and phone interviews with adolescents 2 years post-TPC (n = 26); and a quantitative analysis of the Treatment Burden and Good2Go questionnaires and the benefits perceived by RHCPs (questionnaire 6 months post-TPC). TPCs were a form of training for adult care, adolescents meeting a practitioner alone often for the first time. Naming their CC was difficult. All complained of limitations experienced in social life (diet, fatigue, laboratory/medical appointments), but not the treatment itself; most adolescents willingly talked about sexuality. Adolescents' feelings about transition were various, with poor representations of adult healthcare. Transfer was frequently unplanned. After TPCs, RHCPs modified their practices. Transition in the 2 years post-TPC was usually successful. Conclusion What is Known: • In adolescents with chronic conditions, it is advocated to personalize transition care according to the clinical and social context, pointed out as potentially impacting. • Little is known about the most effective ways to prepare patients according to their needs. What is New: • Based on a global approach to adolescent health, transition preparation consultations are delivered by specially trained physicians. • They are a feasible and valuable way to highlight facilitators and barriers to successful transition and initiate the adolescents' own vision of their future.

A qualitative study of adolescents and young adults' experience and perceived needs during the first wave of the COVID-19 pandemic.

AIMS: COVID-19 has led to unprecedented public health measures such as school and university closures across the world. While initial surveys show an increase in anxiety, we have little information on the subjective experience of adolescents and young adults (AYAs). The aims of this study were to understand the lived experience and needs of AYAs related to home confinement and preventive measures due to COVID-19. DEMOGRAPHICS AND SETTINGS: A total of 25 AYAs (13-24 years old) with diverse gender, age, or health conditions, living in Québec (Canada), were interviewed in May 2020, during the COVID-19 home confinement period. METHODOLOGY: Four virtual focus groups were held via a virtual video-conferencing platform (Zoom©). Thematic analysis was conducted. RESULTS: Thematic analysis revealed five main themes: (1) challenges and opportunities related to the experience of home confinement; (2) variable risk perception of COVID-19 infection; (3) development of coping strategies to maintain well-being; (4) need for information and accompaniment; (5) apprehensions related to perceptions of the future. CONCLUSION: AYAs did not feel considered in public health decisions, fostering an increase in anxiety, especially in more vulnerable AYAs living with chronic diseases.

Experience of Parents of Children with Genetically Determined Leukoencephalopathies Regarding the Adapted Health Care Services During the COVID-19 Pandemic.

Parents of children with genetically determined leukoencephalopathies play a major role in their children's health care. Because of the COVID-19 pandemic, many health care services were suspended, delayed or delivered remotely with telemedicine. We sought to explore the experience of parents of children with genetically determined leukoencephalopathies during the pandemic given the adapted health care services. We conducted semistructured interviews with 13 parents of 13 affected children. Three main themes were identified using thematic analysis: perceived impact of COVID-19 on health care services, benefits and challenges of telemedicine, and expectations of health care after the pandemic. Parents perceived a loss/delay in health care services while having a positive response to telemedicine. Parents wished telemedicine would remain in their care after the pandemic. This is the first study assessing the impact of COVID-19 on health care services in this population. Our results suggest that parents experience a higher level of stress owing to the shortage of services and the children's vulnerability.

Use of Home-Based Connected Devices in Patients With Cystic Fibrosis for the Early Detection and Treatment of Pulmonary Exacerbations: Protocol for a Qualitative Study.

BACKGROUND: Early detection of pulmonary exacerbations (PEx) in patients with cystic fibrosis (CF) is important to quickly trigger treatment and reduce respiratory damage. We hypothesized that using home-based and wearable connected devices (CDs) and educating patients to react in case of abnormal variations in a set of parameters would allow patients to detect and manage their PEx early with their care team. OBJECTIVE: This qualitative study aimed to assess the feasibility and appropriate conditions of a new PEx management process from the users' point of view by analyzing the experience of patients and of CF center teams regarding the education program, the use of CDs, and the relationship between the patient and the care team during PEx management. METHODS: We have been conducting a multicenter pilot study involving 36 patients with CF aged ≥12 years. The intervention was divided into 3 phases. In phase 1 (3 months), patients were equipped with CDs, and their parameters were collected on 3 nonconsecutive days each week. Phase 2 involved the development of a "React to PEx" educational program aimed at providing patients with a personalized action plan. A training session to the educational program was organized for the physicians. Physicians then determined the patients' personalized alert thresholds by reviewing the data collected during phase 1 and their patients' clinical history. In phase 3 (12 months), patients were educated by the physician during a clinic visit, and their action plan for reacting in timely fashion to their PEx signs was defined. Education and action plans were revised during clinic visits. At the end of the project, the patients' experience was collected during semistructured interviews with a researcher as part of the qualitative study. The experience of CF teams was collected during focus groups using a semistructured guide once all their patients had finished the study. The interviews and focus groups were recorded and transcribed verbatim to be analyzed. Data from educational sessions were collected throughout the educational program to be put into perspective with the learnings reported by patients. Analyses are being led by 2 researchers using NVivo (QSR International). RESULTS: The study received the favorable reception of the Committee for the Protection of Persons (CPP NORTH WEST III) on June 10, 2017 (#2017-A00723-50). Out of the 36 patients included in phase 1, 27 were educated and entered phase 3. We completed collection of all data from the patients and care providers. Qualitative analysis will provide a better understanding of users' experience on the conditions of data collection, how useful CDs are for detecting PEx, how useful the PEx action plan is for reacting quickly, what patients learned about PEx management, and the conditions for this PEx management to be sustainable in routine care. CONCLUSIONS: This study will open new perspectives for further research into the implementation of an optimal PEx care process in the organization of care teams in order to support patient self-management. TRIAL REGISTRATION: ClinicalTrials.gov NCT03304028; https://clinicaltrials.gov/ct2/show/results/NCT03304028. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/14552.

Risk Perception of COVID-19 Infection and Adherence to Preventive Measures among Adolescents and Young Adults.

To explore factors influencing adolescents and young adults' (AYAs) risk perception of COVID-19 and adherence to public health measures, we conducted a cross-sectional online survey of AYAs (14-22 years old) from Quebec (Canada) recruited through school and community partners in April 2020 during the first wave of the COVID-19 pandemic. The study included 3037 participants (mean age = 17.7 years, 74.6% female). AYAs had higher mean (standard deviation (SD)) risk perception of COVID-19 for their relatives (8.2 (1.9)) than for themselves (5.6 (2.6)) (p < 0.001). Factors associated with higher risk perception included higher disease knowledge (adjusted odds ratio (aOR) 1.06, 95% CI 1.01-1.11), presence of chronic disease (aOR 2.31, 95%CI 1.82-2.93) and use of immunosuppressants (aOR 2.53, 95%CI 1.67-3.87). AYAs with a higher risk perception (aOR 1.06, 95%CI 1.02-1.10) those wishing to help flatten the disease curve (aOR 1.18, 95%CI 1.12-1.25) or to protect their family/friends (aOR 1.14, 95%CI 1.05-1.24) were more likely to engage in preventive behaviors. Self-perceived risk and desire to protect others were significantly associated with adherence to preventive measures among youth. These findings may help inform public health messaging to AYAs in the current and future pandemics.

[Self-directed learning: A framework for understanding therapeutic patient education through online health forums]. / L'autoformation, cadre d'analyse de l'apprentissage des patients sur les forums de santé.

INTRODUCTION: Online Health Forums (OHFs) allow patient learning and therapeutic patient education (TPE). To reinforce the pedagogical dimension of these tools, it is necessary to understand the learning processes and conditions involved in OHFs. A potential framework for the analysis of this phenomenon is self-directed learning (SDL). OBJECTIVE: The objective is to propose a framework for the analysis of learning and TPE in OHFs, based on existing SDL theories. This could allow to identify the learning characteristics of OHFs and to identify potential implications for TPE. METHOD: A narrative review was conducted on the basis of 40 publications whose analysis through three categories (elements of SDL's definition, learner role and environmental impact) allowed to identify the explanatory theories of SDL. RESULTS: The main result is a proposition for an analytical framework to examine OHFs according to their self-formative characteristics and, then, discuss their links with TPE programs. Indeed, similar principles between SDL and TPE are emerging such as the identification of needs, the autonomy of patients/learners, and the place of Self Efficacy. These similarities highlight the potential complementarity between OHFs and SDL. CONCLUSION: SDL allows us to understand how Internet users learn on OHFs. Although links between SDL, OHFs and TPE are identified, a better understanding of the learning modes used in OHFs and their functioning according to the user profile could clarify their learning potential and their empowering effect.

A qualitative study on the educational needs of young people with chronic conditions transitioning from pediatric to adult care.

OBJECTIVES: Although patient education is recommended to facilitate the transition from pediatric to adult care, a consensus has not been reached for a particular model. The specific skills needed for the transition to help in facilitating the life plans and health of young people are still poorly understood. This study explored the educational needs of young people with diverse chronic conditions during their transition from pediatric to adult care. METHODS: Qualitative semi-structured interviews were conducted with 17 young people with chronic conditions. A thematic analysis was conducted to examine the data. RESULTS: Five themes emerged from the data, identified through the following core topics: learning how to have a new role, learning how to adopt a new lifestyle, learning how to use a new health care service, maintaining a dual relationship with pediatric and adult care, and having experience sharing with peers. CONCLUSION: A shift in perspective takes place when the transition is examined through the words of young people themselves. To them, moving from pediatric to adult care is not viewed as the heart of the process. It is instead a change among other changes. In order to encourage a transition in which the needs of young people are met, educational measures could focus on the acquisition of broad skills, while also being person-centered.

Factors influencing the transition from pediatric to adult care: A scoping review of the literature to conceptualize a relevant education program.

OBJECTIVE: To give a comprehensive overview of the factors that influence the transition from pediatric services to adult care, and to conceptualize a relevant education program. METHOD: An evaluation grid was used to analyze the literature and classify factors depending on whether they were related to the patients, to the health care organization, to health care personnel, to the interaction between medical staff and patient, or to the illness and its treatment. RESULTS: We based our analysis on a selection of 20 publications. The following factors were identified and classified in an integrative framework: self-management skills, trust in adult care, the feeling of self-efficacy, social support, the patient's gender and social position, the trust between child carers and adult carers, interdisciplinary cooperation, and the medical staff's consideration of the patient's projects. CONCLUSIONS AND PRACTICE IMPLICATIONS: The current analysis makes it possible to formulate educational aims and to design a way of integrating them to a transition plan. However, the collected studies mainly focus on knowledge of the illness, on treatment, and on the health care system. Psychosocial dimensions at play at the time of the transition - such as identity development - are not sufficiently explored in the research.