Children with autism spectrum disorder (ASD) show worse oral health than their peers. Their access to health services is, at present, inadequate: few high-quality interventions have been designed and implemented to improve their care procedures so far. The purpose of this study is to describe an experience of dental care supported by Information and Communication Technologies (ICT), for children with ASD in a public health service. In our study, 59 children  participated in the MyDentist project. It integrates classic dental care techniques with new practices for desensitization and fear control, delivered through an enhanced customized ICT-based intervention aiming at familiarizing the child with ASD with the medical setting and procedures. Two questionnaires were filled out by parents to describe the acceptability of the MyDentist experience for their children. Significant results were shown from T0 (before initiating MyDentist) to T1 (after 6 months of the MyDentist experience) regarding improved oral hygiene and cooperation during dental treatments. Families positively assessed the use of ICT support. In conclusion, the project demonstrated acceptability by parents, suggesting that public health dental care and prevention can be successfully implemented without resorting to costly pharmacological interventions , taking better care of children’s health. Autism spectrum disorder (ASD) is a severe multifactorial disorder characterized by an umbrella of specific symptoms in the areas of social communication, restricted interests, and repetitive behaviors . The incSensory sensitivity is extremely heterogeneous in subjects with ASD ,20. It cThese children can also present intellectual disabilities and significant behavioral issues .These features make it difficult for dentists to assess and treat children with ASD; due to sensory sensitivity and/or intellectual disability, it may be necessary to resort to general anesthesia or sedation (conscious or deep) for dental care or invasive treatment ,23,24.Unfortunately, the professional training offered by most university programs does not deal specifically with people with ASD, so it is necessary to teach dental professionals how to treat them correctly . ChildreIn order improve cooperation of patients with ASD in a dental setting, a link between the behavioral approach and the personalized use of information and communication technologies (ICT) could be efficacious. According to previous studies conducted on children with ASD, it is possible to achieve improved oral hygiene also with both Augmentative Alternative Communication (AAC) and online video modeling sessions ,32. The This type of studies ,32 proviThe aim of this paper is to describe the first results of the project MyDentist, an in-the-field experience of dental care for children with ASD in an Italian public health service, with the support of a web application that includes various digital materials , which can be personalized for each patient.From a clinical point of view, the two specific aims of the MyDentist project were to provide adequate dental care for subjects with ASD and to support and motivate their maintaining acceptable oral health at home. The first aim focused on increasing the patient’s collaboration when sitting in the dentist chair, considering the time needed by each specific patient when performing from the simplest to the most complex therapeutic treatment. In this way, it would be possible to reduce the use of general anesthesia, at least for those treatments that generally do not need it, thus lowering economic and psychological costs.The second aim was choosing the most appropriate method to guide the patient during their oral hygiene routine at home. The selected strategies included teaching patients and parents and/or caregivers how to brush one’s teeth, identifying the most suitable tool to reinforce motivation in taking care of oral health.Confidence is achieved both during dental sessions at the clinic and at home, using games, videos and other digital activities personalized for each patient. Exploiting the combination of these techniques, we managed to first approach the simplest medical procedures , and then to integrate increasingly complex instruments and methods.At the same time, the project explored the use of wearable sensors to assess subjects’ physiological response before and after the dental procedure by applying commercial devices and analyzing, ex-post, the modification of the Autonomic Nervous System activity via signal processing related to electrocardiogram (ECG) and Galvanic Skin Response (GSR), two significant, well-known physiological indicators of psychological stress, which will be better defined in The total sample included 59 subjects  aged between 4 and 16 years  who were sequentially recruited at the Department of Pediatric Odontoiatry of Santa Chiara Hospital in Pisa during the period January 2019–October 2020. Inclusion criteria were a diagnosis of autism spectrum disorder (ASD) according to DSM-5 criteria [The study was approved by the local Ethics Committee  and was in accordance both with the ethical standards of the 1964 Declaration of Helsinki and the Italian Association of Psychology (AIP). The protocol for data acquisition with wearable sensors was approved by the Institutional Ethical Clearance board of CNR.MyDentist was developed as a multidisciplinary experimental approach to dental care and prevention for subjects with ASD, combining ICT, behavioral techniques and a specific clinical protocol designed for ASD. The protocol definition came from the combination of a special dentistry foundation, knowledge and previous experience on assistive technologies for people with ASD, and the crucial support from psychologists and speech therapists offering expert advice in the field of diagnosis of and intervention in ASD. The choice of a multidisciplinary approach derived from previous studies in the literature ,29 and fThe concepts on which MyDentist has been developed are the following: (i) the high frequency of use of general anesthesia; (ii) the difficulty to face a lack of collaboration when working with ASD patients; (iii) manifestations of anxiety in reaction to the context of the visit; (iv) the need to keep consistency between home oral hygiene and oral care at the clinic. Luckily, some recent experiences in this field have led to the development of new forms of intervention, constantly evolving and mainly focused on psychological approaches where dentists explore the use of different communication channels to enhance collaboration and interaction with children  ,32.For all these reasons, MyDentist builds on this preliminary literature to explore new forms of patient interaction with the clinical environment and with the medical staff. We propose digital activities to reduce anxiety during the visit, to teach medical procedures and familiarize the patient with the environment. Accessible training is delivered through multimodal activities and games based on AAC, exploiting the visual channel, usually the most effective sense in people with ASD . ICT canA key feature of the MyDentist approach is the complete personalization of the medical protocol in order to adapt it to the particular needs of each ASD patient, to favor a relationship of trust between the patient and the health professional, and to positively exploit the digital activities.Several studies underline the positive effect of daily use of ICT tools with people with ASD, in both learning contexts and social situations ,39,40,41The use of ICT to facilitate dental care delivered to patients with ASD is a relatively unexplored field. Isong et al.  and BarrDigital Copybook mode : during visits to collect photos and videos (selfies and not) that the child can review and show to family members once at home;Mirror mode: during the visits used in camera-selfie mode to allow the child to see himself during dental practices;Distractor mode: during the visit to distract or to relax with favorite videos/pictures;Reinforcement mode: at the end of the session to perform entertainment and play activities that work both as reinforcement and as consolidation of the activities carried out during the visit;Familiarization/learning mode: at home to recall previous visits, to prepare for the next one and to perform digital activities assigned by the dentist .MyDentist delivers a large amount of digital material personalized for each patient: social stories and video models describing all the procedures, the behaviors at the dental clinic and the correct dental care at home, videos and photos taken during dental sessions, and serious games. Managing all this material is very complex and error prone, so MyDentist supports data management with a web application, accessible from any browser on both PCs and tablets. The application helps dentists to build personalized virtual paths following the intervention protocol of a single patient and to provide each patient with all the material needed to boost self-confidence, for instance the photos taken during previous sessions, homework to prepare for the next session and other relaxing and motivating material. The app can be used in many different ways:Dentist Area: where the dentist creates the personalized profile of each patient, in order to schedule a visit, build a personalized clinical path, collect multimedia materials of visits, create personalized clinical programs by customizing games, share resources and assign home tasks.Patient Area: where each patient can access his/her personalized path. This includes games showing dental procedures in an amusing way ; video models for dental procedures (for instance showing how to use a toothbrush), interactive PDF files to get used to dental clinic sounds, social stories that introduce the dental environment, procedures and/or objects and photos/videos collected during visits.The Web Application  consistsIn MyDentist each child follows a personalized path, which starts with one or more familiarization sessions, which goal is to make the child used to the people and the environment. After that, we applied one of three dental procedures. First, prophylaxis with either manual or ultrasonic instruments, which can be challenging for patients with ASD due to the sound of ultrasonic scalers, or noxious tasting prophylaxis paste with manual instruments. Second, fissure and pit sealing, which requires a degree of cooperation, are usually difficult for ASD people. This procedure, despite being a completely atraumatic and not painful, cannot be interrupted, and the patient must always keep their mouth open from beginning to end. In addition, the various materials used have a pronounced taste that may not be easily tolerated.Third, dental treatment of deciduous and permanent elements is carried out using rotating instruments such as a dental drill and a micromotor. The use of instruments with diamond burrs is reserved for ASD patients with high collaboration skills, since these instruments could damage oral tissues in case of abrupt movements by the patient. In addition, these procedures are often preceded by injection of local anesthesia to cancel painful stimuli. Finally, restoration must be carried out using adhesive materials that require a dry oral setting and therefore a maximum control of salivation.All patients shared a basic path: a preliminary interview with parents, a first visit, some familiarization sessions via a psychological approach, and some operative sessions. A global vision of the MyDentist intervention, common to all the patients, is shown in The interview with the parents takes place in the absence of the patient in order to collect as much information as possible about the child. During the interview, the patient’s medical records are filled in with medical, family, and dental history data, which are essential in order to obtain the most complete patient profile. Eating habits  including the use of sweetened drinks or soft drinks, are also noted. Moreover, oral hygiene habits at home are recorded: type of toothbrush and toothpaste, whether the patient is able to rinse, how many times a day the child brushes his/her teeth, whether alone or with the help of an adult, whether other aids are used . We also record information about the neuropsychiatric assessment of the child: the diagnosis of ASD  and the characteristics of the patient’s communication , understanding, use of non-verbal language , presence of hyper-sensitivity. Next, we evaluate the potential use of images as communication support , the use of ICT supports, the positive stimuli  that can be used, and sports or hobbies if any. Finally, we collect information related to the child’s present and past therapies .The interview allows us to collect information about how to plan interventions and helps us to better identify the objectives to pursue, which must be tailored to fit the patient’s needs. Finally, we explain to the parents what to do with their children ; we also instruct the parents on the correct habits to maintain for good oral health.The first visit helped the dentist to get to know each child and to test its reactions to simple requests such as to sit down on the dental chair or to open his/her mouth. During the visit, thanks to the parents’ cooperation, we offered a kit of digital tools to the child to help him/her become familiar with the dentist and the clinical environment, before carrying out the medical intervention. The dentist (helped by the ICT mediator) personalized the kit’s components in all the intervention phases depending on the child’s needs. According to the indications of the parents and therapists, each visit (the first and the other ones) includes the possibility of familiarization at home with the dental activities to be performed in the following sessions through the use of ICT tools such as video modeling, social stories and cognitive learning games , also referring to photos and videos from previous sessions, with the aim of keeping anxiety under control.In order to facilitate the collaboration of the child during the visits we exploit the use of technological devices such as the tablet (as detailed below) as well the use of playful-communicative supports such as costumes and disguises  and thematic songs .All the procedures, from the waiting room to the final greetings to the team, are carried out by having the child participate and making him/her aware of what the dentist is doing. This is done by communicating the steps of the operative phase. Usually, we adopted multiple strategies based on the child’s skills: (a) supporting the verbal instructions with visual cues; (b) Augmentative and Alternative Communication (AAC) and video-modeling.It is also particularly important to use positive reinforcement after reaching a specific objective and at the end of each session.In the case of a familiarization visit (first visit or other visits if needed) the activities are more flexible but aim to keep to basic objectives such as sitting, collaborating, opening one’s mouth, etc. Conversely, in the case of an operative session, such as the treatment of cavities or sealing molars, actions are more focused on small measures that increase attention and reduce distractors.Whatever the type of visit, the MyDentist approach is based on reshaping the objectives of the session according to the collaboration shown by the patient, even during the visit itself, calibrating compliance with the needs expressed (directly or indirectly) by the child, with the aim of pushing the patient beyond his/her limits. The tablet is considered an integral part of the interaction with the patient but is also an advantage for the staff when collecting material for social stories, cognitive learning games, audio, and video archives.Only when goals or sub-goals (at least one for each session) are considered achieved, the planned protocol moves to the reinforcement/play phase. Taking care to separate clearly these two stages, especially in the patient’s perception, this final phase is devoted to reward the child with a prize such as listening to his/her favorite songs or watching his/her preferred video, playing or drawing with the tablet. Leveraging on the habits of the patient, this moment represents a particularly important ritual for the success of the visit, facilitating the maintenance of concentration even in the most operational sessions.The research team developed the questionnaires to use in this study. Both questionnaires were pre/pilot tested on a subset of 10 parents. Two experts examined the questionnaires for face and content validation. One of the experts has 15 years of experience in the field of Autism Spectrum Disorder. Both experts have a master’s degree in psychology and one of them has a PhD in Developmental Neurosciences. They have been involved in several national and European research projects. For face validity, the experts were asked if all questions were clearly worded and would not be misinterpreted. For content validity, the experts evaluated the relevance of the questions using a scale of 1 to 3, where 1 = not relevant, 2 = relevant but not necessary, and 3 = absolutely necessary. The experts were also asked if other questions should be added to the questions. The remarks of the two experts were collected and discussed and were used to revise the questionnaires. The experts examined the revised questionnaire and declared agreement with its content and clarity.Parents anonymously completed two questionnaires in order to describe their personal experience with MyDentist. Questionnaire A was aimed at evaluating the approach of children to the dental experience. It was filled out two times, at T0 and after 6 months, T1. It is an 18-item parent-report measure designed to record the behaviors of subjects. Each item describes a specific behavior and the parent is asked to rate its frequency on a four-point Likert scale .After 6 months of the MyDentist experience, a second questionnaire (Questionnaire B) was sent to the parents of children who participated in the MyDentist project. The questionnaire included 16 items with a positive or negative orientation toward the multi-media support. The questions regarded the evaluation of tablet use and the improvement (if present) in the child’s skills. The parents had to answer through a Likert scale from 0 to 3 .As mentioned in the previous sections, aside from observing a positive effect of the MyDentist approach as indicated by the results of the questionnaires, we would like to answer the following question: Is it possible to have an “objective” measure that provides an indicator of the effect of MyDentist on stress?To answer such questions, our idea is to assess the response of the Autonomic Nervous System (ANS) using wearable devices. The ANS measurement is a useful instrument for evaluating the subject’s stress and emotional state in ASD. Indeed, when perceiving a stressor, self-regulating processes start by automatically activating the ANS, its sympathetic component ,44. The Therefore, in order to be able to objectively evaluate the influence of the practice proposed with the MyDentist approach in modulating the anxiety state of subjects with ASD who undergo dental treatment, we intend to use non-invasive devices for recording ANS activity. Specifically, the idea is to assess the ANS activity before and after each dental session and to longitudinally monitor each child for an observation period of approximately 4–6 months. With this strategy, it would be possible to observe whether the dental session-associated stress is reduced as time passes thanks to the MyDentist application.To assess the feasibility of applying such approach, we evaluated the ANS activity using wearable devices before and after the first dental session with MyDentist, with one child participating in the study (5-year-old child with ASD level 2 according to DSM-V criteria and an IQ in the “mild” range).The child was equipped with two wearable sensors, the first of which for monitoring an electrocardiogram (ECG) and the other one devoted to galvanic skin response (GSR). The ECG signal was acquired through the Shimmer ECG sensor, v.2  attached to a fitness-like chest strap manufactured by Polar Electro Oy , in turn interfaced with the human body through two dry electrodes. The sampling frequency was set to 500 Hz. The GSR signal was captured by the Shimmer3 GSR+ sensor (Shimmer) by adhering to two neighboring fingers of the subject’s non-dominant hand via comfortable rings embedding dry electrodes, with optimal comfort for the subject tested. As for the GSR, the sampling frequency was selected from among the ones available from the sensor firmware, set to 51.2 Hz. The signals were acquired while the subject was seated comfortably on a chair at a table in a quiet room for 5 min both before and after the session.Heart rate (HR): the number of contractions of the heart occurring per time unit, expressed in bpm;Root mean square of successive differences (RMSSD): measure of heart rate variability (HRV), specifically related to parasympathetic activity, expressed in ms;Normalized component of the power spectral density of the ECG signal at low frequency (0.04–0.15 Hz) (nLF); it is related both to the sympathetic and parasympathetic response;Normalized component of the power spectral density of the ECG spectrum at high frequency (0.15–0.4 Hz) (nHF); it is mainly related to the parasympathetic response;Low- vs. high-frequency components of the power spectral density of the ECG spectrum (LF/HF Ratio): under controlled conditions, it expresses the balance between the sympathetic and parasympathetic nervous system branches .The acquired physiological signals were processed using Matlab . The ECG signal was analyzed for the calculation of the tachogram , taking advantage of the Pan-Tompkins algorithm  and to eGSR signal was analyzed using Ledalab V3.4.9 , Graz, Austria), a Matlab-based tool. The signal was first filtered by a moving average filter (n = 8) for artifact removal, followed by a continuous decomposition analysis (CDA) via the dedicated Ledalab function, leading to the extraction of tonic  components. Indeed, just the tonic phase of the GSR signal was extracted and analyzed, since the main goal of the analysis was related to the assessment of slow changes in the autonomic activity rather than to the response of a single, time-defined stimulation that would have affected the phasic component of the GSR, as well .Given the exploratory nature of the present study, there was no assumption of the sample size. Categorical data were summarized into frequency counts, percentages, and contingency tables, which were analyzed using chi-square analysis for both questionnaires. Analyses were carried out using SPSS version 21.0 for Windows .Significant results were shown from T0 (before initiating MyDentist) to T1 (after 6 months of MD experience) in 14 of the 18 questions to which the parent had replied .Families have positively assessed the use of multi-media support in MyDentist. Parents acknowledged that the multi-media supports were appropriately customized, facilitated a good compliance of the child with the dental setting and reduced the child’s stress during the dental examination. According to parents’ answers, the use of multi-media supports made children more familiar with dental hygiene, more adapted to and cooperative with the dental setting. Moreover, sensory issues and problematic behaviors appeared more manageable for the children. The multi-media supports helped children in translating acquired skills also out of the dental clinic and in learning the autonomous use of tools for dental hygiene. Parents evaluated the MyDentist project as useful, considered the advice received during the MyDentist experience to be applicable at home and recommended MyDentist to other parents of children with ASD. For only 1/3 of parents the multi-media support was considered hyper-stimulating .Concerning the assessment through wearable sensors, in https://iite.unesco.org). Repetitive and predictable answers could help these patients control anxiety and accept new medical practices. Thus, to increase positive results, personalization becomes crucial for making the surrounding environment comfortable and user-friendly.Children with ASD have poor oral health and they present high care demands, which requires much time, effort, and patience ,51. FindOur findings also underlined the importance of ICT as an important tool for teaching children with ASD better cooperative behaviors aiding them in the familiarization process with rules and techniques of appropriate oral hygiene. It is well-recognized that children with ASD experience challenges with communication which can negatively interfere with professional oral care . HoweverIn addition, the preliminary investigation in a single subject regarding the use of wearable sensors to assess autonomic nervous system response suggested the feasibility of using this approach to evaluate the child’s physiological response, thus confirming our previous studies ,42,43. TProfessionals are trained in how to treat people with ASD. As mentioned in the Introduction, to increase the probability of successful dental treatment for patients with ASD, dentists should have an in-depth interdisciplinary understanding of ASD in terms of symptomatology and functional profiles, but unfortunately the professional training offered by most university programs does not deal specifically with people with ASD.Professionals are also trained to use the MyDentist application, which helps to set up a personalized use of the ICT toolsIn the first period of the intervention, an additional person acting as an ICT-mediator for both professionals and patients/caregivers joined the dental clinic staff.In order to evaluate the cost for a generalization in other settings, we need to highlight that the MyDentist intervention differs from the regular dental care intervention for people with ASD in these aspects:Cost for the design and development of the MyDentist application;Cost of the cloud-storage service;Cost of a tablet for the dental clinic;A 2-year employment contract for an ICT mediator.Indeed, the cost of the MyDentist intervention can be estimated in:Considering our experience, the professionals were already trained in how to interact with people with ASD and how to use the MyDentist application, since they participated in its design. Patients at home used their own mobile devices.-Training regarding people with ASD and the most appropriate way to interact with them;-Training to use the MyDentist application: to this aim, we are finalizing all the documentation such as user manual, tutorials and demo, which will be freely available.For professionals:-A 6- or 12-month employment contract for an ICT mediator.For the clinic:The estimated cost for replicating the MyDentist intervention in other settings should consider:The MyDentist application will be available for free, at no cost.Regarding the training of dental staff, it depends on several factors such as the type of course, the duration and the organization that provides the course. However, in order to indicate in more detail what the cost may be, we believe it may be sufficient a brief training course with an ASD expert . Furthermore, dental staff will also need an additional day for autonomously training on the MyDentist application reading the documentation and trying the app.The ICT mediator is a person with skills on the use of digital tools in order to support the work of the dental staff showing how and when to use the application and the tablet. This does not require a very high technical ICT skills so a graduate person may be sufficient. However, the ICT mediator must also have ASD training, together with the dental staff, in order to know how to approach and interact with people with ASD.In some cases, the treatment path may be longer than estimated, but there are benefits for both the patient, who could be treated while safely avoiding sedation for minor interventions, and presumably for the health system, due to the increase in successful interventions and the decrease in missed appointments or incomplete treatments caused by a lack of patient collaboration (increasing efficiency and reducing unnecessary costs).In this preliminary study, some limitations must be acknowledged. The most relevant is undoubtedly the constrained dataset that strongly limits wide-ranging conclusions. In order to overcome the limits of our study, future investigations should consider: (1) a more systematic data about functional profiles of each experimental participant  the inclusion of a control group with ASD  with a randomized assignment to conditions or, possibly, the adoption of a crossover strategy over the entire population of volunteers; (3) to collect pre- and post-intervention data on parents stress’ degree; (4) the lack of a protocol or decision-making tree for the use of the MyDentist intervention.Finally, a limit of our study was the evaluation of the autonomic nervous system response in only one child for a single session.Thus, further research is needed to confirm our interesting preliminary (and descriptive) data to determine the effectiveness of the intervention. Moreover, in an upcoming study the enrollment of a larger number of subjects will be important in order to create subgroups of more homogeneous samples in terms of age range, IQ range and oral hygiene issues.Given the overall encouraging results achieved by the exploratory study presented herein, we expect to extend the recording of physiological parameters to the visit phase, at least in a subgroup of individuals who might be more compliant with being equipped with wearables sensors, even during the visit, by the dentist. Such individuals, selected from among the subjects with high-functioning ASD, will compose the cohort for this further evaluation, and will be followed in the next study. This would enable comparing the compliance and the psychophysiological response, and therefore the overall benefit brought by the MyDentist App, with respect to the previous literature dealing with dental research, stress and ASD ,55,56,57Networking between families, caregivers and health providers should be activated with the aim of making everyone aware of the dental health problems that children with autism have to face ,58,59.It is essential to combine the efforts and professionalism of all the figures involved in helping a child with autism in order to draw up ad hoc guidelines for dental health in children with ASD.In conclusion, these preliminary findings regarding the MyDentist project have shown the feasibility of dental care in children with ASD. Furthermore, the project showed the parents’ acceptance of the MyDentist project and the feasibility of dental care in a public service without additional costs for families. In the first phase of the dental care program, an additional cost is required for dental clinics facilities to teach clinicians how to implement the intervention with persons with ASD, and to proficiently learn how to exploit the MyDentist program specificities. Moreover, an ICT mediator could be essential to provide the necessary technological support. However, also considering these constraints, we believe that the cost effectiveness is largely in favor of the intervention. Potential benefits for these special-needs patients are extremely important both in term of health  and in terms of general wellbeing.


The rapid increase of the aging population is pushing many national governments to reshape retirement legislation in order to extend older adults’ working life. Once retired, older adults can be invaluable resources for the community as family carers, as volunteers, or by returning to work. Healthy aging is one of the main conditions for being able to work longer and being active after retirement. The latter, indeed, represents a very sensitive life transition, which can entail psychological and social difficulties. Interventions for promoting older workers’ health and well-being and supporting the transition to retirement are on the top of the policy agenda of most European countries. Recently, computer-based and digital health interventions have been seen as promising means to reach this purpose.This systematic literature review aimed to explore studies on digital health coaching programs for older workers that followed a user-centered design approach and evaluated their effectiveness in providing older adults with guidance for adopting a healthy lifestyle and being active in the community.The search identified 1931 papers, and 2 relevant articles were selected by applying specific eligibility criteria.To our knowledge, only few digital health coaching programs have targeted the population of older workers to date; there is an insufficient number of studies on the efficacy of such programs. The results show the difficulties of assessing the efficacy of digital coaching itself and with respect to older employees. The 2 studies suggest that digital health programs for workplaces can improve various aspects of older employees’ well-being; however, they considered health mainly from a physical perspective and neglected contextual, social, psychological, and cultural factors that can influence older workers’ health and general well-being. Future digital health coaching programs should adopt the healthy aging paradigm as a multidimensional lens for interpreting the impact of eHealth technology on aging and retirement. The literature around this issue remains at an embryonic state, and this gap needs to be filled by further investigations that apply a user-centered approach for designing the technology, test innovative research methodologies, and adopt new technical solutions for high-quality interaction design.Further digital health coaching programs aimed at supporting healthy and active living for older workers and retirees are necessary. The user-centered design approach is recommended in order to fully address the users’ health needs and the technological requirements throughout development. Moreover, the healthy aging perspective allows inclusion of physical, social, and psychological factors influencing the transition from work to retirement, as well as the experiences and interactions of individuals with the technology. The population is aging rapidly worldwide and by 2050, or soon thereafter, the number of persons aged 65 or older will outnumber those aged 25 or under in eastern and southeastern Asia, Latin America and the Caribbean, Europe, and North America , therebyThe aging and retiring workforce can result in a loss of know-how and expertise for companies, which may negatively affect the economy and the sustainability of social security systems .successful aging [In order to mitigate the consequences of an aging workforce, in the last decade, many national governments of high-income countries have been changing retirement legislation to postpone the retirement age and extend older adults’ working life . Continuul aging , a topicul aging ,9. This ul aging .Since people can be active and productive when they are in good health, it seems that a precondition of successful aging is healthy aging. The latter is not just the absence of illness, but also a “process of optimizing opportunities for physical, social and mental health to enable older people to take an active part in society without discrimination and to enjoy an independent and good quality of life .” TherefIn the months before retiring, the individuals’ attitudes and expectations about retirement can also be influenced by cultural patterns : in counOnce retired, older people can feel different levels of satisfaction with life, not directly associated with fulfilment of the plans and the expectations they had while working. However, satisfaction seems to be the result of the combination of multiple factors  . TherefoOlder employees’ decision to leave work, as well as attitudes, expectations and plans for retirement, are mainly influenced by their health. In fact, the onset of chronic diseases and comorbidities are the first reasons for early retirement and are major barriers for older workers' active participation in the labor market. Indeed, according to the Survey of Health, Ageing and Retirement, in Europe, among people aged 60 to 70 years, those in good health participated in the labor market approximately twice as often as older people with 2 or more chronic diseases .In light of the above, carrying out health promotion and prevention interventions targeting older workers is a prime objective of labor policy for keeping employees active and productive longer . MoreoveOne strategy to help individuals having healthier lifestyles  is offering them health and lifestyle coaching through interpersonal relationship with a trainer . This cacoaching, we usually discover studies that describe interventions delivered without a human coach but through different technologies used to drive the behavior change process. According to Sherpa Coaching Survey [Since the advancement of technology has had an impressive influence on our daily living, recently coaching programs for the promotion of health have been getting increasingly more computer-based; digital health interventions are a promising approach to address older workers’ health needs . Effectig Survey , for insg Survey . User-ceg Survey . This mag Survey . This paThis systematic literature review aimed to identify and synthesize published literature focusing on the efficacy of digital health coaching interventions specifically designed for older workers in transition to retirement (or those who just retired) and that used the user-centered design approach. To this purpose, the literature search aimed to answer the following research questions: (1) Which digital coaching interventions are effective or not effective for older employees in transition to retirement or just retired? (2) To what extent are the digital coaching interventions effective for improving the well-being of older employees in transition to retirement (or just retired)? (3) To what extent can this kind of intervention help to prevent poor health?Study inclusion criteria were (1) targeting workers aged 50 or older according to the definition of older workers  and expaolder adult workers, older adults in retirement, transition workers in retirement, older employees, employees in retirement, digital coach*, virtual coach*, well-being, user-centered design, virtual agent, avatar, virtual personal assistant. AND operator, restricting the results to articles that contained all the search terms [For the literature search, the following databases were used: PubMed, Web of Science, Scopus, and IEEE. The search strategy was conducted without time limitations. Additional articles were obtained from reference lists of included studies and from Google Scholar. Databases were searched using a combination of specific terms that, in the opinion of the authors, were closely related to the topic, such as ch terms ,35.According to the predefined criteria, all searches were conducted during April 2019 and May 2019 and then screened independently by the first and the last author. This screening phase was based on analysis of the title and abstract. In August 2019, full-papers of the screened publications were reviewed independently by the first and the last author. Any disagreement was resolved by including the second author in order to reach consensus for all the articles included.The Mixed Method Appraisal Tool , developed by Hong et al , was useThe search identified 3265 papers, and after duplicates were removed, there were 1341 articles for the initial screening. In accordance with Eden et al , the autThe specifications and the main findings of the 2 studies matching the inclusion criteria, and thus included in the review, are reported and described in After calculating the score for each article , we syntThe selected articles reached a high quality score (100%) as shown in The included studies were both digital interventions developed by a multidisciplinary team that focused on a significant user-centered design approach. HealthyPast50 by Cook et al  was a muActive After 55 by Irvine et al  was an iThe effectiveness of these studies was assessed through a randomized controlled trial and with online surveys in different phases of the assessment. The HealthyPast50 study was based on multiple outcome measures before and 3 months after the actual intervention in a sample of 278 older employees aged 50 to 68 years. The users were split randomly into a program group able to log-in to the system and a control group that did not access it. The whole sample was characterized by a high educational level and relatively high computer literacy. The program group could access the web-based program at any time during the 3-month test period at work and outside of work.The Active After 55 study was based on 3 assessments: pretest, postintervention (12 weeks after pretest), and a 6-month follow-up, with a sample of 368 sedentary adults over 55 years of age. Authors reported that participants tended to be employed, educated, and frequent computer users with at least a middle-class income. Participants were automatically randomized into a treatment group that used the digital health program or a control group that did not have access to it. The intervention consisted in an initial 1-hour session with the Active After 55 program to obtain assistance in designing a personalized plan to follow and then 11 weekly sessions lasting at least 15 minutes in addition to weekly exercises. Both studies used an online survey to gather data in the different assessment phases.In both randomized controlled trials, the intervention group showed significant improvement in healthy behaviors compared that shown by the control group.In the case of HealthyPast50, the working adults who used the web-based program manifested relevant enhancements over the 3-month test period on 3 out of 15 outcomes: diet behavior change, self-efficacy, and planning of healthy eating. Working adults who were given access to the web-based HealthyPast50 program showed significantly greater improvement on key health constructs over the 3-month test period compared to that shown by the individuals in the control group. In the analysis of the imputed data set, the intervention group performed significantly better than the control group on diet behavior change, self-efficacy, planning healthy eating, and mild exercises. Moreover, there were improvements in eating practices, moderate exercise, and overall exercise but these did not meet the threshold for statistical significance. As for the Active After 55 program, the hypotheses were that the intervention would be linked to changes in the exercise domains of endurance, stretching, strengthening, and balance and that it would be linked to theoretically relevant mediators of behavior change. The treatment group showed significant improvement on 13 out of 14 outcomes at posttest and on all 14 outcomes at the follow-up. The findings were consistent across an array of measures, with a large multivariate effect size at posttest and a medium multivariate effect size at the 6-month follow-up.This systematic literature review was aimed at exploring the state of the art of research in the field of digital health programs sustaining the well-being of older workers in transition to retirement (or just retired) and using a user-centered design approach. Despite the wide-reaching search and review, only 2 published papers met the inclusion criteria. We provided a qualitative methodological appraisal of the 2 selected articles by means of the MMAT. Every year, a growing number of information and communication technologies emerges with the aim to provide innovative and efficient ways to help older adults in their daily life and to reduce the cost of health care. Nevertheless, there is still a paucity of studies testing the efficacy of such technologies, both for older adults in general and for older workers in transition to retirement. Hence, there is a need for more research in this field. The 2 studies included in the review strengthen the idea that multimedia web-based and internet-enabled CD-ROM programs can be effective in promoting healthy life style behaviors and in preventing poor health condition among older workers near retirement.The findings of this systematic literature review suggest that digital health programs may help older workers to improve their health and well-being by motivating them to engage in healthy behaviors . Cook et al  and IrviA major advantage of eHealth interventions is that such interventions are easily accessible 24/7 and are usable by individuals who may not have access to traditional health promotion otherwise. When these interventions are developed around the real needs, capabilities, and limitations of older workers and tested with rigorous research methodology, the technology-based interventions demonstrate the added value of innovation in coping with healthy aging.This idea and the review of the 2 papers inspired some suggestions for further investigation: they should use a user-centered approach for designing the technology; test innovative research methodologies; and adopt new technical solutions for high-quality interaction design.First, digital innovation technologies can be a promising way to cope with the health and well-being deteriorations of older adults in transition from work to retirement, especially when they are designed, developed, and assessed through a user-centered approach. In fact, similar to the approach for health programs that are conducted by a person, it is preferable to adopt a patient-centered approach. Likewise, in health digital programs, it is advisable to involve patients in planning the program and designing the technology, in order to intercept their health needs and translate them into the technology requirements. This might allow patients to set health goals and program phases together with the digital coach just as they would with a human coach, thus increasing adherence to the healthy path . ConversThis observation leads us to the second key point to take into consideration for future studies . In fact, despite increasing research on the impact of technology on older people's health and well-being, most studies on this issue used small samples which neither allowed for randomized controlled trials nor generalization and transferability to other domains. Moreover, a 3-arm randomized controlled trial  could offer a real framework for future research in this field. Moreover, studies comparing virtual coaching programs to web-based programs are necessary to assess which approach is more effective and which has a higher level of acceptability by older employees.The third key point concerns the use of a variety of technical solutions to deliver digital coaching programs addressing older adults. Different workplace interventions have been developed to improve workers’ health and well-being using web-based interventions  and mobiThe fourth consideration arising from this systematic literature review concerns the role of positive user experience, measuring people’s feelings on interacting technology in a particular context ,45. It iAND operator. The selection of the terms with the Boolean operator are the results of the authors’ knowledge, which is not exhaustive. Furthermore, the narrow eligibility criteria, requiring a focus on older adults in retirement, reduced the number of studies selected.The search was performed on 4 databases  accessed during a specific period of time (April 2019 and May 2019); in order to be more inclusive, we added references selected from Google Scholar. Given this procedure, our search could be not exhaustive and, unknowingly and unintentionally, some papers may have been omitted. Another limitation could be the keywords used for search and their combination with the Boolean To our best knowledge, no other reviews of digital programs are reported in the literature nor are there any on digital programs based on virtual coaching techniques targeting older workers near retirement. We could, therefore, only compare the 2 studies reviewed with literature that would be desirable for increasing knowledge in this field.First, the reviewed studies were aimed at promoting healthy behaviors, limiting the onset of chronic diseases, and limiting the health-related costs for companies, thereby improving older worker productivity. The technologies tested by these studies were aimed at affecting the individuals’ behaviors toward physical activity, stress management, diet, and tobacco use. Future digital programs addressing older workers who are close to retirement should instead take into account not only physical health aspects related to aging itself but also psychological and social aspects that can be influenced by the transition from work to retirement. This goal could be reached by encouraging older workers to adopt strategies to counteract the side effects of retirement, such as the loss of social contacts, a sedentary lifestyle, and a decrease in intellectual stimuli. These strategies might lead older individuals onto a path of awareness of the existential change they are experiencing; to adopt a different planning of the day in order to avoid feelings of usefulness; to have attitudes more oriented to the community for the construction of bonds and friendships replacing those lost when they left work . Furthermore, in order to ensure a social dimension in the training, several individuals might share the same digital health coach. The latter might promote interpersonal relationships by helping individuals meet in person for a walk or for a social event, thereby bridging the gap between virtual and real dimensions.Alone, the recent retirement policies that have postponed retirement age cannot cope with the growing number of workers who ask to retire early due to age-related chronic diseases and multimorbidity. Moreover, workers close to retirement may need to be supported to better face this existential change.Several studies demonstrated that technology can be very effective in promoting healthy lifestyles among older workers ,29,39, bThe results of this systematic literature review demonstrate the difficulties of assessing the efficacy of digital coaching in itself and for older employees. While the 2 papers ,39 sugge


Breast cancer is the most frequent form of cancer among women and is one of the leading causes of death. Two routes of the metastatic process have been described: linear and parallel progression. A key factor is represented by circulating tumor cells (CTCs). CTCs detach from the primary tumor or develop from cancer stem cells (CSCs) that undergo epithelial-to-mesenchymal transition (EMT). CTCs migrate to the distant site where the reverse process occurs and a new tumor arises. One of the key problems of metastatic disease is chemoresistance, which leads to treatment failure and, eventually, death. The aim of this review is to present up-to-date data regarding the role of CTCs in chemoresistance in metastatic breast cancer (MBC) patients. A search in Cochrane Library and MEDLINE databases was performed. A total of 125 articles were identified. The results of the final 12 eligible studies revealed that CTCs having stem cell features and those with mesenchymal features are aggressive subtypes of cells that survive chemotherapy, being responsible for chemoresistance and thus for disease progression in MBC patients. The hemodynamic shear stress, alongside dynamic changes among CTCs during the disease, is also an important disease progression factor. Breast cancer is the most frequent form of cancer among women. It was responsible for 13.3% of all cancer cases in Europe in 2020, and it is one of the leading causes of death, representing 7.3% of all cancer deaths . Th. Th31]. Chemoresistance mechanisms are complicated and not yet fully understood. There is a pressing need to understand the mechanisms involved in chemoresistance and to find new methods to overcome them. Better strategies for choosing the most appropriate treatment are needed .Whether CTCs can be used as a tool to assess treatment response in breast cancer is a widely debated issue. Yan et al.  addresseCirculating tumor cells with stem cell features are an aggressive subtype responsible for chemoresistance and, thus, for disease progression in MBC patients. The aggressive behavior of CTCs is also gained by epithelial-to-mesenchymal transition, a process in which CTCs acquire partial EMT or mesenchymal features and are able to progress and invade.PIK3CA and ER genes, a more efficient DNA repair process, cluster formation, and an increase in Her2 expression. CTCs acquiring Her2 expression are more resistant to chemotherapy and are involved in disease progression.CTCs dynamically change during chemotherapy, and this is one of the mechanisms involved in chemotherapy resistance. Some of the changes include accumulation of mutations in In order to overcome CTC chemoresistance mechanisms, some solutions have been proposed. One of them is the use of cultured cells in order to examine CTC cluster development. If CTC clusters are present, a longer course of therapy could be needed as CTC clusters decrease with the length of systemic therapy.There are cases in which primary tumor cells are Her2-negative, but along the course of chemotherapy an increase in Her2 expression of the CTCs is noticed, suggesting that Her2 expression could become a potential therapeutic target during the course of therapy.Another difference between PTCs and CTCs is the DNA repair process. Even though chemotherapy-induced DNA damage is similar in PTCs and CTCs, the DNA repair process is more efficient in CTCs than in PTCs. In order to overcome this, administration of checkpoint inhibitors before chemotherapy has been proposed, as an increase in the number of apoptotic CTCs after their administration was noticed.For the purpose of dividing MBC patients into groups according to the risk of disease progression, a multidrug resistance profile can be determined based on the expression of stemness markers and MRP expression. This is potentially beneficial when choosing chemotherapy agents on a susceptibility bases.To summarize, the persistence of CTCs after chemotherapy is a negative prognostic marker associated with chemoresistance and disease progression. CTC monitoring, both in neoadjuvant and adjuvant settings, can help with choosing the best therapeutic strategy. Not only the number of CTCs but also their characteristics are important in monitoring the response to therapy, as some of their features, such as Her2 expression and stem cell and mesenchymal features, are associated with aggressive behavior and, therefore, with chemoresistance. There have been numerous attempts to overcome the complex mechanisms of chemoresistance.Many studies in this review exposed some of the mechanisms implicated in chemoresistance and disease progression, but future studies are needed not only to fully characterize these mechanisms, but also to simplify the overall framework in order to implement effective treatments in clinical practice.


Seasonal malaria chemoprevention (SMC) relies on community health workers to distribute drugs. This study assessed: (1) the capacity of community-based distributors (CBDs) at the start and end of a campaign and from one campaign to another after training or refresher courses before each round; (2) to what extent CBDs’ experience over several campaigns contributed to measurable increase in their capacities; and (3) to what extent the training and experience of committed CBDs helped the less productive to catch up.A longitudinal analysis was conducted in one Burkina Faso health district during the 2017 and 2018 campaigns. A panel including all CBDs was created. Their capacities were observed after: (1) initial training for the 2017 season; (2) refresher training for that year’s fourth round; and (3) initial training for the 2018 season. All were invited to complete a questionnaire at the end of training with 27 multiple-choice questions on their main tasks. Observers noted content coverage and conditions under which training sessions were conducted.The 612 CBDs showed, on average, high understanding of their tasks from the start of the annual campaigns. Tasks related to communicating with parents and reporting were best mastered. Their capacities grew from round to round and campaign to campaign, after most had undergone training and been supervised by head nurses. The greatest progress was in the technical components, considered more complex, which involved selecting eligible children, choosing the correct drug packet, and referring children to health professionals. Retaining CBDs from one round to the next benefited everyone, whatever their starting level. Groups that initially obtained the lowest scores  progressed the most.These results confirm the potential of using CBDs under routine programme implementation. Mandating CBDs with targeted tasks is a functional model, as they achieve mastery in this context where investments are made in training and supervision. Losing this specificity by extending CBDs’ mandates beyond SMC could have undesirable consequences. The added value of retaining committed CBDs is high. It is suggested that motivation and commitment be considered in recruitment, and that a supportive climate be created to foster retention. Plasmodium falciparum malaria control in highly seasonal transmission areas [As of 2017, 12 Sahelian countries had integrated seasonal malaria chemoprevention (SMC) into their national malaria prevention and control programmes (NMPCP), covering slightly more than half of the 29.3 million eligible children [There is growing evidence that SMC is effective in real-world conditions –5. TheseThis paper explores CBDs’ capacities in Burkina Faso. SMC was initiated in that country in 2014. Each campaign targets children from 3 to 59 months of age, and consists of four monthly rounds (July to October). Delivery is mostly door-to-door. SMC was scaled up rapidly and expanded into the 70 health districts of the country in 2019. More than 40,000  CBDs were hired and trained to cover 3.6 million targeted children.This paper presents the results of a longitudinal analysis conducted in one health district in Burkina Faso during the 2017 and 2018 campaigns. First, the study assessed and compared CBDs’ capacities to perform the tasks assigned to them at the beginning and end of a campaign, between the first and fourth rounds, and then from one campaign to the next, at the time of the first round. The second objective was to assess the increase in CBDs’ capacities and the added value of districts’ efforts to retain them and cultivate their commitment. The hypothesis was that the experience acquired by these CBDs would result in a measurable increase in their capacities over time. A final objective was to verify to what extent the successive training sessions and experience acquired by these committed CBDs helped the less productive to catch up with their peers.The study covered a health district in the country’s central health region. Malaria is meso-endemic and transmission is seasonal; the rainy season lasts 4 to 6 months. A panel was created that included all CBDs in the district. The CBDs’ capacities were observed at three times: (1) in July 2017, after the initial training for the campaign; (2) at the fourth round of the same year, i.e., 3 months later, after the refresher training; and (3) in July 2018, after the annual initial training. The panel was open population-based, including all CBDs in service during one or more of the three observation periods.CBDs were trained all over the country following a cascade model based on WHO . The casFifty surveyors were trained and then distributed among the various health centres on the day of each training. An observation grid for the training process was used to assess, in the first place, the trainers’ coverage of the content to be delivered . A second component of the grid dealt with the conditions in which the training was provided, the interactions between learners and trainers, the dynamism of the trainer, the working environment, and the duration of the session. The grid consisted of 44 items. At each round, two to three observers per site completed the grid and then developed a common grid by consensus.All CBDs were invited to complete a questionnaire at the end of the training. It included 27 multiple-choice questions, each focused on a specific task. They were asked about their gender, age, education, previous experience as a community health worker, and participation in previous campaigns. The questionnaire was administered face-to-face in the local language; each interview lasted approximately 20 min. The questionnaire was tested and revised beforehand.Seven scores were constructed to assess the completeness of the training content. Each score corresponded to a group of tasks defined in the training . Nine intermediate scores and a total score were constructed to assess the CBDs’ capacities in each round. The scores were transposed to a 0–100 scale to facilitate comparisons. All analyses were performed using Stata© 15. Multilevel models adapted to the longitudinal and the hierarchical data structure (each training site being a cluster of CBDs) were used . RegressThe sample consisted of 23 health centres in the first and second rounds; a 24th centre was opened in 2018. No trainer or CBD refused to participate. The number of CBDs varied slightly from one round to another, with head nurses adjusting their staffing based on the CBDs’ workloads and availabilities , SMC explanations , tasks to be performed at each step , and communication with parents . This progression was accompanied by a halving of the duration of the training session . The comparison of the initial training sessions for the two consecutive campaigns showed no difference in the content actually covered. Finally, the conditions under which the training was conducted varied little from one period to another.Observation showed that the intended contents were covered in the training sessions Table . ContentOn average, the CBDs demonstrated a high level of understanding of their tasks Table . All elsOn average, it was in the fourth round that CBDs’ know-how was highest, after the majority had gone through the initial training, been supervised by head nurses in the previous rounds, and attended several refresher courses. The most visible changes from one round to the next had to do with the technical components, considered more complex, which involved explaining the SMC, selecting eligible children, choosing the correct packet of medicine to use (there are two models with different colours depending on the child’s age), and arranging referrals for children with malaria, fever, or complications requiring professional expertise. The CBDs’ average capacities after the initial training for the campaign was higher in the 2018 campaign. However, the gaps noted were slightly smaller than those observed between the beginning and end of the 2017 season. CBDs who had participated in all three rounds of investigation consistently showed higher scores than the others.Analysis of the panel of CBDs who participated in the three rounds was done to assess the individual progress of perseverant CBDs and compensate for the possible attrition of CBDs who were less motivated or available. Estimates of the progression of the CBDs’ overall skills are presented in Table The study revealed, first, that CBDs recruited and trained for SMC showed, on average, a high level of understanding of the tasks they had to perform, right from the start of the annual campaigns. They were most proficient at tasks related to communicating with parents or reporting than tasks related to technical components—selecting eligible children, monitoring children after medicine was taken, or referring children for transfer.These results are nonetheless consistent with another study on community health workers’ performance conducted in Burkina Faso, Nigeria, and Uganda, where 98% of the tasks were mastered by respondents . They arCBDs are a particular kind of community health worker, as they are recruited periodically, for only 4 months, and have very focused and specific tasks. As such, they are able to learn relatively quickly and comprehensively. This situation contrasts sharply with those of the “generalist” community health workers in Burkina Faso, whose very broad responsibilities have expanded steadily over the years, and who have been shown not to contribute effectively to the treatment of malaria in children . Many auSecond, the study seems to us to highlight the considerable advantage of fostering commitment among CBDs and retaining them from one campaign to another. On one hand, CBDs who have participated in several campaigns have a better understanding of their tasks. On the other, the capacities of the same CBD increase significantly over the course of a campaign and from one campaign start to the next. The progress is significant even though the baselines are already quite high and margins for progress are naturally limited. Research suggests that the capacities of community health workers tend to wane rather quickly , 23, 24 Third, the retention of CBDs benefited everyone, whether or not those CBDs were initially productive. It was, however, of greater benefit to those who, because of their limited education, age, or gender, had a poorer initial understanding of their tasks. Women completely closed the gap with their male counterparts, and the gaps were narrowing between uneducated CBDs and those with higher levels of education, as well as between the youngest/oldest and the others. This is the first study to examine such changes among community health workers.studies of workers with lower baseline performance showed greater improvements in prescribing medications…, vaccinating children,… and counseling…” [Many studies have shown that the personal characteristics of community health workers can be associated with their performance , 15, 27,seling…” . As wellseling…” , 15, 27.This study appears to us to present the following strengths. It is based on an independent evaluation of an intervention scaled up by national authorities, and not, as is often the case in studies on community health workers, limited to a small-scale experience in selected populations . The facThe study also has limitations. It was conducted in only one district, and it is plausible that there would be natural variations in performance between districts and regions of the country. Evidence of CBDs’ good grasp of tasks does not necessarily presume their future performance once in the field, even if it is a prerequisite . FurtherThe study provides new knowledge on a recently introduced intervention modality in the health systems of Sahelian countries. In the context of Burkina Faso, it reports on the capacities of the outreach group of community-based distributors, which is its cornerstone. Three lessons emerge from the experience evaluated. First, CBDs master the tasks assigned to them in this context where efforts are regularly invested in training and mentoring community health workers. The model of CBDs mandated for targeted and specific tasks appears to be more functional and appropriate than the ineffective model of generalist community health workers. The loss of this specificity by extending CBDs’ mandates beyond the SMC is potentially hazardous and could jeopardize its effectiveness. Second, CBDs gain greater mastery of the tasks from round to round and campaign to campaign. This progression shows the relevance of a systematic approach to training, supervision, and regular refresher sessions to support routine implementation of the system. Finally, while the increase in CBDs’ capacities relates to all community health workers, it is of particular value to those who, because of their limited education, their age, or gender, have a poorer initial understanding of their tasks.National authorities should focus their efforts on fostering the retention of recruited CBDs and, in the selection processes, take into account their motivation and long-term commitment, rather than focusing primarily on their presumed learning capacities. They would also benefit from cultivating a climate of trust and a spirit of partnership between the CBDs and the health centres, while also strengthening their credibility among the populations.Additional file 1. Participation pattern of the panel.Additional file 2. CBD responses at each round.


In 2015 in France, 585,560 people were nursing home residents. A large body of studies has identified predictors of poor quality of life and poor adaptation in institution, mostly for residents without dementia. With 42 to 72% of these residents diagnosed with dementia, it is crucial to identify what factors prior to admission might have an impact on quality of life once the admission is finalized, in order to target specific domains of intervention, while the person still lives at home and after his/her admission.QOL-EHPAD is a prospective, multi-centred, observational cohort study. At baseline, we will collect retrospective data on the life of 150 persons with dementia and their caregivers. These data will refer to the conditions of admission to a nursing home  and to the 6 months prior to the admission of the person with dementia: sociodemographic and medical data, psychological tests, information on quality of life, satisfaction, behaviour, and nutrition. Similar data about life in the nursing home will be collected after 6 months, along with information on adaptation of the person with dementia to his/her new living environment. We will use univariate regression analyses followed by stepwise linear regression models to identify which factors pertaining to life at home are associated with quality of life and adaptation after 6 months.This study will provide data on the impact of institutionalization on quality of life and the determinants of a successful institutionalization in people with dementia. This could be helpful in setting up targeted interventions to prepare admission into a nursing home before the actual admission and to accompany both the caregiver and the person with dementia throughout this process. In 2015, 585,560 older people were living in a nursing home in France .Nursing home admission requires the resident to adapt to a new living environment, thus to new rhythms and routines, shaped by the constraints of group living. A good adaptation is positively influenced by having good physical autonomy and feeling prepared to enter the institution . HoweverIt is unclear whether entering a nursing home affects the quality of life of people with dementia, the literature providing inconsistent results. Indeed, while some studies suggest that quality of life is not impacted by admission into a nursing home , 14, othIn people with dementia living in nursing homes, a higher number of chronic diseases, the presence of sensory impairments and neuropsychiatric symptoms, higher quality of life at the time of admission, as well as the quality of life of the caregiver, are associated with lower quality of life and a negative evolution of quality of life over time , 18–20. sociodemographic and clinical characteristics of both the resident and his/her caregiver such as sex, age, level of education, mean income, cognition, dependency (difficulties in ADL and/or IADL), comorbidities, depression , 9, 25;social environment before admission: living conditions such as living alone, participation in social activities, perceived social support ;involvement in the decision to enter a nursing home ;conditions of admission: emergency or programmed admission, hospital stay before admission , 24, 27.We have thus identified four types of pre-admission factors that might affect both quality of life and adaptation of nursing homes residents diagnosed with dementia:The objective of the QOL-EHPAD  study is to assess the impact of clinical characteristics, living conditions and environment before admission, as well as conditions of admission (i.e. emergency / programmed admission and decision-making conditions regarding nursing home admission) on quality of life and adaptation of people with dementia after 6 months in institution.Emergency admission and/or admission without the person with dementia being consulted is associated with a lower score of quality of life measured with the Quality of Life - Alzheimer’s Disease scale  sixEmergency admission and/or admission without the person with dementia being consulted is associated with a lower adaptation score six months after admission.Higher score of quality of life in the six months before admission is associated with lower quality of life and adaptation scores after six months after admission.Higher number of comorbidities during the six months before admission is associated with lower quality of life and adaptation scores six months after admission.Higher score of behavioural disturbance in the six months before admission is associated with lower quality of life and adaptation scores six months after admission.Higher perceived social support in the six months before admission is associated with higher quality of life and adaptation scores six months after admission.Higher participation in social activities in the six months before admission is associated with lower quality of life and adaptation scores six months after admission.Higher level of routines in the six months before admission is associated with lower quality of life and adaptation scores six months after admission.Depressive symptoms in the six months before admission are associated with lower quality of life and adaptation six months after admission.Sensory impairment before admission is associated with lower quality of life and adaptation six months after admission.Higher cognitive functioning in the six months before admission is associated with lower quality of life and adaptation scores six months after admission.Lower quality of life of caregivers in the six months before admission is associated with lower quality of life and adaptation scores of residents with dementia six months after admission.QOL-EHPAD is a prospective, multi-centred, observational cohort study. We intend to recruit 150 dyads (participant with dementia and his/her caregiver) from 14 public nursing homes located in a French administrative area of Southwestern France (Lot-et-Garonne). This area combines both rural and urban settings, which will allow for a wide exploration of home situations. Additional nursing homes may be included if necessary in order to reach the target sample size of 150 dyads, and bimonthly contact is established with a referent from each nursing home to review admissions and possible inclusions.Before the inclusion visit, the nursing home physician goes over the admission files of the future residents or newly admitted residents to review eligibility criteria. If the profile fits, s/he sets up a face-to-face or a phone interview to ask for consent to both the person with dementia and his/her caregiver. S/he then reviews the inclusion and exclusion criteria with them. S/he gives them information on the nature and objective of the research and on the risks and benefits associated, as well as on the confidentiality agreement. S/he provides both caregiver and person with dementia with an information notice and keeps a copy for the investigator file. Due to the observational nature of the study, the Ethics Committee does not require consent forms. Nevertheless, the physician signs and dates each information notice for traceability of the agreement to participate. The physician then contacts the psychologist who will conduct interviews. The psychologist then sets up interviews with the participants. All questionnaires will be administered by a trained psychologist. Delay between admission and time of the interview should not exceed a month, considering the time-sensitive nature of the collected information.Table Baseline data are retrospective and refer to the six-month period before admission. Caregivers and persons with dementia are interviewed separately. The six-month follow-up requires data collection from informal caregivers, nursing home caregivers and persons with dementia. Table Resident’s quality of life is assessed using the Quality of Life in Alzheimer’s Disease  oneAdaptation to the nursing home is assessed after six months using the French Scale of Adaptation to the institution . This 17A number of sociodemographic data about the person with dementia and his/her caregiver are collected: sex, age, level of education, housing situation, marital status, financial support as well as medical data of the person with dementia .Data on daily and leisure activities are provided by the caregiver. S/he has to say whether the person with dementia performed activities at home that bore meaning to him/her. Then, the type and number of meaningful activities are collected. This type of data collection allows any type of activity to be included, whether solitary or social.Participants evaluate their satisfaction with their life as a whole, with their health and with their friends and family using single items.To assess quality of life of the caregiver at baseline and follow-up, we use the short version of the Medical Outcomes Study Short-Form General Health Survey SF-36 ), the SF , the SFPresence, frequency, severity and impact on caregivers of behavioural and cognitive symptoms of the person with dementia are assessed with the Neuropsychiatric Inventory (NPI ) at baseCaregiver’s burden is assessed at baseline and after six months using the Zarit Burden Interview . With a Nutritional state of the person with dementia is assessed at baseline and after six months using the Mini Nutritional Assessment . This twThree questionnaires assess dependency. At baseline, caregivers evaluate the person with dementia’s autonomy at home. We use the Katz Index of Independency in ADL , a six-iAutonomie Gérontologie Groupes Iso Ressources). This 17-item French-specific grid classifies people into six groups according to their degree of dependency in ten bodily and mental functions and seven activities . A score of 6 indicates total autonomy while 1 indicates total dependency.At follow-up, the designated professional caregiver evaluates dependency using the AGGIR questionnaire  , caregivFilled out by the caregiver at baseline, the short version of The French Routinization Scale  evaluateGlobal cognitive functioning is assessed with the Mini-Mental State Examination , a 30-itThe Center for Epidemiologic Study - Depression Scale CES-D , 46), a , a 46]),Involvement of the person with dementia and his/her caregivers and relatives in the decision to enter a nursing home are collected from the caregiver. We will also explore whether the person with dementia agreed with this decision with a dichotomous question.Data on conditions of admission are collected: was it an emergency or planned admission? Place of stay before admission is also collected. We ask whether the participant with dementia was admitted from his own home, from a hospital or from any temporary housing.In order to calculate the target sample size, we used data from Castro-Monteiro et al. . They foFirst a description of number of participants, inclusion rhythm (evolution of inclusion from the first to the last inclusion), expected number of visits and actual number of visits, violations to the protocol if any, and causes for attrition, will be performed.At baseline and follow-up, categorical data will be described as follows: frequency, number and percentage. We will compare baseline data of people who answered after 6 months with data of people lost to follow-up using a chi-square test.At baseline and follow-up, continuous data will be described as follows: mean, standard deviation, minimum, maximum and interquartile intervals. We will compare baseline data of people who answered after 6 months with data of people lost to follow-up using a Student T test.Statistical analyses will be similar for both primary and secondary outcomes.Scores will be described at baseline and after 6 months for the QOL-AD, and after 6 months for the Adaptation to the Residence scale as follows: mean, standard deviation, minimum, maximum and interquartile intervals.p < 0.20, variable will be included in a stepwise regression model, after we check for multicollinearity with a correlation matrix. We will then use a backward stepwise regression model to identify the best predictors of quality of life and adaptation (p < 0.05). All statistical analyses will be performed using Rstudio [We will perform linear regression models to assess the association between the variables and our outcomes. If  Rstudio .Data management and statistical analyses  will be performed by the SEPIA Team, from the Bordeaux Population Health Research Centre. Data will be anonymized, password-protected and stored on a secure server. No transfer of data will be authorized.The sponsor  is allowed to carry out an audit at any stage of the research. This audit is decided and performed independently from the investigators. The audit consists in checking participants’ safety, respect of participants’ rights, compliance with research regulations, and data reliability. A steering committee has been set up. Its role is to provide overall supervision of the research and monitor the progress of the trial in accordance with the protocol. A more restricted trial management group including the principal investigator ensures the day-to-day study management. The data monitoring management is carried out by an independent data manager. The study is conducted in accordance with the declaration of Helsinki and with the 2012–300 law regarding research involving humans.Every 2 months, the field partners receive a newsletter giving updates on inclusions and amendments to the protocol, if any. Results will be published in international scientific journals and presented in meetings (in partner nursing homes) and in scientific congresses.Authorship status for communications on this study will comply with standard authorship guidelines, which guarantee substantial contribution. No professional writer will participate.Comprehensive research on the quality of life of people with dementia throughout the transition between home care and nursing home remains scarce. We can reasonably think that our study will contribute to identify which factors, before admission, predict quality of life and adjustment to nursing home. This will contribute to a better understanding of the impact of institutionalization on quality of life and the determinants of a “successful” nursing home admission.Given the time and memory sensitive nature of the data, main analyses on living conditions at home will be performed using caregivers’ data. Comparison between the caregivers’ and person with dementia’s data in further analyses will offer interesting insight on how a person with dementia reconstructs the idea of life at home, and if this reconstruction reflects the objective conditions of her daily life and the perception of the main caregiver. The evaluation by three different persons of the resident’s quality of life with the QoL-AD – by the resident him/herself, his/her relative and nursing home carer - will also allow for cross-sectional analyses and comparisons of predictors according to the evaluator.To conclude, we need robust data on predictors of quality of life and adaptation in people with dementia before implementing any kind of intervention dedicated to promote well-being. The existing interventions mostly start at admission  or focus