Inherited Metabolic Diseases (IMDs) are rare diseases caused by genetic defects in biochemical pathways. Earlier diagnosis and advances in treatment have improved the life expectancy of IMD patients over the last decades, with the majority of patients now surviving beyond the age of 20. This has created a new challenge: as they grow up, the care of IMD patients' needs to be transferred from metabolic pediatricians to metabolic physicians specialized in treating adults, through a process called “transition.” The purpose of this study was to assess how this transition is managed in Europe: a survey was sent to all 77 centers of the European Reference Network for Hereditary Metabolic Disorders (MetabERN) to collect information and to identify unmet needs regarding the transition process. Data was collected from 63/77 (81%) healthcare providers (HCPs) from 20 EU countries. Responders were mostly metabolic pediatricians; of these, only ~40% have received appropriate training in health issues of adolescent metabolic patients. In most centers (~67%) there is no designated transition coordinator. About 50% of centers provide a written individualized transition protocol, which is standardized in just ~20% of cases. In 77% of centers, pediatricians share a medical summary, transition letter and emergency plan with the adult team and the patient. According to our responders, 11% of patients remain under pediatric care throughout their life. The main challenges identified by HCPs in managing transition are lack of time and shortage of adult metabolic physician positions, while the implementations that are most required for a successful transition include: medical staff dedicated to transition, a transition coordinator, and specific metabolic training for adult physicians. Our study shows that the transition process of IMD patients in Europe is far from standardized and in most cases is inadequate or non-existent. A transition coordinator to facilitate collaboration between the pediatric and adult healthcare teams should be central to any transition program. Standardized operating procedures, together with adequate financial resources and specific training for adult physicians focused on IMDs are the key aspects that must be improved in the rare metabolic field to establish successful transition processes in Europe. Inherited Metabolic Diseases (IMDs) encompass an expanding and comprehensive group of rare diseases caused by inherited defects in various biochemical pathways. Currently, IMDs include more than 1,400 different genetic diseases . The firClinical presentation and course of IMDs are variable, spanning from acute life-threatening metabolic decompensation in the new-born period  to a slowly progressive disease with initial symptoms manifesting only in adulthood . Given tEarlier diagnosis and advances in treatment have much improved the prognosis and life expectancy of IMDs over the last decades, meaning that more than 90% of rare metabolic patients will survive beyond the age of 20 years , 11. MorThe transition process is critical to ensure that adolescent patients with IMDs obtain the best quality of life possible as adults. Also, patients and families need to become empowered and take full responsibility of their disease. To this end, an appropriate and gradual transition program is pivotal: patients need to be informed and accompanied step-by-step as they gradually switch from a pediatric care in which doctors and caregivers are responsible for the patient—from organizing medical visits to buying medications—to an adult care in which the patient is aware of all the precautions and treatments to manage her/his condition (under control) and avoid deterioration. Only through a successful and gradual transition program will an IMD patient become fully independent and capable of taking life-long care of her/his health .Transitional care has been defined as “the purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health care systems” . But up https://metab.ern-net.eu). The WP9, representing patient empowerment, has highlighted the need to take urgent care of the transition process. In 2019, MetabERN and SSIEM organized a webinar in which four MetabERN centers presented their own program on transition. Then, in the context of the WP4 on Guidelines, Care Pathways and Standardization for Medical Care and Transition, MetabERN established the Transition Project Working Group (TPWG), which is led by referral experts in the field in collaboration with the associations of patients.The European Reference Network for Hereditary Metabolic Disorders (MetabERN), established in 2017, connects centers specialized in rare metabolic diseases at EU level; it represents 77 healthcare providers (HCPs) from 23 EU Member States and 44 patient organizations. It is also endorsed by the Society for the Inborn Errors of Metabolism (SSIEM). Overall, the network follows almost 33,000 IMD patients . MetabERN is organized in nine work packages (WP) and in seven subnetworks (SNW), each SNW being specific for the metabolic defects and/or pathways involved in the disease  HCPs from 20 EU countries . RespondOf the responding centers, 6.4% are dedicated exclusively to adults, 84.1% of centers follow both adult and pediatric patients, while 9.5% are pediatric only . OverallIn centers with existing transition programs, for over half the cases (52.4%) transition starts at 18 years of age. Consequently, the process is mostly finalized after the age of 18 (57.1 vs. 21.4% between 16 and 18 years of age), while 10.7% of patients never transition because they remain under pediatric care throughout their life . Of the Medical specialities involved in the medical care of adult metabolic patients are mainly internists (50%), followed by clinical geneticists and cardiologists (15.6% each) . In the Almost half of the centers (48.2%) provide a written individualized transition protocol, which is standardized in nearly 20% of cases . In the Among the responding physicians, only 39.7% have received appropriate training in managing health issues in adolescent metabolic patients, while the others acquired the necessary knowledge mainly through courses and internships in metabolic centers .The main challenges of HCPs in managing the transition process are lack of time (49.2%) and shortage of adult metabolic physician positions (44.1%) . This isThis survey provides the first European report on the status of the transition process in rare metabolic diseases from the HCPs perspective. With 63 centers responding from 20 EU countries, our results may provide a representative overview of the current situation in European centers of excellence, selected for their expertise in metabolic diseases. The pediatric specialty was the most prevalent responder group in our survey, reflecting predominantly the pediatricians' point of view in the transition process. At the same time, our surveys show a large disproportion between the medical specialties looking after IMD patients. This underlines the multisystemic nature of IMDs and the peculiar need of affected patients to be followed by multiple professionals, who should interact and collaborate with one another within a well-defined multisystemic approach framework. Unfortunately, in a real world situation patients are seen by different specialists that rarely know or communicate with each other, resulting in a fragmented, uncoordinated and suboptimal care.Here we show that most HCPs discuss transition with the family and share a medical summary with the adult physician and the patient. In most cases, this summary is not standardized and includes a short description of the disease, its precautions and comorbidities, type and dosage of medications, a detailed emergency regime, a nutrition plan, and the latest blood test results. Despite decades of increasing knowledge regarding the importance of a properly structured transition for later health outcomes , 21, ourIn most centers a transition coordinator is missing and the process is fragmented or even non-existent, to a point where about 10% of patients never transition and stay under pediatric care all their life. In this context, the presence of a transition coordinator is a major factor for a successful transition program, as it ensures that adult care teams are aware of, and prepared for, the management of rare conditions and their peculiarities. The coordinator schedules the transition meetings, collects and updates all the necessary documentations, and ensures that all appropriate specialists and social professionals are present during the transition visits. Despite these differences, the transition coordinator should have defined duties to ensure the highest standards and success of the transition process. Our survey identified that the appointment of a transition coordinator is necessary, which calls for immediate action from healthcare organizations and policy makers to improve the transition process across Europe. The need for this new administrative role has also been identified by De Castro et al. .Another main finding in our study is the shortage of physicians specialized in the adult care of IMDs. In fact, only 11% of the respondents to the survey were adult IMD professionals and most centers stated that an adult team was only available for a subset of metabolic diseases. In this context, the lack of specific metabolic training for adult physicians regarding adolescent health issues must be emphasized, as this is a key factor for implementing a successful transition program. Education of adult specialists in IMDs is important for a number of reasons: not only do an increasing proportion of pediatric patients survive with more complex disorders and with neurocognitive disabilities, but a greater number of IMDs presenting in adulthood are being diagnosed in the genomic era. As a part of education and optimization of the transition process, it is important to develop cooperation and trust between pediatricians and adult physicians . This wiThe SSIEM recently launched a survey to 89 adult specialist members. Despite the fact that practical clinical experience with adult IMDs was considered key for their own education in rare metabolic diseases, most responders (73%) judged their education as poor or fair. The main message was the need for formal training opportunities in adults and courses on IMDs . These rOur results show that adult IMD patients are regularly followed mainly by internists, with the widespread involvement of other sub-specialists, illustrating the complexity of the diseases. This is not surprising, as most adults with a chronic condition demand surveillance by different specialists; however, this also highlights the fact that healthcare is more fragmented in adulthood. This might create obstacles in guaranteeing a continuous and holistic care of adult metabolic patients. Therefore, it is necessary to create a multidisciplinary team of HCP specialized in the treatment of adult patients with IMDs; for example, a team coordinated by an internist specialist in metabolic diseases. Regarding the type of specialties following IMD patients, these include mostly neurologists, cardiologists, nephrologists, orthopedist and nutritionists. This is not surprising, as it is a reflection of the multi-organ involvement of IMDs and the importance of a balanced diet to avoid metabolic decompensation.The whole process of transition is further complicated by the lack of standardized programs or specific guidelines shared across Europe. This is a crucial aspect that needs to be addressed by institutions and policy makers in order to ensure that the best possible care—and therefore quality of life—is given not only to IMD and other rare disease patients, but to all patients with a chronic condition that arises during childhood. Indeed, the transition issues that were highlighted with our survey may be shared by other chronic conditions. As a possible solution strategy, the optimization of electronic medical records could be of help.The lack of financial resources is another aspect that makes it difficult to implement appropriate transition teams and programs. In the midst of the current COVID-19 pandemic, which imposed great changes in healthcare funds and organization, rare diseases must not be forgotten and specific activities should be put into place to increase awareness in public institutions and authorities about IMDs and the transition process.From the patient perspective, there are significant challenges to be considered when transitioning from a family-centered, developmentally-focused, and multidisciplinary pediatric care to a less supportive adult healthcare system that is often unfamiliar with rare diseases . Among tThis study has several limitations. Firstly, it provides only the MetabERN HCPs' point of view. More specifically, the majority of respondents were pediatricians, as they have been the historical managers of patients with IMD, leaving the adult perspective of the transition process less represented. Moreover, transition is a process involving several key players in the center of interest; therefore, the next survey to complement that of the HCPs should be targeted at patients and their associations to understand their point of view and especially to gather information on the social and psychological aspects of transition, which seems even more difficult in patients with multiple disabilities. Our survey focused on HCPs, which can provide information and suggestions regarding the more practical and administrative aspects of the transition process. In fact, no publications exist on the patient or caretaker point of view and indeed this is one of the next steps to be taken by MetabERN. Secondly, due to the design of the survey, we were not able to collect specific data regarding the percentage of pediatricians that are involved in the care of adult IMD patients. The majority of our responders (65%) were pediatricians and at present we are not able to assess whether other specialists taking care of adult patients are also pediatricians. Thirdly, specific questions about the set-up and maintenance of a successful transition process were missing, so at this stage we cannot provide exhaustive examples or recommendations on how to improve the transition where this is difficult. Further work is needed to propose specific transition recommendations in the field of IMDs, for example by using templates from hospitals that have a long experience with transition and have made some written recommendations, also taking into account the patients' perspective. Indeed, this is part of the further activities planned by MetabERN's TPWG.The final aim of MetabERN and the TPWG is to collaborate and share expertise and good practices to develop possible action guidelines and minimal standard of care. In this way, all specialists involved in the care of IMD patients, and potentially in other fields, will have access to guidance and support in the management of the critical process of transition, which in turn will aid a successful and efficient transfer from pediatric to adult care for all patients. This study is the first step in that direction.maurizio.scarpa@metab.ern-net.eu.The datasets presented in this article are not readily available because they are stored in a private depository. Requests to access the datasets should be directed to Maurizio Scarpa, Ethical review and approval was not required for the study on human participants in accordance with the local legislation and institutional requirements. The patients/participants provided their written informed consent to participate in this study.GC, A-GL, and KMS developed the survey and revised the manuscript. NB, MT, RF, AH, BK-W, CL, CM, TT, VR, SS, KMS, LW, NW, and CvL revised the manuscript. CMB and LP analyzed the data and wrote the manuscript. MS supervised the study and revised the manuscript. All authors contributed to the article and approved the submitted version.The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.


The ability to identify the emotions of others is a key component of what is known as social cognition. Narratives exploit this mechanism to create an emotional bond with the characters and to maintain the engagement of the audience throughout the story. In this paper, we illustrate a case study in emotion understanding in stories that exploits a computational agent to explore emotion impairment in a group of traumatic brain injured people. The study focuses on moral emotions, aiming to investigate the differences in moral functioning that characterize traumatic brain injured patients. After comparing the understanding of the moral and emotional facets of the agent's behavior in traumatic brain injured patients and in neurologically intact controls, slight–yet meaningful–differences were observed between the two groups. We describe the test methodology and results, highlighting their implications for the design of rehabilitation applications based on virtual agents. Emotions play a crucial role in stories, as stated by scholars for centuries, from philosophy . More specifically, we focus on the understanding of narrative situations involving moral emotions. In fact, authors have claimed that moral impairments following TBI should gain more attention in research  with a measure of its own emotional well-being  and becomes committed to the plan with the best trade-off between positive and negative emotions, then starts to execute it. After monitoring the effects of the execution on the state of the world , the agent eventually updates its beliefs and emotional state accordingly.The core reference model for creating virtual agents is provided by the widely acknowledged Belief Desire Intention (BDI) model Bratman, . The BDIy et al.   are the moral drive of the agent , to assess the consequences of the agent's options on the agent's emotional state; the second time, after assessing the changes occurred in the world , to generate the agent's actual emotional state, according to the following schema:Value Monitoring: If the agent believes the condition of a value to be true in the current situation, then the value is at stake.Goal Formation: Goals whose adoption conditions hold in the belief base are adopted and become active intentions; they include value-based goals, motivated by the values at stake.Emotional Anticipatory Appraisal: After computing the expected emotional reward (EER) of every goal from its associated plans, the agent chooses the optimal plan; in this phase, the agent “feels” only anticipatory emotions.Execution: The agent starts the execution of the next action of the chosen plan.Monitoring: The agent appraises the world and updates her beliefs about it, including the status of its goals and values.Emotional Appraisal: depending on the updates observed in the state of the world  the agent feels certain emotions.A characterizing feature of the MEA model is given by the explicit acknowledgement of Goal formation). So, the agent starts planning how to achieve her goal, eventually devising two plans: asking the other agent to give her the candy, or stealing the candy. The agent appraises the effect of each plan on her goals and values, and ranks the plans according to their expected emotional reward . Depending on the goal and value structure of the agent , the ranking of plans will vary. Eventually, the agent selects a plan and executes it (Execution), monitors its effects (Monitoring) and feels emotions based on its outcome: gratitude, anger, disappointment, satisfaction, etc. . When the reasoning cycle starts again, the agent might realize one of her values to be at stake : for example, because she has put at stake her honesty due to her desire for chocolate.Consider, for instance, an agent who desires a chocolate treat, but hasn't got one. Having learnt that another agent has a chocolate candy (adoption condition), the goal to eat the chocolate candy becomes the agent's active intention , the appraisal process generates a desirability variable (or an undesirability variable); when an agent's value is put at stake  by the execution of some action, the appraisal process generates a blameworthiness (or praiseworthiness) variable; the probability that an event occurs or that a agent's plan succeeds generates a likelihood variable. Based on the appraisal variables, the affect generation process generates emotions according to the following rules  if a desirable (or undesirable) appraisal variable is generated;Pride (or Shame) if praiseworthy (or blameworthy) appraisal variable is generated and the responsibility is self-caused;Admiration (or Reproach) if praiseworthy (blameworthy) appraisal variable is generated and the responsibility is other-caused.likelihood appraisal variable has a high (or low) value, Hope (or Fear) are generated. The intensity of emotions depends on the multiplicative relationship between the importance of values and goals, the effort  and the probability of success of the plan.When the same situation is appraised as both an action and a non-intentional event, appraisal variables for both values and goals are generated, thus eliciting compound emotions: Gratification (Joy and Pride), Gratitude (Joy and Admiration), Remorse (Distress and Self-Reproach), Anger (Distress and Reproach). If a As a consequence of the anticipatory emotional appraisal, the behavior of the agent is compelled by its moral values through anticipatory emotions, a feature that makes it especially suitable to model moral dilemmas in stories , negative emotions such as the shame generated by the act of stealing, or the fear to fail a risky plan, will be largely compensated by the satisfaction of eating the candy, and agent will end up stealing; on the contrary, if honesty is very important for the agent , the expectation of shame will retain her from stealing, unless she is really hungry. Notice that even if the agent eventually decides to steal, this won't stop her to feel shame, possibly with a low intensity, and mixed with satisfaction or disappointment depending on whether she actually obtained the chocolate candy.In order to validate the MEA model, Battaglino and Damiano compared the behavior and the emotions generated by the MEA agent with the predictions of human participants in a set of narrative scenarios The clinical sample was made up of 14 TBI individuals (mean age 40.3), involved in neuropsychological rehabilitation at the center from 1 to 13 years (mean 5.5). Being in its exploratory phase, our study involved an heterogeneous sample, with participants having different cognitive profiles and clinical histories, with lesions being localized mostly (but not exclusively) in the frontal area. However, they were all recruited according to their ability to execute the testing procedures, to read and to verbally understand the scenarios thoroughly, along with having difficulties in social cognition . In fact, only the patients that were deemed able to complete the tasks by the center neuropsychologists were invited to participate. Moreover, prior the experiment, each participant had the possibility to familiarize with the experimenter and with the testing procedure, to avoid stress and discomfort. As completing the task required full recovery of specific cognitive abilities , recruiting participant was challenging, resulting in a small sample. Before starting the tests, two TBI patients with a cognitive profile similar to that of participants took part in the study in order to test if their cognitive impairments  would result in the task being too difficult or impossible to complete. Secondly, the methodologies were slightly adapted to the needs of the participants; for example they were made shorter . After this, the Actor Studio and the Audience Studio testing methodologies were presented to a new sample made of TBI patients and healthy controls, in order to compare the groups. The control group was a convenience sample including neurologically intact individuals , matching each patient for age and gender.The experiments were conducted online. For each scenario see , a shortThe experiment was conducted online. It was made up of the 4 narrative scenarios illustrated in By contrast, the Actor Studio methodology required the participants to choose a nickname for their performance. This, along with the testing procedure being simpler and therefore shorter, allowed every single session data to be related to its tester and with the right scenario. The aforementioned characteristics of the testing methodologies allowed us to compare scores between groups for both methodologies, but a deeper analysis of the scores and of their correlation with the clinical data was possible only for the Actor Studio test.This section illustrates the measures employed to compare the performance of the two groups along with the results, discussed in section 5.n = 13 for TBI patients and n = 11 for the control group (as a consequence of participants drop-out). One neurologically intact participant was not included in the analysis, as his scores were significantly lower than other participants' . Participants' responses were turned into scores in order to perform comparisons between groups. As mentioned before, for the Audience Studio methodology only, scores were measured separately for each scenario.Data were analyzed through SPSS Statistics 24 (IBM). Sample size was Emotion total score (ETS): score = 1 each time participants would choose the same emotion predicted by the MEA model;Moral emotion score (MES): score = 1 each time participants would choose the same emotion predicted by the MEA model; only for moral emotions, being them admiration, contempt, gratification, gratitude, pride, shame, anger, blame;Non moral emotion score (N-MES): score = 1 each time participants would choose the same emotion predicted by the MEA model; only for non moral emotions, being them joy, sadness, hope, and fear;Error total score (ERTS): score = 1 each time participants both would choose an emotion in disagreement with MEA model and would miss indicating those predicted by the model;Moral emotion error score (MERS): score = 1 each time participants both would choose an emotion in disagreement with MEA model and would miss indicating those predicted by the model; only for moral emotions;Non moral emotion score (N-MERS): score=1 each time participants both would choose an emotion in disagreement with MEA model or would miss indicating those predicted by the model, only for non moral emotions.For both methodologies, scores were calculated as follows:Action total score (ATS): score=1 each time participants could guess the agents' action according to MEA model.In the Actor Studio, participants were asked to predict the action characters would choose according to their moral values. Therefore, for this methodology only, we took a further measure into account:not predicted by the model, and those not selected by the participants. Considering the MEA Model emotion set as an array of emotions (some included and some not) and the participants choices as an array of selected and unselected emotions, the Simple Matching Coefficient (SMC) was calculated as follows:M00 are the emotions not predicted by the model and not selected by the participant;M11 are the emotions predicted by the model and selected by the participant;M01 are the emotions not predicted by the model selected by the participant;M10 are the emotions predicted by the model not selected by the participant.For each score, means were compared using Mann–Whitney test, suitable for different-sized samples. As our aim was to compare TBI participants' similarity with the MEA agents with that of neurologically intact individuals, we also used the Simple Matching Coefficient statistic to evaluate the performance of the participants  and the global Simple Matching Coefficient for the Actor Studio methodology, calculated on all three scenarios. Moreover, we investigated the relation between the time distance from the traumatic event (in years) and the aforementioned variable.X indicates the course of action predicted by the model. As it can be observed, the results show no significant difference, with TBI patients performing slightly better than controls. Participants were also asked to pick out the emotions they would feel being in the characters' shoes. In the Actor Studio, participants were asked to select which among two alternative courses of action the characters in each scenario would choose, according to their moral values. Percentages for action choice for TBI and healthy controls are shown in p < 0.05) in order to compare means; no statistically significant difference was found between groups. However, there are some differences that deserve further consideration: all scores are slightly higher for TBI patients than controls , but at the same time, their error scores  also have higher values. In order to explore whether the observed tendency of TBI participants to select a large number of (often inconsistent) emotions would effect their scores, we measured Simple Matching Coefficients. Before computing SMCs for each scenario, we calculated the global SMC for all scenarios included in the Actor Studio methodology, as we believed emotion choices could be investigated as a single array of selected (and unselected) emotion labels, to be compared with MEA model predictions. When considering the complete emotion set, the mean SMC was 0.71 for controls and 0.67 for TBI participants. Focusing on moral emotions only, mean was 0.67 for TBI participants and slightly higher (0.70) for controls. We compared SMC through Mann-Whitney statistic. No statistically meaningful difference was found for both global  and moral  emotion set. SMCs were then computed for each scenario separately and hence compared using Mann–Whitney statistic (sig. < 0.05); no statistically significant difference was found between groups. Due to methodology constraints (see section 3.3), data were analyzed separately for each scenario. Subjects were asked to select those emotions they believed better described the emotional states of characters in the scenario. In order to better assess score differences for emotion selection, Simple Matching Coefficients were computed for each scenario for both TBI participants and controls: similarly to the Actor Studio test, the SMCs are higher for controls than TBI patients for all scenarios. SMCs  were then compared through Mann–Whitney statistic (sig.<0.05). In this work, the experiments described in section 3 were carried out with a group of patients dealing with the consequences of TBI and with a control group of neurologically intact individuals, to explore group differences in the understanding of characters' moral behavior and emotions. In fact, according to research, TBI patients often exhibit impairments in social cognition, despite undergoing effective rehabilitation. More precisely, our study taps into the domain of moral emotion recognition in stories, as an important yet often neglected  for each scenario and for the Actor Studio methodology as a whole see , 5. In fWe further analyzed how participants evaluated characters' emotions. Regarding this, results for the Audience Studio testing methodology might help explain the score difference found for the Actor Studio methodology. As Whereas not many works have addressed moral understanding in stories, literature . As the rehabilitation the patients were undergoing did not include moral emotions or moral scenarios, this result came as no surprise. Similarly, we found Simple Matching Coefficients to be unrelated to time distance as well . In this, the results obtained were promising for the design of agent-based rehabilitation tools, since they show that, in the absence of a specific rehabilitation targeted on emotions, and moral emotions in particular, no advancements are obtained.We also had the goal to collect preliminary data for the development of a rehabilitative tool in which patients face a moral situation, addressing their ability to perform moral reasoning and reasoning on their moral emotions through a virtual agent, following the paradigm discussed in Lisetti and Hudlicka  and HudlA—“this test allowed me to think about the values that shape my moral judgment, helping me understand how every action comes after deep and elaborate reasoning”; R—believes this test “is important, as it makes my head start again.” On the other side, the indirect validation of the MEA model provided by the study opens the way to the use of virtual agents in rehabilitative settings, as it contributes to the specification of an accountable agent model for developing practical applications.On the one side, our experiments confirm the feasibility of this type of rehabilitation, further demonstrated by the comments of our TBI participants  in order to gain a deeper understanding. This is in line with the mental models theory perspective on moral reasoning (Bucciarelli et al., The datasets generated for this study are available on request to the corresponding author.Ethical review and approval was not required for the study on human participants in accordance with the local legislation and institutional requirements. Written informed consent for participation was not required for this study in accordance with the national legislation and the institutional requirements.All authors listed have made a substantial, direct and intellectual contribution to the work, and approved it for publication.The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.


The activities of daily living, the health condition of hypertension and diabetes and the survival statuses of these cases were analyzed by the IMaCh (Interpolated Markov Chain) and logistic regression model. (3) Results: As regards the elderly between age 50 and 60 with hypertension and diabetes, women with hypertension only exhibited the longest life expectancy, and the healthy life expectancy and the percentage of remaining life with no functional incapacity were 33.74 years and 87.11%, respectively. In contrast, men with diabetes only showed the shortest life expectancy, and the healthy life expectancy and the percentage of remaining life with no functional incapacity were 22.51 years and 93.16%, respectively. We also found that people with diabetes showed a lower percentage of remaining life with no functional incapacity. (4) Conclusions: We suggest that policymakers should pay special attention to publicizing the importance of health control behavior in order to decrease the risk of suffering diseases and to improve the elderly’s quality of life. Along with the progress and improvement of the social economy and health care, the life expectancy in Taiwan is increasing annually; in particular, the increase in lifespan for the elderly aged above 65 is more obvious than for other age groups. In May 2020, the elderly above 65 populations in Taiwan is 15.62% of the total population (the senior society), and the ratio would exceed 20% to achieve the aged society in 2025 [On the other hand, chronic diseases are the major factor in middle-aged and elderly death, including malignant tumors, cardiac disease, cerebrovascular disease, diabetes and hypertension. The middle-aged and elderly, with their reducing metabolic capability, can easily suffer from chronic diseases and their complications and face increased risks of death. Apparently, the health burden caused by chronic diseases will be increasingly present as the society ages. This will affect individual physical and mental conditions and might increase family expenses resulting from medical treatment.The development of a person’s health conditions starts with suffering from a disease and then leads to death. In other words, suffering from a disease is the starting point of health degradation. The elderly’s health conditions are a concern of the senior society, where chronic diseases are the major factors in the function of activity and self-rated health . A largeAccording to the statistical annual report of medical care by the National Health Insurance, the health insurance claims for diabetes in Taiwan amounted to about 1.9 million person-times in 2015—about 200 times the death toll in the year—where the visit rate per 0.1 million population appeared to be the highest for the elderly aged above 65, at 28,295 people, which was about 3.5 times the general average. On the other hand, the average health insurance medical fee point per person for diabetes was 10,438 in 2015 , which was not the highest medical expenditure but was significant when including the medical fees for related complications . Their rPopulation aging and lengthened lifespans do not necessarily show the promotion of quality of life. Nevertheless, disability is not an inevitable part of life in the aging process of the population ,22. As aIf extending life expectancy is a global goal to enhance social welfare, reducing disability years and increasing healthy life expectancy is a primary issue and challenge encountered in an aging society. Moreover, it should be determined whether the quality of life of the elderly would be promoted by economic development and medical advances in Taiwan. Taking healthy life expectancy without disabilities as the indicator of health conditions in this study, the difference between the life expectancy and healthy life expectancy of the elderly suffering from hypertension and diabetes in Taiwan is compared to discuss the effect of important chronic diseases on healthy life expectancy.The “Taiwan Longitudinal Study in Aging” (TLSA) conducted by the Health Promotion Administration, Ministry of Health and Welfare was used as the data source. Originally, the registered population aged above 60 by 1988 in Taiwan (not including mountain townships) was sampled with the stratification of multi-level sampling for TLSA. After completing the baseline survey in 1989, a follow-up visit was completed every 3–4 years. In order to establish the complete database for those above the age of 50, supplementary samples with lower age groups were sampled, as in 1989, in 1996 and 2003; the follow-up visit rate was above 80%. The major surveyed issues contained health conditions, social support and the working and economic statuses of cases.Regarding the selection of research objects, the cases in 1996 are selected as the major research objects  for this study. The life expectancy and the healthy life expectancy are estimated according to the situations of suffering from hypertension and diabetes, the activities of daily living (ADLs) and survival conditions in the survey in 1996, 1999, 2003, 2007 and 2011.Taking showers;Putting on clothes or taking off clothes;Having meals;Getting up, standing or sitting on chairs;Walking indoors;Going to the toilet.In terms of overall health evaluation, disability-free life expectancy is defined as healthy life expectancy; the activities of daily living (ADL) scale is used to measure the health state. The scale covers the following activities:A case where any activity is assessed as slightly difficult, very difficult or completely impossible to do is defined as disability . Disease is defined by self-reporting for a case of suffering from diabetes or hypertension.The discrete-time Markov chain model is used as the analysis model to calculate healthy life expectancy, and the maximum likelihood method is utilized to estimate the transfer probability of health status and calculate the healthy life expectancy . Based ohttp://euroreves.ined.fr/imach/).With IMaCh, the health state, status of suffering from a disease and survival conditions of the middle-aged and elderly in Taiwan were used to estimate the life expectancy and healthy life expectancy. For the estimation of life expectancy and healthy life expectancy with IMaCh, the discrete-time Markov chain was used as the analysis structure; in addition, the logistic regression model was utilized and the required covariance was added for the analyses, including the year and month of birth, year and month of death, visit completion time in various surveys, health state  in various surveys and status of suffering from a disease in the various case surveys. The statistical model and theoretical structure were determined by the IMaCh software, and the analysis programming proceeded according to the website of Computing Health Expectancies using IMaCh  is further provided.In comparison with males, females experience more restrictions and fewer resources in life, meaning that negative effects could more easily appear in the old age; the encountered problems, therefore, would be highlighted in old age. The longer life expectation also means that females show a worse health and quality of life than males. The analysis results of this study could provide evidence for this. Current medical care resources and economic security system design should therefore take gender into account. Economic security, living models, home care and social support to promote female elderly quality of life in old age and the relevant issues should be focused on by citizens.On the other hand, the risk of suffering from hypertension and diabetes increases with increasing age. It is shown in this study that diabetic patients show a lower life expectancy and healthy life expectancy percentage, revealing the worse quality of life of diabetic patients in Taiwan in old age. This is related to diabetic patients more easily developing other chronic complications. When the situation is not properly controlled, it can easily induce cardiac disease and stroke, resulting in complications of the eyes, kidney and lower extremity blood vessels, and can even cause blindness, kidney dialysis and amputation. Diabetic patients, therefore, have to regularly receive various examinations. The early discovery of lesions and early treatment could avoid the threat to life and effects on quality of life. Furthermore, being diagnosed as suffering from hypertension might be a protective factor for patients, as they would listen to physicians’ suggestions to improve their health behaviors and further reduce death risks ,15. The Health is a basic human right. Along with time advance, the citizens stress more on personal health and security that lengthening and improving national healthy life expectancy and maintaining the quality of life are the expected goals of health policies. Moreover, chronic diseases are the main cause of elderly health and major diseases for the public, particularly cardiovascular disease, diabetes, and hypertension-related diseases. Cardiovascular disease does not appear obvious symptoms in the early stage that it is easily ignored. However, in consideration of the disease burden, it is a major disease that could not be ignored. In terms of diabetes, improper control of diabetes would result in complications of cardiac disease, stroke, kidney disease, retinopathy, and amputation to seriously affect people’s health and huge disease burden. Although the government continuously promote diabetes joint care network to promote diabetes care quality, including glycated hemoglobin, blood lipids, retina, kidney disease examinations of diabetic patients at least once a year, and diabetes quality payment service programs, there is space for progress.With the legal regulations and health promotion of the Ministry of Health and Welfare in past years, risk factors in cardiovascular disease behavior control have been improved. For the elderly to have daily independence and autonomous ability, prevention from diseases is considered to be the most economical method, in addition to the promotion of prevention service rather than treatment after the onset of disease. From the viewpoint of economics, improving physical conditions through effective behavior control  could directly reflect on patients’ health indicators . From the perspective of a governor, improving physical conditions through effective behavior control could be regarded as an economic behavior in that the importance of health behavior control should be reinforced, such as by increasing physical activity and social activity, to effectively promote quality of life and self-perceived health and assist in the promotion of social support. In addition, to reduce risks of cardiovascular disease and even other related diseases, the economic burden caused by related diseases could be further reduced to maintain elderly healthy life in old age. Integrating effective economic behavior into policies, therefore, is important for the decision-making authorities.In conclusion, the results of analyzing TLSA indicated that the life expectancy of females would be higher than males in the middle-aged and elderly group. By contrast, males would have a higher percentage of remaining life with no functional incapacity than females. In other words, females have worse health conditions than males in the elderly group. Regarding the disease status under the same condition as age and gender, the elderly with diabetes would have a shorter healthy life expectancy than the elderly with hypertension. However, the elderly with hypertension have a lower percentage of remaining life with no functional incapacity than the elderly with diabetes. Our findings could contribute to encourage self-promotion for the elderly and provide insights for healthcare decision-makers.


While the majority of deaths in high-income countries currently occur within institutional settings such as hospitals and nursing homes, there is considerable variation in the pattern of place of death. The place of death is known to impact many relevant considerations about death and dying, such as the quality of the dying process, family involvement in care, health services design and health policy, as well as public versus private costs of end-of-life care. The objective of this study was to analyse how the availability and capacity of publicly financed home-based and institutional care resources are related to place of death in Norway.This study utilized a dataset covering all deaths in Norway in the years 2003–2011, contrasting three places of death, namely hospital, nursing home and home. The analysis was performed using a multilevel multinomial logistic regression model to estimate the probability of each outcome while considering the hierarchical nature of factors affecting the place of death. The analysis utilized variation in health system variables at the local community and hospital district levels. The analysis was based on data from two public sources: the Norwegian Cause of Death Registry and Statistics Norway.Hospital accessibility, in terms of short travel time and hospital bed capacity, was positively associated with the likelihood of hospital death. Higher capacity of nursing home beds increased the likelihood of nursing home death, and higher capacity of home care increased the likelihood of home death. Contrasting three alternative places of death uncovered a pattern of service interactions, wherein hospital and home care resources together served as an alternative to end-of-life care in nursing homes.Norway has a low proportion of home deaths compared with other countries. The proportion of home deaths varies between local communities. Increasing the availability of home care services is likely to enable more people to die at home, if that is what they prefer. The organization of end-of-life (EoL) care in high-income countries has undergone major shifts. Increasing capacity in institutional care during the twentieth century led to fewer home deaths and a corresponding increase in hospital and nursing home deaths –3. WhilePeople generally wish to die at home , 9, but The objective of this study was to analyse how the availability and capacity of home-based and institutional care resources are related to PoD, utilizing a dataset covering all deaths in a national population, i.e. covering all ages and causes of death. We contrasted three PoDs, namely hospital, nursing home and home, while considering the hierarchical nature of factors affecting the PoD. More specifically, we wished to examine how the availability and capacity of care resources in Norwegian municipalities and hospital districts were associated with the PoD, controlling for individual and contextual factors related to the demand for EoL care. Our analysis covered the entire population, i.e. all deaths in Norway, for the period 2003–2011. This approach enabled us to consider both time variation and cross-sectional variation in service availability and capacity.In the analysis of PoD decisions, we decided to build on Andersen and Newman’s  frameworIn line with Andersen and Newman’s  framewori][ probability of PoD depends on a vector of individual characteristics I and municipal-levelm][, there is a vector of hospital capacity characteristics C.Hence, in modelling the choice between PoD in patients’ homes, nursing homes and hospitals, we built on the assumption that PoD decisions can be expressed as a function of patient characteristics, population characteristics of municipalities, the capacity of home-based care and institutional care within municipalities, the capacity of hospital care within hospital districts and the geographical accessibility to services in terms of travel times measured at the municipal level. In the form of an equation, it can be expressed as:The variables at each level, the data sources and number of observations are shown in Table individual-level characteristics (Ii) in the form of year of death, age at death, gender, marital status and main underlying cause of death (CoD). The remaining data were collected from SSB, except for data on travel time to hospitals, which were available from a previous study [Contextual variables included municipal population characteristics (Pm), such as the death rate, demographic (age) distribution, marriage rates, female employment rates and population size. Health service system resources included volume measures of service capacity distributed at the municipal and hospital district levels. Municipal service capacity (Cm) included a measure of the home-based care capacity, in the form of labour costs of home-based care as a percentage of total labour costs within municipal LTC, and a measure of institutional care capacity, in the form of the number of nursing home beds per 100 population aged 80+ years. We also included municipal LTC nursing capacity in the form of a count of full-time nursing positions per 100 population aged 67+ years. Our final capacity measure was the (somatic) hospital bed rate at the hospital district level (Ch). Service system organization was captured both by including variables for different services at different levels and by including variables reflecting geographical accessibility. Average travelling time to the municipal centre was included as a proxy for distance to municipal services. Hospitals may have different functions, and thus we separated them into local hospitals, hospitals with additional speciality functions and regional hospitals. The latter two types also serve as local hospitals for some municipalities. Hospital districts typically include several hospitals. A regional hospital is found in four of the hospital districts. Accessibility to hospital care included four variables: i) whether a hospital is located in the municipality, ii) average travel time from municipal centre to nearest local hospital, iii) nearest hospital with additional speciality functions and iv) nearest regional hospital.The operationalization of the model was restricted by data availability. The analysis was based on data from two public sources: the Norwegian Cause of Death Registry (NCoDR) and Statistics Norway (SSB). Data on the decedents’ PoD, our dependent variable, were collected from the NCoDR. We only considered PoD at home, in nursing homes and in hospitals. ‘Nursing homes’ included all institutional deaths not included in the hospital category. The NCoDR provided all us study . ContextThe collected data were structured into four measurement levels. Hospital districts were at the highest level. The hospital districts encompass a varying number of municipalities, which represent the second highest level. Within these two administrative levels, we have repeated yearly measurements (third level), within which the individual-level data were nested (fourth level). Because a multilevel analysis was especially suited to estimate models of hierarchical data structures such as this and because PoD had three discrete outcomes, we selected a multinomial logistic regression model to estimate the probability of each outcome.N = 69,887) within year, hospital district and PoD. We report the mean results for the relative risk ratio (RRR). The 95% confidence interval for the mean and standard error of the RRR from the 100 regressions were at the mean value or with ±0.01 for all variables except for the mean RRR of home versus nursing home death for the age group 0–49 years, which were within ±0.03. The analyses were performed using MLwiN version 3.00 and STATA/MP 14.0.Of the approximately 374,000 deaths in Norway in the years 2003–2011, approximately 22,000 were excluded either due to missing PoD (1.5%) or belonging to the category ‘other places’ (4.4%). Another 2465 were excluded due to missing information on municipal-level characteristics. The number of municipalities included from year to year varies from 423 to 428 due to both missing data and municipal mergers. Each municipality was assigned to a hospital district, and we maintained the number of hospital districts as 43 over the period. The municipality of Oslo  has historically been divided into several acute hospital districts, but because the organization of the hospital catchment areas in the capital area had undergone multiple changes during the study period, we treated the hospitals in the capital area as one. The data had a four-level nested structure  and the dependent variable was multinomial . The analyses were performed with both hospital and nursing home as a reference category to capture all three relevant comparisons. Because of the sheer size of our dataset, estimation capacity restraints made it difficult to perform multilevel multinomial regression analysis on the entire sample. Instead, we drew 100 random 20% bootstrap samples  increased the likelihood of dying in a hospital. Increased average travel time to hospitals with specialized functions increased the likelihood of hospital and home deaths versus nursing home death. No significant associations were found for average travel time to the municipal centre or nearest regional hospital.Of the context variables included at the municipal level, we found that a higher population proportion of young elderly (67–79 years) increased the likelihood of nursing home death versus hospital death, whereas an increased proportion of elderly in the age group 80–89 years reduced the likelihood of home death versus hospital death. Populations with higher marriage rates were associated with lower likelihood of nursing home death, while higher proportions of female employment increased the likelihood of nursing home death, and also reduced the likelihood of home death versus hospital death. The likelihood of home versus hospital deaths was lower in municipalities with a population between 10,000 and 50,000 compared with the smallest municipalities with a population under 5000.The results of the individual-level variables gender and age were consistent with findings of the descriptive statistics, i.e. that the likelihood of home death was lower for women than men and decreased with age , while the opposite relationships were found for nursing home deaths. Unmarried people were more likely to die in nursing homes than married, widowed and divorced people. Unmarried people were also more likely to die at home as opposed to hospital than married and widowed persons. The results for CoD showed that the likelihood of nursing home death was very high for dementia and high for cancer and respiratory diseases but low for diseases of the circulatory system and external causes. The relative risk of home death compared with that of hospital death was higher for dementia, circulatory diseases and external causes, and lower for cancer and respiratory diseases.Similar to many high-income countries, there was a significant decrease in the rate of hospital deaths and an increase in nursing home deaths in Norway in the period under study. This trend can partly be attributed to demographic and epidemiological shifts affecting the composition of decedents. More female deaths, higher age at death and fewer deaths caused by circulatory diseases were some of the underlying causes . This stAccessibility and capacity of services were clearly associated with PoD. The results revealed both expected patterns of ‘pull factors’, as well as indicated service interactions affecting PoD. These are summarized in Table As expected, hospital accessibility  and capacity (somatic bed rate) increased the likelihood of hospital death. High capacity of nursing home beds increased the likelihood of nursing home death, while a high proportion of LTC spending on home care increased the likelihood of home death. More surprising, perhaps, was the finding that long travel time to the nearest hospital with more specialized functions appeared to serve as a pull factor towards hospital death. The most likely explanation for this finding is that patients potentially in need of specialized hospital services are more likely to be admitted as a precautionary measure and at an earlier time if the travel time is high. The capacity of nurses in LTC was found to function as a pull factor towards nursing home death. Because we were not able to separate nurses by their place of work , it is unclear whether this reflects a higher capacity of nurses in nursing home care or a general high nurse capacity.The PoD occurs within a closed health service system with a zero-sum outcome, because people end up dying only in one place, and the system factors that increase the likelihood of death in one particular place will be perfectly balanced by a corresponding total reduction in the likelihood of death in the alternative locations. What is interesting, notably from a policy perspective, is how these effects are balanced between the alternative locations. For instance, while increased hospital capacity reduced the likelihood of dying in a nursing home, not only compared with dying in a hospital, but also compared with dying at home, it did not affect the likelihood of death at home versus in hospital. Similarly, it can be observed that higher relative spending on home care reduced the likelihood of dying in a nursing home compared with dying in a hospital. When these effects are observed together, a pattern of service interdependence or interaction emerges, wherein hospital and home care resources together serve as an alternative to EoL care in nursing homes.The two ‘pull factors’ towards nursing home death influenced the relative risk of home death versus hospital death differently. Bed capacity in nursing homes affected the likelihood of home death, but not that of hospital death, and decreased the relative risk of home death versus hospital death. Moreover, nursing capacity in LTC appeared to influence hospital deaths the most, increasing the relative risk of home death versus hospital death. One possible explanation for these differences may be that higher bed capacity contributed to more elderly people residing permanently in nursing homes and therefore increasing the likelihood of dying in nursing homes as opposed to a home setting, while higher rates of nursing staff in municipalities contributed to nursing homes being real alternatives to hospitals as EoL care settings. In 2011, approximately 40% of all people who died in nursing homes were on short-term stay, including observation, treatment, rehabilitation, respite and day stay. Nearly one-fifth of people dying in hospital the same year were admitted from a nursing home, of whom 53% were admitted after a short nursing home stay.The current policy in Norway is to integrate and strengthen the competency in EoL care in the ordinary health and long-term services to ensure good and coordinated patients’ pathways for all dying patients . There iA positive association between hospital bed rates and hospital deaths was also found in previous studies , 27–30, We did not find any study with analyses comparable to our analyses of the effects of travel time to hospital. Urban residency can perhaps serve as a proxy for nearness to hospital. Several studies supported more hospital deaths , 41–45 aWe identified significant context effects on PoD. We found mixed effects of the age composition variables, probably reflecting that high population numbers in different elderly age segments affect the demand for services differently. The reduced likelihood of nursing home death in municipalities with a high proportion of married adults may reflect different EoL care preferences and/or different informal care capacity. Interestingly, we found a strong effect of female work participation on nursing home death. This could reflect that nursing homes represent labour-intensive services with a high rate of female employment, and in this sense, provide another measure of nursing home capacity, and/or that high female work participation reduces preference for home death, including the informal caregivers’ preferences, which have been previously shown to influence PoD .Finally, the association between PoD and individual characteristics of the deceased found in this study are broadly in line with previous research findings. Lower likelihood of hospital death for women than men is in line with numerous studies on broad decedent populations , 50, 51.The pattern of PoD for individual-level variables is likely to vary over time, as shown by Dasch et al. , reflectA strength of our study is our comprehensive population dataset, which includes both cross-sectional and time variations in PoD and system characteristics. Another strength is that we explicitly modelled the two-level structure of service organizations and included variables characterizing the services at both levels, while at the same time controlling for individual and contextual factors. Typically, many studies ignore the nested structure of data and clustering of observations at higher levels. This can lead to serious problems of overconfidence in the results on especially higher-level variables because ignored clustering will generally cause standard errors of regression coefficients to be underestimated. Hence, a major strength of our study is that we used a multilevel analytical approach, allowing for variation at all levels. Finally, we applied a multinomial model, i.e. allowing for several contrasts, which provided a more comprehensive picture of system effects and service interactions.There are some important limitations of this study. First, we only observed PoD and not the place of EoL care. Second, we did not know the quality of services received, or whether the person received special palliative care. Third, we were not able to control for place of residence, and in many cases, the nursing home will also be the place of residence. Fourth, the care needs of dying people and the length of their care needs could be a major consideration in where people die. Unexpected sudden serious health issues such as pain can influence the PoD. We were unable to control for such major influences on the PoD. Finally, this study was part of a larger project on EoL service utilization, which involved complex data linkages and time-consuming negotiations with data owners; thus, the last year covered in our data is 2011. Important changes in the health care system have occurred since then; most importantly, the Coordination reform was introduced in 2012. On analysing the national statistics for PoD during the period 2012–2018, we found an increase in out-of-hospital institutional deaths and a decrease in hospital and home deaths. Hence, this is a continuation of the trend found in our data from before the Coordination reform [There is substantial variation in the PoD between municipalities and hospital districts in Norway, not only reflecting differences in decedents’ characteristics, but also local circumstances, such as nearness to hospital and service capacities. It has been a core value for palliative care to enable people to make choices about their EoL care and PoD. People generally prefer to die at home, and Norway has a low proportion of home deaths compared with other countries. The proportion of home deaths varies considerably between local communities. Increasing the availability of home care services will likely provide people a more active voice in the decisions tied to their PoD, allowing more people to die at home, if that is what they prefer. In addition, these findings may have important policy implications for the EoL care in other countries with demographic and epidemiological trajectories similar to those in Norway. Further studies in other national contexts should be undertaken to support such conclusions.


Introduction: The implementation of Indonesia National Health Insurance (NHI) for oral health needs to be evaluated by observing the dental disease patterns and dental therapy patterns from community health centers (CHCs) in the rural area, suburban area, and urban area. The aim of the study is to describe the characteristics of dental services in rural, suburban, and urban areas after the implementation of NHI on CHCs in the Special Region of Yogyakarta in 2014.Materials and methods: This is an observational study with a cross-sectional research design. The study used quantitative data obtained from dental records at selected CHCs. Using a purposive sampling method, 30 CHCs as unit analysis were collected from rural, suburban, and urban areas. The data were collected from January 2014 to December 2014.Results: Data from 26,554 patients were collected from dental records of dental clinics at CHCs. There were 5829 patient dental records from rural areas, 12,327 from suburban areas, and 8938 from urban areas. The primary dentist tends to provide services without clinical intervention on periodontal problems, abscesses, and lesions. Clinical interventions were mostly provided for prolonged retention and deposits on teeth. Primary dentists in suburban areas tend to provide clinical intervention on caries disease compared to those in rural and urban areas. Statistically significant differences (p < 0.05) were observed among locations in the pattern of providing clinical interventions on caries, abscess, lesion, prolonged retention, deposits on teeth, and other problems. No difference was recorded only on periodontal disease.Discussion: This study found that each area has different characteristics of dental disease and dental therapy patterns. Each area has a significant difference in the pattern of the clinical intervention of dental disease except in periodontal problems. In 2014, the Indonesian government launched the National Health Insurance (NHI) system, which includes dental services. This policy was created as a result of the resolution passed by the World Health Assembly, which urged countries to develop health financing systems that would allow all people to have access to the required services .In Indonesia, community health centers (CHCs) play an important role in the NHI program by delivering comprehensive and integrated health services to the community under the authorization of the district health office. Indonesian CHCs have been the subject of studies on the implementation of the national program through required monitoring and reporting, which extends to dentists as providers of public services. Information and characteristics on dental diseases and therapies can be used by the district health office to improve their performance. The changes in dental disease patterns in the population reflect systematic efforts made by dental health services regarding preventive and curative dental care . Owing tDecision makers must have reliable information and the capacity to assess health needs, choose intervention strategies, design appropriate policy options for local or national circumstances, monitor performance, and manage changes. The World Health Organization has strengthened the surveillance of non-communicable diseases at global, regional, and national levels over recent years. This has been done for several reasons. Firstly, surveillance offers a systematic approach to data collection and helps countries monitor and evaluate emerging disease patterns and trends. Secondly, the government can formulate policies and programs to prevent disease and to measure the progress, impact, and efficacy of preventive efforts already in operation. Thirdly, surveillance systems may help strengthen health care provision and supply evidence for introducing procedures, programs, and policies .Unfortunately, dental services either receive minor attention or are ignored altogether. A behavior model of the dental care process should capture different reasons for the dental visit. In a given population, individuals can be divided into two groups, namely, symptomatic and asymptomatic. Both groups may choose to visit or avoid visiting the dentist. The former group chooses to visit primarily to eliminate symptom(s), while asymptomatic patients visit the dentist to prevent future problems. If signs of disease are detected during an oral examination , asymptomatic patients may seek therapy to prevent minor problems from becoming major ones in the future .In the developing and developed world, many rural individuals must travel substantial distances to obtain primary medical care, requiring significantly longer travel times to reach care than their urban counterparts . FurtherIn Indonesia, individuals with the same needs for dental care who have different abilities to pay for that care may not receive equal dental therapy. The perceived need for utilization of dental care was found to be low among Indonesians; moreover, the rate of unmet dental care needs is relatively high . PatientIndonesia is a developing country with a large population, which is the fourth most populous country. The Basic Health Survey conducted by the Indonesia Ministry of Health  showed tIn ecological research, the urban–rural gradient is described via various indicators, which can be classified into three basic groups: (1) demographic variables; (2) physical variables such as density of roads or buildings, percentage of urban land cover, or distance from an urban center; and (3) landscape metrics such as the mean size or fractal dimension of patches of land . CoombesThe Special Region of Yogyakarta, Indonesia, consists of four districts and one municipality with a high population density. In fact, this density problem in Yogyakarta Province reflects a major problem in all of Indonesia, which is the unequal distribution of the population between rural and urban areas. Based on a report by Central Bureau , public In addition, there are no available data for oral disease patterns and dental therapy pattern in this region that meet the NHI's standards for tracking changes in the dental service characteristics. Therefore, the aim of the study is to describe the characteristics of dental services in rural, suburban, and urban areas after the implementation of NHI on CHCs in the Special Region of Yogyakarta in 2014.This is an observational descriptive study with a cross-sectional research design. The study used quantitative data obtained from dental records of NHI participants who have visited at CHCs in four regions and one municipality in the Special Region of Yogyakarta. All of the CHCs in the Special Region of Yogyakarta have a dental clinic. The selected CHCs' dental clinics were determined based on similar demographic and condition in several CHCs in each area. The population density appears in Yogyakarta Municipality and Sleman Regency, which has the highest density despite its small area; thus, it can be classified as an urban area. Meanwhile, the Bantul and Kulonprogo Regencies are located far from city centers and are labeled as suburban areas. The Gunung Kidul Regency, which is far away from city centers and has the lowest density despite its large area, is labeled as a rural area.The urban areas have 43 CHCs, found in Yogyakarta Municipality with 18 CHCs and Sleman Regency with 25 CHCs. The suburban areas have 48 CHCs, found in Bantul Regency with 27 CHCs and Kulonprogo Regency with 21 CHCs, and rural areas (Gunung Kidul Regency) have 30 CHCs. Thus, the total number of CHCs at the Special Region of Yogyakarta is 121 CHCs.Purposive sampling was used to define 30 CHCs from 121 CHCs as a unit analysis for this research. The selection of CHCs for each area was conducted using a purposive sampling method based on inclusion criteria. The inclusion criteria for selected dental clinics were having a cooperation agreement with Badan Pengelola Jaminan Sosial  for at least 1 year, willing to cooperate, having complete dental equipment in accordance to standard dental package equipment guidelines from the Health Ministry, and having a good administration for collecting data. Dental clinics at CHCs that did not meet the above criteria were excluded.The surveyor collected data from dental records at the clinics. These data were used to describe the implementation of CHC dental services from January 2014 until December 2014 in CHCs in rural, suburban, and urban areas. The observation of dental records was conducted to determine two domain patterns:The dental disease patterns are the data that will give a brief description of the specific pattern for dental disease in each area . The dental diseases are defined from Indonesia Health Ministry regulation No. 62 imposed in 2015 about practical guidelines for primary dentists in Indonesia. There are 26 diseases in the practical guidelines for Indonesia's primary dentists to be implemented by the Indonesian National Health Insurance (NHI).Dental therapy pattern. These are the therapy data that have been delivered by the dentists for each dental disease. Dental therapy pattern will be defined from Indonesia Health Ministry regulation No. 62 imposed in 2015 about practical guidelines for primary dentists in Indonesia. There are eight dental therapies in the practical guidelines for Indonesia's primary dentists to be implemented for Indonesian NHI.Calibration was conducted to minimize errors created by the observer or during transcription and notation of the medical records. Because the Indonesia Ministry of Health's regulation No. 62 was established after the NHI was implemented, it is possible that some of the diagnoses and dental therapies may have been written differently by primary dentists at CHCs. Based on this condition, the observers had to be dentists in order to interpret the diagnoses and dental therapies found in the medical records. This study involved four main observers, who graduated from the School of Dentistry, University Muhammadiyah Yogyakarta at least 1 year prior to the study. Through an interactive calibration session, they were trained to transcribe a medical record into a standard code and to enter it into the software that was developed for this study. The typical codes for diagnoses and dental therapies were based on the International Classification of Diseases 10 and International Classification of Therapy 9  as per the Indonesia Ministry of Health's regulation No. 62. If there are different diagnoses and if dental therapy has been written differently by the primary dentist at CHCs, a new code will be created since it is not in agreement with the code of the Indonesia Health Ministry regulation No. 62 imposed in the year 2015.2).This research has been reviewed and approved by the Ethics Committee of the Medical Faculty and Health Science of Muhammadiyah University Yogyakarta. All selected CHCs used in this study have obtained permits through the appropriate bureaucratic mechanism in their respective regions. SPSS 25 has been used for statistical analysis, and the interdependence of characteristics was evaluated by chi-square (χn = 8107), followed by children ages 0–16 years (n = 6844), and older adults ages 46–65 years (n = 6233).Data were collected from a total of 26,554 patient dental records at CHCs' dental services in the Special Region of Yogyakarta. The data were derived from files of patients' dental records as a participant of NHI who has visited CHCs' dental services in 2014. There were 5,829 patient dental records from rural areas, 12,327 from suburban areas, and 8,938 from urban areas. Suburban areas had the highest patient visit rates for dental services, while the lowest visit rates came from rural areas. Patients' demographic data, such as economic status (based on the patient's job description), gender, and age were also recorded. Unfortunately, socioeconomic data could not be presented here because not all primary dentists filled the patients' job descriptions at dental records. In fact, it was found that several primary dentists at CHCs did not collect any socioeconomic background on their patient records. Patient age categories were based on the Indonesian Ministry of Health classification. The age group with the highest number of visits was adults ages 26–35 years . Third molar impaction was prevalent in all areas, with the highest prevalence in urban areas. The 15 diagnoses that do not fit with the coding are as follows: third molar impaction, abscess with trismus, malocclusion, post-extraction infection/dry socket, carcinoma, tumor, xerostomia, mucocele, exfoliation of teeth due to systemic causes, radicular cyst, broken bridge, broken partial denture, epulis, rudimentary teeth at palate, and unspecified dental disease . There were 9 types of diseases found in rural areas, 14 in suburban areas, and 3 in urban areas that did not fit the standard codes. This indicates that the suburban areas have a greater variety of dental diseases than the other two areas. It is noteworthy that all three areas shared three dental diseases that did not fit the standard codes, namely, third molar impaction, post-extraction infection/dry socket, and malocclusion.Dental examinations were the most common dental therapy delivered in CHCs in the Special Region of Yogyakarta . In addiThe differences in dental therapy patterns are indicative of various dental conditions in the Special Region of Yogyakarta. A total of 2,514 therapies (10.23%) were found that did not fit the Ministry of Health's standard codes. This indicates differences in the therapy approaches among primary dentists in the region.There were seven types of dental therapies in rural areas that did not fit standard codes, eight in suburban areas, and six in urban areas. Suburban areas had the highest provision of dental therapy  compared to rural  and urban  areas. Interestingly, the most favored therapy for solving irreversible pulpitis and initial hyperemia was lesion sterilization by tissue repair (3 Mix MP). This treatment was most prevalent in suburban areas, and the use of 38 endodontic therapies was also shown in urban areas, which is not found in the other two areas.There were clear differences in the number of dental health facilities between rural, suburban, and urban areas. Urban areas had the highest number of referrals , which was not in line with the disease pattern data. It seems that the availability of many optional dental health facilities in the urban area led to urban dentists referring cases to other facilities.p < 0.05) were observed among locations in the pattern of providing clinical interventions on caries, abscess, lesion, prolonged retention, deposits on teeth, and other problems. No difference was recorded only on periodontal disease.The resulting data from dental diagnoses and dental therapies could be presented and analyzed with chi-square as category data. The diagnosis data have been categorized as caries disease, periodontal diseases, abscess, lesion, prolonged retention, deposits on teeth, and other problems. Dental therapies could be categorized into clinical intervention and without clinical intervention . Characteristics of the clinical intervention pattern are shown in Past research has documented the differences between urban and rural health care, usually expressed in terms of health care access, utilization, and services . By utilThe major problems of oral health at CHCs are necrosis of the pulp and periodontal problem; this could present as a risk factor for dentists who have implemented the NHI with capitation funding scheme. This result is a factor that makes the implementation of the NHI difficult. This finding is in line with the result of primary dentists who perceive capitation revenue as not suitable for carrying out dental services. This result adds to the anxiety experienced by dentists due to the implementation of the NHI . The disIn the dental therapy pattern, it is obvious that the implementation of the NHI for oral health in Indonesia has a policy problem, which is the determination of eight dental treatments as part of the benefit package and the amount of the capitation, wherein primary dentists face problems in terms of dental diseases that are not covered by the NHI. The primary dentist seems to choose the symptomatic treatment to delay the problem rather than solving the problem. This could be due to the fact that premedication treatment at CHCs does not incur any cost to deliver this treatment. As a public service, drugs should be provided by the local government and distributed to each CHC monthly. Hence, the primary dentist does not have any drug expenditure for this dental treatment that could be used. This is the reason why premedication is the primary dental therapy pattern.In the implementation of the NHI, the primary dentist should be the “gatekeeper”; this scheme was written in the “Practical Guide of Gatekeeper Concept Health Facilities BPJS Health.” As a gatekeeper at the first level of health services, the primary dentist should have four functions: being the first contact, continuity, comprehensive health care, and coordination. It seems that due to many optional dental health facilities in urban areas, the urban dentist tends to refer several cases to other dental health facilities. This condition exposes primary dentists in urban areas not implementing the gatekeeper function, especially to deliver continuity, comprehensive health care, and coordination. This finding was similar with that of the study of Budiarto and Oktarina , which sEach area shared a major dental problem, which is necrosis of the pulp. However, the dental therapies provided were primarily symptomatic therapies (premedication). This indicates that primary dentists only delay dental problems rather than solving them. This was shown by the prevalence of premedication and consultation as the main therapies provided in all areas. Patients seeking care for emergency dental issues often received temporary therapy through symptomatic relief (antibiotics and narcotics), which does not definitively treat the underlying disease process .Indonesia's NHI has increased the probability of individuals seeking outpatient and inpatient care. This impact is stronger in suburban areas, which likely comes from self-employed individuals or people who worked in the informal sector. This finding is consistent with evidence from other countries . Based oCharacteristics of the clinical intervention pattern show that the primary care dentist tends to provide services without clinical intervention on periodontal problems, abscesses, and lesions. Primary dentists at the Special Region of Yogyakarta mostly provided clinical intervention for prolonged retention and deposits on teeth. The extraction of the deciduous teeth was the most preferred therapy, which is in line with the disease pattern. This may be because extraction of the deciduous teeth is a therapy that does not require complex equipment and materials. It seems that the primary dentists in the Special Region of Yogyakarta choose convenient dental therapies that do not require complex equipment or materials.Interestingly, primary dentists in suburban areas tend to provide clinical intervention on caries disease compared to those in rural and urban areas. The suburban area exhibits a transitional change of disease pattern. There is a change of sequence pattern for irreversible pulpitis disease and dental caries on pit-fissure penetrating into dentin disease in suburban areas. Primary dentists in suburban areas deliver the LSTR (the lesion sterilization by tissue repair) treatment higher than other areas, and endodontic treatment is provided, which is not provided in other areas. This circumstance indicates that the suburban dentist tends to deliver the dental treatment compared with other areas. In the pattern of providing clinical interventions on caries, abscess, lesion, prolonged retention, deposits on teeth, and other problems in each area, there were no differences recorded. The similarity among each area in terms of clinical intervention approach was only found for periodontal disease problems.Suburban areas have a higher rate of patient visits with various types of dental diseases and urban areas have a moderate visit rate and better patient awareness of dental health; thus, networks should be created between dental facilities to maintain dental services. Finally, this study revealed a lack of preventive or promotive efforts to reduce oral health problems through comprehensive dental care.This study found that each area has different characteristics of dental disease and dental therapy patterns. Each area has a significant difference in the pattern of clinical intervention of dental disease except in periodontal problems.The data analyzed in this study were obtained from dental records at CHCs in the Special Region Yogyakarta Province, Indonesia. However, restrictions apply to the availability of these data and therefore they are not publicly available. Nonetheless, data are available from the authors upon reasonable request.This research has been reviewed and approved by the Ethics Committee of the Medical Faculty and Health Science of Muhammadiyah University Yogyakarta.ID wrote the main text, executed the study, collected data, and drafted and developed the text. SK was responsible for the design and for providing guidance, direction, correction, and constructive criticism, and sharing his valuable knowledge and experience. NW provided academic advice and interpreted the findings. All authors read and approved the final manuscript.The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.