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The paper is addressing aspects of health system sustainability for rare diseases in relation to the current economic crisis and equity concerns. It takes into account the results of the narrative review carried out in the framework of the Joint Action for Rare Diseases (Joint RD-Action) "Promoting Implementation of Recommendations on Policy, Information and Data for Rare Diseases", that identified networks as key factors for health systems sustainability for rare diseases. The legal framework of European Reference Networks and their added value is also presented. Networks play a relevant role for health systems sustainability, since they are based upon, pay special attention to and can intervene on health systems knowledge development, partnership, organizational structure, resources, leadership and governance. Moreover, sustainability of health systems can not be separated from the analysis of the context and the action on it, including fiscal equity. As a result of the financial crisis of 2008, cuts of public health-care budgets jeopardized health equity, since the least wealthy suffered from the greatest health effects. Moreover, austerity policies affected economic growth much more adversely than previously believed. Therefore, reducing public health expenditure not only is going to jeopardise citizens' health, but also to hamper fair and sustainable development.
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Prestação Integrada de Cuidados de Saúde/organização & administração , Equidade em Saúde/organização & administração , Acessibilidade aos Serviços de Saúde/organização & administração , Disparidades em Assistência à Saúde/organização & administração , Doenças Raras/terapia , Prestação Integrada de Cuidados de Saúde/economia , Saúde , Equidade em Saúde/economia , Acessibilidade aos Serviços de Saúde/economia , Disparidades em Assistência à Saúde/economia , Humanos , Avaliação de Programas e Projetos de Saúde , Doenças Raras/diagnóstico , Doenças Raras/economia , Doenças Raras/epidemiologiaRESUMO
Human-dog interaction is the working tool through which the therapeutic, educational and recreational goals of dog-assisted interventions (DAIs) are achieved. A better understanding of the characteristics of this interaction could improve the effectiveness of DAIs. This scoping review addresses the question: how has the human-dog connection been measured in the context of DAIs? After searching the Web of Science and Scopus platforms, only peer-reviewed, primary research studies reporting measures of therapy dog-human interaction, relationship and bond were included. A total of 70 included articles provided information on what was measured (interaction, relationship or bond) and how, as well as the general context (DAIs or experimental situations with therapy dogs). While the majority of the articles identified use behavioural analysis methods to analyse the interaction between the participant/recipient and the therapy dog during DAIs, it was possible to identify some more structured tools that assess the participant/recipient's interaction, relationship or bond with the therapy dog, as well as tools that consider the animal's perspective or focus on the dog-handler dyad, indicating growing areas of research. The tools and methods identified can be used by both practitioners and researchers to further explore aspects of human-dog interaction in the field of DAIs.
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BACKGROUND: Self- and hetero-directed violence (SHDV) is a serious public health problem and a complex phenomenon, influenced by individual and environmental factors. SHDV may occur particularly in moments of personal, economic and/or social crisis. During the COVID-19 pandemic, the ISS-Helplines operators have perceived an increase in psychological distress and self-isolation among callers. The ViolHelp project aimed at identifying potential warning signs and risk factors of SHDV emerging in the activity of the ISS-Helplines (Istituto Superiore di Sanità, ISS, Italian National Institute of Health). MATERIALS AND METHODS: A dashboard collecting warning signs and risk factors of SHDV was developed to be used during the ISS-Helplines activity. RESULTS: In one year of data collection, 135 calls were compiled. In 106 calls, callers referred experienced violence: 72 self-directed violence (SDV), 20 hetero-directed violence (HDV), 14 both. The most frequent warning signs and risk factors for SDV were desire to die (68.6%), previous suicide attempts (31.4%) and threat of self-harm (25.6%); for HDV were depressed mood (32.4%), diagnosis of pathology and/or psychiatric disorders, desire to die, use of psychotropic drugs, and alcohol abuse (29.4%). CONCLUSIONS: The results of this pilot project show the importance of being able to read the warning signs and to create a network that can improve information, prevention and support activities for people at risk of violence and their families.
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COVID-19 , Linhas Diretas , Violência , Humanos , Itália/epidemiologia , Projetos Piloto , Fatores de Risco , Masculino , Feminino , Adulto , COVID-19/epidemiologia , COVID-19/psicologia , COVID-19/prevenção & controle , Pessoa de Meia-Idade , Tentativa de Suicídio/estatística & dados numéricos , Comportamento Autodestrutivo/epidemiologia , Adulto Jovem , IdosoRESUMO
OBJECTIVES: Gender differences in caregiving may determine social and/or health inequalities among family caregivers (FCs). This study aimed to analyse gender specific differences of burden and quality of life (QoL) in FCs belonging to ten different rare diseases (RD). METHODS: Burden levels and QoL data, derived from a sample of 210 FCs of RD patients, were analysed by student t-test, Anova and Kruskal-Wallis followed by multiple comparisons and evaluation of factors, including sex, by correlation and multiple regression analyses. RESULTS: FCs caring for Prader Willi, X-fragile, mucopolysaccharidosis and epidermolysis bullosa patients showed significant higher levels of burden as compared to other RDs. Burden is related to FC's QoL and can be down modulated by the reduction of the number of hours/week devoted to care and by the improvement of patient's QoL. No gender-specific burden differences were observed among all FCs. However, female FCs devoted to care significant more numerous hours/week than men and perceived more emotional/physical burden and poorer psychological health than males. Women, who are more frequently early retired from work, not occupied or homemakers than men, suffered more burden as compared to men in the same conditions. CONCLUSIONS: This study showed gender specific differences in RD caregiving, which are important for planning personalized health prevention policies.
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Cuidadores , Qualidade de Vida , Masculino , Humanos , Feminino , Cuidadores/psicologia , Doenças Raras , Saúde Mental , EmoçõesRESUMO
Heart rate (HR) and heart rate variability (HRV) are commonly used physiological measures in animals. While several studies exist on horse HRV, less information is available for donkeys. This scoping review aims to understand the extent and type of published evidence on donkey HR and HRV, their clinical and research applications, the devices used, and the analysis performed. Only quantitative primary studies published in English were considered. Four different databases were queried through the Web of Science platform, with additional evidence identified by citation chasing. After a two-stage screening phase, data were extracted considering study and population characteristics, information on HR/HRV analysis, and applications. The majority of the 87 included articles (about 80%) concerned a sample size of up to 20 individuals and were published since 2011 (about 65%). Forty-one articles employed an electronic device for signal acquisition (mainly electrocardiographs and heart rate monitors), yet only two articles reported HRV parameters. The literature on donkey HRV is lacking, and this gap can be filled by gaining knowledge on donkey characteristics and finding useful tools for welfare assessment. Comparison with what is known about the horse allows a discussion of the technical and interpretative difficulties that can be encountered with donkeys.
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BACKGROUND: Prostate magnetic resonance imaging (MRI) is now standard for assessment of suspected prostate cancer (PCa). A variety of approaches to MRI-based targeting has revolutionised prostate biopsies. OBJECTIVE: To describe the procedure and show the accuracy and tolerability of a novel Vector MRI/ultrasound fusion transperineal (TP) biopsy technique that uses electromagnetic (EM) needle tracking under local anaesthesia (LA). DESIGN, SETTING, AND PARTICIPANTS: Vector prostate biopsy using BiopSee fusion software, EM tracking technology, and transrectal ultrasound was performed in 69 patients meeting the biopsy criteria in two UK centres between September 2020 and August 2022. SURGICAL PROCEDURE: Stepper-mounted rectal ultrasound images were fused with MRI scans. LA was applied into two defined perineal tracks and a needle sheath with an EM sensor was inserted. The biopsy needle was directed precisely through the sheath to MRI targets under EM tracking. Biopsies were taken without antibiotic prophylaxis. MEASUREMENTS: Cancer detection (any PCa; grade group ≥2), side effects, and patient experience measures were recorded. RESULTS AND LIMITATIONS: Cancer detection in patients with Likert 4-5 lesions was 98% for any PCa and 83% for grade group ≥2. According to the 50 questionnaires returned, 42 patients (84%) reported no or minimal pain, while 40 (80%) reported no or minimal discomfort. No episodes of postoperative urinary retention occurred, and only one patient required treatment for infection. Limitations include the low patient number and incomplete responses to questionnaires. CONCLUSIONS: This novel Vector technique provides a feasible and tolerable procedure for MRI/ultrasound fusion TP biopsy under LA, with high cancer detection rates. This is achieved while maintaining patient comfort and with minimal rates of complications. PATIENT SUMMARY: We report a novel technique that uses electromagnetic needle tracking to perform highly accurate and comfortable prostate biopsies through the perineum under local anaesthetic.
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Próstata , Neoplasias da Próstata , Masculino , Humanos , Próstata/diagnóstico por imagem , Próstata/patologia , Anestesia Local , Neoplasias da Próstata/diagnóstico por imagem , Neoplasias da Próstata/cirurgia , Ultrassonografia de Intervenção/métodos , Biópsia Guiada por Imagem/métodos , Imageamento por Ressonância Magnética/métodosRESUMO
Recognizing animal emotions is critical to their welfare and can lead to a better relationship with humans and the environment, especially in a widespread species like the donkey, which is often prone to welfare issues. This study aims to assess the emotional response of donkeys through an operant conditioning task with two presumed different emotional contents. Specifically, a within-subject design including positive and negative conditions was conducted, collecting behavioural and physiological (heart rate variability and HRV) parameters. Facial expressions, postures, and movements were analysed by principal component analysis and behavioural diversity indexes (frequencies, activity budgets, richness, Shannon and Gini-Simpson). During the positive condition, both ears were held high and sideways (left: r = -0.793, p < 0.0001; right: r = -0.585, p = 0.011), while the ears were frontally erected (left: r = 0.924, p < 0.0001; right: r = 0.946, p < 0.0001) during the negative one. The latter was also associated with an increased tendency to walk (r = 0.709, p = 0.001), walk away (r = 0.578, p = 0.012), more frequent changes in the body position (VBody position = 0, p = 0.022), and greater behavioural complexity (VGini-Simpson Index = 4, p = 0.027). As for HRV analysis, the root mean square of successive beat-to-beat differences (rMSSD) was significantly lower after the negative condition. These non-invasive parameters could be considered as possible indicators of donkeys' emotional state.
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This report illustrates the design and results of an activity of surveillance proposed by the National Centre for Innovative Technologies in Public Health and the National Centre for Rare Diseases of the Istituto Superiore di Sanità with the aim of monitoring the state-of-use of technologies by people with frailty, disabilities, and rare diseases. The results of the surveillance activity reported in this report are as follows: (a) An international Webinar; (b) A Full report published by the Istituto Superiore di Sanità (ISS); (c) an electronic survey tool, for periodic monitoring; (d) an initial summary of the survey (15 September-30 November 2020), giving an overall picture relating to the state-of-use of technologies by the interviewed; (e) an understanding of the needs that emerged, causing reflection on the current state-of-the-art and offering important stimuli for all the stakeholders involved.
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BACKGROUND: Measuring access to assistive technology (AT) has become a global priority. Recently, the World Health Organization (WHO) has developed the rapid assistive technology assessment (rATA), a population-based household survey that measures the use, need, unmet need, and barriers to accessing AT. OBJECTIVE: The aim of this paper is to report on the translation and adaptation process undertaken to implement the rATA survey in the Italian context. METHOD: The Translate, Review, Adjudicate, Pretest, and Document (TRAPD) approach was used to translate and adapt the rATA from English to Italian. Eleven independent reviewers and 23 AT users were involved to validate the Italian translation of the rATA and pilot the survey, respectively. RESULTS: The feedback provided by the first users of the rATA indicate that the data collected are reliable and well reflect the state of AT provision in Italy. CONCLUSION: This study confirmed the applicability of the rATA survey to the Italian context. The Italian version of the rATA can be used to support the government, the health system as well as the civil society to monitor the current state of AT access (and abandonment) in the country.
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Tecnologia Assistiva , Avaliação da Tecnologia Biomédica , Humanos , Itália , Inquéritos e Questionários , Organização Mundial da SaúdeRESUMO
Green Care (GC) and Animal Assisted Interventions (AAI) are recognised practices useful to enhance the wellbeing of people through interaction with nature and animals. This study aims at understanding the interconnections between GC and AAI by analysing deeply which interaction with animals is conducted. Therefore, we carried out a literature search through Web of Science and Google Scholar that allowed retrieval of 993 records; after the PRISMA selection process, 42 were included. Relevant information was extracted: year of publication, geographical location, objectives, settings in agricultural environment, animal species, characteristics of users involved, type of human-animal interaction, coexistence of other activities without animals, animal health and welfare issues. From the review emerged that research on GC with animals is common in high-income countries and that the line between AAI and occupational therapy is often vague. Moreover, the most common setting for these interventions appears to be the farm, and frequently animals involved are not selected according to their ethological characteristics. Users in this context are extremely various and not only involved in activities with animals. Within the included studies, we noted a lack in the consideration of animal welfare that indicates the need for increased awareness among practitioners and a more ethical approach when animals are involved.
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Bem-Estar do Animal , Animais , HumanosRESUMO
Equine-assisted interventions (EAIs) are well-known complementary practices combining physical activity with emotional/cognitive stimulation. They are especially suited for children with autism spectrum disorders (ASD) who need a high degree of physical and psychological enrichment. Even though EAIs have become a common practice, stress responses in horses interacting with individuals that can manifest inappropriate behaviours, such as ASD children, have not been thoroughly investigated. Our multicentre study aimed to investigate behavioural and physiological indices of stress in horses involved in EAI standardised sessions with children with ASD compared to typically developing (TD) children. A controlled within-subject design with repeated measurements involving 19 horses and 38 children was adopted. Stress-related behaviours, heart rate, heart rate variability, and eye temperature were recorded during the riding sessions. Moreover, blood samples were collected from horses before and after each session to monitor changes in blood adrenocorticotropic hormone (ACTH), cortisol, and catecholamines. Results indicate that, in general, stress responses in horses involved in EAIs did not differ as a function of the horse being ridden by children with ASD or TD. A lower sympathetic tone in horses involved in ASD sessions was found, while in the mounting and dismounting phases, horses displayed behavioural signs of stress, independently from children's behaviour. We conclude that professionals working in EAI should increase their awareness of animal welfare and refine riding practices, taking into account horse's needs.
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Background: Cri du Chat syndrome (CdC) is a rare disease caused by the deletion on the short arm of the chromosome 5, with an incidence of 1:15,000 to 1:50,000 live-born infants. No study at international level has assessed the costs, Quality of Life (QoL) and Disability through standardized quantitative tools. The aim is to estimate economic costs related to CdC from a societal perspective, to assess the QoL and Disability in patients with CdC along with their caregivers in Italy. Methods: A cross-sectional study of patients with Cri du Chat in Italy was carried out. A cost of illness approach from a societal perspective was used to estimate cost, and a micro-costing method was adopted. The QoL was measured with EuroQol 5-domain (EQ-5D) questionnaire and Disability by using World Health Organization Disability Assessment Schedule 36 item (WHODAS 2.0). Results: A total of 76 questionnaires were collected from caregivers taking care of 40 adult patients and 36 minor patients. All patients need a carer and the principal caregiver is commonly informal carer or a family member (93%). The EQ-5D VAS score for patients is 65.5 (SD = 22.4) out of 100; while the most important compromised areas of QoL are usual activities and self-care. The overall WHODAS 2.0 score is 65% (0 = no disability; 100 = full disability). The average annual cost of a patient with Cri du Chat in our population is 87,856.24; the main cost item of patients with Cri du Chat syndrome is informal care (i.e., 76,981.69 yearly) since it constitutes the 87% of total costs. Results highlight the burden of CdC in terms of its impact on QoL and Disability for patients and caregivers in Italy, with a score much lower than that of general population. The disease is associated with considerable costs of informal care. Conclusions: Cri du Chat syndrome was found to be linked with a significant socioeconomic impact which is dominated by direct non-healthcare informal costs.
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Síndrome de Cri-du-Chat , Qualidade de Vida , Adulto , Efeitos Psicossociais da Doença , Síndrome de Cri-du-Chat/complicações , Síndrome de Cri-du-Chat/economia , Estudos Transversais , Feminino , Custos de Cuidados de Saúde , Humanos , Itália/epidemiologia , MasculinoRESUMO
The increasingly complex and multidimensional care request, combined with the presence of increasingly aware and demanding patients, accentuates the need for new strategies to preserve health systems economic sustainability. Therefore, integration mechanisms reveal an essential condition for ensuring continuity of care. The paper reviews the main literature available on the integration of heal services and relates it to rare diseases. The literature identifies several system levers for the effective design and implementation of integrated care frameworks, namely: political support and commitment, governance, stakeholder engagement, organisational change, leadership, collaboration and trust, workforce education and training, patient empowerment, financing and incentives, ICT infrastructure and solutions, monitoring and evaluation system.
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Prestação Integrada de Cuidados de Saúde/organização & administração , Doenças Raras/terapia , Política de Saúde , HumanosRESUMO
Rare disease community is one of the largest patient populations in the world estimated to be 350 million of people. Collectively common, rare diseases pose a significant medical and economic burden for health systems worldwide. In this respect, rare diseases are considered a priority of public health. The study is a review aimed to determine whether there is evidence that education plays a key role in building sustainable health system and will allow better health and well-being for people with rare diseases to be achieved. This review shows evidence that providing quality education through different ways and actions the lives of people suffering from a rare disease and their families can be improved.
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Atenção à Saúde/economia , Educação Médica/economia , Educação de Pacientes como Assunto/economia , Doenças Raras/terapia , Humanos , Saúde PúblicaRESUMO
The notion of empowerment is linked to patients' everyday life and is the base allowing for the patient engagement through which individuals and communities are able to express their needs, are involved in decision-making, take action to meet those needs. In the field of rare diseases, empowerment strategies have greater value due to low prevalence, lack of expertise, poor quality of life. Avenues to patient empowerment are: health literacy and capacity-building; shared decision-making; support to self-management. Patient empowerment is recognised as key enabler in creating sustainability as addressing challenges faced by modern healthcare systems in terms of effectiveness, access and resilience. It is recommended to develop a comprehensive EU roadmap on patient empowerment including specific recommendations, taking stock of good practices. This holistic approach should lead to a society where all actors are fulfilled human beings and unmet needs are addressed in compliance with fundamental human rights.
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Atenção à Saúde/organização & administração , Participação do Paciente , Doenças Raras/terapia , HumanosRESUMO
INTRODUCTION: The subjective experience of drug craving is a prominent and common clinical phenomenon for many individuals diagnosed with opioid use disorder (OUD), and could be a valuable clinical endpoint in medication development studies. The purpose of this scoping review is to provide an overview and critical analysis of opioid craving assessments located in the published literature examining OUD. METHOD: Studies were identified through a search of PubMed, Embase, and PsychInfo databases and included for review if opioid craving was the focus and participants were diagnosed with or in treatment for OUD. RESULTS: Fifteen opioid craving assessment instruments were identified across the 87 studies included for review. The most common were the Visual Analog Scale (VAS, 41 studies), Desires for Drug Questionnaire (DDQ, 12 studies), Heroin Craving Questionnaire (HCQ, 10 studies), and Obsessive-Compulsive Drug Use Scale (OCDUS, 10 studies). Craving assessments varied considerably in their format, content, time frame, and underlying subscales, and only 6 of 15 had been psychometrically evaluated. DISCUSSION: This review identified a variety of opioid craving assessments, but few had been evaluated for their psychometric properties making it difficult to ascertain whether craving is being assessed optimally in studies of OUD. Thus, the development of a reliable and valid opioid craving assessment would be worthwhile and could be guided by recently published Food and Drug Administration Clinical Outcome Assessment (COA) guidelines. Importantly, a COA focused on opioid craving could be a valuable addition to research studies designed to evaluate novel treatments for OUD.
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Fissura , Transtornos Relacionados ao Uso de Opioides/psicologia , Inquéritos e Questionários/estatística & dados numéricos , Humanos , PsicometriaRESUMO
Animal assisted interventions (AAI) have become increasingly popular in Western countries during the last fifty years, attracting a lot of attention both from the general public and the scientific community. In Italy, similarly to other countries, this evolution has been accompanied by the diffusion of associations delivering AAI. What is the current state of AAI in Italy? How many realities are dealing with AAI? What professionals and animals are involved? The results of the questionnaire here reported have the objective to answer these questions, outlining a snapshot of the distribution and the main features of AAI within Italian territory. According to the 208 respondents, the sector has seen a remarkable expansion over the last twenty years. AAI providers are located mainly in the North and Centre of the country, the majority of them are arranged in associations or AAI specialized centers and work mainly with dogs and equids in animal assisted activity (AAA) programs addressed to disabled people and children. The picture of the sector still appears fragmented in particular regarding team of professionals involved and their training; nonetheless, the recent set up of national guidelines by the Italian authorities has the objective of standardizing the field and defining best practices for each type of intervention.
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Terapia Assistida com Animais/estatística & dados numéricos , Terapia Assistida com Animais/classificação , Animais , Humanos , ItáliaRESUMO
OBJECTIVES: The present study had a dual purpose: to obtain a comprehensive picture of the Italian medical practitioners' opinions, professional experiences, training needs and knowledge of Animal Assisted Interventions (AAI); and to provide a detailed description of the medical practitioners who are characterized by a strongly positive attitude towards AAI. METHODS: An online survey addressed to Italian medical practitioners was carried out using a 35-items structured questionnaire. Data obtained from the survey were analysed through appropriate summary statistics, analysis of variance (ANOVA) and logistic regression analysis. RESULTS: 670 medical practitioners participated in the online survey. Among them, 508 stated that they knew of AAI. 93.7% of these described themselves fully favourable towards the use of the human-animal relationship for therapeutic purposes, 84.4% defined themselves as confident and interested in studying the theme. A positive attitude towards AAI was greater in females, in people between 45 and 54 years old, in those who are pet owners and in those who believe that conferences are the most suitable tool to share information on AAI. CONCLUSIONS: The chance of having a positive attitude towards AAI is higher in respondents with specific characteristics. Data collected could be used as a starting point to promote and implement communication and training activities on AAI addressed to medical practitioners.
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Terapia Assistida com Animais , Atitude do Pessoal de Saúde , Competência Clínica , Conhecimentos, Atitudes e Prática em Saúde , Médicos , Adulto , Fatores Etários , Idoso , Análise de Variância , Terapia Assistida com Animais/educação , Animais , Conscientização , Feminino , Necessidades e Demandas de Serviços de Saúde , Humanos , Itália , Modelos Logísticos , Masculino , Pessoa de Meia-Idade , Animais de Estimação , Autoeficácia , Fatores Sexuais , Inquéritos e QuestionáriosRESUMO
INTRODUCTION: In the framework of the Joint Action for Rare Diseases (RD-ACTION), a specific task was defined to identify mechanisms influencing sustainability, equity and resilience of health systems for rare diseases (RDs). METHOD: Literature narrative review on health systems sustainability and resilience for RDs. Years: 2000-2015. Databases: PubMed, Scopus, EBSCOHost, EMBAL, PASCAL, EMBASE, STN International and GoogleScholar. ANALYSIS: interpretive synthesis concept and thematic analysis (Dixon-Wood, et al.). RESULTS: 97 papers and 4 grey literature publications were identified. Two main topics stand out: economic evaluation and networks. The first topic did not identify widely accepted criterion to assign more weight to individuals with greater health needs. Healthcare network are identified as increasingly important for sustainability and resilience, in all of their aspects: professional "expertise", "experience" networks of users and carers; policy, learning, and interest networks. CONCLUSION: Possible mechanisms for ensuring sustainability can be identified in networking, patients' empowerment and reorienting healthcare towards integrated community and home care.
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Planos de Sistemas de Saúde , Saúde Pública , Doenças Raras/terapia , Redes Comunitárias , HumanosRESUMO
Drug addiction is a major care and safety challenge in prison context. Nowadays, rehabilitation and specific therapeutic programs are suggested to improve health and well-being of inmates during their detention time and to reduce substance abuse relapse after release from prison. Among these programs, several studies reported the benefits for inmates coming from animal assisted interventions. In this pilot controlled study, we investigated the efficacy of a dog assisted therapy program addressed to 22 drug addicted male inmates housed in an attenuated custody institute in Italy. The study lasted six months, the treated group (12 inmates) was involved once a week for one hour in 20 dog assisted therapy sessions, whereas the control group (10 inmates) followed the standard rehabilitation program. One week before the beginning and one week after the end of the sessions, all inmates involved were submitted to symptom checklist-90-revised and Kennedy axis V. Inmates involved in the dog assisted therapy sessions significantly improved their social skills, reducing craving, anxiety and depression symptoms compared to the control group. Despite the limitation due to the small number of inmates enrolled and to the absence of follow up, we found these results encouraging to the use of dog assisted therapy as co-therapy in drug addicted inmates rehabilitation programs, and we claim the need of more extensive study on this subject.