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INTRODUCTION: The Environmental Determinants of Islet Autoimmunity (ENDIA) Study is an ongoing Australian prospective cohort study investigating how modifiable prenatal and early-life exposures drive the development of islet autoimmunity and type 1 diabetes (T1D) in children. In this profile, we describe the cohort's parental demographics, maternal and neonatal outcomes and human leukocyte antigen (HLA) genotypes. RESEARCH DESIGN AND METHODS: Inclusion criteria were an unborn child, or infant aged less than 6 months, with a first-degree relative (FDR) with T1D. The primary outcome was persistent islet autoimmunity, with children followed until a T1D diagnosis or 10 years of age. Demographic data were collected at enrollment. Lifestyle, clinical and anthropometric data were collected at each visit during pregnancy and clinical pregnancy and birth data were verified against medical case notes. Data were compared between mothers with and without T1D. HLA genotyping was performed on the ENDIA child and all available FDRs. RESULTS: The final cohort comprised 1473 infants born to 1214 gestational mothers across 1453 pregnancies, with 80% enrolled during pregnancy. The distribution of familial T1D probands was 62% maternal, 28% paternal and 11% sibling. The frequency of high-risk HLA genotypes was highest in T1D probands, followed by ENDIA infants, and lowest among unaffected family members. Mothers with T1D had higher rates of pregnancy complications and perinatal intervention, and larger babies of shorter gestation. Parent demographics were comparable to the Australian population for age, parity and obesity. A greater percentage of ENDIA parents were Australian born, lived in a major city and had higher socioeconomic advantage and education. CONCLUSIONS: This comprehensive profile provides the context for understanding ENDIA's scope, methodology, unique strengths and limitations. Now fully recruited, ENDIA will provide unique insights into the roles of early-life factors in the development of islet autoimmunity and T1D in the Australian environment. TRIAL REGISTRATION NUMBER: ACTRN12613000794707.
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Autoinmunidad , Diabetes Mellitus Tipo 1 , Humanos , Diabetes Mellitus Tipo 1/epidemiología , Diabetes Mellitus Tipo 1/genética , Diabetes Mellitus Tipo 1/inmunología , Diabetes Mellitus Tipo 1/etiología , Femenino , Embarazo , Australia/epidemiología , Estudios Prospectivos , Masculino , Niño , Lactante , Recién Nacido , Factores de Riesgo , Adulto , Islotes Pancreáticos/inmunología , Estudios Longitudinales , Estudios de Seguimiento , Efectos Tardíos de la Exposición Prenatal/epidemiología , Preescolar , Padres , Genotipo , Antígenos HLA/genéticaRESUMEN
AIMS/INTRODUCTION: Autoantibodies to pancreatic islet antigens identify young children at high risk of type 1 diabetes. On a background of genetic susceptibility, islet autoimmunity is thought to be driven by environmental factors, of which enteric viruses are prime candidates. We sought evidence for enteric pathology in children genetically at-risk for type 1 diabetes followed from birth who had developed islet autoantibodies ("seroconverted"), by measuring mucosa-associated cytokines in their sera. MATERIALS AND METHODS: Sera were collected 3 monthly from birth from children with a first-degree type 1 diabetes relative, in the Environmental Determinants of Islet Autoimmunity (ENDIA) study. Children who seroconverted were matched for sex, age, and sample availability with seronegative children. Luminex xMap technology was used to measure serum cytokines. RESULTS: Of eight children who seroconverted, for whom serum samples were available at least 6 months before and after seroconversion, the serum concentrations of mucosa-associated cytokines IL-21, IL-22, IL-25, and IL-10, the Th17-related cytokines IL-17F and IL-23, as well as IL-33, IFN-γ, and IL-4, peaked from a low baseline in seven around the time of seroconversion and in one preceding seroconversion. These changes were not detected in eight sex- and age-matched seronegative controls, or in a separate cohort of 11 unmatched seronegative children. CONCLUSIONS: In a cohort of children at risk for type 1 diabetes followed from birth, a transient, systemic increase in mucosa-associated cytokines around the time of seroconversion lends support to the view that mucosal infection, e.g., by an enteric virus, may drive the development of islet autoimmunity.
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Diabetes Mellitus Tipo 1 , Islotes Pancreáticos , Niño , Humanos , Lactante , Preescolar , Citocinas , Seroconversión , Autoinmunidad , AutoanticuerposRESUMEN
BACKGROUND: We sought research experiences of caregivers and their children were enrolled in the Environmental Determinants of Islet Autoimmunity (ENDIA) study. METHODS: ENDIA is a pregnancy-birth cohort investigating early-life causes of type 1 diabetes (T1D). Surveys were sent to 1090 families between June 2021 and March 2022 with a median participation of >5 years. Caregivers completed a 12-item survey. Children ≥ 3 years completed a four-item survey. RESULTS: The surveys were completed by 550/1090 families (50.5%) and 324/847 children (38.3%). The research experience was rated as either "excellent" or "good" by 95% of caregivers, and 81% of children were either "ok", "happy" or "very happy". The caregivers were motivated by contributing to research and monitoring their children for T1D. Relationships with the research staff influenced the experience. The children most liked virtual reality headsets, toys, and "helping". Blood tests were least liked by the children and were the foremost reason that 23.4% of the caregivers considered withdrawing. The children valued gifts more than their caregivers. Only 5.9% of responses indicated dissatisfaction with some aspects of the protocol. The self-collection of samples in regional areas, or during the COVID-19 pandemic restrictions, were accepted. CONCLUSIONS: This evaluation identified modifiable protocol elements and was conducted to further improve satisfaction. What was important to the children was distinct from their caregivers.
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Background: The Environmental Determinants of Islet Autoimmunity (ENDIA) pregnancy-birth cohort investigates the developmental origins of type 1 diabetes (T1D), with recruitment between 2013 and 2019. ENDIA is the first study in the world with comprehensive data and biospecimen collection during pregnancy, at birth and through childhood from at-risk children who have a first-degree relative with T1D. Environmental exposures are thought to drive the progression to clinical T1D, with pancreatic islet autoimmunity (IA) developing in genetically susceptible individuals. The exposures and key molecular mechanisms driving this progression are unknown. Persistent IA is the primary outcome of ENDIA; defined as a positive antibody for at least one of IAA, GAD, ZnT8 or IA2 on two consecutive occasions and signifies high risk of clinical T1D.Method: A nested case-control (NCC) study design with 54 cases and 161 matched controls aims to investigate associations between persistent IA and longitudinal omics exposures in ENDIA. The NCC study will analyse samples obtained from ENDIA children who have either developed persistent IA or progressed to clinical T1D (cases) and matched control children at risk of developing persistent IA. Control children were matched on sex and age, with all four autoantibodies absent within a defined window of the case's onset date. Cases seroconverted at a median of 1.37 years (IQR 0.95, 2.56). Longitudinal omics data generated from approximately 16,000 samples of different biospecimen types, will enable evaluation of changes from pregnancy through childhood.Conclusions: This paper describes the ENDIA NCC study, omics platform design considerations and planned univariate and multivariate analyses for its longitudinal data. Methodologies for multivariate omics analysis with longitudinal data are discovery-focused and data driven. There is currently no single multivariate method tailored specifically for the longitudinal omics data that the ENDIA NCC study will generate and therefore omics analysis results will require either cross validation or independent validation.KEY MESSAGESThe ENDIA nested case-control study will utilize longitudinal omics data on approximately 16,000 samples from 190 unique children at risk of type 1 diabetes (T1D), including 54 who have developed islet autoimmunity (IA), followed during pregnancy, at birth and during early childhood, enabling the developmental origins of T1D to be explored.
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Diabetes Mellitus Tipo 1 , Islotes Pancreáticos , Niño , Recién Nacido , Embarazo , Femenino , Humanos , Preescolar , Lactante , Diabetes Mellitus Tipo 1/etiología , Diabetes Mellitus Tipo 1/genética , Autoinmunidad/genética , Estudios de Casos y Controles , Autoanticuerpos , Predisposición Genética a la EnfermedadRESUMEN
BACKGROUND: The Environmental Determinants of Islet Autoimmunity (ENDIA) study is an Australia-wide pregnancy-birth cohort study following children who have a first-degree relative with type 1 diabetes (ACTRN1261300794707). A dedicated ENDIA Facebook page was established in 2013 with the aim of enhancing recruitment and supporting participant retention through dissemination of study information. To measure the impact of Facebook, we evaluated the sources of referral to the study, cohort demographics, and withdrawal rates. We also investigated whether engagement with Facebook content was associated with specific post themes. METHODS: Characteristics of Facebook versus conventional recruits were compared using linear, logistic, and multinomial logistic regression models. Logistic regression was used to determine the risk of study withdrawal. Data pertaining to 794 Facebook posts over 7.5 years were included in the analysis. RESULTS: Facebook was the third largest source of referral (300/1511; 19.9%). Facebook recruits were more frequently Australian-born (P < .001) enrolling postnatally (P = .01) and withdrew from the study at a significantly lower rate compared with conventional recruits (4.7% vs 12.3%; P < .001) after a median of follow-up of 3.3 years. Facebook content featuring stories and images of participants received the highest engagement even though <20% of the 2337 Facebook followers were enrolled in the study. CONCLUSIONS: Facebook was a valuable recruitment tool for ENDIA. Compared with conventional recruits, Facebook recruits were three times less likely to withdraw during long-term follow-up and had different sociodemographic characteristics. Facebook content featuring participants was the most engaging. These findings inform social media strategies for future cohort and type 1 diabetes studies. TRIAL REGISTRATION: Australia New Zealand Clinical Trials Registry: ACTRN1261300794707.
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Diabetes Mellitus Tipo 1 , Medios de Comunicación Sociales , Niño , Femenino , Humanos , Embarazo , Australia , Autoinmunidad , Estudios de CohortesRESUMEN
OBJECTIVE: Pregnancy and type 1 diabetes are each associated with increased anxiety and depression, but the combined impact on well-being is unresolved. We compared the mental health of women with and without type 1 diabetes during pregnancy and postpartum and examined the relationship between mental health and glycemic control. RESEARCH DESIGN AND METHODS: Participants were women enrolled from 2016 to 2020 in the Environmental Determinants of Islet Autoimmunity (ENDIA) study, a pregnancy to birth prospective cohort following children with a first-degree relative with type 1 diabetes. Edinburgh Postnatal Depression Scale (EPDS) and Perceived Stress Scale (PSS) were completed during the third trimester (T3) (median [interquartile range] 34 [32, 36] weeks) and postpartum (14 [13, 16] weeks) by 737 women (800 pregnancies) with (n = 518) and without (n = 282) type 1 diabetes. RESULTS: EPDS and PSS scores did not differ between women with and without type 1 diabetes during T3 and postpartum. EPDS scores were marginally higher in T3: predicted mean (95% CI) 5.7 (5.4, 6.1) than postpartum: 5.3 (5.0, 5.6), independent of type 1 diabetes status (P = 0.01). HbA1c levels in type 1 diabetes were 6.3% [5.8, 6.9%] in T3 and did not correlate with EPDS or PSS scores. Reported use of psychotropic medications was similar in women with (n = 44 of 518 [8%]) and without type 1 diabetes (n = 17 of 282 [6%]), as was their amount of physical activity. CONCLUSIONS: Overall, mental health in late pregnancy and postpartum did not differ between women with and without type 1 diabetes, and mental health scores were not correlated with glycemic control.
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Autoinmunidad/inmunología , COVID-19 , Diabetes Mellitus Tipo 1/epidemiología , Exposición a Riesgos Ambientales/estadística & datos numéricos , Estudios Observacionales como Asunto/métodos , Australia/epidemiología , Preescolar , Diabetes Mellitus Tipo 1/inmunología , Femenino , Humanos , Lactante , Masculino , SARS-CoV-2RESUMEN
BACKGROUNDS: We aimed to monitor pancreatic exocrine function longitudinally in relation to the development of islet autoimmunity (IA) and type 1 diabetes (T1D) in at-risk children with a first-degree relative with T1D, who were followed prospectively in the Environmental Determinants of Islet Autoimmunity (ENDIA) study. METHODS: Fecal elastase-1 (FE-1) concentration was measured longitudinally in 85 ENDIA children from median age 1.0 (IQR 0.7,1.3) year. Twenty-eight of 85 children (progressors) developed persistent islet autoantibodies at median age of 1.5 (IQR 1.1,2.5) years, of whom 11 went on to develop clinical diabetes. The other 57 islet autoantibody-negative children (non-progressors) followed similarly were age and gender-matched with the progressors. An adjusted linear mixed model compared FE-1 concentrations in progressors and non-progressors. RESULTS: Baseline FE-1 did not differ between progressors and non-progressors, or by HLA DR type or proband status. FE-1 decreased over time in progressors in comparison to non-progressors (Wald statistic 5.46, P = .02); in some progressors the fall in FE-1 preceded the onset of IA. CONCLUSIONS: Pancreatic exocrine function decreases in the majority of young at-risk children who progress to IA and T1D.
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Autoinmunidad/fisiología , Diabetes Mellitus Tipo 1 , Islotes Pancreáticos/inmunología , Páncreas Exocrino/fisiología , Autoanticuerpos/sangre , Biomarcadores/análisis , Estudios de Casos y Controles , Preescolar , Diabetes Mellitus Tipo 1/complicaciones , Diabetes Mellitus Tipo 1/inmunología , Diabetes Mellitus Tipo 1/patología , Diabetes Mellitus Tipo 1/fisiopatología , Progresión de la Enfermedad , Ambiente , Heces/química , Femenino , Humanos , Lactante , Estudios Longitudinales , Masculino , Páncreas Exocrino/inmunología , Elastasa Pancreática/análisis , Factores de RiesgoRESUMEN
BACKGROUND: Microbial exposures in utero and early life shape the infant microbiome, which can profoundly impact on health. Compared to the bacterial microbiome, very little is known about the virome. We set out to characterize longitudinal changes in the gut virome of healthy infants born to mothers with or without type 1 diabetes using comprehensive virome capture sequencing. METHODS: Healthy infants were selected from Environmental Determinants of Islet Autoimmunity (ENDIA), a prospective cohort of Australian children with a first-degree relative with type 1 diabetes, followed from pregnancy. Fecal specimens were collected three-monthly in the first year of life. RESULTS: Among 25 infants (44% born to mothers with type 1 diabetes) at least one virus was detected in 65% (65/100) of samples and 96% (24/25) of infants during the first year of life. In total, 26 genera of viruses were identified and >150 viruses were differentially abundant between the gut of infants with a mother with type 1 diabetes vs without. Positivity for any virus was associated with maternal type 1 diabetes and older infant age. Enterovirus was associated with older infant age and maternal smoking. CONCLUSIONS: We demonstrate a distinct gut virome profile in infants of mothers with type 1 diabetes, which may influence health outcomes later in life. Higher prevalence and greater number of viruses observed compared to previous studies suggests significant underrepresentation in existing virome datasets, arising most likely from less sensitive techniques used in data acquisition.
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Diabetes Mellitus Tipo 1 , Microbioma Gastrointestinal , Recién Nacido , Embarazo en Diabéticas , Viroma , Estudios de Casos y Controles , Heces/virología , Femenino , Humanos , Masculino , EmbarazoRESUMEN
Parenting and family support are key prevention and intervention strategies for improving outcomes for children and families affected by parental drug misuse. However, little is known about the delivery of parenting support for drug-dependent parents, particularly within universal healthcare services. This study aimed to explore the way healthcare practitioners engage with this challenging agenda. Four multidisciplinary focus groups involving a purposive sample of 18 experienced healthcare professionals were conducted in Scotland. Participants included general practitioners, midwives, public health nurses and addiction staff who work together to provide care for vulnerable families. A focus group topic guide was developed to explore the views and experiences of these healthcare professionals in relation to providing parenting support for drug-using parents, predominantly those receiving opioid substitution therapy. Data were analysed using a constant comparison method and thematic approach. The overarching narrative which united the focus group discussions was about the 'burden of care' that these families pose for frontline healthcare professionals. Recurring themes centred on three key issues: the problematic nature of drug-using parents themselves; clinical challenges in living up to the ideals of professional practice; and the wider context in which current practice is governed. Professionals expressed ambivalence over their parenting support role; anxiety over responsibility for intervening with this 'hard-to-engage' population; and concern over 'dwindling' resources and lack of organisational support. Nevertheless, strategies and opportunities for providing parenting support were acknowledged and there was consensus about the need for further skills training. Despite a proliferation of policy and good practice guidance on the delivery of parenting support for drug-dependent parents, the findings of this study suggest that significant challenges remain. Notably, our findings raise questions about whose role it is to provide parenting support to drug-using mothers and fathers, especially those who are not involved in the child protection system.
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Hijo de Padres Discapacitados , Abuso de Medicamentos , Grupos Focales , Responsabilidad Parental , Niño , Femenino , Humanos , Masculino , Padres , EscociaRESUMEN
BACKGROUND: Health promotion provides a key opportunity to empower young people to make informed choices regarding key health-related behaviours such as tobacco and alcohol use, sexual practices, dietary choices and physical activity. This paper describes the evaluation of a pilot School Youth Health Nurse (SYHN) Program, which aims to integrate a Registered Nurse into school communities to deliver health promotion through group education and individual sessions. METHODS: The evaluation was guided by the RE-AIM (reach, effectiveness, adoption, implementation, maintenance) framework. The objectives were to explore: 1) whether the Program was accessible to the high school students; 2) the impacts of the Program on key stakeholders; 3) which factors affected adoption of the Program; 4) whether implementation was consistent with the Program intent; and 5) the long-term sustainability of the Program. Research included retrospective analysis of Program records, administration of a survey of student experiences and interviews with 38 stakeholders. RESULTS: This evaluation provided evidence that the SYHN Program is reaching students in need, is effective, has been adopted successfully in schools, is being implemented as intended and could be maintained with sustained funding. The nurses deliver an accessible and acceptable primary health care service, focused on health promotion, prevention and early intervention. After some initial uncertainty about the scope and nature of the role, the nurses are a respected source of health information in the schools, consulted on curriculum development and contributing to whole-of-school health activities. CONCLUSIONS: Findings demonstrate that the SYHN model is feasible and acceptable to the students and schools involved in the pilot. The Program provides health promotion and accessible primary health care in the school setting, consistent with the Health Promoting Schools framework.
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AIMS: To explore the ways in which opioid-dependent parents accounted for their use of opioids and benzodiazepines during and after pregnancy. METHODS: Longitudinal qualitative interviews [n = 45] with 19 opioid-dependent adults recruited in Scotland, UK, were held during the antenatal and post-natal period. Interviews focused on parenting and parenting support within the context of problem drug use and were analysed using a narrative informed, thematic analysis. FINDINGS: The majority of participants described using benzodiazepines in addition to opioids. Almost all indicated a desire to stop or reduce opioid use, whereas cessation or reduction of benzodiazepines was rarely prioritised. In stark contrast to opioid dependence, benzodiazepine dependence was portrayed as unproblematic, therapeutic and acceptable in the context of family life. Whereas opioid dependence was framed as stigmatising, benzodiazepine use and dependence was normalised. An exception was benzodiazepine use by men which was occasionally associated with aggression and domestic abuse. CONCLUSIONS: Drug-dependent parents attach different meanings to opioid and benzodiazepine use and dependence in the context of parenthood. Divergent meanings, and stigma, may impact on stated commitment to stability or recovery from dependent drug-use. Attention should be paid to the way in which policy and practice regarding OST and benzodiazepines reflects this divergence.
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BACKGROUND: Parenting and pregnancy in the context of drug use is a contentious topic, high on the policy agenda. Providing effective support to parents who are opioid dependent, through early intervention, access to drug treatment and parenting skills training, is a priority. However, little is known about opioid dependent parents' experiences and understanding of parenting support during the antenatal and postnatal periods. This paper focuses on the position and impact of opioid substitution therapy (OST) in the accounts of parents who were expecting, or who had recently had, a baby in the UK. METHODS: Semi-structured qualitative interviews were held with a purposive sample of 19 opioid dependent service users (14 female, 5 male). Longitudinal data was collected across the antenatal and postnatal (up to 1 year) periods, with participants interviewed up to three times. Forty-five interviews were analysed thematically, using a constant comparison method, underpinned by a sociologically informed narrative approach. RESULTS: Participants' accounts of drug treatment were clearly oriented towards demonstrating that they were doing 'the best thing' for their baby. For some, OST was framed as a route to what was seen as a 'normal' family life; for others, OST was a barrier to such normality. Challenges related to: the physiological effects of opioid dependence; structural constraints associated with treatment regimes; and the impact of negative societal views about drug-using parents. CONCLUSION: Parents' accounts of OST can be seen as a response to socio-cultural ideals of a 'good', drug-free parent. Reflecting the liminal position parents engaged in OST found themselves in, their narratives entailed reconciling their status as a 'drug-using parent' with a view of an 'ideal parent' who was abstinent.
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Analgésicos Opioides/uso terapéutico , Consumidores de Drogas/psicología , Metadona/uso terapéutico , Tratamiento de Sustitución de Opiáceos , Trastornos Relacionados con Opioides/tratamiento farmacológico , Padres/psicología , Atención Posnatal/métodos , Atención Prenatal/métodos , Estereotipo , Adulto , Relaciones Familiares , Femenino , Humanos , Entrevistas como Asunto , Estudios Longitudinales , Masculino , Trastornos Relacionados con Opioides/diagnóstico , Trastornos Relacionados con Opioides/psicología , Responsabilidad Parental/psicología , Embarazo , Prejuicio , Opinión Pública , Investigación Cualitativa , Escocia , Resultado del Tratamiento , Adulto JovenRESUMEN
OBJECTIVE: Patients with a medical condition and co-morbid depression have more symptoms and use more medical services. We aimed to determine the prevalence of depression and the adequacy of its treatment in patients who had been repeatedly referred from primary to specialist medical care for the assessment of a medical condition. METHODS: All patients who had at least three referrals to medical and surgical specialists for an assessment of symptoms attributed to a medical condition, over a five year period from five primary care practices in Edinburgh, UK were identified using a referral database and review of records. Participants were sent a questionnaire which included the PHQ-9 depression scale and additional questions about depression during the preceding 5years. Details of treatment for depression were obtained from primary care records. RESULTS: Questionnaires were sent to 230 patients and returned by 162 (70.4%). Forty-one (25.3%) had a PHQ-9 score of 10 or more and hence probable current depressive disorder. An additional 36 (22.2%) reported depression in the previous 5years. Only eight (19.5%) of those reporting current depression and 20 (26%) of the 77 patients reporting previous depression had received minimally adequate treatment for it. CONCLUSION: Whilst we know that patients with medical conditions are often depressed and that such co-morbid depression is often undertreated, we have found that it is undertreated even in patients repeatedly referred to medical specialists. Better assessment and management of depression in such patients could both improve patients' quality of life and reduce the cost of care.
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Depresión/terapia , Derivación y Consulta/estadística & datos numéricos , Comorbilidad , Depresión/diagnóstico , Depresión/epidemiología , Femenino , Humanos , Masculino , Medicina/estadística & datos numéricos , Persona de Mediana Edad , Encuestas y CuestionariosRESUMEN
BACKGROUND: Some patients are repeatedly referred from primary to secondary care with medically unexplained symptoms (MUS). We aimed to estimate the healthcare costs incurred by such referrals and to compare them with those incurred by other referred patients from the same defined primary care sample. METHODS: Using a referral database and case note review, all adult patients aged less than 65 years, who had been referred to specialist medical services from one of five UK National Health Service primary care practices in a five-year period, were identified. They were placed in one of three groups: (i) repeatedly referred with MUS (N=276); (ii) infrequently referred (IRS, N=221), (iii) repeatedly referred with medically explained symptoms (N=230). Secondary care activities for each group (inpatient days, outpatient appointments, emergency department attendances and investigations) were identified from primary care records. The associated costs were allocated using summary data and the costs for each group compared. RESULTS: Patients who had been repeatedly referred with MUS had higher mean inpatient, outpatient and emergency department costs than those infrequently referred (£3,539, 95% CI 1458 to 5621, £778 CI 705 to 852 and £99, CI 74 to 123 respectively. The mean overall costs were similar to those of patients who had been repeatedly referred with medically explained symptoms. CONCLUSIONS: The repeated referral of patients with MUS to secondary medical care incurs substantial healthcare costs. An alternative form of management that reduces such referrals offers potential cost savings.
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Costos de la Atención en Salud/estadística & datos numéricos , Mal Uso de los Servicios de Salud , Atención Primaria de Salud/métodos , Trastornos Psicofisiológicos/economía , Trastornos Psicofisiológicos/terapia , Adulto , Ansiedad/complicaciones , Ansiedad/economía , Citas y Horarios , Ahorro de Costo/métodos , Costo de Enfermedad , Depresión/complicaciones , Depresión/economía , Femenino , Mal Uso de los Servicios de Salud/economía , Mal Uso de los Servicios de Salud/estadística & datos numéricos , Humanos , Masculino , Registros Médicos/estadística & datos numéricos , Persona de Mediana Edad , Prioridad del Paciente , Atención Primaria de Salud/normas , Trastornos Psicofisiológicos/etiología , Derivación y Consulta/economía , Especialización/economía , Medicina Estatal/economía , Reino UnidoRESUMEN
BACKGROUND: Around 1% of adults are repeatedly referred from primary to secondary care with medically unexplained symptoms (MUS); many of these patients have depression and anxiety disorders which are unrecognized or inadequately treated. We aimed to investigate the ways patients with MUS and their General Practitioners (GPs) interpret low mood and worry, whether they regard them as depressive or anxiety disorders and how they relate them causally to symptoms. METHODS: We carried out semi-structured interviews with 27 patients who had been repeatedly referred to specialists for MUS and their GPs and analysed transcripts by qualitative comparison. The analysis examined themes relating to low mood and worry, and their influence on symptoms. It drew on the concept of "otherness", whereby mental phenomena can be located either within the self or as separate entities. RESULTS: Both patients and GPs acknowledged the presence of low mood and worry. They viewed low mood as either an individual's personal response to circumstances (including their physical symptoms) or as the illness called "depression"; only the latter was amenable to medical intervention. Worry was seen as a trait rather than as a symptom of an anxiety disorder. While low mood and worry were acknowledged to influence physical symptoms, they were considered insufficient to be the main cause by either the patients or their doctors. CONCLUSIONS: Patients with MUS who are high users of secondary care services interpret low mood and worry in ways which allow them to be discussed with professionals, but not as the cause of their physical symptoms.
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Trastornos de Ansiedad/diagnóstico , Trastorno Depresivo/diagnóstico , Médicos Generales/psicología , Pacientes/psicología , Trastornos Somatomorfos/diagnóstico , Adulto , Trastornos de Ansiedad/complicaciones , Trastornos de Ansiedad/terapia , Actitud del Personal de Salud , Actitud Frente a la Salud , Depresión , Trastorno Depresivo/complicaciones , Trastorno Depresivo/terapia , Femenino , Medicina General/métodos , Humanos , Entrevistas como Asunto , Masculino , Registros Médicos/estadística & datos numéricos , Persona de Mediana Edad , Relaciones Médico-Paciente , Investigación Cualitativa , Derivación y Consulta/estadística & datos numéricos , Trastornos Somatomorfos/etiología , Trastornos Somatomorfos/psicologíaRESUMEN
BACKGROUND: Patients with medically unexplained symptoms (MUS) are commonly referred to specialist clinics. Repeated referrals suggest unmet patient need and inefficient use of resources. OBJECTIVES: How often does this happen, who are the patients and how are they referred? METHODS: The design of the study is a case-control survey. The setting of the study is five general practices in Scotland, UK. The cases were 193 adults with three or more referrals over 5 years, at least two of which resulted in a diagnosis of MUS. The controls were (i) patients referred only once over 5 years and (ii) patients with three or more referrals with symptoms always diagnosed as medically explained. The measures of the study are SF-12 physical and mental component summaries; symptom count; and number of referrals, number of different GPs who had referred and number of specialist follow-up appointments. RESULTS: A total of 1.1% [95% confidence interval (CI) 1.0-1.2%] of patients had repeated (median 3, range 2-6) referrals with MUS. Compared to infrequently referred controls, they were older and more likely to be female, living alone and unemployed. Compared to controls with medically explained symptoms, their health status was comparable or worse: odds ratio for SF-12 physical component summary<40, 1.2 (95% CI 0.72-2.0); SF-12 mental component summary<40, 1.8 (95% CI 1.1-3.0); reporting eight or more physical symptoms, 2.2 (95% CI 1.2-3.8). They were referred by more GPs and received less specialist follow-up. CONCLUSIONS: A small proportion of primary care patients are repeatedly referred to specialist clinics where they receive multiple diagnoses of MUS. The needs of these patients and how they are managed merits greater attention.
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Derivación y Consulta/estadística & datos numéricos , Trastornos Somatomorfos/epidemiología , Adulto , Estudios de Casos y Controles , Intervalos de Confianza , Diagnóstico , Femenino , Medicina General/estadística & datos numéricos , Estado de Salud , Humanos , Modelos Logísticos , Masculino , Persona de Mediana Edad , Oportunidad Relativa , Prevalencia , Escocia/epidemiología , Factores Sexuales , Especialización/estadística & datos numéricosRESUMEN
OBJECTIVES: The study aimed (a) to test a method of identifying patients who have been repeatedly referred (RR) from primary care to medical outpatient clinics where they have received multiple diagnoses of medically unexplained symptoms (MUS) and (b) to describe the prevalence and characteristics of these patients. METHODS: RR patients with MUS (RRMUS) were arbitrarily defined as those with (a) five or more referrals in a 5-year period and (b) a specialist final diagnosis of MUS for at least three of these referrals. A two-stage method of identifying these patients was piloted in one primary care practice: Stage 1 used computerized health service data to identify RR; Stage 2 used manual case note review to identify referrals that ended with specialist diagnoses of MUS. The RRMUS patients identified were asked to complete a questionnaire, a psychiatric diagnostic interview, and their GPs were asked to rate how "difficult to manage" they were. RESULTS: The process was feasible and reasonably accurate. From 6770 registered patients aged 18 to 65 years, 23 (0.3%) were identified as RRMUS. They accounted for 157 referrals over the 5-year period. Sixteen agreed to further assessment, and 8 (50%) had a current anxiety or depressive disorder. GPs rated only 8 (50%) as "difficult to manage." CONCLUSION: This two-stage procedure offers a practical method of identifying RRMUS patients in primary care as a first step in achieving more cost-effective care. These patients have substantial psychiatric morbidity.
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Servicio Ambulatorio en Hospital/estadística & datos numéricos , Atención Primaria de Salud , Derivación y Consulta/estadística & datos numéricos , Trastornos Somatomorfos/diagnóstico , Adolescente , Adulto , Anciano , Trastornos de Ansiedad/diagnóstico , Trastornos de Ansiedad/epidemiología , Comorbilidad , Estudios Transversales , Trastorno Depresivo/diagnóstico , Trastorno Depresivo/epidemiología , Diagnóstico Diferencial , Medicina Familiar y Comunitaria/estadística & datos numéricos , Estudios de Factibilidad , Femenino , Humanos , Incidencia , Masculino , Medicina/estadística & datos numéricos , Persona de Mediana Edad , Proyectos Piloto , Trastornos Somatomorfos/epidemiología , EspecializaciónRESUMEN
OBJECTIVES: Medication storage in patients' homes is an important safety issue. Safe storage of methadone oral solution is of particular concern. Previous studies have suggested that only about half of patients store methadone appropriately. The aims of this study were to describe medication-storage practice in a sample of patients receiving methadone maintenance treatment (MMT), and to identify factors associated with safe storage. METHODS: The setting was a primary health care centre in Edinburgh, Scotland. One hundred and four consecutive patients on MMT completed a self-administered questionnaire covering medication-storage practice, together with clinical and demographic variables. Storage of medication was classified as 'acceptable' if medication was out of sight and out of reach of children, and 'optimal' if it was also kept in a secure container. KEY FINDINGS: Percentages (95% confidence intervals) for acceptable and optimal storage were as follows: methadone 80% (71-86%) and 33% (24-42%); other prescribed medication 69% (59-78%) and 27% (19-37%); purchased medication 64% (50-76%) and 28% (17-42%). Safe storage of methadone was more common in patients taking higher doses of methadone (P = 0.004 for acceptable storage, and P = 0.012 for optimal storage), and in those with children in the house (P = 0.007 and 0.061). Safe storage of prescribed and purchased medication was strongly associated with safe storage of methadone (P < 0.01 in both cases). CONCLUSIONS: Medication-storage practice was better than in previous surveys of patients on MMT. This may reflect the high profile given to safety issues for children of drug-using parents in Scotland, as well as local initiatives. Some aspects of prescribing and dispensing practice could be improved further.
Asunto(s)
Metadona/uso terapéutico , Trastornos Relacionados con Opioides/tratamiento farmacológico , Adulto , Anciano , Almacenaje de Medicamentos , Femenino , Humanos , Masculino , Persona de Mediana EdadRESUMEN
OBJECTIVES: Medication storage in patients' homes is an important safety issue. Safe storage of methadone oral solution is of particular concern. Previous studies have suggested that only about half of patients store methadone appropriately. The aims of this study were to describe medication-storage practice in a sample of patients receiving methadone maintenance treatment (MMT), and to identify factors associated with safe storage. METHODS: The setting was a primary health care centre in Edinburgh, Scotland. One hundred and four consecutive patients on MMT completed a self-administered questionnaire covering medication-storage practice, together with clinical and demographic variables. Storage of medication was classified as 'acceptable' if medication was out of sight and out of reach of children, and 'optimal' if it was also kept in a secure container. KEY FINDINGS: Percentages (95% confidence intervals) for acceptable and optimal storage were as follows: methadone 80% (71-86%) and 33% (24-42%); other prescribed medication 69% (59-78%) and 27% (19-37%); purchased medication 64% (50-76%) and 28% (17-42%). Safe storage of methadone was more common in patients taking higher doses of methadone (P = 0.004 for acceptable storage, and P = 0.012 for optimal storage), and in those with children in the house (P = 0.007 and 0.061). Safe storage of prescribed and purchased medication was strongly associated with safe storage of methadone (P < 0.01 in both cases). CONCLUSIONS: Medication-storage practice was better than in previous surveys of patients on MMT. This may reflect the high profile given to safety issues for children of drug-using parents in Scotland, as well as local initiatives. Some aspects of prescribing and dispensing practice could be improved further.