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OBJECTIVE: To explore the cost-effectiveness of a web-based support tool for parents of children with Juvenile Idiopathic Arthritis. METHODS: A multi-centred randomised controlled trial was conducted in paediatric rheumatology centres in England. The WebParC intervention consisted of online information about JIA and its treatment and a toolkit using cognitive-behavioural therapy principles to support parents manage their child's JIA. An economic evaluation was performed alongside the trial involving 220 parents. The primary outcome was the self-report Pediatric Inventory for Parents measure of illness-related parenting stress, with two dimensions; difficulty and frequency. These measures along with costs were assessed post intervention at 4 months and 12 months. Costs were calculated for healthcare usage using a UK NHS economic perspective. Data was collected and analysed on the impact of caring costs on families. Uncertainty around cost effectiveness was explored using bootstrapping and cost-effectiveness acceptability curves. RESULTS: The intervention arm showed improved average Pediatric Inventory for Parents scores for the dimensions of frequency and difficulty, of 1.5 and 3.6 respectively at 4 months and. 0.35 and 0.39 at 12 months, representing improved PIP scores for the intervention arm. At both 4 and 12 month follow up the average total cost per case was higher in the control group when compared with the intervention arm with mean differences of £360 (95% CI £29.6 to £691) at 4 months and £203 (95% CI £16 to £390) at 12 months. The probability of the intervention being cost effective ranged between 49% and 54%. CONCLUSION: The WebParC intervention led to reductions in primary and secondary healthcare resource use and costs at 4 and 12 months. The intervention demonstrated particular savings for rheumatology services at both follow ups. Future economies of scale could be realised by health providers with increased opportunities for cost effectiveness over time. TRIAL REGISTRATION: ISRCTN, ISRCTN13159730.
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BACKGROUND: Juvenile idiopathic arthritis (JIA) is a group of autoinflammatory diseases that cause pain and disability if not controlled by treatment. Parenting a child with JIA is stressful for parents, who express concerns about their child's treatment and may experience anxiety and powerlessness concerning their child's illness. Parenting stress is greater in parents of children with chronic illness than in those with healthy children and is related to poorer psychological adjustment in both parents and children. It is therefore important to develop interventions to support parents. This paper reports the evaluation of a web-based tool that provides information and practical skills to help increase parents' confidence in managing their child's illness and reduce parenting stress. OBJECTIVE: The aim of this study is to evaluate the benefits of a web-based tool (WebParC) for parents of children with recently diagnosed JIA. METHODS: A multicentered randomized controlled trial was conducted at pediatric rheumatology centers in England. We recruited parents of children aged ≤12 years who had been diagnosed with JIA within the previous 6 months. They were randomized to the intervention (WebParC access plus standard care) or the control (standard care alone) and followed up 4 months and 12 months after randomization. Where both parents participated, they were randomized by household to the same trial arm. The WebParC intervention consists of information about JIA and its treatment plus a toolkit, based on cognitive behavioral therapy, to help parents develop skills to manage JIA-related issues. The primary outcome was the self-report Pediatric Inventory for Parents measure of illness-related parenting stress. The secondary outcomes were parental mood, self-efficacy, coping, effectiveness of participation in their child's health care, satisfaction with health care, and child's health-related quality of life. RESULTS: A total of 203 households comprising 220 parents were randomized to the intervention (100/203, 49.3%) or control (103/203, 50.7%) arm. Follow-up assessments were completed by 65.5% (133/203) of the households at 4 months (intervention 60/100, 60%, and control 73/103, 70.9%) and 61.1% (124/203) of the households at 12 months (intervention 58/100, 58%, and control 66/103, 64.1%). A main effect of the trial arm was found on the Pediatric Inventory for Parents: the intervention participants reported less frequency (subscales communication F1,120627=5.37; P=.02, and role function F1,27203=5.40; P=.02) and difficulty (subscales communication F1,2237=7.43; P=.006, medical care F1,2907=4.04; P=.04, and role function F1,821=4.37, P=.04) regarding illness-related stressful events than the control participants. CONCLUSIONS: The WebParC website for parents of children with JIA reduced illness-related parenting stress. This web-based intervention offers a feasible preventive approach for parents of children with JIA and potentially could be adapted and evaluated for parents of children with other chronic illnesses. TRIAL REGISTRATION: International Standard Randomized Controlled Trial Number (ISRCTN) 13159730; http://www.isrctn.com/ISRCTN13159730.
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Artritis Juvenil , Artritis Juvenil/psicología , Artritis Juvenil/terapia , Niño , Humanos , Internet , Responsabilidad Parental/psicología , Padres/psicología , Calidad de Vida/psicologíaRESUMEN
BACKGROUND: Although the importance of patient empowerment is increasingly recognized, little is known about empowerment in children and young people (CYP) with long-term conditions. Empowerment may be particularly important in CYP with cystic fibrosis (CF) due to high treatment burden and limited opportunities for peer support. METHODS: A Grounded Theory method was employed to develop a preliminary theory of empowerment in CYP with CF. Seven CYP with CF, five parents and four professionals were interviewed. RESULTS AND CONCLUSIONS: The emerging model suggests that 'thriving alongside CF' may be supported by interactions between 'having a team' and 'taking charge and having a voice', leading to 'being able to just be a child', that 'concealing self' may get in the way of 'thriving alongside CF' and that these processes occur within wider medical and developmental contexts. Study limitations, clinical and research implications are discussed.
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Fibrosis Quística , Adolescente , Niño , Familia , Teoría Fundamentada , Humanos , Padres , Participación del PacienteRESUMEN
SARS-CoV-2 is the causative virus responsible for the COVID-19 pandemic. This pandemic has necessitated that all professional and elite sport is either suspended, postponed or cancelled altogether to minimise the risk of viral spread. As infection rates drop and quarantine restrictions are lifted, the question how athletes can safely resume competitive sport is being asked. Given the rapidly evolving knowledge base about the virus and changing governmental and public health recommendations, a precise answer to this question is fraught with complexity and nuance. Without robust data to inform policy, return-to-play (RTP) decisions are especially difficult for elite athletes on the suspicion that the COVID-19 virus could result in significant cardiorespiratory compromise in a minority of afflicted athletes. There are now consistent reports of athletes reporting persistent and residual symptoms many weeks to months after initial COVID-19 infection. These symptoms include cough, tachycardia and extreme fatigue. To support safe RTP, we provide sport and exercise medicine physicians with practical recommendations on how to exclude cardiorespiratory complications of COVID-19 in elite athletes who place high demand on their cardiorespiratory system. As new evidence emerges, guidance for a safe RTP should be updated.
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Betacoronavirus , Infecciones por Coronavirus/complicaciones , Miocarditis/diagnóstico , Neumonía Viral/complicaciones , Guías de Práctica Clínica como Asunto , Trastornos Respiratorios/diagnóstico , Volver al Deporte/normas , Atletas , Biomarcadores/sangre , COVID-19 , Infecciones por Coronavirus/diagnóstico , Infecciones por Coronavirus/epidemiología , Muerte Súbita Cardíaca/prevención & control , Electrocardiografía , Humanos , Miocarditis/sangre , Miocarditis/etiología , Miocardio/patología , Necrosis/etiología , Pandemias , Neumonía Viral/diagnóstico , Neumonía Viral/epidemiología , Trastornos Respiratorios/etiología , SARS-CoV-2 , Medicina Deportiva/normas , Evaluación de Síntomas , Troponina/sangreRESUMEN
During pregnancy, patients have an increased risk of venous thromboembolism (VTE). This is an important cause of maternal mortality. Inferior vena cava (IVC) filters can be used to prevent pulmonary embolism in complicated cases of VTE during pregnancy. The present systematic review includes all patients reported in the literature who had an IVC filter placed during pregnancy. The indications for IVC filters are discussed, along with practical considerations for placement during pregnancy, filter effectiveness, and maternal and fetal mortality and morbidity. IVC filters can be used safely when appropriate during pregnancy, with complication rates similar to those in nonpregnant patients.
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Complicaciones Cardiovasculares del Embarazo/terapia , Implantación de Prótesis/instrumentación , Embolia Pulmonar/prevención & control , Filtros de Vena Cava , Trombosis de la Vena/terapia , Femenino , Humanos , Embarazo , Complicaciones Cardiovasculares del Embarazo/diagnóstico , Implantación de Prótesis/efectos adversos , Embolia Pulmonar/diagnóstico , Embolia Pulmonar/etiología , Factores de Riesgo , Resultado del Tratamiento , Filtros de Vena Cava/efectos adversos , Trombosis de la Vena/complicaciones , Trombosis de la Vena/diagnósticoRESUMEN
OBJECTIVE: To evaluate an interactive group psychoeducation programme for children treated for leukaemia. METHODS: A longitudinal randomised controlled study across four UK hospitals with an immediate (N = 26) and delay control group (N = 32). The intervention covered the pathophysiology of leukaemia, its treatment, side effects and the importance of positive health behaviours. Primary outcomes were parent-reported child health related quality of life (HRQoL) and behavioural difficulties. Secondary outcomes were child-reported HRQoL, cancer-specific HRQoL, child confidence, caregiver burden, and treatment anxiety. Measures were completed pre- and immediately post-intervention, and at 13 and 26-weeks follow-up. Change over time was analysed using multilevel modelling. Acceptability questionnaires rated the intervention on benefits, recommendations, and barriers to participation. RESULTS: The intervention significantly improved parent-reported child HRQoL but did not have a significant effect on other outcomes. Acceptability of the intervention was high. CONCLUSIONS: This study provides initial evidence that interactive group psychoeducation is acceptable to families and improves HRQoL in children with leukaemia. Difficulties with recruitment removed power to detect effect sizes that are plausible for psychoeducational interventions. PRACTISE IMPLICATIONS: Further studies to explore the potential of psychoeducation to improve outcomes for children with leukaemia and an examination of barriers to participation within this population are warranted.
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Leucemia , Calidad de Vida , Humanos , Leucemia/terapia , Estudios Longitudinales , Padres , Encuestas y CuestionariosRESUMEN
BACKGROUND/AIM: Predischarge home assessment visits are a commonly accepted, but little researched, aspect of occupational therapy practice. The aim of this research was to systematically investigate current predischarge occupational therapy home assessment visit practices in a rehabilitation ward of a regional Australian hospital. METHODS: A retrospective chart audit was conducted over a 7-month time period and included 227 patients discharged from the inpatient rehabilitation ward at the study hospital. RESULTS: Fifty-five per cent of patients in the study sample received home assessment visits. At least one recommendation for change was made as a result of the visit for 99% of those patients receiving visits. A total of 139 visits were completed and resulted in 1179 recommendations for change. The median number of recommendations made for the home assessment visits was 10 (range 0-33). The most common types of recommendations, timing of visits, persons present during the visit and documentation of visits were also investigated. CONCLUSION: Although occupational therapy home assessment visits are routinely completed, there is limited research available to provide evidence-based guidelines relating to predischarge occupational therapy home assessment visit practices. Recommendations for future practice and areas for further research into occupational therapy home assessment visits are discussed.
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Visita Domiciliaria , Terapia Ocupacional/métodos , Alta del Paciente , Adolescente , Adulto , Anciano , Anciano de 80 o más Años , Accesibilidad Arquitectónica , Práctica Clínica Basada en la Evidencia , Femenino , Servicios de Atención de Salud a Domicilio , Humanos , Masculino , Auditoría Médica , Persona de Mediana Edad , Evaluación de Necesidades , Servicio de Fisioterapia en Hospital , Estudios Retrospectivos , Dispositivos de Autoayuda , Victoria , Adulto JovenRESUMEN
In brief Many active women, especially those in sports that place a premium on a lean physique, don't consume enough iron, which puts them at risk for anemia. When evaluating an active woman's iron status, it's important to determine her hemoglobin baseline and identify various sources of iron loss from the medical history. Hemoglobin, hematocrit, and serum ferritin levels are most often the only laboratory values needed for evaluation. Treatment of anemia and iron deficiency focuses on improving iron intake through food and supplements and monitoring the patient's progress. Prevention tactics include diet counseling for those with known risk factors for anemia.