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Transizione all'età adulta
Transition of care for adolescents from paediatric services to adult health services.
Campbell F, et al. · 2016
PubMed 27128768 ↗DOI: 10.1002/14651858.CD009794.pub2The Cochrane database of systematic reviews
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Revisione sistematica Cochrane sugli interventi per migliorare la transizione dai servizi pediatrici a quelli per adulti negli adolescenti con malattie croniche — Cochrane Database of Systematic Reviews
La domandaMio figlio deve passare al centro per adulti. Si puo' fare in modo che non vada perso?
Cosa hanno trovatoCi sono prove che il processo di transizione dai servizi sanitari pediatrici a quelli per adulti si associ spesso a un peggioramento della salute degli adolescenti con condizioni croniche. Le cure di transizione sono i servizi che cercano di colmare questo divario, definite come il movimento intenzionale e pianificato di adolescenti e giovani adulti con condizioni fisiche e mediche croniche da sistemi di cura centrati sul bambino a sistemi orientati all'adulto. Per sviluppare servizi appropriati servono prove su cosa funziona e su quali fattori agiscano da ostacolo o da facilitatore. Obiettivo della revisione: valutare l'efficacia degli interventi progettati per migliorare la transizione delle cure per gli adolescenti dai servizi pediatrici a quelli per adulti. Ricerca sul Cochrane Central Register of Controlled Trials 2015 numero 1 (incluso il registro specializzato del gruppo Effective Practice and Organisation of Care), MEDLINE, EMBASE, PsycINFO e Web of Knowledge fino al 19 giugno 2015, oltre alle liste di riferimenti degli studi inclusi e delle revisioni pertinenti, con contatto di esperti e autori. Sono stati considerati studi randomizzati, studi controllati prima-dopo e serie temporali interrotte che valutassero l'efficacia di qualunque intervento — modello di cura o percorso clinico — mirato a migliorare la transizione delle cure per gli adolescenti dai servizi pediatrici a quelli per adulti, in adolescenti con qualunque condizione cronica che richiedesse cure cliniche continuative.
Cosa significa per teQuesta biblioteca ha investito 66 schede sul diabete in eta' pediatrica, e il momento in cui quel lavoro rischia di disperdersi non era coperto. La revisione Cochrane e' il metro giusto con cui misurare il tema, e la sua utilita' principale sta in una definizione: la transizione e' un movimento INTENZIONALE e PIANIFICATO. Non e' il compimento dei diciotto anni, non e' un trasferimento amministrativo di cartelle — e' qualcosa che si progetta, e se non lo si progetta non avviene, avviene solo il trasferimento. Questa distinzione, che sembra terminologica, e' in realta' il contenuto operativo: la domanda da fare al centro pediatrico non e' 'quando devo cambiare' ma 'come lo prepariamo'. La premessa della revisione e' l'altra informazione che vale la pena avere, e va detta ai genitori senza allarmarli: c'e' evidenza che il passaggio si associ spesso a un peggioramento della salute. Sapere che e' un punto fragile documentato, e non una sfortuna individuale, e' cio' che permette di prepararsi. Da dichiarare con onesta': dalla parte del testo che abbiamo, questa revisione descrive soprattutto obiettivi e metodi, e la letteratura in materia e' notoriamente scarsa e di qualita' modesta — la revisione sistematica specifica sul tipo 1 (37474959) lo conferma. Quindi qui non ci sono numeri da citare, c'e' un inquadramento. E per una volta l'assenza di prove forti e' essa stessa l'informazione utile: nessuno puo' promettere che un modello funzioni, e la cosa sensata e' non lasciare il passaggio al caso.
Abstract (in lingua originale)
BACKGROUND: There is evidence that the process of transition from paediatric (child) to adult health services is often associated with deterioration in the health of adolescents with chronic conditions.Transitional care is the term used to describe services that seek to bridge this care gap. It has been defined as 'the purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centred to adult-oriented health care systems'. In order to develop appropriate services for adolescents, evidence of what works and what factors act as barriers and facilitators of effective interventions is needed. OBJECTIVES: To evaluate the effectiveness of interventions designed to improve the transition of care for adolescents from paediatric to adult health services. SEARCH METHODS: We searched The Cochrane Central Register of Controlled Trials 2015, Issue 1, (including the Cochrane Effective Practice and Organisation of Care Group Specialised Register), MEDLINE, EMBASE, PsycINFO, and Web of Knowledge to 19 June 2015. We also searched reference lists of included studies and relevant reviews, and contacted experts and study authors for additional studies. SELECTION CRITERIA: We considered randomised controlled trials (RCTs), controlled before- and after-studies (CBAs), and interrupted time-series studies (ITSs) that evaluated the effectiveness of any intervention (care model or clinical pathway), that aimed to improve the transition of care for adolescents from paediatric to adult health services. We considered adolescents with any chronic condition that required ongoing clinical care, who were leaving paediatric services and going on to receive services in adult healthcare units, and their families. Participating providers included all health professionals responsible for the care of young people. DATA COLLECTION AND ANALYSIS: Two review authors independently extracted data from included papers, assessed the risk of bias of each study, and assessed the certainty of the evidence for the main comparisons using GRADE. Discrepancies were resolved by discussion. Authors were contacted for missing data. We reported the findings of the studies as pre- and post-intervention means and calculated the unadjusted absolute change from baseline with 95% confidence intervals (CI). MAIN RESULTS: We included four RCTs (N = 238 participants) that explored: a two-day workshop-based transition preparation training for adolescents with spina bifida; a nurse-led, one-on-one, teaching session with the additional support of a 'health passport' for adolescents with heart disease; a web- and SMS-based educational intervention for adolescents with a range of different conditions; and a structured comprehensive transition programme with a transition co-ordinator for adolescents with type 1 diabetes.One study evaluating a one-on-one nurse-led intervention, and one evaluating a technology-based intervention suggested that these interventions may lead to slight improvements in transitional readiness and chronic disease self-management measured at six- to eight-month follow-ups (low certainty evidence). Results with the TRAQ self-management tool were: MD 0.20; 95% CI -0.16 to 0.56 and MD 0.43; 95% CI; -0.09 to 0.95; with the TRAQ self-advocacy tool: MD 0.37; 95% CI -0.06 to 0.80; and with the PAM tool were: MD 10; 95% CI 2.96 to 17.04. In contrast, transition-preparation training delivered via a two-day workshop for patients with spina bifida may lead to little or no difference in measures of self-care practice and general health behaviours when measured using the DSCPI-90©.Two studies evaluated the use of health services. One study evaluated a technology-based intervention and another a comprehensive transition programme; these interventions may lead to slightly more young people taking positive steps to initiate contact with health professionals themselves (Relative risk (RR): 4.87; 95% CI 0.24 to 98.12 and RR 1.50; 95% CI 0.32 to 6.94, respectively; low certainty evidence.Young people's knowledge of their disease may slightly improve with a nurse-led, one-on-one intervention to prepare young people for transition to an adult congenital heart programme (MD 14; 95% CI 2.67 to 25.33; one study; low certainty evidence).Disease-specific outcome measures were reported in two studies, both of which led to little or no difference in outcomes (low certainty evidence). One study found little or no difference between intervention and control groups. A second study found that follow-up HbA1c in young people with type 1 diabetes mellitus increased by 1.2% for each percentage increase in baseline HbA1c, independent of treatment group (1.2%; 95% CI 0.4 to 1.9; P = 0.01).Transition interventions may lead to little or no difference in well-being or quality of life as measured with the PARS III or PedsQ (two studies; low certainty evidence). Both the technology-based intervention and the two-day workshop for young people with spina bifida found little or no difference between intervention and control groups (MD 1.29; 95% CI -4.49 to 7.07). One study did not report the data.Four telephone support calls from a transition co-ordinator may lead to little or no difference in rates of transfer from paediatric to adult diabetes services (one study; low certainty evidence). At 12-month follow-up, there was little or no difference between groups of young people receiving usual care or a telephone support (RR 0.80; 95% CI 0.59 to 1.08)). They may slightly reduce the risk of disease-related hospital admissions at 12-month follow-up (RR 0.29; 95% CI 0.03 to 2.40). AUTHORS' CONCLUSIONS: The available evidence (four small studies; N = 238), covers a limited range of interventions developed to facilitate transition in a limited number of clinical conditions, with only four to 12 months follow-up. These follow-up periods may not be long enough for any changes to become apparent as transition is a lengthy process. There was evidence of improvement in patients' knowledge of their condition in one study, and improvements in self-efficacy and confidence in another, but since few studies were eligible for this review, and the overall certainty of the body of this evidence is low, no firm conclusions can be drawn about the effectiveness of the evaluated interventions. Further research is very likely to have an important impact on our confidence in the intervention effect and likely could change our conclusions. There is considerable scope for the rigorous evaluation of other models of transitional care, reporting on clinical outcomes with longer term follow-up.
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