Dataset Information

Family preferences for home or hospital care at diagnosis for children with diabetes in the DECIDE study.

ABSTRACT:

Aims

A diagnosis of Type 1 diabetes in childhood can be a difficult life event for children and families. For children who are not severely ill, initial home rather than hospital-based care at diagnosis is an option although there is little research on which is preferable. Practice varies widely, with long hospital stays in some countries and predominantly home-based care in others. This article reports on the comparative acceptability and experience of children with Type 1 diabetes and their parents taking part in the DECIDE study evaluating outcomes of home or hospital-based treatment from diagnosis in the UK.

Methods

Semi-structured interviews with 11 (pairs of) parents and seven children were conducted between 15 and 20 months post diagnosis. Interviewees were asked about adaptation to, management and impact of the diabetes diagnosis, and their experience of initial post-diagnosis treatment.

Results

There were no differences between trial arms in adaptation to, management of or impact of diabetes. Most interviewees wanted to be randomized to the 'home' arm initially but expressed a retrospective preference for whichever trial arm they had been in, and cited benefits relating to learning about diabetes management.

Conclusions

The setting for early treatment did not appear to have a differential impact on families in the long term. However, the data presented here describe different experiences of early treatment settings from the perspective of children and their families, and factors that influenced how families felt initially about treatment setting. Further research could investigate the short-term benefits of both settings.

SUBMITTER: Morgan-Trimmer S

PROVIDER: S-EPMC5019260 | biostudies-literature | 2016 Jan

REPOSITORIES: biostudies-literature

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Family preferences for home or hospital care at diagnosis for children with diabetes in the DECIDE study.

Morgan-Trimmer S S Channon S S Gregory J W JW Townson J J Lowes L L

Diabetic medicine : a journal of the British Diabetic Association 20151008 1

<h4>Aims</h4>A diagnosis of Type 1 diabetes in childhood can be a difficult life event for children and families. For children who are not severely ill, initial home rather than hospital-based care at diagnosis is an option although there is little research on which is preferable. Practice varies widely, with long hospital stays in some countries and predominantly home-based care in others. This article reports on the comparative acceptability and experience of children with Type 1 diabetes and ...[more]

PMID: 26287652

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Project description:ObjectiveTo determine whether, in children with newly diagnosed type 1 diabetes who were not acutely unwell, management at home for initiation of insulin treatment and education of the child and family, would result in improved clinical and psychological outcomes at 2?years postdiagnosis.DesignA multicentre randomised controlled trial (January 2008/October 2013).SettingEight paediatric diabetes centres in England, Wales and Northern Ireland.Participants203 clinically well children aged under 17 years, with newly diagnosed type 1 diabetes and their carers.InterventionManagement of the initiation period from diagnosis at home, for a minimum of 3?days, to include at least six supervised injections and delivery of pragmatic educational care.Main outcome measuresPrimary outcome was glycosylated haemoglobin (HbA1c) concentration at 24 months postdiagnosis. Secondary outcomes included coping, anxiety, quality of life and use of NHS resources.Results203 children, newly diagnosed, were randomised to commence management at home (n=101) or in hospital (n=102). At the 24?month primary end point, there was one withdrawal and a follow-up rate of 194/202 (96%). Mean HbA1c in the home treatment arm was 72.1?mmol/mol and in the hospital treated arm 72.6?mmol/mol. There was a negligible difference between the mean HbA1c levels in the two arms adjusted for baseline (1.01, 95%?CI 0.93 to 1.09). There were mostly no differences in secondary outcomes at 24 months, apart from better child self-esteem in the home-arm. No home-arm children were admitted to hospital during initiation and there were no adverse events at that time. The number of investigations was higher in hospital patients during the follow-up period. There were no differences in insulin regimens between the two arms.ConclusionsThere is no evidence of a difference between home-based and hospital-based initiation of care in children newly diagnosed with type 1 diabetes across relevant outcomes.Trial registration numberISRCTN78114042.

Project description:BackgroundThe policy in a number of countries is to provide people with a terminal illness the choice of dying at home. This policy is supported by surveys indicating that the general public and people with a terminal illness would prefer to receive end-of-life care at home. This is the fourth update of the original review.ObjectivesTo determine if providing home-based end-of-life care reduces the likelihood of dying in hospital and what effect this has on patients' symptoms, quality of life, health service costs, and caregivers, compared with inpatient hospital or hospice care.Search methodsWe searched the following databases until April 2015: Cochrane Central Register of Controlled Trials (CENTRAL) (the Cochrane Library), Ovid MEDLINE(R) (from 1950), EMBASE (from 1980), CINAHL (from 1982), and EconLit (from 1969). We checked the reference lists of potentially relevant articles identified and handsearched palliative care publications, clinical trials registries, and a database of systematic reviews for related trials (PDQ-Evidence 2015).Selection criteriaRandomised controlled trials, interrupted time series, or controlled before and after studies evaluating the effectiveness of home-based end-of-life care with inpatient hospital or hospice care for people aged 18 years and older.Data collection and analysisTwo review authors independently extracted data and assessed study quality. We combined the published data for dichotomous outcomes using fixed-effect Mantel-Haenszel meta-analysis. When combining outcome data was not possible, we reported the results from individual studies.Main resultsWe included four trials in this review and did not identify new studies from the search in April 2015. Home-based end-of-life care increased the likelihood of dying at home compared with usual care (risk ratio (RR) 1.33, 95% confidence interval (CI) 1.14 to 1.55, P = 0.0002; Chi(2) = 1.72, df = 2, P = 0.42, I(2) = 0%; 3 trials; N = 652; high quality evidence). Admission to hospital while receiving home-based end-of-life care varied between trials, and this was reflected by a high level of statistical heterogeneity in this analysis (range RR 0.62 to RR 2.61; 4 trials; N = 823; moderate quality evidence). Home-based end-of-life care may slightly improve patient satisfaction at one-month follow-up and reduce it at six-month follow-up (2 trials; low quality evidence). The effect on caregivers is uncertain (2 trials; low quality evidence). The intervention may slightly reduce healthcare costs (2 trials, low quality evidence). No trial reported costs to patients and caregivers.Authors' conclusionsThe evidence included in this review supports the use of home-based end-of-life care programmes for increasing the number of people who will die at home, although the numbers of people admitted to hospital while receiving end-of-life care should be monitored. Future research should systematically assess the impact of home-based end-of-life care on caregivers.

Project description:BackgroundPractices regarding hospitalisation of children at diagnosis of type 1 diabetes vary both within countries and internationally, and high-quality evidence of best practice is scarce. The objective of this study was to close some of the gaps in evidence by comparing two alternative regimens for children diagnosed with type 1 diabetes: hospital-based care and hospital-based home care (HBHC), referring to specialist care in a home-based setting.MethodsA randomised controlled trial, including 60 children aged 3-15 years, took place at a university hospital in Sweden. When the children were medically stable, they were randomised to either the traditional, hospital-based care or to HBHC.ResultsTwo years after diagnosis there were no differences in HbA1c (p = 0.777), in episodes of severe hypoglycaemia (p = 0.167), or in insulin U/kg/24 h (p = 0.269). Over 24 months, there were no statistically significant differences between groups in how parents' reported the impact of paediatric chronic health condition on family (p = 0.138) or in parents' self-reported health-related quality of life (p = 0.067). However, there was a statistically significant difference regarding healthcare satisfaction, favouring HBHC (p = 0.002). In total, healthcare costs (direct costs) were significantly lower in the HBHC group but no statistically significant difference between the two groups in estimated lost production (indirect costs) for the family as a whole. Whereas mothers had a significantly lower value of lost production, when their children were treated within the HBHC regime, fathers had a higher, but not a significantly higher value. The results indicate that HBHC might be a cost-effective strategy in a healthcare sector perspective. When using the wider societal perspective, no difference in cost effectiveness or cost utility was found.ConclusionsOverall, there are only a few, well-designed and controlled studies that compare hospital care to different models of home care. The results of this study provide empirical support for the safety and feasibility of HBHC when a child is diagnosed with type 1 diabetes. Our results further indicate that the model of care may have an impact on families' daily living, not only during the initial period of care but for a longer period of time.Trial registrationClinicalTrials.gov with identity number NCT00804232 , December 2008.

Dataset Information

Family preferences for home or hospital care at diagnosis for children with diabetes in the DECIDE study.

Aims

Methods

Results

Conclusions

Publications

Family preferences for home or hospital care at diagnosis for children with diabetes in the DECIDE study.

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