Balancing the pressures: a review of the quality of care provided to children and young people aged 0–24 years who were receiving long-term ventilation

2020 ◽  
Vol 81 (9) ◽  
pp. 1-4
Author(s):  
Heather Freeth ◽  
Nicholas Mahoney ◽  
Mark Juniper ◽  
Rachael Moses ◽  
Kathy Wilkinson
Keyword(s):  
Quality Of Care ◽  
Young People ◽  
Children And Young People ◽  
Long Term Ventilation

Assessing the quality of care for patients receiving long-term ventilation is complex given the diversity of this population (0–24 years in this case) and their differing requirements for treatment. This article details how and why such reviews are necessary.

Co-Design and Open Trial of Starship Rescue, a Cognitive Behavior Therapy, Biofeedback, and Game-Based eHealth Intervention to Treat Anxiety in Children and Young People with Long-Term Physical Conditions (Preprint)

2020 ◽  
Author(s):  
Hiran Thabrew ◽  
Karolina Stasiak ◽  
Harshali Kumar ◽  
Tarique Naseem ◽  
Christopher Frampton ◽  
...  
Keyword(s):  
Quality Of Life ◽  
New Zealand ◽  
Young People ◽  
Preliminary Evidence ◽  
Children And Young People ◽  
Physical Conditions ◽  
System Usability Scale ◽  
Ehealth Intervention

BACKGROUND Approximately 10% to 12% of New Zealand children and young people have long-term physical conditions (also known as chronic illnesses) and are more likely to develop psychological problems, particularly anxiety and depression. Delayed treatment leads to worse physical and mental healthcare, school absence, and poorer long-term outcomes. Recently, electronic health (eHealth) interventions, especially those based on the principles of Cognitive Behavior Therapy (CBT), have been shown to be as good as face-to-face therapy. Biofeedback techniques have also been shown to enhance relaxation during the treatment of anxiety. However, these modalities have rarely been combined. Young people with long-term physical conditions have expressed a preference for well-designed and technologically-based support to deal with psychological issues, especially anxiety. OBJECTIVE This study aimed to co-design and evaluate the (i) acceptability and (ii) usability of a CBT and biofeedback-based, 5-module eHealth game called ‘Starship Rescue’ and (iii) to provide preliminary evidence regarding its effectiveness in addressing anxiety and quality of life in young people with long-term physical conditions. METHODS Starship Rescue was co-designed with children and young people from a tertiary hospital in Auckland, New Zealand. Following this, 24 young people aged 10 to 17 years were enrolled in an open trial, during which they were asked to use the game for an 8-week period. Acceptability of the game to all participants was assessed using a brief, open-ended questionnaire, and more detailed feedback was obtained from a subset of 10 participants via semi-structured interviews. Usability was evaluated via the System Usability Scale (SUS) and device-recorded frequency and duration of access on completion of the game. Anxiety levels were measured prior to commencement, on completion of the game, and 3 months later using the Generalized Anxiety Disorder 7-item scale (GAD-7) and Spence Child Anxiety Scales (SCAS), and at the start of each module and at the end of the game using an embedded Likert/visual analog scale. Quality of life was measured prior to commencement and on completion of the game using the Pediatric Quality of Life Scale (PEDS-QL). RESULTS Users gave Starship Rescue an overall rating of 5.9 out of 10 (range 3-10 and a mean score of 71 out of 100 (SD 11.7; min 47.5; max 90) on the System Usability Scale (SUS). The mean time period for use of the game was just over 11-weeks (78.8 days, 13.5 hours, 40 minutes). Significant reductions in anxiety were noted between the start and end of the game on the GAD-7 (-4.6 (p=0.000)), SCAS (-9.6 (p=0.005)), and the Likert/visual analogue scales (-2.4 (p=0.001)). Quality of life also improved on the PedsQL scale (+4.3 (p=0.042)). All changes were sustained at 3-month follow-up. CONCLUSIONS This study provides preliminary evidence for Starship Rescue being an acceptable, usable and effective eHealth intervention for addressing anxiety in young people with long-term physical conditions. Further evaluation is planned via a more formal randomized controlled trial. CLINICALTRIAL Australian New Zealand Clinical Trials Network Registry (ANZCTR): ACTRN12616001253493p;https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=371443 (Archived by WebCite at http://www.webcitation.org/6sYB716lf)

A regional evaluation of the health care utilization and outcomes of children and young people with long‐term ventilation needs

2020 ◽  
Vol 47 (1) ◽  
pp. 70-76
Author(s):  
Emma Popejoy ◽  
Takawira C. Marufu ◽  
David A. Thomas ◽  
Rachel Gregory ◽  
Adele Frost ◽  
...  
Keyword(s):  
Health Care ◽  
Young People ◽  
Health Care Utilization ◽  
Care Utilization ◽  
Children And Young People ◽  
Long Term Ventilation

scholarly journals A systematic evidence synthesis of interventions to engage children and young people in consultations about their long-term conditions

2017 ◽  
Vol 22 (1) ◽  
pp. 122-146 ◽  
Author(s):  
Lucy Bray ◽  
Michelle Maden ◽  
Toni Bewley ◽  
Bernie Carter
Keyword(s):  
Young People ◽  
Evidence Synthesis ◽  
Grey Literature ◽  
Long Term Conditions ◽  
Children And Young People ◽  
Face To Face ◽  
Related Information ◽  
Systematic Development

Children and young people with long-term conditions are not always provided with opportunities to engage fully in consultations. This systematic review examined the effectiveness or worth of methods used to engage children and young people with long-term conditions in their consultations. Searches were undertaken in October 2016 in eight databases and of the grey literature. Two reviewers independently screened the results, extracted data and assessed the quality of the studies using a validated and reliable checklist. A narrative synthesis of mixed method data was undertaken. Twelve studies were included in the review. Interventions used to engage children and young people mainly focused on face-to-face outpatient consultations, with an emphasis on diabetes and asthma. Most of the interventions focused on either improving health professionals’ communication skills or encouraging children’s and young people’s engagement through providing condition-related information or a structured way to be included in consultations. Fewer interventions were child-led or directed towards developing children’s and young people’s skills to become key reporters of their condition. This review has demonstrated that interventions targeted at children and young people with long-term conditions can improve their levels of engagement in consultations. There is a need for more systematic development and robust evaluation of interventions to improve children’s active participation in consultations.

scholarly journals Evaluation of a mental health drop-in centre offering brief transdiagnostic psychological assessment and treatment for children and adolescents with long-term physical conditions and their families: a single-arm, open, non-randomised trial

2020 ◽  
pp. ebmental-2020-300197
Author(s):  
Matteo Catanzano ◽  
Sophie D Bennett ◽  
Ellie Kerry ◽  
Holan Liang ◽  
Isobel Heyman ◽  
...  
Keyword(s):  
Mental Health ◽  
Young People ◽  
Health Centre ◽  
Health Needs ◽  
Mental Health Needs ◽  
Children And Young People ◽  
Physical Conditions ◽  
Assessment And Treatment

BackgroundChildren and young people with long-term physical conditions have significantly elevated mental health needs. Transdiagnostic, brief psychological interventions have the potential to increase access to evidence-based psychological treatments for patients who attend health services primarily for physical health needs.ObjectiveA non-randomised study was conducted to assess the impact of brief, transdiagnostic psychological interventions in children and young people presenting at a drop-in mental health centre in the reception area of a paediatric hospital.Methods186 participants attending a transdiagnostic mental health drop-in centre were allocated to assessment and psychological intervention based on a clinical decision-making algorithm. Interventions included signposting, guided self-help based on a modular psychological treatment and referral to the hospital’s paediatric psychology service. The primary transdiagnostic mental health outcome measure was the parent-reported Strengths and Difficulties Questionnaire (SDQ), which was given at baseline and 6 months post-baseline.FindingsThere was a significant positive impact of attending the drop-in mental health centre on the SDQ (Cohen’s d=0.22) and on the secondary outcome measure of Paediatric Quality of life (Cohen’s d=0.55).ConclusionsA mental health drop-in centre offering brief, transdiagnostic assessment and treatment may reduce emotional and behavioural symptoms and improve quality of life in children and young people with mental health needs in the context of long-term physical conditions. A randomised controlled trial to investigate the specificity of any effects is warranted.Clinical implicationsDrop-in centres for mental health needs may increase access and have beneficial effects for children and young people with physical conditions.

scholarly journals Adalimumab, etanercept and ustekinumab for treating plaque psoriasis in children and young people: systematic review and economic evaluation

2017 ◽  
Vol 21 (64) ◽  
pp. 1-244 ◽  
Author(s):  
Ana Duarte ◽  
Teumzghi Mebrahtu ◽  
Pedro Saramago Goncalves ◽  
Melissa Harden ◽  
Ruth Murphy ◽  
...  
Keyword(s):  
Cost Effectiveness ◽  
Young People ◽  
Clinical Effectiveness ◽  
Children And Young People ◽  
Biological Treatments ◽  
Randomised Controlled ◽  
The Cost

Background Psoriasis is a chronic inflammatory disease that predominantly affects the skin. Adalimumab (HUMIRA®, AbbVie, Maidenhead, UK), etanercept (Enbrel®, Pfizer, New York, NY, USA) and ustekinumab (STELARA®, Janssen Biotech, Inc., Titusville, NJ, USA) are the three biological treatments currently licensed for psoriasis in children. Objective To determine the clinical effectiveness and cost-effectiveness of adalimumab, etanercept and ustekinumab within their respective licensed indications for the treatment of plaque psoriasis in children and young people. Data sources Searches of the literature and regulatory sources, contact with European psoriasis registries, company submissions and clinical study reports from manufacturers, and previous National Institute for Health and Care Excellence (NICE) technology appraisal documentation. Review methods Included studies were summarised and subjected to detailed critical appraisal. A network meta-analysis incorporating adult data was developed to connect the effectiveness data in children and young people and populate a de novo decision-analytic model. The model estimated the cost-effectiveness of adalimumab, etanercept and ustekinumab compared with each other and with either methotrexate or best supportive care (BSC), depending on the position of the intervention in the management pathway. Results Of the 2386 non-duplicate records identified, nine studies (one randomised controlled trial for each drug plus six observational studies) were included in the review of clinical effectiveness and safety. Etanercept and ustekinumab resulted in significantly greater improvements in psoriasis symptoms than placebo at 12 weeks’ follow-up. The magnitude and persistence of the effects beyond 12 weeks is less certain. Adalimumab resulted in significantly greater improvements in psoriasis symptoms than methotrexate for some but not all measures at 16 weeks. Quality-of-life benefits were inconsistent across different measures. There was limited evidence of excess short-term adverse events; however, the possibility of rare events cannot be excluded. The majority of the incremental cost-effectiveness ratios for the use of biologics in children and young people exceeded NICE’s usual threshold for cost-effectiveness and were reduced significantly only when combined assumptions that align with those made in the management of psoriasis in adults were adopted. Limitations The clinical evidence base for short- and long-term outcomes was limited in terms of total participant numbers, length of follow-up and the absence of young children. Conclusions The paucity of clinical and economic evidence to inform the cost-effectiveness of biological treatments in children and young people imposed a number of strong assumptions and uncertainties. Health-related quality-of-life (HRQoL) gains associated with treatment and the number of hospitalisations in children and young people are areas of considerable uncertainty. The findings suggest that biological treatments may not be cost-effective for the management of psoriasis in children and young people at a willingness-to-pay threshold of £30,000 per quality-adjusted life-year, unless a number of strong assumptions about HRQoL and the costs of BSC are combined. Registry data on biological treatments would help determine safety, patterns of treatment switching, impact on comorbidities and long-term withdrawal rates. Further research is also needed into the resource use and costs associated with BSC. Adequately powered randomised controlled trials (including comparisons against placebo) could substantially reduce the uncertainty surrounding the effectiveness of biological treatments in biologic-experienced populations of children and young people, particularly in younger children. Such trials should establish the impact of biological therapies on HRQoL in this population, ideally by collecting direct estimates of EuroQol-5 Dimensions for Youth (EQ-5D-Y) utilities. Study registration This study is registered as PROSPERO CRD42016039494. Funding The National Institute for Health Research Health Technology Assessment programme.

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