REDUCE (Reviewing long-term antidepressant use by careful monitoring in everyday practice) internet and telephone support to people coming off long-term antidepressants: protocol for a randomised controlled trial.

BACKGROUND: Around one in ten adults take antidepressants for depression in England, and their long-term use is increasing. Some need them to prevent relapse, but 30-50% could possibly stop them without relapsing and avoid adverse effects and complications of long-term use. However, stopping is not always easy due to withdrawal symptoms and a fear of relapse of depression. When general practitioners review patients on long-term antidepressants and recommend to those who are suitable to stop the medication, only 6-8% are able to stop. The Reviewing long-term antidepressant use by careful monitoring in everyday practice (REDUCE) research programme aims to identify safe and cost-effective ways of helping patients taking long-term antidepressants taper off treatment when appropriate. METHODS: Design: REDUCE is a two-arm, 1:1 parallel group randomised controlled trial, with randomisation clustered by participating family practices. SETTING: England and north Wales. POPULATION: patients taking antidepressants for longer than 1 year for a first episode of depression or longer than 2 years for repeated episodes of depression who are no longer depressed and want to try to taper off their antidepressant use. INTERVENTION: provision of 'ADvisor' internet programmes to general practitioners or nurse practitioners and to patients designed to support antidepressant withdrawal, plus three patient telephone calls from a psychological wellbeing practitioner. The control arm receives usual care. Blinding of patients, practitioners and researchers is not possible in an open pragmatic trial, but statistical and health economic data analysts will remain blind to allocation. OUTCOME MEASURES: the primary outcome is self-reported nine-item Patient Health Questionnaire at 6 months for depressive symptoms. SECONDARY OUTCOMES: depressive symptoms at other follow-up time points, anxiety, discontinuation of antidepressants, social functioning, wellbeing, enablement, quality of life, satisfaction, and use of health services for costs. SAMPLE SIZE: 402 patients (201 intervention and 201 controls) from 134 general practices recruited over 15-18 months, and followed-up at 3, 6, 9 and 12 months. A qualitative process evaluation will be conducted through interviews with 15-20 patients and 15-20 practitioners in each arm to explore why the interventions were effective or not, depending on the results. DISCUSSION: Helping patients reduce and stop antidepressants is often challenging for practitioners and time-consuming for very busy primary care practices. If REDUCE provides evidence showing that access to internet and telephone support enables more patients to stop treatment without increasing depression we will try to implement the intervention throughout the National Health Service, publishing practical guidance for professionals and advice for patients to follow, publicised through patient support groups. TRIAL REGISTRATION: ISRCTN:12417565. Registered on 7 October 2019.

A mixed-methods systematic review and meta-analysis of barriers and facilitators to paediatric symptom management at end of life.

BACKGROUND: Symptom management for infants, children and young people at end of life is complex and challenging due to the range of conditions and differing care needs of individuals of different ages. A greater understanding of these challenges could inform the development of effective interventions. AIM: To investigate the barriers and facilitators experienced by patients, carers and healthcare professionals managing symptoms in infants, children and young people at end of life. DESIGN: A mixed-methods systematic review and meta-analysis was undertaken (PROSPERO ID: CRD42019124797). DATA SOURCES: The Cochrane Library, PROSPERO, CINAHL, MEDLINE, PsycINFO, Web of Science Core Collection, ProQuest Dissertations & Theses Database, Evidence Search and OpenGrey were electronically searched from the inception of each database for qualitative, quantitative or mixed-methods studies that included data from patients, carers or healthcare professionals referring to barriers or facilitators to paediatric end-of-life symptom management. Studies underwent data extraction, quality appraisal, narrative thematic synthesis and meta-analysis. RESULTS: A total of 64 studies were included (32 quantitative, 18 qualitative and 14 mixed-methods) of medium-low quality. Themes were generated encompassing barriers/facilitators experienced by carers (treatment efficacy, treatment side effects, healthcare professionals' attitudes, hospice care, home care, families' symptom management strategies) and healthcare professionals (medicine access, treatment efficacy, healthcare professionals' demographics, treatment side effects, specialist support, healthcare professionals' training, health services delivery, home care). Only one study included patients' views. CONCLUSION: There is a need for effective communication between healthcare professionals and families, more training for healthcare professionals, improved symptom management planning including anticipatory prescribing, and urgent attention paid to the patients' perspective.

A protocol for a systematic review and meta-analysis to identify measures of breakthrough pain and evaluate their psychometric properties.

INTRODUCTION: Breakthrough pain is common in children and adults with cancer and other conditions, including those approaching end-of-life, although it is often poorly managed, possibly partly due to a lack of validated assessment tools. This review aims to (1) identify all available instruments measuring breakthrough pain in infants, children, adolescents or adults and (2) critically appraise, compare and summarise the quality of the psychometric properties of the identified instruments using COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) criteria. METHODS AND ANALYSIS: Two searches will be carried out between October 2019 and January 2020, one for each aim of the review. The Cochrane Library, International Prospective Register of Systematic Reviews, Embase, Cumulative Index of Nursing and Allied Health Literature, Medical Literature Analysis and Retrieval System Online (MEDLINE), PsycINFO, Web of Science Core Collection, Google Scholar, the ProQuest Dissertations & Theses Database, Evidence Search and OpenGrey databases will be searched from database inception until the date the search is conducted. Reference lists of eligible articles will be screened and authors in the field contacted. For search 1, articles will be screened by two reviewers by abstract, and full-text where necessary, to identify if a breakthrough pain assessment was used. Search 2 will then be conducted to identify studies evaluating measurement properties of these assessments. Two reviewers will screen articles from search 2 by title and abstract. All potentially relevant studies will be screened by full text by both reviewers. For search 2, data will be extracted in parallel with the quality assessment process, as recommended by COSMIN. Two reviewers will assess methodological quality using the COSMIN Risk of Bias checklist and the COSMIN updated criteria for good measurement properties. Findings will be summarised and, if possible, data will be pooled using meta-analysis. The quality of the evidence will be graded and summarised using the Grading of Recommendations, Assessment, Development and Evaluations (GRADE) guidelines. ETHICS AND DISSEMINATION: Results of this review will be submitted for publication in a peer review journal and presented at conferences. PROSPERO REGISTRATION NUMBER: CRD42019155583.

Barriers and facilitators experienced by patients, carers and healthcare professionals when managing symptoms in infants, children and young people at end-of-life: a mixed methods systematic review protocol.

INTRODUCTION: This protocol describes the objective and methods of a systematic review of barriers and facilitators experienced by patients, carers and healthcare professionals when managing symptoms in infants, children and young people (ICYP) at end-of-life. METHODS AND ANALYSIS: The Cochrane Library, PROSPERO, CINAHL, MEDLINE, PsycINFO, Web of Science Core Collection, ProQuest Dissertations & Theses Database, Evidence Search and OpenGrey will be electronically searched. Reference screening of relevant articles and inquiries to researchers in the field will be undertaken. Studies will be selected if they apply qualitative, quantitative or mixed-methods designs to explore barriers and facilitators experienced by patients, carers and healthcare professionals when managing symptoms in ICYP at end-of-life.Articles will be screened by title and abstract by one reviewer with a second reviewer assessing 10% of the articles. Both reviewers will read and screen all remaining potentially relevant articles. For included articles, one reviewer will extract study characteristics and one will check this.Both reviewers will undertake independent quality assessments of included studies using established and appropriate checklists including The Critical Appraisal Skills Programme Qualitative Checklist; The evaluative criteria of credibility, transferability, dependability and confirmability; The Quality Assessment Tool for Quantitative Studies, and The Mixed Methods Appraisal Tool. Data synthesis methods will be decided after data extraction and assessment. ETHICS AND DISSEMINATION: This review will inform our understanding of symptom management in ICYP at end-of-life. The findings will be reported in a peer-reviewed journal and presented at conferences. The study raises no ethical issues. PROSPERO REGISTRATION NUMBER: CRD42019124797.

Development and validation of the Adolescent Asthma Self-Efficacy Questionnaire (AASEQ).

Perceived self-efficacy is the belief that one can manage prospective situations. Good asthma self-management self-efficacy is associated with better asthma outcomes. However, a well-developed and validated tool to measure adolescent asthma self-management self-efficacy is lacking. Our objective was to develop and validate an Adolescent Asthma Self-Efficacy Questionnaire (AASEQ).The first stage of the study included a review of the literature, interviews with adolescents with asthma and consultations with parents and relevant healthcare professionals to develop a prototype scale. To assess reliability and validity, a further group of adolescents completed the prototype scale, the General Self-Efficacy Scale and KidCOPE (measures coping styles). Retesting was undertaken to assess longitudinal validity.Interviews with 28 adolescents and consultations with other stakeholders resulted in a 38-item prototype scale. Key themes were medication, symptom management, triggers, knowledge, attitude and beliefs around asthma, supportive relationships, schools and healthcare professionals. The prototype scale was completed by 243 adolescents. Factor and reliability analysis reduced it to a 27-item scale with four subsections: symptom management; medication; friends, family and school; and asthma beliefs. The 27-item scale had respectable to excellent internal consistency (α's 0.78-0.91) with results that were stable over time (intra-class correlation=0.82) in 63 subjects who completed it twice. Better adolescent asthma self-efficacy was associated with better general self-efficacy and indices of better asthma management.The AASEQ is a reliable and valid tool that is likely to aid future research and practice focused on adolescent asthma self-management and could be a useful intermediate outcome measure to assess the impact of behavioural interventions.

Barriers and facilitators to asthma self-management in adolescents: A systematic review of qualitative and quantitative studies.

BACKGROUND: Many adolescents have poor asthma control and impaired quality of life despite the availability of modern pharmacotherapy. Research suggests that poor adherence to treatment and limited engagement in self-management could be contributing factors. OBJECTIVE: To conduct a systematic review of the barriers and facilitators to self-management of asthma reported by adolescents using a narrative synthesis approach to integrate the findings. DESIGN: MEDLINE, EMBASE, CINAHL, and PsycINFO were searched for all types of study design. Full papers were retrieved for study abstracts that included data from participants aged 12-18 years referring to barriers or facilitators of asthma self-management behaviors. RESULTS: Sixteen studies (5 quantitative and 11 qualitative) underwent data extraction, quality appraisal, and thematic analysis. Six key themes were generated that encompassed barriers and/or facilitators to self-management of asthma in adolescents: Knowledge, Lifestyle, Beliefs and Attitudes, Relationships, Intrapersonal Characteristics, and Communication. CONCLUSIONS: There is a pressing need to prepare adolescents for self-management, using age-appropriate strategies that draw on the evidence we have synthesized. Current clinical practice should focus on ensuring adolescents have the correct knowledge, beliefs, and positive attitude to self-manage their illness. This needs to be delivered in a supportive environment that facilitates two-way communication, fosters adolescents' self-efficacy to manage their disease, and considers the wider social influences that impinge on self-management. Pediatr Pulmonol. 2017;52:430-442. © 2016 Wiley Periodicals, Inc.

Horses for courses? A qualitative exploration of goals formulated in mental health settings by young people, parents, and clinicians.

INTRODUCTION: This research sought to explore and categorise goals set by children and young people, parents/caregivers and jointly by a combination of children/young people, parents/caregivers and/or clinicians within mental health settings across the United Kingdom. METHOD: Using a dataset of 441 goals formed at the outset of 180 treatment episodes (2007-2010) from UK child mental health services using the Goal-Based Outcomes tool, a grounded theory approach was taken, which built on previous research into child-rated goals to develop frameworks for parent and joint goal data which were then compared with the child goal data. RESULTS: A total of 19 subthemes and four overarching themes were identified for parent goals. A total of 19 subthemes in five overarching themes were identified for joint goals. These were compared with 25 subthemes and three overarching themes for child goals. A comparison of subthemes between parent, child and joint goals demonstrated many consistencies, but also differences. Most commonly rated goals from children focused on coping with specific difficulties, personal growth and independence. Parent goals focused mainly on managing specific difficulties, parent-specific goals and improving self or life. Jointly negotiated goals focused on parent-specific goals, self-confidence and understanding, hopes for the future and managing specific problems. CONCLUSION: The results suggest that goals may capture areas not captured by other normed outcome measures. In particular, goals may capture higher order, underlying factors, such as confidence, resilience, coping, and parenting factors that may not be explored by other measures. The differences across perspectives also link to existing literature suggesting a different focus on treatment based on perspectives and highlights the potential importance when jointly agreeing goals of ensuring the voice of the child/young person is heard and included in goal setting.

Mental Health Difficulties in Early Adolescence: A Comparison of Two Cross-Sectional Studies in England From 2009 to 2014.

PURPOSE: To examine the changes in mental health difficulties in early adolescence between 2009 and 2014 in England. METHODS: Analysis reports on data from two cross-sectional samples of adolescents (aged 11-13 years) collected 5 years apart in 2009 and 2014 in secondary schools across England. Samples were matched using propensity scoring, resulting in a total pooled sample of 3,366 adolescents. Mental health difficulties were reported by participants using the Strengths and Difficulties Questionnaire. RESULTS: Overall, there were similar levels of mental health difficulties experienced by adolescents in 2009 and 2014. Notable exceptions were a significant increase in emotional problems in girls and a decrease in total difficulties in boys in 2014 compared to 2009. CONCLUSIONS: The increased prevalence of emotional problems in girls mirrors a trend found in other similar studies, and the results are discussed in the context of recent economic and societal changes. The small decrease in total difficulties in boys, although promising, clearly warrants further research.

Sleep problems in children with cerebral palsy and their relationship with maternal sleep and depression.

AIM: To compare sleep problems in children with cerebral palsy to typically developing children. To study the relationship between sleep problems in children with cerebral palsy and maternal sleep quality and depression. METHODS: Fifty-seven children with cerebral palsy aged 4-12 years were identified from a UK disability database. Maternal sleep disturbance and mood were assessed using the Pittsburgh Sleep Quality Index and the Major Depression Inventory. Child sleep problems, assessed with the Children's Sleep Habits Questionnaire, but not maternal variables, were compared to 102 typically developing children. RESULTS: Forty children (70%) were recruited with a mean age of 7.8 (SD 2.4). Sleep anxiety, night wakings, parasomnias and sleep-disordered breathing sub-scales indicated significantly more difficulties than in typically developing children. 40% of mothers of children with cerebral palsy had poor sleep quality of whom 44% had depressed mood. Child and maternal sleep disturbance were significantly correlated. Maternal sleep quality predicted 50% of the variance in maternal depression. CONCLUSIONS: Children with cerebral palsy have more sleep problems than typically developing peers. Their mothers also have disturbed sleep that correlates with maternal depression. Childhood sleep problems can be treated and should be identified in routine clinical practice.

Characterisation of sleep problems in children with Williams syndrome.

Sleep is critical to optimal daytime functioning, learning and general health. In children with established developmental disorders sleep difficulties may compound existing learning difficulties. The purpose of the present study was to evaluate the prevalence and syndrome specificity of sleep problems in Williams syndrome (WS), a neurodevelopmental disorder affecting around 1 in 20,000 live births. Parents of 64 children with WS, aged 6-12 years, and 92 age matched healthy controls were surveyed about their child's sleep habits. The Child Sleep Habits Questionnaire, general health and background information were collected from the parents. Ninety seven percent of parents reported that their children had sleep problems and reported a high prevalence of sleep difficulties: greater bedtime resistance, sleep anxiety, night waking and daytime sleepiness. This is the first study to our knowledge to survey sleep problems in a large cohort of school age children with WS. Sleep problems in children with learning difficulties are often amendable to treatment if diagnosed early. Furthermore the negative impact of sleep disturbances on daytime behaviour and learning should be measured before diagnoses of behaviourally defined disorders are considered.

A comparison of actigraphy and parental report of sleep habits in typically developing children aged 6 to 11 years.

There are limited published data comparing the information provided by parental reports of sleep habits with actigraphic information. This study compares parental report of sleep habits using the Children's Sleep Habits Questionnaire with actigraphic data in 91 typically developing children aged 6 to 11 years. The study found that sleep duration (as measured using actigraphy [ACT]) was longer in children whose parents rated their child as having enough sleep. Parental reports of night wakings did not correspond with ACT measures of night wakings. The findings show that ACT and parental reports provide differing, but complimentary, information about a child's sleep habits.