Advance care planning in perinatal settings: national survey of implementation using Normalisation Process Theory.

BACKGROUND: Perinatal advance care planning (PnACP) is a process of formal decision-making to help families plan for their baby's care when recognised that they may have a life-limiting condition. While PnACP is recommended in policy, there is a lack of evidence to support implementation and development in the perinatal setting. OBJECTIVE: To conduct an online survey of UK and Ireland perinatal providers to examine how PnACP is operationalised in current practice. METHODS: A secure online questionnaire was developed to collect data on (1) 'what' is being implemented, (2) the 'processes' being used, (3) perceived impact and (4) unmet support needs. Data were analysed using basic descriptive statistics, thematic analysis and through a conceptual lens of Normalisation Process Theory. RESULTS: Questionnaires were completed by 108 health professionals working in 108 maternity and neonatal services, representing 90 organisations across the UK and Ireland. This revealed many resources and examples of good practice to support PnACP. However, there was wide variation in how PnACP was conceptualised and implemented. Existing frameworks, pathways and planning tools are not routinely embedded into care, and respondents identified many barriers that negatively impact the quality of care. They called for better integration of palliative care principles into acute settings and more investment in staff training to support families at existentially difficult times. CONCLUSIONS: Priorities for additional perinatal service development include greater sharing of best practice and effective strategies to target the unique challenges of PnACP, such as time-sensitive collaborative working and decision-making in the face of high uncertainty.

The Growth Hormone Deficiency (GHD) Reversal Trial: effect on final height of discontinuation versus continuation of growth hormone treatment in pubertal children with isolated GHD-a non-inferiority Randomised Controlled Trial (RCT).

BACKGROUND: Growth hormone deficiency (GHD) is the commonest endocrine cause of short stature and may occur in isolation (I-GHD) or combined with other pituitary hormone deficiencies. Around 500 children are diagnosed with GHD every year in the UK, of whom 75% have I-GHD. Growth hormone (GH) therapy improves growth in children with GHD, with the goal of achieving a normal final height (FH). GH therapy is given as daily injections until adult FH is reached. However, in many children with I-GHD their condition reverses, with a normal peak GH detected in 64-82% when re-tested at FH. Therefore, at some point between diagnosis and FH, I-GHD must have reversed, possibly due to increase in sex hormones during puberty. Despite increasing evidence for frequent I-GHD reversal, daily GH injections are traditionally continued until FH is achieved. METHODS/DESIGN: Evidence suggests that I-GHD children who re-test normal in early puberty reach a FH comparable to that of children without GHD. The GHD Reversal study will include 138 children from routine endocrine clinics in twelve UK and five Austrian centres with I-GHD (original peak GH < 6.7 mcg/L) whose deficiency has reversed on early re-testing. Children will be randomised to either continue or discontinue GH therapy. This phase III, international, multicentre, open-label, randomised controlled, non-inferiority trial (including an internal pilot study) will assess whether children with early I-GHD reversal who stop GH therapy achieve non-inferior near FH SDS (primary outcome; inferiority margin 0.55 SD), target height (TH) minus near FH, HRQoL, bone health index and lipid profiles (secondary outcomes) than those continuing GH. In addition, the study will assess cost-effectiveness of GH discontinuation in the early retesting scenario. DISCUSSION: If this study shows that a significant proportion of children with presumed I-GHD reversal generate enough GH naturally in puberty to achieve a near FH within the target range, then this new care pathway would rapidly improve national/international practice. An assumed 50% reversal rate would provide potential UK health service cost savings of £1.8-4.6 million (€2.05-5.24 million)/year in drug costs alone. This new care pathway would also prevent children from having unnecessary daily GH injections and consequent exposure to potential adverse effects. TRIAL REGISTRATION: EudraCT number: 2020-001006-39.

Barriers and facilitators for the provision of radiology services in Zimbabwe: A qualitative study based on staff experiences and observations.

Despite its fundamental role in diagnostic and curative care, radiology has been described as a neglected essential service in many low and middle-income countries (LMICs). Previous studies have demonstrated basic equipment and infrastructure shortages in LMIC settings, but no studies to date have gone further in understanding the perceptions and experiences of staff delivering radiology services, as a way of identifying their perspectives on barriers and facilitators for delivering services, and the potential for where improvements can be made. Our qualitative study aimed to: (a) identify barriers for delivering radiology services, and (b) suggest potential facilitators for improvement of radiology service delivery in the Zimbabwean context; from the perspective of radiology staff. We conducted semi-structured interviews (n = 13) and three focus groups (n = 24 radiographers), followed by four half- to full- days of field observations to validate insights from the interviews and focus groups in all three public hospitals and one private hospital in the Harare metropolitan area. Our study identified four main barriers for delivering radiology services: (i) poor basic infrastructure, equipment, and consumables; (ii) suboptimal equipment maintenance; (iii) shortage of radiology staff and skills development; and (iv) lack of wider integration and support for radiology services. We also identified a strong sense of motivation among staff to keep radiology services, pointing to what may be an enabler and facilitator for improving radiology services. These findings point to potential risks to patient safety and quality of delivering radiology services. More importantly, we found a strong sense of personal motivation displayed by the staff, suggesting there is the potential to maintain and improve existing practices, but this would require investments to train and remunerate more radiology staff, as well as investing in continuing professional development.

Analysis of Anxiety, Depression and Fear of Progression at 12 Months Post-Cytoreductive Surgery in the SOCQER-2 (Surgery in Ovarian Cancer-Quality of Life Evaluation Research) Prospective, International, Multicentre Study.

Patients with ovarian cancer (OC) often experience anxiety, depression and fear of progression (FOP); however, it is unclear whether surgical complexity has a role to play. We investigated the prevalence of anxiety, depression and FOP at 12 months post-cytoreductive surgery and investigated associations with surgical complexity, patient (age, ethnicity, performance status, BMI) and tumour (stage, disease load) factors. One hundred and forty-one patients with FIGO Stage III-IV OC, who did not have disease progression at 12 months post-surgery, completed the Hospital Anxiety and Depression Scale and FOP short-form questionnaire. Patients underwent surgery with low (40.4%), intermediate (31.2%) and high (28.4%) surgical complexity scores. At 12 months post-surgery, 99 of 141 (70%) patients with advanced OC undergoing surgery experienced clinically significant anxiety, 21 of 141 (14.9%) patients experienced moderate to severe depression and 37 of 140 (26.4%) experienced dysfunctional FOP. No associations were identified between the three different surgical complexity groups with regards to anxiety, depression or FOP scores. Unsurprisingly, given the natural history of the disease, most patients with OC suffer from anxiety, depression and fear of progression after completion of first-line cancer treatment. Surgical complexity at the time of surgery is not associated with a deleterious impact on anxiety, depression or FOP for patients with OC. Patients with OC experience a profound mental health impact and should be offered mental health support throughout their cancer journey.

Clinical handover communication at maternity shift changes and women's safety in Banjul, the Gambia: a mixed-methods study.

BACKGROUND: Clinical handover is a vital communication process for patient safety; transferring patient responsibility between healthcare professionals (HCPs). Exploring handover processes in maternity care is fundamental for service quality, addressing continuity of care and maternal mortality. METHODS: This mixed-methods study was conducted in all three maternity hospitals in Banjul, The Gambia. Shift-to-shift maternity handovers were observed and compared against a standard investigating content and environment. Semi-structured interviews and focus group discussions with doctors, midwives and nurses explored handover experience. RESULTS: One hundred ten nurse/midwife shift-to-shift handovers were observed across all shift times and maternity wards; only 666 of 845 women (79%) were handed over. Doctors had no scheduled handover. Shift-leads alone gave/received handover, delayed [median 35 min, IQR 24-45] 82% of the time; 96% of handovers were not confidential and 29% were disrupted. Standardised guidelines and training were lacking. A median 6 of 28 topics [IQR 5-9] were communicated per woman. Information varied significantly by time, high-risk classification and location. For women in labour, 10 [IQR 8-14] items were handed-over, 8 [IQR 5-11] for women classed 'high-risk', 5 [IQR 4-7] for ante/postnatal women (p < 0.001); > 50% had no care management plan communicated. Twenty-one interviews and two focus groups were conducted. Facilitators and barriers to effective handover surrounding three health service factors emerged; health systems (e.g. absence of formalised handover training), organisation culture (e.g. absence of multidisciplinary team handover) and individual clinician factors (e.g. practical barriers such as transportation difficulties in getting to work). CONCLUSION: Maternity handover was inconsistent, hindered by contextual barriers including lack of team communication and guidelines, delays, with some women omitted entirely. Findings alongside HCPs views demonstrate feasible opportunities for enhancing handover, thereby improving women's safety.

Investigating the Impact of Ultra-Radical Surgery on Survival in Advanced Ovarian Cancer Using Population-Based Data in a Multicentre UK Study.

We investigated URS and impact on survival in whole patient cohorts with AOC treated within gynaecological cancer centres that participated in the previously presented SOCQER 2 study. National cancer registry datasets were used to identify FIGO Stage 3,4 and unknown stage patients from 11 cancer centres that had previously participated in the SOCQER2 study. Patient outcomes' association with surgical ethos were evaluated using logistic regression and Cox proportional hazards. Centres were classified into three groups based on their surgical complexity scores (SCS); those practicing mainly low complexity, (5/11 centres with >70% low SCS procedures, 759 patients), mainly intermediate (3/11, 35−50% low SCS, 356 patients), or mainly high complexity surgery (3/11, >35% high SCS, 356 patients). Surgery rates were 43.2% vs. 58.4% vs. 60.9%. across mainly low, intermediate and high SCS centres, respectively, p < 0.001. Combined surgery and chemotherapy rates were 39.2% vs. 51.8% vs. 38.3% p < 0.000 across mainly low, intermediate and high complexity groups, respectively. Median survival was 23.1 (95% CI 19.0 to 27.2) vs. 22.0 (95% CI 17.6 to 26.3) vs. 17.9 months (95% CI 15.7 to 20.1), p = 0.043 in mainly high SCS, intermediate, and low SCS centres, respectively. In an age and deprivation adjusted model, compared to patients in the high SCS centres, patients in the low SCS group had an HR of 1.21 (95% CI 1.03 to 1.40) for death. Mainly high/intermediate SCS centres have significantly higher surgery rates and better survival at a population level. Centres that practice mainly low complexity surgery should change practice. This study provides support for the utilization of URS for patients with advanced OC.

Quality of life from cytoreductive surgery in advanced ovarian cancer: Investigating the association between disease burden and surgical complexity in the international, prospective, SOCQER-2 cohort study.

OBJECTIVE: To investigate quality of life (QoL) and association with surgical complexity and disease burden after surgical resection for advanced ovarian cancer in centres with variation in surgical approach. DESIGN: Prospective multicentre observational study. SETTING: Gynaecological cancer surgery centres in the UK, Kolkata, India, and Melbourne, Australia. SAMPLE: Patients undergoing surgical resection (with low, intermediate or high surgical complexity score, SCS) for late-stage ovarian cancer. MAIN OUTCOME MEASURES: Primary: change in global score on the European Organisation for Research and Treatment of Cancer (EORTC) core quality-of-life questionnaire (QLQ-C30). Secondary: EORTC ovarian cancer module (OV28), progression-free survival. RESULTS: Patients' preoperative disease burden and SCS varied between centres, confirming differences in surgical ethos. QoL response rates were 90% up to 18 months. Mean change from the pre-surgical baseline in the EORTC QLQ-C30 was 3.4 (SD 1.8, n = 88) in the low, 4.0 (SD 2.1, n = 55) in the intermediate and 4.3 (SD 2.1, n = 52) in the high-SCS group after 6 weeks (p = 0.048), and 4.3 (SD 2.1, n = 51), 5.1 (SD 2.2, n = 41) and 5.1 (SD 2.2, n = 35), respectively, after 12 months (p = 0.133). In a repeated-measures model, there were no clinically or statistically meaningful differences in EORTC QLQ-C30 global scores between the three SCS groups (p = 0.840), but there was a small statistically significant improvement in all groups over time (p < 0.001). The high-SCS group experienced small to moderate decreases in physical (p = 0.004), role (p = 0.016) and emotional (p = 0.001) function at 6 weeks post-surgery, which resolved by 6-12 months. CONCLUSIONS: The global QoL of patients undergoing low-, intermediate- and high-SCS surgery improved at 12 months after surgery and was no worse in patients undergoing extensive surgery. TWEETABLE ABSTRACT: Compared with surgery of lower complexity, extensive surgery does not result in poorer quality of life in patients with advanced ovarian cancer.

Exploring stakeholder views on intervening in hospital around childhood secondhand smoke exposure (Precedent): a protocol for a qualitative study.

INTRODUCTION: Secondhand smoke exposure (SHSe) in childhood is linked with increased morbidity and mortality. Hospital or secondary care contact may present a 'teachable moment' to provide parents with support to change their home smoking behaviours to reduce children's SHSe. There is a lack of robust qualitative evidence around parents and healthcare professionals (HCPs) views on using this teachable moment to successfully initiate behavioural change. We aim to identify and understand what is important to stakeholders with a view to informing the development of a support package to help parents change their home smoking behaviours. METHODS AND ANALYSIS: This qualitative study will be theoretically underpinned by the Capability, Opportunity and Motivation Behaviour (COM-B) model of behavioural change. It will involve semistructured interviews and/or discussion groups with up to 20 parents who smoke and up to 25 HCPs. Stakeholders will be recruited from a single National Health Service children's hospital in England. Interviews and/or discussion groups will be audio recorded, transcribed and anonymised. The transcripts and any field notes will be analysed using the framework method. Initially, we will apply COM-B to the data deductively and will then code inductively within each domain. ETHICS AND DISSEMINATION: The protocol for this study received a favourable outcome from the East Midlands Leicester Central Research Ethics Committee (19/EM/0171). Results will be written up as part of a PhD thesis, submitted for publication in peer-reviewed journals and presentation at conferences. TRIAL REGISTRATION NUMBER: ISRCTN40084089.

Facilitating better postnatal care with women-held documents in The Gambia: a mixed-methods study.

BACKGROUND: Women-held documents are a basic component of continuity of maternity care. The use and completion of women-held documents following discharge could improve treatment and care for postnatal women. Using a mixed-methods study design, we aimed to assess the number, type, quality and completeness of women-held discharge documents, identify factors contributing to document completeness and facilitators or barriers for effective use of the documents. METHODS: Documents given to women at discharge from three hospitals in the Greater Banjul Area, The Gambia, were reviewed for content and quality. All women completed a questionnaire on the use of the documents. Poisson regression was used to estimate factors predicting document completion. Semi-structured interviews (n = 21) and focus groups (n = 2) were carried out with healthcare professionals (HCPs). RESULTS: Nearly all (n = 211/212; 99%) women were given a document to take home. The most complete document (maternal record) had on average 17/26 (65%) items completed and 10% of women held an illegible document. None of the women's sociodemographic or clinical characteristics predicted document completeness. The following facilitators for effective use of documents were identified from the women's responses to the questionnaire and interviews with HCPs: 94% of women thought written information is important, 99% plan to have postnatal check-ups and 67% plan to use their documents, HCPs understand the importance of the documents and were familiar with the document's use and content. The following barriers for effective use of documents were identified: HCPs had too many women-held documents to complete at discharge, there is no national protocol and HCPs think women do not understand the documents due to a lack of education and that women often lose or forget their documents. CONCLUSIONS: Women-held documents are well established in The Gambia; though quality and completeness needs improving. Future research should determine the impact of using only one document at discharge, protocols and training on completeness, among other outcomes, and on ways to ensure all women are using the documents for their postnatal care.

A Mixed-Methods Systematic Review and Synthesis of Secondary Care Interventions to Reduce Secondhand Smoke Exposure Among Children and Young People.

INTRODUCTION: Childhood secondhand smoke exposure (SHSe) is linked with increased morbidity and mortality. Hospital or secondary care contact presents a "teachable moment" to support parents to change their home smoking behaviors to reduce children's SHSe. AIMS AND METHODS: This mixed-methods review explores: (1) if existing interventions in this context are effective, (2) if they are reported in sufficient detail to be replicated, (3) the experiences of health care professionals delivering such interventions, and (4) the experiences of parents receiving such interventions. Five electronic databases and the gray literature were searched for relevant literature published and indexed January 1980 to February 2020. Fourteen papers reporting 12 studies (nine quantitative and five qualitative) were included. Aligned with the Joanna Briggs Institute method, a segregated approach was used involving independent syntheses of the quantitative and qualitative data followed by an overall mixed-methods synthesis. RESULTS: There was some evidence of effective interventions that resulted in a short-term (<6 months) reduction in children's SHSe when SHSe was subjectively measured. This was not seen in longer-term follow-up (>6 months) or when SHSe was measured objectively. Inconsistencies with reporting make replication challenging. Experiential evidence suggests a mismatch between stakeholder preferences and interventions being offered. CONCLUSIONS: The pediatric secondary care interventions included in this analysis failed to show statistically significant evidence of longer-term effectiveness to reduce children's SHSe in all but one low-quality study. There was also inadequate reporting of interventions limiting assessment of effectiveness. It offers further insights into areas to target to develop effective interventions. IMPLICATIONS: This review used rigorous methods to explore the current, global literature on how children's exposure to secondhand smoke is being tackled in secondary care. This review identified only one low-quality intervention study showing a statistically significant reduction in children's SHSe beyond 6 months. Synthesis with qualitative research identifies a mismatch between what parents want in an intervention and what has been delivered to date. Reporting quality needs to be improved to ensure that interventions can be replicated and studies conducted within the National Health Service to ensure suitability to this setting.

Early Postnatal Discharge for Infants: A Meta-analysis.

CONTEXT: Postnatal length of hospital stay has reduced internationally but evidence-based policies to support earlier discharge are lacking. OBJECTIVE: To determine the effects of early postnatal discharge on infant outcomes. DATA SOURCES: CENTRAL (Cochrane Central Register of Controlled Trials), Medline, Embase, Cumulative Index to Nursing and Allied Health Literature , and SCI (Science Citation Index) were searched through to January 15, 2018. STUDY SELECTION: Studies reporting infant outcomes with early postnatal discharge versus standard discharge were included if they met Effective Practice and Organisation of Care study design criteria. DATA EXTRACTION: Two authors independently assessed eligibility and extracted data, resolving disagreements by consensus. Data from interrupted time series (ITS) studies were extracted and reanalyzed in meta-analyses. Meta-analyses of randomized controlled trials (RCTs) used random effects models. RESULTS: Of 9298 studies, 15 met the inclusion criteria. RCT meta-analyses revealed that infants discharged <48 hours after vaginal birth and <96 hours after cesarean birth were more likely to be readmitted to the hospital within 28 days compared to standard discharge (risk ratio: 1.70; 95% confidence interval [CI] 1.34 to 2.15). ITS meta-analyses revealed a reduction in the proportion of infants readmitted within 28 days after minimum postnatal stay policies and legislation were introduced (change in slope: -0.62; 95% CI -1.83 to 0.60), with increasing impact in the first and second years (effect estimate: -4.27 [95% CI -7.91 to -0.63] and -6.23 [95% CI -10.15 to -2.32]). LIMITATIONS: Withdrawals and crossover limited the value of RCTs in this context but not ITS evidence. CONCLUSIONS: Infants discharged early after birth were more likely to be admitted within 28 days. The introduction of postnatal minimum length of stay policies was associated with a long-term reduction in neonatal hospital readmission rates.

Understanding parent preferences for NHS paediatric allergy services.

OBJECTIVES: To understand parent preferences for NHS paediatric allergy services. DESIGN: A stated preference study (discrete choice experiment). SETTING: West Midlands, UK. PARTICIPANTS: A sample of parents of children aged 16 years or younger recruited from the general population through a third party company approved by the University of Birmingham. INTERVENTION: An online questionnaire with 18 choice questions describing two hypothetical paediatric allergy specialist clinics described in terms of the clinician, information provision, additional facilities, waiting times and out of pocket expenses. Main outcome measures Preference and willingness to pay estimates for each of the specified attributes. RESULTS: Parents strongly preferred that their children be reviewed by consultants or specialist nurses formally trained in allergy compared with consultants with no formal allergy training [Willingness to pay (WTP) estimates for nurse specialist £150.9 (138.8-163.2), trained allergy consultants £218.7 (205.7-231.9), compared with consultants without formal training]. They were willing to wait longer to see trained practitioners. Parents also expressed a strong preference for improving online information regarding allergies [WTP for written information £18.4 (6.1-30.6) and £72.6 for improved online information (59.9-85.3), compared with verbal information]. Specialist clinics with additional dietician and eczema support were also preferred [WTP £29.9 (19.8-40.1), compared with no additional support]. CONCLUSIONS: Parents showed strong preference for formally trained practitioners in specialist allergy clinics. Access to improved online allergy information and additional facilities within allergy clinics were also preferred. These findings have implications for future commissioning of paediatric allergy services in the UK.

The content and completeness of women-held maternity documents before admission for labour: A mixed methods study in Banjul, The Gambia.

BACKGROUND: Women-held maternity documents are well established for enabling continuity of maternity care worldwide, with the World Health Organisation (WHO) recommending their use in effective decision-making. We aimed to assess the presence, content and completeness of women-held maternity documents at admission to hospitals in The Gambia, and investigate barriers and facilitators to their completion. METHODS: We interviewed 250 women on maternity wards of all 3 Banjul hospitals and conducted content analysis of documentation brought by women on admission for their completeness against WHO referrals criteria. Logistic regression models were used to estimate the odds of the minimum criteria being met. Two focus groups and 21 semi-structured interviews (8 doctors, 8 midwives and 5 nurses) were conducted with healthcare practitioners to explore barriers and facilitators to documented clinical information availability on admission. FINDINGS: Of the women admitted, all but 10/250 (4%) brought either a maternity card or a structured referral sheet. Of all forms of documentation, women most frequently brought the government-issued maternity card (235/250, 94%); 16% of cards had all 9 minimum criteria completed. Of the 79 referred women, 60% carried standardised referral forms. Only 30% of 97 high-risk women had risk-status recorded. Women were less likely to have documents complete if they were illiterate, had not attended three maternity appointments, or lived more than one hour from hospital. During qualitative interviews, three themes were identified: women as agents for transporting information and documents (e.g. remembering to bring maternity cards); role of individual healthcare professionals' actions (e.g. legibility of handwriting); system and organisational culture (e.g. standardised referral guidelines). CONCLUSION: Women rarely forgot their maternity card, but documents brought at admission were frequently incomplete. This is a missed opportunity to enhance handover and quality of care, especially for high-risk women. National guidelines were recognised by providers as needed for good document keeping and would enhance the women-held maternity documents' contribution to improving both safety and continuity of care.

Does sites of recurrence impact survival in secondary cytoreduction surgery for recurrent epithelial ovarian cancer?

Outcomes of secondary cytoreduction surgery (SCS) were evaluated for morbidity, progression free survival (PFS) and overall survival (OS) and factors influencing results were explored. Retrospective analysis of all cases of SCS for epithelial ovarian cancer (EOC) was performed from October 2010 to December 2017. 62 patients were prospectively identified as candidates for SCS and 57 underwent SCS. 20(35%) patients required bowel resection/s, 24(42%) had nodal resections and 11(19%) had extensive upper abdominal surgery. 51(89%) achieved complete cytoreduction. After a median follow-up of 30 months (range 9-95 months), median PFS was 32 months (CI 17-76 months) and median OS has not reached. Seventeen patients have died and 32 have progressed. Three patients had Clavien-Dindo grade-3 and two had grade-4 morbidity. Patients who had multi-site recurrence had shorter median PFS (p = 0.04) and patients who required bowel resections had lower median OS (p = 0.009) compared to rest of the cohort.IMPACT STATEMENTWhat is already known on this subject? Retrospective studies have confirmed survival advantage for recurrence in epithelial ovarian cancer and recommend SCS for carefully selected patients. This finding is being evaluated in randomised control trials currently.What do the results of this study add? This study presents excellent results for survival outcomes after SCS and highlights importance of careful selection of patients with a goal to achieve complete cytoreduction. In addition, for the first time in literature, this study also explores various factors that may influence results and finds that there are no differences in survival outcomes whether these patients had early stage or advanced stage disease earlier. Patients who have multisite recurrence tend to have shorter PFS but no difference were noted for overall survival. Patients who have recurrence in bowels necessitating resection/s have a shorter median OS compared to rest of cohorts, however, still achieving a good survival time.What are the implications of these findings for clinical practice and/or further research? These findings will raise awareness for the clinicians and patients while discussing surgical outcomes and would set an achievable standard to improve cancer services. The pattern of recurrence and associated outcomes also point towards difference in biological nature of recurrent disease and could provide an opportunity for scientists to study the biological makeup of these recurrent tumours.

Improving health, wellbeing and parenting skills in parents of children with special health care needs and medical complexity - a scoping review.

BACKGROUND: Parenting children with special health care needs can be challenging particularly if children have complex conditions. Parents may struggle to manage their child's health and their own emotions, contributing to poorer health outcomes for the family. Frequent healthcare contact presents opportunities to intervene, but current evidence review is limited. This review scopes and synthesizes interventions to improve health, wellbeing and parenting skills. METHODS: Using formal scoping review methodology MEDLINE, EMBASE, PsycINFO, CINAHL, The Cochrane Library, ERIC, ASSIA, HMIC and OpenGrey were searched to February 2017. Citations were double screened according to predetermined eligibility criteria. Data were extracted and synthesized on study design, population, measurement tools, and results. RESULTS: Sixty-five studies from 10,154 citations were included spanning parenting programs, other parent behavior change interventions, peer support, support for hospital admission and discharge and others. Interventions for parents of children with a wide range of conditions were included. These targeted a broad selection of parent outcomes, delivered by a wide variety of professionals and lay workers. Most studies reported positive outcomes. No serious adverse events were noted but issues identified included group and peer relationship dynamics, timing of interventions in relation to the child's disease trajectory, the possibility of expectations not fulfilled, and parent's support needs following intervention. Children with medical complexity were not identified explicitly in any studies. CONCLUSIONS: The range of interventions identified in this review confirms that parents have significant and diverse support needs, and are likely to benefit from a number of interventions targeting specific issues and outcomes across their child's condition trajectory. There is much scope for these to be provided within existing multi-disciplinary teams during routine health care contacts. Careful tailoring is needed to ensure interventions are both feasible for delivery within routine care settings and relevant and accessible for parents of children across the complexity spectrum. Further review of the existing literature is needed to quantify the benefits for parents and assess the quality of the evidence. Further development of interventions to address issues that are relevant and meaningful to parents is needed to maximize intervention effectiveness in this context.

Quality of life outcomes following surgery for advanced ovarian cancer: a systematic review and meta-analysis.

BACKGROUND: Quality of life after ovarian cancer treatment is an important goal for patients. Complex debulking surgeries and platinum based chemotherapy are often required but quality of life after surgery is rarely reported. OBJECTIVES: To describe quality of life outcomes after surgery for advanced ovarian cancer in a systematic review and meta-analysis. SEARCH STRATEGY: MEDLINE, EMBASE, and CENTRAL through March 2019 with no language restrictions. SELECTION CRITERIA: Included studies reported quality of life in women diagnosed with primary advanced ovarian cancer, fallopian tube carcinoma or primary peritoneal cancer undergoing cytoreduction surgery. DATA COLLECTION AND ANALYSIS: Data on extent and timing of surgery, quality of life outcomes, and surgical complications were extracted and study quality assessed. RESULTS: Three randomized controlled trials comparing primary surgery to neoadjuvant chemotherapy had heterogeneous quality of life outcomes with no difference between arms, although there was a clinical improvement in global quality of life scores in both arms at 6 months compared with baseline. Data from two observational studies showed no meaningful difference in quality of life scores between patients undergoing standard or extensive surgery at 6 months. CONCLUSIONS: There was no clinically important difference in the quality of life of patients undergoing either primary debulking surgery or neoadjuvant chemotherapy. There is insufficient evidence on quality of life outcomes of patients undergoing extensive or ultra-radical surgery compared with those undergoing less extensive surgery. Quality of life outcomes matter to patients, but there is little evidence to inform patient choice regarding the extent of surgery.

Long term tapering versus standard prednisolone treatment for first episode of childhood nephrotic syndrome: phase III randomised controlled trial and economic evaluation.

OBJECTIVE: To determine whether extending initial prednisolone treatment from eight to 16 weeks in children with idiopathic steroid sensitive nephrotic syndrome improves the pattern of disease relapse. DESIGN: Double blind, parallel group, phase III randomised placebo controlled trial, including a cost effectiveness analysis. SETTING: 125 UK National Health Service district general hospitals and tertiary paediatric nephrology centres. PARTICIPANTS: 237 children aged 1-14 years with a first episode of steroid sensitive nephrotic syndrome. INTERVENTIONS: Children were randomised to receive an extended 16 week course of prednisolone (total dose 3150 mg/m2) or a standard eight week course of prednisolone (total dose 2240 mg/m2). The drug was supplied as 5 mg tablets alongside matching placebo so that participants in both groups received the same number of tablets at any time point in the study. A minimisation algorithm ensured balanced treatment allocation by ethnicity (South Asian, white, or other) and age (5 years or less, 6 years or more). MAIN OUTCOME MEASURES: The primary outcome measure was time to first relapse over a minimum follow-up of 24 months. Secondary outcome measures were relapse rate, incidence of frequently relapsing nephrotic syndrome and steroid dependent nephrotic syndrome, use of alternative immunosuppressive treatment, rates of adverse events, behavioural change using the Achenbach child behaviour checklist, quality adjusted life years, and cost effectiveness from a healthcare perspective. Analysis was by intention to treat. RESULTS: No significant difference was found in time to first relapse (hazard ratio 0.87, 95% confidence interval 0.65 to 1.17, log rank P=0.28) or in the incidence of frequently relapsing nephrotic syndrome (extended course 60/114 (53%) v standard course 55/109 (50%), P=0.75), steroid dependent nephrotic syndrome (48/114 (42%) v 48/109 (44%), P=0.77), or requirement for alternative immunosuppressive treatment (62/114 (54%) v 61/109 (56%), P=0.81). Total prednisolone dose after completion of the trial drug was 6674 mg for the extended course versus 5475 mg for the standard course (P=0.07). There were no statistically significant differences in serious adverse event rates (extended course 19/114 (17%) v standard course 27/109 (25%), P=0.13) or adverse event rates, with the exception of behaviour, which was poorer in the standard course group. Scores on the Achenbach child behaviour checklist did not, however, differ. Extended course treatment was associated with a mean increase in generic quality of life (0.0162 additional quality adjusted life years, 95% confidence interval -0.005 to 0.037) and cost savings (difference -£1673 ($2160; €1930), 95% confidence interval -£3455 to £109). CONCLUSIONS: Clinical outcomes did not improve when the initial course of prednisolone treatment was extended from eight to 16 weeks in UK children with steroid sensitive nephrotic syndrome. However, evidence was found of a short term health economic benefit through reduced resource use and increased quality of life. TRIAL REGISTRATION: ISRCTN16645249; EudraCT 2010-022489-29.

How do stakeholders experience the adoption of electronic prescribing systems in hospitals? A systematic review and thematic synthesis of qualitative studies.

BACKGROUND: Electronic prescribing (ePrescribing) or computerised provider/physician order entry (CPOE) systems can improve the quality and safety of health services, but the translation of this into reduced harm for patients remains unclear. This review aimed to synthesise primary qualitative research relating to how stakeholders experience the adoption of ePrescribing/CPOE systems in hospitals, to help better understand why and how healthcare organisations have not yet realised the full potential of such systems and to inform future implementations and research. METHODS: We systematically searched 10 bibliographic databases and additional sources for citation searching and grey literature, with no restriction on date or publication language. Qualitative studies exploring the perspectives/experiences of stakeholders with the implementation, management, use and/or optimisation of ePrescribing/CPOE systems in hospitals were included. Quality assessment combined criteria from the Critical Appraisal Skills Programme Qualitative Checklist and the Standards for Reporting Qualitative Research guidelines. Data were synthesised thematically. RESULTS: 79 articles were included. Stakeholders' perspectives reflected a mixed set of positive and negative implications of engaging in ePrescribing/CPOE as part of their work. These were underpinned by further-reaching change processes. Impacts reported were largely practice related rather than at the organisational level. Factors affecting the implementation process and actions undertaken prior to implementation were perceived as important in understanding ePrescribing/CPOE adoption and impact. CONCLUSIONS: Implementing organisations and teams should consider the breadth and depth of changes that ePrescribing/CPOE adoption can trigger rather than focus on discrete benefits/problems and favour implementation strategies that: consider the preimplementation context, are responsive to (and transparent about) organisational and stakeholder needs and agendas and which can be sustained effectively over time as implementations develop and gradually transition to routine use and system optimisation.

Sixteen-week versus standard eight-week prednisolone therapy for childhood nephrotic syndrome: the PREDNOS RCT.

BACKGROUND: The optimal corticosteroid regimen for treating the presenting episode of steroid-sensitive nephrotic syndrome (SSNS) remains uncertain. Most UK centres use an 8-week regimen, despite previous systematic reviews indicating that longer regimens reduce the risk of relapse and frequently relapsing nephrotic syndrome (FRNS). OBJECTIVES: The primary objective was to determine whether or not an extended 16-week course of prednisolone increases the time to first relapse. The secondary objectives were to compare the relapse rate, FRNS and steroid-dependent nephrotic syndrome (SDNS) rates, requirement for alternative immunosuppressive agents and corticosteroid-related adverse events (AEs), including adverse behaviour and costs. DESIGN: Randomised double-blind parallel-group placebo-controlled trial, including a cost-effectiveness analysis. SETTING: One hundred and twenty-five UK paediatric departments. PARTICIPANTS: Two hundred and thirty-seven children presenting with a first episode of SSNS. Participants aged between 1 and 15 years were randomised (1 : 1) according to a minimisation algorithm to ensure balance of ethnicity (South Asian, white or other) and age (≤ 5 or ≥ 6 years). INTERVENTIONS: The control group (n = 118) received standard course (SC) prednisolone therapy: 60 mg/m2/day of prednisolone in weeks 1-4, 40 mg/m2 of prednisolone on alternate days in weeks 5-8 and matching placebo on alternate days in weeks 9-18 (total 2240 mg/m2). The intervention group (n = 119) received extended course (EC) prednisolone therapy: 60 mg/m2/day of prednisolone in weeks 1-4; started at 60 mg/m2 of prednisolone on alternate days in weeks 5-16, tapering by 10 mg/m2 every 2 weeks (total 3150 mg/m2). MAIN OUTCOME MEASURES: The primary outcome measure was time to first relapse [Albustix® (Siemens Healthcare Limited, Frimley, UK)-positive proteinuria +++ or greater for 3 consecutive days or the presence of generalised oedema plus +++ proteinuria]. The secondary outcome measures were relapse rate, incidence of FRNS and SDNS, other immunosuppressive therapy use, rates of serious adverse events (SAEs) and AEs and the incidence of behavioural change [using Achenbach Child Behaviour Checklist (ACBC)]. A comprehensive cost-effectiveness analysis was performed. The analysis was by intention to treat. Participants were followed for a minimum of 24 months. RESULTS: There was no significant difference in time to first relapse between the SC and EC groups (hazard ratio 0.87, 95% confidence interval 0.65 to 1.17; log-rank p = 0.3). There were also no differences in the incidence of FRNS (SC 50% vs. EC 53%; p = 0.7), SDNS (44% vs. 42%; p = 0.8) or requirement for other immunosuppressive therapy (56% vs. 54%; p = 0.8). The total prednisolone dose received following completion of study medication was 5475 mg vs. 6674 mg (p = 0.07). SAE rates were not significantly different (25% vs. 17%; p = 0.1) and neither were AEs, except poor behaviour (yes/no), which was less frequent with EC treatment. There were no differences in ACBC scores. EC therapy was associated with a mean increase in generic health benefit [0.0162 additional quality-adjusted life-years (QALYs)] and cost savings (£4369 vs. £2696). LIMITATIONS: Study drug formulation may have prevented some younger children who were unable to swallow whole or crushed tablets from participating. CONCLUSIONS: This trial has not shown any clinical benefit for EC prednisolone therapy in UK children. The cost-effectiveness analysis suggested that EC therapy may be cheaper, with the possibility of a small QALY benefit. FUTURE WORK: Studies investigating EC versus SC therapy in younger children and further cost-effectiveness analyses are warranted. TRIAL REGISTRATION: Current Controlled Trials ISRCTN16645249 and EudraCT 2010-022489-29. FUNDING: This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 23, No. 26. See the NIHR Journals Library website for further project information.

Steroid-sensitive nephrotic syndrome (SSNS) is one of the most common childhood kidney diseases. The kidney filters leak protein into the urine, resulting in low levels of protein in the blood and generalised swelling. If untreated, this can lead to serious complications, including infection and blood clots. The disease responds well to prednisolone, a steroid drug; however, it is very common for disease to recur (called a relapse). Doctors are uncertain how long prednisolone should be given to treat children when they first present with nephrotic syndrome. In the UK, a 2-month course has traditionally been used. However, a number of research studies have suggested that giving prednisolone for ≥ 3 months may reduce the number of children who relapse and also the number who develop lots of relapses (called frequently relapsing nephrotic syndrome; FRNS). We recruited 237 children presenting with SSNS. Half were given an 8-week standard course of prednisolone and the other half a 16-week extended course (EC). We used placebo (dummy tablets) so that the participants and doctors did not know which treatment group they were in. Participants were followed for a minimum of 24 months and monitored for the development of relapses and prednisolone side effects, including behavioural problems. A cost analysis was performed. Giving EC prednisolone did not delay the development of disease relapse. There was also no difference in the number of children who developed FRNS or steroid-dependent nephrotic syndrome or who needed to be given other treatments. The rate of prednisolone side effects was the similar in the two treatment groups. EC treatment was, however, cheaper by £1673. Therefore, we conclude that there is no clinical benefit associated with the administration of EC prednisolone therapy in UK children presenting for the first time with SSNS. However, EC therapy was cheaper than the standard treatment.

Parent experiences with paediatric allergy pathways in the West Midlands: A qualitative study.

BACKGROUND: The prevalence, severity and complexity of allergic diseases have been increasing steadily in the United Kingdom over the last few decades. Primary care physicians are often not adequately trained in allergy management while specialist services for allergy are scarce and heterogeneous. Services, therefore, have been unable to meet the rising demand. This is particularly true for paediatric allergy services in the United Kingdom. OBJECTIVE: To understand parent experiences with paediatric allergy pathways in the West Midlands (WM) region of the United Kingdom. METHODS: Parents of children aged between 0 and 16 years from the WM region were recruited opportunistically until thematic saturation was achieved. Eighteen semi-structured interviews were carried out and transcribed verbatim. Data were analysed on NVivo software using the framework method. Themes were identified from the transcripts as well as from existing literature. RESULTS: Parents highlighted numerous issues related to allergy services in the region including difficulties with being taken seriously by their physicians, problems with accessing health care and issues with information and the need for additional supportive care for allergies. CONCLUSIONS AND CLINICAL RELEVANCE: Primary care for children with allergies in the WM is disparate. Parents experience difficulties in accessing primary and secondary care services and also obtaining timely and appropriate information regarding their child's allergies. Most parents were happy to be reviewed by either specialist nurses or by consultants in the hospital. Improving accessibility and availability of reliable information as well as provision of additional services (such as psychologists and dietetics) were highlighted by parents as being important to allergy services in the region. These findings can help inform future planning and commissioning of allergy services.