The influence of crisis resolution treatment on employment: a retrospective register-based comparative study.

Crisis resolution treatment (CRT) is a short-term acute psychiatric home-based treatment offered as an alternative to hospitalization. The purpose of CRT is to support patient recovery by maintaining and improving competencies in relation to everyday life. Individuals with mental disorders are at increased risk of leaving the labor market, which is a central aspect of everyday life. Thus, a primary outcome of interest is whether CRT enables higher employment compared with traditional hospitalization. The aim of this study was to assess the effectiveness of CRT compared with hospitalization in relation to attempted or committed suicides, admissions, readmissions and employment. This study utilized register-based psychiatric data. The CRT intervention, which was carried out in a psychiatric center (N = 374), was matched to traditional hospitalization treatment in a corresponding area (N = 9460). The outcomes (suicide attempts, suicides, admissions and readmissions) were replicated by applying propensity score matching (PSM) to evaluate the general treatment effect of CRT. The effectiveness of CRT on employment was estimated by applying PSM combined with a difference-in-difference estimator to account for any time trends. Receiving CRT was associated with significantly more employment after 1 year compared with hospitalization. Furthermore, after 1 year, receiving CRT was associated with fewer suicide attempts, admissions and readmissions. The associations were not significant after two years. The results suggest that CRT patients retain a higher employment rate, which could indicate better recovery. Using CRT could lead to savings in the social security system owing to higher employment rates.

European Association of Hospital Pharmacists (EAHP) guidance on the pharmacy handling of in vivo gene therapy medicinal products.

Gene therapy is becoming increasingly prevalent, with new gene therapy medicinal products (GTMPs) being approved for use every year. Hospital pharmacists are expected to prepare and dispense these products, but there is substantial heterogeneity in the availability of up-to-date, practical guidance at a national level in Europe. Many institutions have no or very limited experience in handling GTMPs. As such, there is a need for updated, practical guidance to aid hospital pharmacy teams in developing institutional standard operating procedures (SOPs) for the safe handling of GTMPs across the entire workflow. Here, we present the European Association of Hospital Pharmacists' updated guidance on the handling of GTMPs, developed by a team of recognised experts from around Europe. Each aspect of the GTMP handling process is addressed, including receipt and storage, dispensing and reconstitution, transportation, administration, waste disposal, decontamination of spills and accidental exposure. A series of figures are provided to aid the development of practical workflows. This guidance document is intended as a framework to help develop institutional SOPs and should always be used in conjunction with local regulations.

Utilisation and time to performance of diagnostic imaging in patients admitted to Danish emergency departments: a nationwide register-based study from 2007 to 2017.

OBJECTIVES: To describe the development of diagnostic imaging utilisation in Denmark from 2007 to 2017, coinciding with a major national reform of the emergency healthcare system. DESIGN: Nationwide descriptive register-based study. SETTING: All public hospitals in Denmark. PARTICIPANTS: All unplanned hospital contacts ≥18 years old at somatic hospitals in Denmark from 1 January 2007 to 31 December 2017. PRIMARY AND SECONDARY OUTCOME MEASURES: The primary outcome measure was the probability of having CT, X-ray, MRI or ultrasound performed during hospitalisation in 2017 compared with 2007. The secondary outcome measure was receiving diagnostic imaging within 4 hours of hospitalisation. RESULTS: The probability of having a radiological examination during unplanned hospital admission increased from 2007 to 2017 (CT: 3.5%-10.3%; MRI: 0.2%-0.8%; ultrasound: 2.3%-4.5%; X-ray: 23.8%-26.8%). For CT scan, the adjusted OR was 3.09 (95% CI: 2.73, 3.51); for MRI, the adjusted OR was 3.39 (95% CI: 1.87, 6.12) and for ultrasound, the adjusted OR was 1.93 (95% CI: 1.56, 2.38). The likelihood of having the examination within the first 4 hours in the hospital increased from 2007 to 2017. For X-ray, the adjusted OR was 1.39 (95% CI: 1.07, 1.56); for CT scan, the adjusted OR was 1.35 (95% CI: 1.16, 1.59); for MRI, the adjusted OR was 1.34 (95% CI: 1.09, 1.66) and for ultrasound, the adjusted OR was 1.38 (95% CI: 1.16, 1.64). CONCLUSION: This nationwide study describes the development of diagnostic imaging utilisation in Denmark from 2007 to 2017. The probability of receiving radiological examinations during unplanned hospitalisation increased over this period, and the time from hospital contact to performance decreased. This supports the notion that enhancement in radiological equipment will also lead to more frequent and faster utilisation.

Patient and family perceptions of the provision of medicines as part of virtual outpatient consultations for children during COVID-19 pandemic.

OBJECTIVES: To evaluate (1) views and perceptions of patients/parents/carers and healthcare professionals on the medicines optimisation (MO) process following virtual outpatient clinic (VOC) during the COVID-19 pandemic and (2) the processes introduced at this time, identifying areas for improvements and suggest potential solutions. DESIGN: A mixed-methods service evaluation using qualitative and quantitative methods of the MO pathway in children aged 0-18 years following VOC across three specialist children's units.Semi-structured interviews were conducted over the telephone with the participants exploring their experiences and categorised into themes.Process mapping sessions with the multidisciplinary team identified areas for improvement and an ease impact framework developed for potential solutions.Outcome measures included: (1) themes from interviews, (2) patients satisfaction rates, (3) process maps and (4) development of a simplified future process. RESULTS: One hundred and twenty-five patients' families were contacted: 71 families consented to participate and their views were categorised into four main themes: (1) patient experience, (2) communication, (3) need for virtual video consultations for patient education by hospital pharmacists and (4) need for electronic processes to send prescriptions to local pharmacies.Median patient satisfaction rate was 96% (range 67%-100%). The convenience of receiving medications directly to patient's homes; access to medicines information helplines and education provided by pharmacists were regarded as valuable. Communication between care providers, development of virtual video consultations by hospital pharmacists and electronic transfer of some prescriptions directly to community pharmacies were identified as areas of improvement. CONCLUSIONS: Participants appreciated the pharmacy processes adopted during the pandemic, however, challenges and recommendations for improvement in delivering MO VOC were identified. As digital innovations evolve within the NHS, future research should focus on integrated care and improved communication between care providers with selected medications prescribed directly to community pharmacies using electronic prescription service, with clinical screening and education provided by hospital pharmacists.

Feasibility of developing children's Pill School within a UK hospital.

OBJECTIVE: We assessed the feasibility of introducing an intervention (children's Pill School-PS) within a UK hospital to provide swallowing training for children, identified the proportion of children who can be switched from oral liquid medicines to pills and assessed children/parents' opinions about the PS training. METHODS: 30 inpatient children (aged 3-18 years; taking oral liquid medicines; their liquid medications assessed suitable for switching to pills; can (and their parents) speak/understand English were included. Training sessions were delivered using hard sweets of different sizes. RESULTS: 87% (26) of children successfully learnt how to swallow pills after one training session (mean duration 14.5 min), and 92% (24) were discharged on pills. 75 prescribed oral liquid medications were deemed suitable for switching to pills. Of these, 89% (67) were switched successfully. CONCLUSION: Children as young as 3 years were successful in swallowing pills after training. Providing children PS training session within hospital is feasible and acceptable to children and their parents.

Developing new models of care at speed: learning from healthcare redesign for children with COVID-related multisystem inflammation.

This article describes the rapid, system-wide reconfiguration of local and network services in response to the newly described paediatric inflammatory multisystem syndrome temporally associated with SARS-CoV-2 (PIMS-TS) (also known as multisystem inflammatory syndrome in children). Developing the model of care for this novel disease, whose natural history, characteristics and treatment options were still unclear, presented distinct challenges.We analyse this redesign through the lens of healthcare management science, and outline transferable principles which may be of specific and urgent relevance for paediatricians yet to experience the full impact of the COVID-19 pandemic; and more generally, for those developing a new clinical service or healthcare operating model to manage the sudden emergence of any unanticipated clinical entity. Health service leaders in areas where COVID-19 is, or will soon be, in the ascendancy, and who are anticipating the imminent influx of PIMS-TS, should use these principles and recommendations to plan an agile, responsive and system-wide model of care for these children.

[Real-world effectiveness of ivacaftor in children with cystic fibrosis and the G551D mutation]. / Efectividad de ivacaftor en vida real en niños con fibrosis quística y mutación G551D.

INTRODUCTION: Ivacaftor is a cystic fibrosis transmembrane conductance regulator (CFTR) potentiator that has been shown to improve the nutritional status and lung function of cystic fibrosis patients with the G551D mutation in clinical trials. The objective of this study was to describe the real-world progress of children receiving ivacaftor. METHODS: We describe the real-world progress of four children with cystic fibrosis and the F508del/G551D genotype comparing data during ivacaftor treatment with baseline and with the year before commencing treatment. RESULTS: Our sample comprised 4 children aged between 6 and 14 years and including one with a recent diagnosis of CF and other with persistent Mycobacterium abscessus (M. abscessus) and recurrent allergic bronchopulmonary aspergillosis. The baseline FEV1 was 58.5% to 81.8% of the predicted value, and ivacaftor was taken for a mean 24 months (range, 12-30 months). All patients experienced a significant and sustained improvement in lung function. Compared to baseline, the weight z-score improved by 1.53 points, and the BMI z-score by 1.6 points. Compared to the year before starting ivacaftor, the frequency of Pseudomonas aeruginosa (P. aeruginosa) isolates decreased (-0.4/patient/year), as did the number of respiratory exacerbations (-1.8/patient/year). The weight-adjusted dose of lipase per kilogram decreased progressively in all patients. In 1 patient, a previously persistent M. abscessus infection and recurrent allergic bronchopulmonary aspergillosis resolved during treatment. CONCLUSIONS: Children with cystic fibrosis and the F508del/G551D genotype receiving treatment with ivacaftor experienced a real-world improvement in lung function, nutritional status, respiratory exacerbations, isolation of P. aeruginosa, and dose of pancreatic enzymes.

Quality Improvement Project to Evaluate Discharge Prescriptions in Children With Cystic Fibrosis.

Cystic Fibrosis (CF) requires multiple pharmaceutical treatments, elevating the risk of medication errors (ME), which may compromise patient safety. This study aimed to improve the quality of discharge prescriptions (DPs) using indicators following admissions for IV antibiotics in pediatric CF patients. METHODS: This project involved a longitudinal observational retrospective descriptive study followed by a longitudinal quasi-experimental prospective phase between January 2013 and December 2016 in CF patients admitted to a London Children's Hospital. The CF pharmacist reviewed DPs. Six rights of medication administration were defined (6R): dose, drug, frequency, duration of treatment, pharmaceutical form, and route of administration. We classified ME according to 6R, including subtype of error: committed/omitted. We calculated quality indicators by dividing the number of each correct parameter defined by 6R by number of DPs. Retrospective results were used prospectively to describe and implement improvement strategies and safety actions. RESULTS: The retrospective study phase included 42 CF children (100 hospital admissions and 1,343 drugs). The prospective phase included thirty-five children (55 admissions and 822 drugs). The total number of ME identified was 148 (78 committed; 70 omitted) in retrospective phase and 135 (19 committed; 116 omitted) in prospective phase. Quality indicators for drug and dose showed significant improvement after implementing safety strategies. The global quality indicator increased from 22% (retrospective) to 41.82% (prospective), but we did not achieve the previously defined quality standard value (50%). CONCLUSIONS: A retrospective review of DP by a CF Pharmacist identified failures in DP quality. Implementing improvement strategies improved prescribing. Integrating pharmacist within multidisciplinary team improves DP reducing errors.

A national scoping survey of standard infusions in paediatric and neonatal intensive care units in the United Kingdom.

OBJECTIVES: This study aimed to explore the use of standard concentration infusions for intravenous infusions (SCI) in paediatric and neonatal units in the United Kingdom (UK). This included how many units use SCI, variation and overlap in concentrations, devices in use for administration and how the infusions were provided. METHODS: Paediatric and neonatal units in the UK were surveyed using a self-administered web-based survey tool. Respondents were accessed through professional networks over a one-month period in summer 2016. KEY FINDINGS: Thirty-one units (40%) used SCI. Twenty-one units provided information on presentation and administration of SCI. Forty-six medicines were used as SCI with 143 different concentrations. 'Smart' pump technology was most commonly used in the administration of SCI, and SCI were predominantly prepared by nurses in the near-patient setting. CONCLUSIONS: The majority of paediatric and neonatal units in the UK used traditional weight-based methods for IV infusions and only 40% of responding units had established SCI. This local implementation of SCI resulted in a wide variation of presentations and concentrations and thus there is no true 'standardisation'. Further research should be conducted on harmonising these SCI across neonatal and paediatric care to facilitate adoption across all units.

Community Families: Bridging the gap between mental health services and civil society - A qualitative study from users' perspective.

BACKGROUND: Social interventions to support people with severe mental illness are important to improving the quality of life. The perspectives of users are essential in this process. This article explores users' experiences, investments and concerns of a befriending programme. MATERIAL: Focus group and individual qualitative interviews with service users. DISCUSSION: Overall, the experiences with the programme were positive, and the social interaction was highly valued. However, that the relationships were arranged and facilitated by mental health workers remained an unresolved concern even after several years. CONCLUSION: People with severe mental illness benefit from relationships despite the need of professional assistant.

Palliative medicines for children - a new frontier in paediatric research.

OBJECTIVES: This paper seeks to highlight from a UK perspective the current lack of a research evidence base in paediatric palliative care that has resulted in a paucity of available medicines with appropriate formulations (strength and dosage form) to provide symptom management for children with life-limiting illnesses and to raise awareness of this group of 'therapeutic orphans'. Currently, clinicians have limited, often unsuitable medication choices for their paediatric palliative care patients, with little hope of moving away from the status quo. KEY FINDINGS: Most medicines used in children receiving palliative care are old and off-patent drugs, developed for and tested in an adult population. Many are not available in suitable formulations (dosage form and strength) for administration to children, and there are often no age-related profiles of adverse drug reactions or for safe dosing. SUMMARY: Existing regional paediatric palliative care networks and support organisations should lobby funding bodies and the academic community to support appropriate research for this group of therapeutic orphans. Support must also be provided to pharmaceutical companies in the development of suitable products with appropriate formulations.

CREATING AND AUDITING A NEW ELECTRONIC CONTINUOUS INFUSION PRESCRIPTION CHART FOR A PAEDIATRIC CRITICAL CARE UNIT.

INTRODUCTION: Prescription errors, including continuous infusion prescriptions are one major source of concern in the paediatric population. Evidence suggests that use of an electronic or web-based calculator could minimise these errors. In our paediatric critical care unit (PCCU) we have created an electronic continuous infusion prescription chart to target errors in this area and conducted an audit to assess its effect on error reduction. AIM: To create an electronic continuous infusion prescription chart and audit its effect on prescription errors. METHOD: Similar electronic continuous infusion prescription charts were evaluated. A Choice of electronic formats were considered and excel was chosen for its simplicity and flexibility. The choice of medications to be included, dilution method, and dosage range was agreed between PCCU consultant, pharmacy and nursing staff. Formulas for calculating each medication infusion was created and validated for different age and weight ranges by at least 2 PCCU trained pharmacists, accounting for capping at certain age and weight bands as appropriate for the medication. These were programmed into the spreadsheet for automatic calculation using inputted age and weight for the selected medications. Continuous infusion prescriptions were audited 6 months before and after implementation in April 2015 of this electronic chart. Parameters audited include medication dose, infusion rate, concentration, route, legibility, and missing or incorrect patient details. A trial period of 4 weeks preceded implementation. RESULTS: The electronic continuous infusion prescription form was created and used on PCCU. Hand written prescriptions had higher error rate (30.7%) as compared to electronic charts (0.7%) with a p-value <0.002. No errors were found in electronic prescriptions in regards to dose, volume and rate calculation. DISCUSSION AND CONCLUSION: The use of an electronic continuous infusion prescription chart has been successfully set up and used on PCCU. Its use has significantly reduced continuous infusion prescription error rates. The one error on electronic prescription charts was due to incorrect data input.Whilst similar formats exist for transferring patients between intensive care units in the UK, this differs by its use on inpatients. As a new project, various learning points were gained during the process. Some discrepancies in the formulas were identified during the validation process and trial period and the flexibility to change these quickly was paramount. The need to standardise prescribing habits and administration preferences was also important before proceeding to the formulation stage. Security and version control was another factor to consider ensuring restricted use of the most updated version.Major advantages of this prescription chart include ease of set up and low cost compared to established commercial programs. Another was the ability to quickly adapt information to the changing needs of the unit or updated dosage recommendations.In summary, the use of the electronic continuous infusion prescription chart has significantly reduced prescription error rates on PCCU. It has also allowed more efficient use of medical and pharmacy time resources.

THE APPROPRIATENESS OF USING AVERAGE DISPLACEMENT VALUES FOR PAEDIATRIC INTRAVENOUS DRUG ADMINISTRATIONS.

AIM: To determine the impact of displacement values on doses in paediatric patients when using parenteral. To assess the option of using average displacement values (DV) in the preparation of parenteral medicines. METHOD: Over 500 Medusa1 monographs were analysed and 42 medicines were identified with a displacement value not indicated as negligible. The following were calculated: the percentage difference in dose if the DV was not taken into account for each drug and brand, the range of percent differences where there was more than one brand for each strength and the percentage difference in dose incurred if an average DV was used. RESULTS: The 42 drugs were separated into 3 groups. The first group of 27 drugs had DVs causing less than 5% dose variation for all brands. The second group of 7 drugs had DVs resulting in more than 5% dose variation. The third group of 8 drugs had wider variations i.e. including drugs where the different brands had DVs both below and above 5% (2 to 27.9%) in dose variations for varying brands of a drug and strength.A total of 64 preparations had less than 5% dose variation. For these the DVs could potentially be disregarded as it is unlikely to have a significant clinical effect. However there are other sources of errors when administering parenteral medications (e.g. dose rounding on prescribing, inaccuracy when preparing and drawing up the dose) and this may further contribute to cumulative dosing inaccuracies. An alternative option would be to provide an average DV for each drug and vial strength. Due to the use of an average DV under or over dosing can occur depending on the preparation. However if this method was used the dose difference is only 0.31% on average (0.47-0.98%), significantly less if the DV was ignored.For the second group of preparations with dose differences greater than 5% (5-18%), the DV should not be ignored as it can be clinically significant. However where there is more than one manufacturer available for a particular strength of drug the range in difference of the dose variation was small (0.7-4.1%). When an average displacement value was attributed this resulted in a maximum dose difference of 2.5% (0-2.5%). For the third group there are varying differences in the range of dose variation. Where the range is small and an average was assigned the average range in dose variation was 0.30% (0-4.6%). However there are preparations that the range was too wide for an average to be safely used (2.8-9.5%). CONCLUSION: For the majority of drugs an average DV can be used safely. Using average DVs would simplify the preparation process for nurses and reduce the risk of them inadvertently using the wrong displacement value.

SETTING UP OF A HOMECARE SYSTEM FOR HIGH COST NEBULISERS IN A PAEDIATRIC CYSTIC FIBROSIS CENTRE.

AIM: Due to national changes to the commissioning process of high cost nebulisers (HCN) for Cystic Fibrosis (CF) patients, CF centres have to repatriate the prescribing of the HCN to the tertiary care centres.1 The following nebulisers will no longer be prescribed by primary care: Cayston® (Aztreonam); Colomycin®, Pomixin®, Clobreathe® (Colistimethate); Pulmozyme® (Dornase alfa); Tobi®, Tobi Podhaler ®, Bramitob® (Tobramycin).This abstract explains how the Royal London Hospital (RLH) Paediatric Pharmacy recruited over 100 paediatric (CF) patients smoothly within a period of 4 months and set up a homecare system to avoid patients and families having to travel large distances to obtain their medication. METHODS: A number of homecare companies were evaluated initially. Parameters looked at were reports of customer satisfaction, delivery cost, turn-around time once the prescription was received and availability of same day delivery service.In order to capture existing patients we met with CF Specialist Nurses to establish the total number of patients on HCN, what nebulised treatment they were on and their respective doses. We prioritised patients that had known problems with GP prescribing and anybody newly starting on HCN.To communicate the change to parents, a letter was sent to all parents explaining the changeover to homecare delivery and tertiary prescribing. In addition a section in the parent bulletin was dedicated to the topic as well. Following this we contacted parents via phone and in clinic to request consent and explain the process.Up to 10 patients were contacted weekly (average of 7); the consent form and registration form were then faxed to the Homecare company for patient registration. In parallel to this prescriptions were requested for the patients that had been set up in the previous week, ensuring that prescribing was spread out over time to avoid having peak times for repeat prescriptions.In addition to the letter to parents GP surgeries were also informed in writing about the changes in commissioning and planned repatriation of HCN. This information was also included on discharge prescriptions for patients on any of the HCNs as part of the pharmacy screening process.A system for follow up prescriptions as repeat was set up between the team so we would not have unexpected urgent requests and we could avoid missed doses, urgent delivery charge or stress in the team. In order to manage the prescriptions and ease communication across the team a database was developed. RESULTS: From March to July 2014 (16 weeks) one hundred and four patients were successfully repatriated to tertiary care. CONCLUSION: A planned method and agreed standard operation procedure was key to effectively capture and repatriate all patients while at the same time keeping the increase on workload for the pharmacy team to a minimum. The fact of having a strong pharmacy presence as part of the multidisciplinary team attending CF clinics and ward rounds was vital in making this work.

AN AUDIT TO ASSESS THE TIMINGS OF TTAS AND INPATIENT ORDERS IN PAEDIATRICS; FROM WRITING, TO SCREENING, TO DISPENSING, AND TO LEAVING DISPENSARY.

AIM: To assess the time it takes for paediatric TTA and inpatient orders to be dispensed and sent to ward. This is to establish if the Trust is meeting an operational Key Performance Indicator (KPI). STANDARDS KPIS: ▸ 85% of urgent items (TTAs) dispensed within 1 hour.▸ 85% of non-urgent items (most inpatient orders) dispensed within 3 hrs. METHOD: To audit the time it takes for TTAs and inpatient orders to be screened, sent to dispensary, labelled, dispensed, checked, and leave dispensary. Data collection took place over 5 days and focused on TTAs and inpatient orders coming from high turnover paediatric wards.Data was collected on: time to verify, time logged into dispensary, time for labelling, time for checking, and time to leave dispensary. EXCLUSION CRITERIA: TTAs/ inpatient orders that contain controlled drugs, requires a dosette box, or is ordered out of hours. RESULTS: TTA results:The time from writing to screening of TTAs averages 1 hour 34 minutes. However, this may be inaccurate as it requires the doctor to select 'sign and send to pharmacy'. If not selected, the clock has started, but the TTA is not visible to pharmacy.It took on average 2 hrs for all items from being logged in to being checked (n=12). The standard is 1 hour. The rate limiting steps were time to screen and time to label (each of which took approx. 1 hour 30 mins).The majority of the dispensing time is spent labelling, with an average time from logging in to labelling being 1 hour 25 minutes. The dispensing and checking was quick with an average of 36 minutes. INPATIENT RESULTS: Inpatient orders took on average 5 hrs 51 minutes for the items to leave dispensary after they had been logged in (n=22). The standard for non-urgent work is 3 hrs.Time to screen was not recorded as the doctors do not record the time of prescribing on the inpatient drug chart. There is only a 6 minute delay between faxing orders and it being logged in, therefore no problem identified at that stage.The majority of time was spent labelling, with an average time from logging in to labelling being 1 hour 56 minutes. CONCLUSION: Standards are not being met. The rate limiting steps appears to be labelling in dispensary. PROPOSALS: ▸ Additional staff labelling at peak times▸ Slow dispensing system, liaise with IT to see if improvements can be made▸ Unable to have more labelling terminals as the robot only has three shoots▸ Induction teaching to include importance of sending TTAs to pharmacy after writing▸ Re-audit in 3 months LIMITATIONS: Lack of dataThe screening time for TTAs is misleading as it captures the time from writing (rather than time of sending to pharmacy), until the time screened.No data on time taken for items to arrive back onto the ward, or if medicines collected or delivered by porter.

A NATIONAL SURVEY TO IDENTIFY HOW DISPLACEMENT VALUE INFORMATION IS USED AND PRESENTED TO CLINICAL STAFF IN NHS HOSPITALS.

AIM: The use of displacement values (DVs) when preparing intravenous (IV) medication for children enables accurate doses to be given1 and is assumed to be common paediatric practice. This survey aimed to assess views of UK paediatric pharmacists on DVs in practice to explore:▸ How prevalent is DV use in the paediatric hospital setting▸ Which type of IV administration guidelines were being used▸ Which form of DV presentation is perceived to be most practical▸ Which method of calculation is preferred METHOD: A national cross-sectional survey study was undertaken. The questionnaire comprised of 13 closed and open questions as well as samples of how DVs are currently displayed on the Medusa Injectable Medicines Guide2. After piloting the questionnaire the survey was sent to 365 paediatric pharmacists across 120 UK hospitals utilising Qualtrics Survey Software. RESULTS: Fifty-five completed questionnaires covering 52 (43%) United Kingdom (UK) hospital trusts were received. Of 55 respondents, 52 (95%) reported the clinical significance of DVs in paediatric care. This was reflected in the fact that all local guides provided information on DVs. The majority (32;59%) used locally produced guides, while 15 (27%) of respondents used Medusa as a resource. All respondents commented on methods of presentation and calculation of DV information. Of four methods presented, the method involving presentation of reconstitution information in a brand-specific table was ranked as most practical (46;84% respondents). This method was viewed as being clear and concise. Respondents also expressed the importance of having this tabulated method visually embedded in the monograph to allow easy access to information on the wards. This concurs with suggested information presentation to aid error reduction in the literature.3 National standardisation of DV information was viewed as 'very useful' or 'preferred' by 52 (95%) of respondents; reasons for this preference were risk reduction due to errors or misinterpretation. CONCLUSION: The use of DVs in paediatrics is commonplace in the UK; this is reflected in local IV guides used by the majority of centres. Improving visual presentation of DVs is important and tabulated expression of DVs is preferred by pharmacists and a national standard presentation of DVs is encouraged. The results from the survey will inform the monograph layout for the Medusa. Prior to implementation nurse feedback should also be sought.

Efectividad de ivacaftor en vida real en niños con fibrosis quística y mutación G551D / Real-world effectiveness of ivacaftor in children with cystic fibrosis and the G551D mutation

Introducción: Ivacaftor es un potenciador de la proteína reguladora de la conductancia transmembrana de la fibrosis quística (CFTR) que ha demostrado en ensayos clínicos mejoría del estado nutricional y la función pulmonar de pacientes con fibrosis quística con mutación G551D. El objetivo de este estudio es describir la evolución en la vida real de niños tratados con ivacaftor. Métodos: Se describe la evolución en vida real de 4 niños con fibrosis quística con genotipo F508del/G551D comparando los datos durante el tratamiento con ivacaftor respecto a la situación basal y al año previo al tratamiento. Resultados: Se analizan 4 niños de entre 6 y 14 años, incluyendo uno con diagnóstico reciente de fibrosis quística y otro con infección persistente por Mycobacterium abscessus (M. abscessus) y aspergilosis broncopulmonar alérgica (ABPA) recurrente. El volumen espiratorio forzado en el primer segundo (FEV1) basal fue del 58,5-81,8% del predicho y recibieron ivacaftor 24 meses de media (rango 12-30 meses). Todos los pacientes tuvieron una mejoría significativa y mantenida de la función pulmonar. Respecto a la situación basal, el z-score del peso mejoró 1,53 puntos y el z-score del índice de masa corporal (IMC) 1,6 puntos. Comparado con el año previo al tratamiento con ivacaftor, disminuyeron la frecuencia de aislamientos de Pseudomonas aeruginosa (P. aeruginosa) (-0,4/paciente/año) y el número de exacerbaciones respiratorias (-1,8/paciente/año). La dosis de lipasa ajustada por kilo disminuyó progresivamente en todos los pacientes. Un paciente resolvió durante el tratamiento la infección por M. abscessus y la ABPA. Conclusiones: Los niños con fibrosis quística y mutación F508del/G551D tratados con ivacaftor mostraron en la vida real mejoría de la función pulmonar, el estado nutricional, las exacerbaciones respiratorias, los aislamientos de P. aeruginosa y la dosis de enzimas pancreáticas

Introduction: Ivacaftor is a cystic fibrosis transmembrane conductance regulator (CFTR) potentiator that has been shown to improve the nutritional status and lung function of cystic fibrosis patients with the G551D mutation in clinical trials. The objective of this study was to describe the real-world progress of children receiving ivacaftor. Methods: We describe the real-world progress of four children with cystic fibrosis and the F508del/G551D genotype comparing data during ivacaftor treatment with baseline and with the year before commencing treatment. Results: Our sample comprised 4 children aged between 6 and 14 years and including one with a recent diagnosis of CF and other with persistent Mycobacterium abscessus (M. abscessus) and recurrent allergic bronchopulmonary aspergillosis. The baseline FEV1 was 58.5% to 81.8% of the predicted value, and ivacaftor was taken for a mean 24 months (range, 12-30 months). All patients experienced a significant and sustained improvement in lung function. Compared to baseline, the weight z-score improved by 1.53 points, and the BMI z-score by 1.6 points. Compared to the year before starting ivacaftor, the frequency of Pseudomonas aeruginosa (P. aeruginosa) isolates decreased (-0.4/patient/year), as did the number of respiratory exacerbations (-1.8/patient/year). The weight-adjusted dose of lipase per kilogram decreased progressively in all patients. In 1 patient, a previously persistent M. abscessus infection and recurrent allergic bronchopulmonary aspergillosis resolved during treatment. Conclusions: Children with cystic fibrosis and the F508del/G551D genotype receiving treatment with ivacaftor experienced a real-world improvement in lung function, nutritional status, respiratory exacerbations, isolation of P. aeruginosa, and dose of pancreatic enzymes

Oral chemotherapy in paediatric oncology in the UK: problems, perceptions and information needs of parents.

OBJECTIVE: To identify problems, perceptions and information needs of parents and carers regarding oral chemotherapy. SETTING: Two Paediatric Oncology Centres in the UK. METHODS: A semi-structured questionnaire was developed in consultation with professionals working within paediatric oncology. Questionnaires were administered in face-to-face interviews with parents of patients attending clinic appointments. Responses to questions were coded and entered into a database for descriptive and inferential analyses. Responses to open questions were coded using simple thematic analysis whereby codes and themes emerged from the data and were compared and contrasted between respondents. Findings were further validated by quotes from interviewees to open questions. MAIN OUTCOME MEASURES: Awareness and knowledge of medicines, information needs and handling procedures. RESULTS: Fifty-five interviews were conducted. Most interviewees viewed oral and intravenous chemotherapy as equally important and potent. Three-quarters of parents were aware of the adverse effects chemotherapy could have on them, worryingly three-quarters of the same group of parents did not use all the handling precaution methods advised by health care professionals. Knowledge of acute lymphoblastic leukaemia maintenance treatment was assessed in 47 interviewees; 31 parents were able to explain the reasons for maintenance chemotherapy. Interviewees felt well informed by the hospital and found it easy to access information they needed. The data suggest the majority of parents had a great interest in understanding the disease and treatment, with 91% using the internet to access further information. Three-quarters of parents faced some kind of difficulty when dealing with oral chemotherapy, including problems with the patient not taking the drug, technical and supply problems and problems following the drug regimen. Self-reported compliance in this study was high with 69.1% of interviewees stating they never forgot a single dose. 72.2% of interviewees used a reminder method, of which 81.6% were written reminders. CONCLUSION: This study highlights that although the support systems offered by the paediatric oncology centres were good, certain areas need improvement, specifically the manner in which parents/carers are educated and informed.