Healthcare professional experiences and attitudes on unlicensed/off-label paediatric prescribing and paediatric clinical trials

To investigate the knowledge and views of a range of healthcare professionals (consultant paediatricians, general practitioners (GPs), community pharmacists and paediatric nurses) regarding the use of unlicensed/off-label medicines in children and the participation of children in clinical trials.

Developing an intervention to equip nurses for acute life threatening events (ALTEs) in hospital:a phenomenological approach to healthcare research

Objectives: To understand staff's experiences of acute life threatening events (ALTEs) in a pediatric hospital setting. These data will inform an intervention to equip nurses with clinical and emotional skills for dealing with ALTEs. Method: A mixed design was used in the broader research program; this paper focuses on phenomenon-focused interviews analyzed using interpretative phenomenological analysis (IPA). Results: Emerging themes included staff's relationships with patients and the impact of personhood on their ability to perform competently in an emergency. More experienced nurses described "automatic" competence generated through increased exposure to ALTEs and were able to recognize "fumbling and shaking" as a normal stress response. Designating a role was significant to staff experience of effectiveness. Key to nurses' learning experience was reflection and identifying experiences as "teachable moments." Findings were considered alongside existing theories of self-efficacy, reflective thought, and advocacy inquiry to create an experiential learning intervention involving a series of clinical and role-related scenarios. Conclusion: The phenomenological work facilitated an in-depth reading of experience. It accentuated the importance of exposure to ALTEs giving nurses experiential knowledge to prepare them for the impact of these events. Challenges included bracketing the personhood of child patients, shifting focus to clinical tasks during the pressured demands of managing an ALTE, normalizing the physiological stress response, and the need for a forum and structure for reflection and learning. An intervention will be designed to provide experiential learning and encourage nurses to realize and benefit from their embodied knowledge.

Attitudes to children's pain:exploding the 'pain myth'

Previous research has identified healthcare professionals' belief in myths about children's experience of pain as a cause of inadequate pain treatment. In this study, 47 doctors and 36 nurses involved in paediatric care completed a detailed questionnaire on 'pain myths'. The findings indicate a more informed awareness among healthcare professionals regarding childhood pain than previously suggested and that unconditional belief in 'pain myths' is not widespread.

Perceptions and attitudes of Jordanian paediatricians towards off-label paediatric prescribing

Objective To assess current experiences and attitudes of hospital based paediatricians towards off-label medicine prescribing. Setting Paediatric hospital wards and out-patient clinics. Design A prospective, questionnaire based study. Results A 30 item questionnaire was sent to 300 hospital based paediatricians and 250 (83%) were returned completed. Over 69% of responders were familiar with the term off-label medicines. However, only 28% were knowingly prescribing off-label medicines to children. The majority of respondents (90%) expressed concerns about the safety and efficacy of off-label medicines. Only 15% had observed Adverse Drug Reactions, and 31% a treatment failure. The vast majority of respondents (83%) did not obtain informed consent or tell parents they were prescribing off label medicines to their children. Conclusions Off-label prescribing of medicines to children is a familiar concept to the majority of paediatricians in Jordan although only a smaller number are aware that it is common in their practice. Respondents showed concern about off label prescribing, although the majority do not consider it necessary to inform parents. More comprehensive research is needed in this area in Jordan and other Middle Eastern countries.

Educating the iPod generation:undergraduate attitudes, experiences and knowledge of vodcast and podcast use

There is an increasing pressure on university staff to provide ever more information and resources to students. This study investigated student opinions on (audio) podcasts and (video) vodcasts and how well they met requirements and aided learning processes. Two experiments within the Aston University looked at student opinion on, and usage of, podcasts and vodcasts for a selection of their psychology lectures. Recordings were produced first using a hand-held camcorder, and then using the in-house media department. WebCT was used to distribute the podcasts and vodcasts, attitude questionnaires were then circulated at two time points. Overall students indicated that podcasts and vodcasts were a beneficial addition resource for learning, particularly when used in conjunction with lecturers’ slides and as a tool for revision/assessment. The online material translated into students having increased understanding of the material, which supplemented and enhanced their learning without being a substitute for traditional lectures. There is scope for the provision of portable media files to become standard practice within higher education; integrating distance and online learning with traditional approaches to improve teaching and learning.

Medicines management across the primary-hospital healthcare interface: a study of paediatric patients

A comparison of medicines management documents in use by NHS organisations in the West Midlands confirms that there are important differences between the primary care and hospital sectors in respect to medicines management interface issues. Of these, two aspects important to paediatric patients have been studied. These are the transfer of information as a patient is admitted to hospital, and access to long-term medicines for home-patients. National guidance provided by NICE requires medication reconciliation to be undertaken on admission to hospital for adults. A study of paediatric admissions, reported in this thesis, demonstrates that the clinical importance of this process is at least as important for children as for adults, and challenges current UK guidance. The transfer of essential medication information on hospital admission is central to the medication reconciliation process. Two surveys of PCTs in 2007 and again in 2009 demonstrate that very few PCTs provide guidance to GPs to support this process. Provision of guidance is increasing slowly but remains the exception. The provision of long-term medicines for children at home is hindered by this patient population often needing unlicensed drugs. Further studies demonstrate that primary care processes regularly fail to maintain access to essential drugs and patients and their carers frequently turn to hospitals for help. Surveys of hospital medical staff (single site) and hospital nurses (six UK sites) demonstrates the activity these healthcare workers perform to help children get the medicines they need. A similar survey of why carers turn to a hospital pharmacy department for urgent supplies (usually termed rescue-medicines) adds to the understanding of these problems and supports identifying service changes. A large survey of community pharmacies demonstrates the difficulties they have when dispensing hospital prescriptions and identifies practical solutions. This programme concludes by recommending service changes to support medication management for children.

Enhancing delivery of health behaviour change interventions in primary care: a meta-synthesis of views and experiences of primary care nurses

Objective To systematically find and synthesise qualitative studies that elicited views and experiences of nurses involved in the delivery of health behaviour change (HBC) interventions in primary care, with a focus on how this can inform enhanced delivery and adherence to a structured approach for HBC interventions. Methods Systematic search of five electronic databases and additional strategies to maximise identification of studies, appraisal of studies and use of meta-synthesis to develop an inductive and interpretative form of knowledge synthesis. Results Nine studies met the inclusion criteria. Synthesis resulted in the development of four inter-linking themes; (a) actively engaging nurses in the process of delivering HBC interventions, (b) clarifying roles and responsibilities of those involved, (c) engaging practice colleagues, (d) communication of aims and potential outcomes of the intervention. Conclusion The synthesis of qualitative evidence resulted in the development of a conceptual framework that remained true to the findings of primary studies. This framework describes factors that should be actively promoted to enhance delivery of and adherence to HBC interventions by nurses working in primary care. Practice implications The findings can be used to inform strategies for researchers, policymakers and healthcare providers to enhance fidelity and support delivery of HBC interventions.

Understanding the IT-related attitudes and needs of persons with age-related macular degeneration : a case study

In the UK, 20 per cent of people aged 75 years and over are living with sight loss; this percentage is expected to increase as the population ages (RNIB, 2011). Age-Related Macular Degeneration (AMD) is the UK’s leading cause of severe visual impairment amongst the elderly. It accounts for 16,000 blind/partial sight registrations per year and is the leading cause of blindness among people aged 55 years and older in western countries (Bressler, 2004). Our ultimate goal is to develop an assistive mobile application to support accurate and convenient diet data collection on which basis to then provide customised dietary advice and recommendations in order to help support individuals with AMD to mitigate their ongoing risk and retard the progression of the disease. In this paper, we focus on our knowledge elicitation activities conducted to help us achieve a deep and relevant understanding of our target user group. We report on qualitative findings from focus groups and observational studies with persons with AMD and interviews with domain experts which enable us to fully appreciate the impact that technology may have on our intended users as well as to inform the design and structure of our proposed mobile assistive application.

Data envelopment analysis model for the appraisal and relative performance evaluation of nurses at an intensive care unit

The appraisal and relative performance evaluation of nurses are very important and beneficial for both nurses and employers in an era of clinical governance, increased accountability and high standards of health care services. They enhance and consolidate the knowledge and practical skills of nurses by identification of training and career development plans as well as improvement in health care quality services, increase in job satisfaction and use of cost-effective resources. In this paper, a data envelopment analysis (DEA) model is proposed for the appraisal and relative performance evaluation of nurses. The model is validated on thirty-two nurses working at an Intensive Care Unit (ICU) at one of the most recognized hospitals in Lebanon. The DEA was able to classify nurses into efficient and inefficient ones. The set of efficient nurses was used to establish an internal best practice benchmark to project career development plans for improving the performance of other inefficient nurses. The DEA result confirmed the ranking of some nurses and highlighted injustice in other cases that were produced by the currently practiced appraisal system. Further, the DEA model is shown to be an effective talent management and motivational tool as it can provide clear managerial plans related to promoting, training and development activities from the perspective of nurses, hence increasing their satisfaction, motivation and acceptance of appraisal results. Due to such features, the model is currently being considered for implementation at ICU. Finally, the ratio of the number DEA units to the number of input/output measures is revisited with new suggested values on its upper and lower limits depending on the type of DEA models and the desired number of efficient units from a managerial perspective.

Impact of ATP-binding cassette, subfamily B, member 1 pharmacogenetics on tacrolimus-associated nephrotoxicity and dosage requirements in paediatric patients with liver transplant

Importance of the field: Tacrolimus is the most commonly used immunosuppressive agent following solid-organ transplantation in children. Its clinical use, however, is complicated by side effects (mainly nephrotoxicity), narrow therapeutic index and pharmacokinetic variability which can result in an increased risk of treatment failure or toxicity. Studies examining interindividual differences in the expression of the ABCB1 (ATP-binding cassette, subfamily B, member 1) gene (which encodes the drug transporter, P-gp) and its genetic polymorphisms have attempted to elucidate variations in tacrolimus response and disposition in children. Areas covered in this review: This review explores pharmacogenetic knowledge developed over the last decade regarding the impact of ABCB1 polymorphisms on tacrolimus toxicity and dosage requirements in children. What the reader will gain: A better understanding of the role of ABCB1 genetic polymorphisms (and corresponding haplotypes) and ABCB1 expression levels in various tissues and organs on tacrolimus outcomes in children with liver transplant. Take home message: Pharmacogenetics offers significant potential for optimising tacrolimus use. ABCB1 donor genotypes and ABCB1 expression level in the intestine and leukocytes may be useful in dosage selection. Large prospective studies are, however, required to further explore the potential of genetic testing in identifying children who are at risk of toxicity and to better individualise tacrolimus therapy.

Exploring the experiences of nurses who care for children who have Acute Life Threatening Events (ALTE) in hospital

This thesis presents a program of work designed to explore and describe what the experience of caring for a child who has an Acute Life Threatening Event (ALTE) is like for the nurses. An ALTE may include a cardiac arrest, respiratory arrest or unplanned admission for a ward to the Paediatric Intensive Care unit. Using the MRC framework for the development of complex interventions, this information was then coupled with theory to develop the PREPARE and SUPPORT interventions. Given the wide-ranging and exploratory nature of this research, a pragmatic, mixed design approach was used to address the aims and objectives of the thesis. The mixed design approach included: a systematic literature review; international survey of practice; interviews with nurses and doctors using Interpretative Phenomenological Analysis; development, refinement and evaluation of interventions during a feasibility study. Two studies were identified through the systematic review which aimed to evaluate the effectiveness of debriefing. The studies did not provide evidence to support the use of these interventions within healthcare. The international survey of practice demonstrated hospitals were using interventions to both prepare and support nurses for these events. The preparatory interventions were clinically focused and the majority of the supportive interventions included a debrief. The interventions were not being evaluated for effectiveness. The interviews conducted with nurses and doctors provided insight into what that experience was like for the participants. Using the MRC framework, this evidence was coupled with theory to develop the PREPARE and SUPPORT interventions. A multidisciplinary working party used an iterative process to refine and evaluate the interventions and study procedures were explored through a feasibility study. The pragmatic, mixed design approach demonstrated how the empirical evidence was coupled with theory and clinical expertise to develop interventions for use within the healthcare environment.

Proplyene glycol intake from medications used on paediatric intensive care

here is an increasing number of reports of propylene glycol (PG) toxicity in the literature, regardless of its inclusion on the Generally Recognized as Safe List (GRAS).1 PG is an excipient used in many medications as a solvent for water-insoluble drugs. Polypharmacy may increase PG exposure in vulnerable PICU patients who may accumulate PG due to compromised liver and renal function. The study aim was to quantify PG intake in PICU patients and attitudes of clinicians towards PG. Method A snapshot of 50 PICU patients oral or intravenous medication intake was collected. Other data collected included age, weight, diagnosis, lactate levels and renal function. Manufacturers were contacted for PG content and then converted to mg/kg. Excipients in formulations that compete with the PG metabolism pathway were recorded. The Intensivists' opinions on PG intake was sought via e-survey. Results The 50 patients were prescribed 62 drugs and 83 formulations, 43/83 (52%) were parenteral formulations. Median weight of the patients was 5.5 kg (range 2–50 kg), ages ranged from 1 day to 13 years of age. Eleven of the patients were classed as renally impaired (defined as 1.5 times the baseline creatinine). Sixteen formulations contained PG, 2/16 were parenteral, 6/16 unlicensed preparations. Thirty-eight patients received at least one prescription containing PG and 29/38 of these patients were receiving formulations that contained excipients that may have competed with the metabolic pathways of PG. PG intake ranged from 0.002 mg/kg/day to 250 mg/kg/day. Total intake was inconclusive for 2 patients due to a of lack of availability of information from the manufacturer; these formulations were licensed but used in for off-label indications. Five commonly used formulations contributed to higher intakes of PG, namely co-trimoxazole, dexamethasone, potassium chloride, dipyridamole and phenobarbitone. Lactate levels were difficult to interpret due to the underlying conditions of the patients. One of the sixteen intensivist was aware of PG content in drugs, 16/16 would actively change therapy if intake was above European Medicines Agency recommendations. Conclusions Certain formulations used on PICU can considerably increase PG exposure to patients. Due to a lack of awareness of PG content, these should be highlighted to the clinician to assist with making informed decisions regarding risks versus benefits in continuing that drug, route of administration or formulation.

Proplyene glycol intake from medications used on paediatric intensive care

There is an increasing number of reports of propylene glycol (PG) toxicity in the literature, regardless of its inclusion on the Generally Recognized as Safe List (GRAS).1 PG is an excipient used in many medications as a solvent for water-insoluble drugs. Polypharmacy may increase PG exposure in vulnerable PICU patients who may accumulate PG due to compromised liver and renal function. The study aim was to quantify PG intake in PICU patients and attitudes of clinicians towards PG. Method A snapshot of 50 PICU patients oral or intravenous medication intake was collected. Other data collected included age, weight, diagnosis, lactate levels and renal function. Manufacturers were contacted for PG content and then converted to mg/kg. Excipients in formulations that compete with the PG metabolism pathway were recorded. The Intensivists' opinions on PG intake was sought via e-survey. Results The 50 patients were prescribed 62 drugs and 83 formulations, 43/83 (52%) were parenteral formulations. Median weight of the patients was 5.5 kg (range 2–50 kg), ages ranged from 1 day to 13 years of age. Eleven of the patients were classed as renally impaired (defined as 1.5 times the baseline creatinine). Sixteen formulations contained PG, 2/16 were parenteral, 6/16 unlicensed preparations. Thirty-eight patients received at least one prescription containing PG and 29/38 of these patients were receiving formulations that contained excipients that may have competed with the metabolic pathways of PG. PG intake ranged from 0.002 mg/kg/day to 250 mg/kg/day. Total intake was inconclusive for 2 patients due to a of lack of availability of information from the manufacturer; these formulations were licensed but used in for off-label indications. Five commonly used formulations contributed to higher intakes of PG, namely co-trimoxazole, dexamethasone, potassium chloride, dipyridamole and phenobarbitone. Lactate levels were difficult to interpret due to the underlying conditions of the patients. One of the sixteen intensivist was aware of PG content in drugs, 16/16 would actively change therapy if intake was above European Medicines Agency recommendations. Conclusions Certain formulations used on PICU can considerably increase PG exposure to patients. Due to a lack of awareness of PG content, these should be highlighted to the clinician to assist with making informed decisions regarding risks versus benefits in continuing that drug, route of administration or formulation.

Exploring attitudes towards dietary modification and nutritional supplementation in people with and without age-related macular degeneration

Age-related macular degeneration (AMD) is the leading cause for visual impairment and blindness registration in the developed world. Due to the large amounts of conflicting AMD research on the role of nutrition and antioxidant intake, it is difficult for patients and practitioners to determine which measures can be taken to slow down the disease progression. The aim of this research was to determine the beliefs and knowledge that patients with AMD have about nutrition, to identify whether their condition is preventing them from eating a healthy diet, and to discover what their diet consists of. For the initial study, 158 participants with AMD (mean age 79 ± 7.8 years) and 50 participants without AMD (mean age 67 ± 8 years) were recruited from the Macular Society helpline, or from optometric practice. Participants had a 25 minute telephone interview where a 36-question survey was completed. The survey elicited demographic information, and questions covered the knowledge that participants had on nutrition and their current diet. The results from this survey uncovered three major findings: 1) 100% of AMD participants felt that they do not have enough information and support from eye-care practitioners regarding nutrition, 2) AMD patients are confused over, and display a lack of knowledge of, which foods are beneficial for eye health and when and what nutritional supplements to take, evidenced by 65% of participants not taking the correct dosage 3) AMD patients are not eating enough nutrients that would be beneficial for their condition - consuming an average of 1.4mg of lutein and zeaxanthin rather than the recommended 10mg. A clinical decision-making aid was created as an intervention based upon these findings. The aim of the aid was to help eye-care practitioners give the correct nutritional advice to their patients. Founded on the AREDS 2 inclusion and exclusion criteria, practitioners are able to identify which patients could benefit from a nutritional supplement, and which patients could benefit from dietary modification. An evaluation of the aid with 72 qualified eye-care practitioners exhibited a statistically significant increase in confidence after using the aid for two weeks. An evaluation using 51 student optometrists showed a statistically significant increase in confidence and a statistically significant increase in appropriate management of patients after using the aid. This project has elicited findings that are significant for AMD patient education. It is hoped that through these studies, patients will receive consistent advice about the risk factors for AMD, the link between AMD and nutrition, and the importance of maintaining a healthy, well-balanced diet.

Understanding the IT-related attitudes and needs of persons with age-related macular degeneration:a case study

In the UK, 20 per cent of people aged 75 years and over are living with sight loss; this percentage is expected to increase as the population ages (RNIB, 2011). Age-Related Macular Degeneration (AMD) is the UK’s leading cause of severe visual impairment amongst the elderly. It accounts for 16,000 blind/partial sight registrations per year and is the leading cause of blindness among people aged 55 years and older in western countries (Bressler, 2004). Our ultimate goal is to develop an assistive mobile application to support accurate and convenient diet data collection on which basis to then provide customised dietary advice and recommendations in order to help support individuals with AMD to mitigate their ongoing risk and retard the progression of the disease. In this paper, we focus on our knowledge elicitation activities conducted to help us achieve a deep and relevant understanding of our target user group. We report on qualitative findings from focus groups and observational studies with persons with AMD and interviews with domain experts which enable us to fully appreciate the impact that technology may have on our intended users as well as to inform the design and structure of our proposed mobile assistive application.