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.

A prospective randomised controlled mixed-methods pilot study of home monitoring in adults with cystic fibrosis.

BACKGROUND: Home monitoring (HM) is able to detect more pulmonary exacerbations (PEx) than routine care (RC) in individuals with cystic fibrosis (CF), but there is currently no evidence for benefits in health outcomes. Patient experiences of using HM and a health economics assessment have not been rigorously assessed to date. This study aimed to assess the effects of HM on hospital admissions, quality of life, antibiotic requirements, exacerbation frequency, lung function, nutritional outcomes, anxiety, depression, costs and health outcomes, as well as the qualitative effects on the patient experience. METHODS: This randomised controlled mixed-methods pilot study recruited CF adults cared for in one large regional CF centre. Participants were randomly allocated 1:1 to the intervention cohort [twice-weekly HM of symptoms measured by the Cystic Fibrosis Respiratory Symptom Diary - Chronic Respiratory Infection Symptom Score (CFRSD-CRISS) and forced expiratory volume in one second (FEV1)] or a control cohort (routine clinical care) for the 12-month study period. Measurements were recorded at study visits at baseline, 3, 6, 9 and 12 months. Spirometry, body weight, comorbidities, medications, hospital inpatient days, courses of antibiotics (oral and intravenous) and PEx (defined by the modified Fuchs criteria) were recorded at each study visit. Health status, capability and cost-effectiveness were measured at each study visit by the Hospital Anxiety and Depression Scale (HADS), the ICEpop CAPability measure for Adults (ICECAP-A), EuroQol 5 dimensions (EQ-5D-5L) questionnaire and an adapted resource use questionnaire. The patient experience of HM was assessed by semi-structured qualitative interviews at baseline and 12 months. RESULTS: Eighty-eight participants were recruited, with 44 (50%) randomised to receive HM and 44 (50%) randomised to receive RC. Patient hospital inpatient bed days per annum and overall health-related quality of life were similar between the groups. Protocol-defined PEx requiring intravenous and oral antibiotics were detected more frequently in the HM group, with no other differences between the groups in the secondary outcomes. The total mean National Health Service (NHS) costs were approximately £1500 more per patient for the RC arm than the HM group. The qualitative analysis demonstrated that the patient experience of HM was generally positive and overall the intervention was well accepted. CONCLUSION: The findings of this trial confirm that HM is effective in detecting PEx in adults with CF. There were no significant differences in hospital inpatient bed days and overall health-related quality of life between the groups. Despite the cost of the HM equipment and the salary of the research fellow to respond to the results, health economics analysis suggests the intervention was less expensive than RC. HM was generally well accepted, with most participants reporting that it resulted in them feeling more empowered and reassured. TRIAL REGISTRATION: The study protocol was registered with Clinicaltrials.gov (NCT02994706) on 16 July 2014 and published in a peer reviewed journal.Data from this trial has been presented in abstract form at the ECFS Conference in Lyon in September 2020.

'A confident parent breeds a confident child': Understanding the experience and needs of parents whose children will transition from paediatric to adult care.

Transitional care for young people with long-term conditions emphasizes the importance of supporting parents, particularly in relation to promoting adolescent healthcare autonomy. Yet, little practical guidance is provided, and transitional care remains suboptimal for many families. This study aimed to examine how parents understand and experience their caregiving role during their child's transition to adult services, to identify parents' needs, and to inform service improvements. Focus groups were undertaken with parents of young people with brittle asthma, osteogenesis imperfecta, or epilepsy. Data were analysed using interpretative phenomenological analysis. Participants (n = 13) described how their parenting roles extended beyond what they consider usual in adolescence. These roles were presented as time consuming, stressful, and unrelenting but necessary to protect children from harm in the face of multiple risks and uncertainties. Such protective strategies were also perceived to hinder adolescent development, family functioning, and their own development as midlife adults. Finding a balance between protecting immediate health and long-term well-being was a major theme. Participants called for improved support, including improved service organization. Recommendations are provided for working with parents and young people to manage the risks and uncertainties associated with their condition, as part of routine transitional care.

A prospective pilot study of home monitoring in adults with cystic fibrosis (HOME-CF): protocol for a randomised controlled trial.

BACKGROUND: Home monitoring has the potential to detect early pulmonary exacerbations in people with cystic fibrosis (CF), with consequent improvements in health outcomes and healthcare associated costs. This study aims to assess the effects of home monitoring on hospital admissions, quality of life, antibiotic requirements, exacerbation frequency, lung function, nutritional outcomes, anxiety, depression, costs and health outcomes, as well as the qualitative effects on the patient experience. METHODS: This randomised controlled mixed-methods trial aims to recruit 100 adults with CF cared for in one large regional CF centre. Participants are randomly allocated 1:1 to the intervention group (twice-weekly home monitoring of symptoms measured by the Cystic Fibrosis Respiratory Symptom Diary - Chronic Respiratory Infection Symptom Score (CFRSD-CRISS) and Forced Expiratory Volume in one second (FEV1)) or a control group (routine clinical care) for the 12-month study period. Measurements are recorded at study visits at baseline, 3, 6, 9 and 12 months. Spirometry, body weight, co-morbidities, medications, hospital inpatient days, courses of antibiotics (oral and intravenous), pulmonary exacerbations (defined by the modified Fuchs criteria) are recorded at each study visit. Health status, capability and health economics are measured at each study visit by the Hospital Anxiety and Depression Scale (HADS), the ICEpop CAPability measure for Adults (ICECAP-A), EuroQol 5 dimensions (EQ-5D-5L) questionnaire and an adapted resource use questionnaire. The patient experience is assessed by semi-structured qualitative interviews at baseline and 12 months. DISCUSSION: Results from this study will help to determine the effect of home monitoring on inpatient bed days and quality of life in adults with CF, as well as other relevant health and health economic outcomes. TRIAL REGISTRATION: This study protocol is registered with Clinicaltrials.gov ( NCT02994706 ), date registered 16th July 2014.

The Role of Pharmacists in Caring for Young People With Chronic Illness.

PURPOSE: To explore the perceived and potential roles of pharmacists in the care of young people aged 10-24 years with chronic illness, through the exemplar of juvenile arthritis, from the perspectives of UK community and hospital pharmacists, health service commissioners, rheumatology health professionals, and lay advocates. METHODS: A sequential mixed methods study design comprises the following: focus groups with community and hospital pharmacists; telephone interviews with pharmacy and rheumatology stakeholders and commissioners; and multidisciplinary group discussions to prioritize roles generated by the first two qualitative phases. RESULTS: The high priority roles for pharmacists, identified by pharmacists and rheumatology staff, were developing generic health care skills among young people; transferring information effectively across care interfaces; building trusting relationships with young people; helping young people to find credible online health information; and the need to develop specialist expertise. Participants identified associated challenges for pharmacists in supporting young people with chronic illness. These challenges included parents collecting prescription refills alone, thus reducing opportunities to engage, and pharmacist isolation from the wider health care team. CONCLUSIONS: This study has led to the identification of specific enhancements to pharmacy services for young people, which have received the endorsement of a wide range of stakeholders. These suggestions could inform the next steps in developing the contribution of community and hospital pharmacy to support young people with chronic illness in the optimal use of their medication.

The Spectrum of Children's Palliative Care Needs: a classification framework for children with life-limiting or life-threatening conditions.

OBJECTIVES: This paper examined the potential of a new classification framework, The Spectrum of Children's Palliative Care Needs, to facilitate identification of children with palliative care needs for the purposes of minimum data set collection and population needs assessment. METHODS: Health and social care professionals (n=50) in a range of paediatric palliative care settings applied The Spectrum to (i) clinical vignettes and (ii) consecutive children on their caseloads. They also provided confidence ratings and written comments about their experiences. Inter-rater reliability, conceptual validity, acceptability, feasibility and sustainability were examined. A subset of professionals (n=9) also participated in semistructured telephone interviews to provide further insight. RESULTS: Inter-rater reliability for the vignettes (κ=0.255) was fair. However, professionals were more confident applying The Spectrum to their caseloads, which included children (n=74) with a range of life-limiting/life-threatening conditions. The Spectrum made conceptual sense in relation to these children and was considered to offer a meaningful way to define the eligible population in service mapping. Benefits for clinical work (eg, facilitating patient review, workload management, clinical audit) and research were also identified. However, important threats to reliability were highlighted. CONCLUSIONS: Preliminary assessment of The Spectrum confirms its potential to promote consistent data set collection in children's palliative care. The results have been used to produce a revised version and user guidelines to address issues raised by participants. However, further research is required to further validate the framework and establish its relevance to families' self-defined needs.

The development and initial validation of a questionnaire to measure help-seeking behaviour in patients with new onset rheumatoid arthritis.

BACKGROUND: Early treatment for rheumatoid arthritis (RA) is vital. However, people often delay in seeking help at symptom onset. An assessment of the reasons behind patient delay is necessary to develop interventions to promote rapid consultation. OBJECTIVE: Using a mixed methods design, we aimed to develop and test a questionnaire to assess the barriers to help seeking at RA onset. DESIGN: Questionnaire items were extracted from previous qualitative studies. Fifteen people with a lived experience of arthritis participated in focus groups to enhance the questionnaire's face validity. The questionnaire was also reviewed by groups of multidisciplinary health-care professionals. A test-retest survey of 41 patients with newly presenting RA or unclassified arthritis assessed the questionnaire items' intraclass correlations. RESULTS: During focus groups, participants rephrased questions, added questions and deleted items not relevant to the questionnaire's aims. Participants organized items into themes: early symptom experience, initial reactions to symptoms, self-management behaviours, causal beliefs, involvement of significant others, pre-diagnosis knowledge about RA, direct barriers to seeking help and relationship with GP. The test-retest survey identified seven items (out of 79) with low intraclass correlations which were removed from the final questionnaire. CONCLUSION: The involvement of people with a lived experience of arthritis and multidisciplinary health-care professionals in the preliminary validation of the DELAY (delays in evaluating arthritis early) questionnaire has enriched its development. Preliminary assessment established its reliability. The DELAY questionnaire provides a tool for researchers to evaluate individual, cultural and health service barriers to help-seeking behaviour at RA onset.

Prognostic indicators for children and young people at the end of life: A Delphi study.

BACKGROUND: Recognizing transitions in end of life care for children is difficult and hinders communication and care planning. AIM: To identify the signs and symptoms that are most useful in signalling which children may have end of life care needs. METHODS: A Delphi study was undertaken with palliative care professionals who rated the extent to which 75 symptoms alerted them that a child/young person may have moved into his or her last (a) weeks/days, (b) 6-12 months of life using a 7-point response scale. Level of support for items was indicated by the median, and consensus was shown by the mean absolute deviation from the median. The impact of the Delphi on final agreement and consensus was also assessed. RESULTS: Second-round questionnaires were completed by 49 (89%) individuals. It was easier to identify prognostic items in the last weeks/days than earlier in the end of life trajectory. Items most indicative included failure of physiological systems, deteriorating level of consciousness, loss of autonomic control (e.g. breathing and peripheral circulation), together with a feeling of the professional that life is ending and an agreement that resuscitation would be futile. Items most indicative of last 6/12 months suggest a progressive decline in disease trajectory, increased chest infections or other complications from which the child has difficulty in making a full recovery and which may require high dependency or critical care. CONCLUSION: This study provides important insight into which signs and symptoms are considered most valuable in identifying children approaching the end of the life.

An evaluation of the impact of the Gold Standards Framework on collaboration in end-of-life care in nursing homes. A qualitative and quantitative evaluation.

BACKGROUND: In the United Kingdom approaching 20% of people aged 85 years and over live in care homes and most will die there. Improving end-of-life care is a government health priority and homes may work with primary care staff and specialist palliative practitioners to provide comprehensive end-of-life care. Consequently effective collaboration between care home and health service practitioners is vital to ensure high quality end-of-life care. OBJECTIVES: To evaluate the impact of a training programme to improve end-of-life care in nursing homes, on collaboration between nursing home staff and other health practitioners. DESIGN: Evaluation using survey methods and qualitative case studies. PARTICIPANTS AND SETTING: All 95 nursing homes in the first national 'Gold Standards Framework in Care Homes' programme in England were invited to participate in the evaluation. METHODS: A survey of homes' characteristics, the approaches to end-of-life care, and liaison with other services, was completed pre and post programme implementation. Case studies were conducted in a sub-sample of 10 homes to provide important context and depth to the evaluation. RESULTS: Pre and post surveys were returned by 49 (52%) homes. Improved collaborations as a result of the programme were anticipated by 31% of managers. Challenges to collaboration included working with large numbers of general practitioners, out-of-hours services and access to specialist practitioners. Improved collaborations between home staff and health service practitioners were identified by 33% of managers as one of the main programme outcomes. Staff reported increased knowledge of end-of-life care, and enhanced confidence, which in turn resulted in improved communication and collaboration. Post-programme, staff felt more confident initiating contact and discussing residents' end-of-life care with general practitioners and those working in specialist palliative care services. CONCLUSIONS: The Gold Standards Framework in Care Homes programme can contribute towards end-of-life care by helping to improve the quality and quantity of communication and collaboration between nursing home staff and primary care and specialist practitioners. Further research is needed to determine why this was not consistent across all homes.

Is children's choice in health care rhetoric or reality? A scoping review.

AIM: This paper is a report of a scoping review examining children and young people's health services with respect to choice in order to inform future development of choice initiatives. BACKGROUND: The importance of including children and young people in the choice agenda reflects the increasing acknowledgement that, individually and collectively, they are important consumers of health care in their own right. Data sources. A scoping review of all major health and medical research databases was undertaken using current guidelines to identify original relevant research papers and grey literature sources from 1990 to 2006. REVIEW METHODS: Reference Manager software was used to collate, summarize, categorize, store and retrieve the search results. Papers meeting the inclusion criteria were read in full and descriptively summarized using a data extraction sheet. Each paper was repeatedly selected using a snowballing approach until saturation was reached. Results. Children and young people want more say in the planning and development of appropriate hospital and community health services. However, little evaluative research was found about whether these choices are acted upon and lead to more responsive services. CONCLUSION: Choice for children and young people is viewed as a positive development in health care and many innovative examples of their involvement in decision-making were found. These illustrated that, given the opportunity, children and young people are willing and able to make decisions about their healthcare services. However, there is a long way to go before the rhetoric of the choice agenda is realized.

'Memorable patient deaths': reactions of hospital doctors and their need for support.

OBJECTIVES: To investigate the reactions experienced by hospital doctors following a recent memorable patient death, defined as a patient death that had occurred in the previous few months that the doctor recollected for any particular reason, the coping strategies employed to deal with these reactions, the impact of training, and the need for support in future situations. METHODS: We carried out a descriptive survey in 2 teaching hospitals and 1 district general hospital in West Yorkshire, UK. Subjects comprised 188 hospital doctors of all grades (from pre-registration house officer to consultant) who were attending 12 educational lunchtime meetings. Main outcome measures included the associations between the intensity of emotional and physical reactions measured using a categorical rating scale, and exposure to previous training, gender, seniority and medical specialty. RESULTS: Reactions of moderate to severe intensity to a patient death were experienced by 5.0-17.5% of doctors, regardless of gender, seniority or medical specialty. Perceived need for both training and increased support from team members was significantly associated with more intense reactions. Common coping strategies included talking, spending time alone and exercise. There was no relationship between respondents' exposure to previous training and the intensity of emotional or physical responses. CONCLUSIONS: Many doctors perceive that they deal with death well. In a minority of doctors, more supportive approaches are necessary that may include both proactive and reactive measures. Examples include raising awareness of support services and establishing formal training programmes, and increasing awareness among senior clinicians of the need to support some team members after a patient's death, which may include ensuring that timely access to a counsellor is provided.

Unmet education and training needs in adolescent health of health professionals in a UK children's hospital.

AIM: To determine the perceived education and training needs in adolescent health of health professionals. DESIGN: Cross-sectional survey Setting and subjects: Hospital staff in a UK children's hospital. OUTCOME MEASURES: perceived barriers, confidence, knowledge, skill and prior teaching in key adolescent health subject areas. RESULTS: The hospital survey was completed by 159/1400 professionals representing a completion rate of 11%. Doctors and staff from 'Professions allied to medicine' rated 'lack of training', 'lack of teaching materials' and ' lack of community resources' as the main barriers to providing developmentally appropriate care. Sixty per cent of hospital respondents had received no prior specific training in adolescent health. All but four topics were perceived to be of very high or high importance by the majority of respondents (54-90%). Low scores in perceived knowledge, confidence and/or skill were reported in nine key subject areas (including adolescent mental health and substance use). Differences between doctors and professions allied to medicine were observed in a minority of areas. CONCLUSION: Unmet education and training needs of a range of professionals working in a paediatric setting were identified in key areas of adolescent health and they provide useful directions for the development of future multidisciplinary training programmes.

Growing up and moving on in rheumatology: development and preliminary evaluation of a transitional care programme for a multicentre cohort of adolescents with juvenile idiopathic arthritis.

This article describes the development and initial evaluation of an evidence-based transitional care programme recently implemented in a multicentre controlled trial in the United Kingdom. The individual components of the programme are described. Evaluation of the acceptability and utilization of these components employed questionnaires administered to users (adolescents with juvenile idiopathic arthritis and their parents) and providers (rheumatology health professionals). The results confirm the acceptability and utilization of the programme components in addition to further innovative developments during the course of the study. In conclusion, the evidence-based transitional care programme components reported here are acceptable and useful to both user and provider and are potentially feasible in clinical practice in a revised format.