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1.  Diabetes services in the UK: fourth national survey; are we meeting NSF standards and NICE guidelines? 
Archives of Disease in Childhood  2005;90(10):1005-1009.
Background: Previous surveys of children's diabetes service provision in the UK have shown gradual improvements but continuing deficiencies.
Aim: To determine whether further improvements in services have occurred.
Methods: A questionnaire was mailed to all paediatricians in the UK identified as providing care for children and adolescents with diabetes. Responses were compared with results of three previous surveys, and with recommendations in the Diabetes NSF and the NICE type 1 diabetes guidelines.
Results: Replies were received from 187 consultant paediatricians in 169 centres looking after children; 89% expressed a special interest in diabetes, 98% saw children in a designated diabetic clinic, and 95% clinics now have more than 40 patients. In 98% of the clinics there was a specialist nurse (82% now children's trained), but 61% clinics had a nurse:patient ratio <1:100; 39% of clinics did not have a paediatric dietician and in 78% there was no access to psychology/psychiatry services in clinics. Glycated haemoglobin was measured routinely at clinics in 86%, annual screening for retinopathy performed in 80%, and microalbuminuria in 83%. All centres now have local protocols for ketoacidosis, but not for children undergoing surgery (90%) or severe hypoglycaemia (74%). Mean clinic HbA1c levels were significantly lower in the clinics run by specialists (8.9%) than generalists (9.4%). There have been incremental improvements over the last 14 years since the surveys began, but only two clinics met all the 10 previously published recommendations on standards of care.
Conclusions: The survey shows continuing improvements in organisational structure of services for children with diabetes but serious deficiencies remain. Publication and dissemination of the results of the previous surveys may have been associated with these improvements and similar recurrent service review may be applicable to services for other chronic childhood conditions.
doi:10.1136/adc.2005.071613
PMCID: PMC1720116  PMID: 15941771
2.  Improved clinical practice but continuing service deficiencies following a regional audit of childhood diabetes mellitus 
Archives of Disease in Childhood  2000;82(4):302-304.
AIM—To assess the changes in services for children with diabetes in the south west of England between two regionwide audits performed in 1994 and 1998.
METHODS—Questionnaires were sent to consultant paediatricians, specialist diabetes nurses, dietitians, and Local Diabetes Service Advisory Groups. Information was gathered on consultant and nursing caseload, clinic structure, dietetic and psychological services, glycated haemoglobin use, and screening services.
RESULTS—In 1994 there were 21 consultant paediatricians caring for children with diabetes, only seven of whom fulfilled the British Paediatric Association definition of a specialist. By 1998 there were 14, 12 of whom fulfilled this definition. In 1994 a significant number of children were being seen in general paediatric clinics; by 1998 all centres stated that children were being seen in designated diabetes clinics. Between the two audits, despite a decrease in the average caseload of specialist diabetes nurses, nursing services in many centres remained deficient, as did dietetic and psychology services. Glycated haemoglobin use increased from 16 of 21 consultants to all consultants. In 1998 there was still patchy paediatric representation on Local Diabetes Service Advisory Groups.
CONCLUSIONS—The 1994 audit was followed by a change in clinical practice, in contrast to continuing deficiencies in resources, despite the availability of national recommendations and the widespread distribution of the audit report to those in a position of influence.


doi:10.1136/adc.82.4.302
PMCID: PMC1718294  PMID: 10735836
3.  Newly diagnosed diabetes: a study of parental satisfaction. 
Archives of Disease in Childhood  1992;67(8):1011-1013.
A national survey of 509 parents of children with newly diagnosed diabetes elicited a 92% response rate, showing that 96% of children were admitted to hospital, 42% staying in hospital longer than one week and 41% received an intravenous infusion. More than 90% of parents expressed satisfaction with the information given at diagnosis, the preparation they received before discharge home, and the outpatient follow up services. Home visits from a diabetes nurse specialist (DNS) were received by 73% of families and 44% reported that the DNS was the most supportive person in the first year after diagnosis. Readmission during the first 12 months after diagnosis was required by 23% of children, more often in the youngest age group. Poor liaison with schools and the lack of diabetes knowledge in teachers were the sources of greatest dissatisfaction. Children under the care of paediatricians with no specialist interest in diabetes were significantly more likely to be kept in hospital longer at diagnosis and parents were less satisfied with outpatient care and school liaison. The study supports previous recommendations that diabetes nurse specialists are a priority resource in providing support services and that every district should have a paediatrician with a special interest in diabetes and a designated children's diabetic clinic.
PMCID: PMC1793592  PMID: 1520003
4.  Insulin dependent diabetes in children under 5: incidence and ascertainment validation for 1992. 
BMJ : British Medical Journal  1995;310(6981):700-703.
OBJECTIVE--To establish the incidence of insulin dependent diabetes diagnosed in children under 5 years of age in the British Isles during 1992, comparing the national and regional results with those of our 1988 national study, and estimating the 1992 study's level of case ascertainment. DESIGN--Active monthly reporting of cases by consultant paediatricians through the framework of the British Paediatric Surveillance Unit, with additional reports from specialist diabetes nurses and regional health authorities. SUBJECTS--All children diagnosed under the age of 5 years with primary insulin dependent diabetes from 1 January to 31 December 1992 (inclusive) and resident in the British Isles at diagnosis. RESULTS--387 children (208 boys and 179 girls) were confirmed to have insulin dependent diabetes, giving a national incidence of 9.3/100,000/year. This is similar to the 9.9/100,000/year found in 1988. Three sample capture-recapture analysis, which could only be applied across the 12 (out of 18) regions supplying regional information to the study, suggested ascertainment rates of 78% for the British Paediatric Surveillance Unit, 67% for specialist nurses, 69% for regional health authorities, and 99% for the aggregated registry. CONCLUSIONS--The national incidence of diabetes in the under 5s in the British Isles did not differ between 1988 and 1992. Nearly complete (99%) ascertainment of cases was possible only for regions for which three data sources were available. Capture-recapture analysis highlighted both the need for more than one data source and for each data source to be complete for the whole study area.
PMCID: PMC2549096  PMID: 7711537
5.  Development of an early nurse led intervention to treat children referred to secondary paediatric care with constipation with or without soiling 
BMC Pediatrics  2013;13:193.
Background
Constipation is a common chronic childhood condition referred to secondary care. Effective treatment requires early intervention, prolonged medication to soften stools and behavioural support to achieve a regular habit of sitting on the toilet to pass a stool. The purpose of this audit and service development was to assess routine consultant paediatrician-led care against minimum standards and if appropriate to develop a nurse-led intervention. The new care package could then be tried out within general paediatric clinics in Glasgow as a service evaluation. NICE guideline (CG99) has a research recommendation to compare nurse-led care with routine consultant-led care.
Methods
Design was an audit then development of a nurse-led intervention followed by a service evaluation. Participants were children (age 0–13 years), referred by their General Practitioner (GP) to the Royal Hospital for Sick Children Glasgow, with constipation the main problem in the GP letter. The audit covered appointment waiting times, intervention provided, initial follow-up and parental satisfaction with routine consultant-led practice. The nurse-led intervention focused on self-help psychology practice with NICE guideline medical support. This was compared with routine consultant paediatrician care in a service evaluation.
Results
The audit found consultant-led care had long waiting times, delayed initial follow-up and variable intervention. The new nurse-led intervention is described in detail. The nurse-led intervention performed well compared with consultant-led care. Less ‘nurse-led’ children, 3/45 (7%), were still constipated passing less than 3 stools per week compared with 8/58 (14%) receiving consultant-led care. Less ‘nurse-led’ parents, 10/45 (22%), reported their child having pain passing stools in the previous week compared with consultant-led care, 26/58 (45%). The proportion of children, over 4 years, free from soiling accidents was similar, 15/23 (65%) in the nurse-led group and 18/29 (62%) with consultant-led care. Parental satisfaction was slightly better in the nurse-led group.
Conclusion
It is difficult to achieve minimum standards using routine consultant-led care for children referred by their GP with constipation. Nurse-led early intervention is feasible and has produced promising results in a service evaluation. An exploratory trial is planned to develop a teaching module, robust outcomes including costs and benefits, and methodology for a definitive trial recommended by NICE.
doi:10.1186/1471-2431-13-193
PMCID: PMC3870966  PMID: 24252503
Constipation; Child; Intervention studies; Psychological techniques; Medicine
6.  Incidence of insulin dependent diabetes in children aged under 15 years in the British Isles during 1988. 
BMJ : British Medical Journal  1991;302(6774):443-447.
OBJECTIVE--To ascertain the annual incidence rate of insulin dependent diabetes diagnosed in children under the age of 15 years in the British Isles during 1988, and to compare the results with an earlier study carried out in 1973-4. DESIGN--Active monthly reporting of cases by consultant paediatricians, with additional input from diabetologists and all specialist diabetes nurses and health visitors. SETTING--British Isles (England, Wales, Scotland, Northern Ireland, Republic of Ireland) with a total population at risk of 11,819,000 children. PATIENTS--All children diagnosed under the age of 15 years with primary insulin dependent diabetes from 1 January to 31 December 1988 and resident in the British Isles at diagnosis. MAIN OUTCOME MEASURES--National incidence rate of insulin dependent diabetes; differences in incidence rates between regions and between three age groups: 4 and under, 5-9, and 10-14 year olds. RESULTS--1600 children (837 boys and 763 girls) had a confirmed diagnosis of insulin dependent diabetes, giving a national incidence rate of 13.5/100,000/year (95% confidence interval 12.9 to 14.2/100,000/year). This was considerably higher than the incidence rate of 7.7/100,000/year in children under the age of 16 years reported in the British Diabetic Association's study of 1973-4. The age-sex adjusted rates varied between regions, ranging from 6.8/100,000/year (Republic of Ireland) to 19.8/100,000/year (Scotland). There were considerable differences in the numbers of cases diagnosed each month, with the 10-14 year age group showing the most seasonal variation. A quarter of the children (404/1600) were under 5 years old. Case ascertainment was estimated as 90%. CONCLUSIONS--Insulin dependent diabetes in the British Isles does not seem to occur uniformly over time or geographical area. Even allowing for differences in ascertainment between the 1973-4 and 1988 studies, there seems to have been an increase in the incidence rate of insulin dependent diabetes in children under the age of 15 years during the 15 year time period. If diabetes is becoming more common in this age group, possibly by developing earlier in susceptible children, this would be a matter of considerable public health concern.
PMCID: PMC1669352  PMID: 2004172
7.  Audit of diabetes care by caseload 
Archives of Disease in Childhood  1997;77(2):102-108.
Accepted 17 March 1997

OBJECTIVE—To investigate the relationship between clinic provision, consultant and nursing caseload, and processes and outcomes of diabetes care in children.
DESIGN—Retrospective audit in the South Western region of England of 801 children and young people with diabetes; 701 were seen in a designated clinic. Seven of 21 consultants fulfilled the British Paediatric Association (BPA) criteria for a specialist in childhood diabetes. Seventeen nurses provided specialist care.
MAIN OUTCOME MEASURES—Glycated haemoglobin, admissions to hospital clinic attendance rates, contacts with a dietitian, measurements of height and weight, and screening rates for hypertension, microalbuminuria, and retinopathy.
RESULTS—Children under the care of `non-specialists' had higher admission rates to hospital with all diabetes related problems and for hypoglycaemia and lower screening rates for microalbuminuria than those under `specialists'. Children under the care of the two tertiary hospital consultants had lowest glycated haemoglobin results, spent least time in hospital at diagnosis, were most likely to have their heights and weights plotted, and to be screened for microalbuminuria and retinopathy, had higher admission rates, lower clinic attendance rates, and fewer dietitian consultations. Higher nursing caseloads were associated with longer periods of admission at diagnosis, better clinic attendance rates, reduced rates of admission after diagnosis, and less likelihood of having blood pressure measured and being screened for microalbuminuria. Children attending general paediatric clinics were less likely to be seen by a dietitian and to have their height and weight plotted.
CONCLUSIONS—The results are consistent with the recommendation of a BPA working party in 1990 that children with diabetes should be cared for by specialist paediatricians with a caseload of more than 40 children, and that children should be seen in a designated diabetic clinic.


PMCID: PMC1717293  PMID: 9301346
8.  Adverse events associated with paediatric use of complementary and alternative medicine: Results of a Canadian Paediatric Surveillance Program survey 
Paediatrics & Child Health  2009;14(6):385-387.
BACKGROUND
Despite many studies confirming that the use of complementary and alternative medicine (CAM) by children is common, few have assessed related adverse events.
OBJECTIVE
To conduct a national survey to identify the frequency and severity of adverse events associated with paediatric CAM use.
METHODS
Survey questions were developed based on a review of relevant literature and consultation with content experts. In January 2006, the Canadian Paediatric Surveillance Program distributed the survey to all paediatricians and paediatric subspecialists in active practice in Canada.
RESULTS
Of the 2489 paediatricians who received the survey, 583 (23%) responded. Respondents reported that they asked patients about CAM use 38% of the time and that patients disclosed this information before being questioned only 22% of the time. Forty-two paediatricians (7%) reported seeing adverse events, most commonly involving natural health products, in the previous year. One hundred five paediatricians (18%) reported witnessing cases of delayed diagnosis or treatment (n=488) that they attributed to the use of CAM.
CONCLUSION
While serious adverse events associated with paediatric CAM appear to be rare, delays in diagnosis or treatment seem more common. Given the lack of paediatrician-patient discussion regarding CAM use, our findings may under-represent adverse events. A lack of reported adverse events should not be interpreted as a confirmation of safety. Active surveillance is required to accurately assess the incidence, nature and severity of paediatric CAM-related adverse events. Patient safety demands that paediatricians routinely inquire about the use of CAM.
PMCID: PMC2735381  PMID: 20592974
Adverse effects; Complementary therapies; Health survey; Manipulation; Natural products; Paediatrics; Spinal
9.  Children's surgery: a national survey of consultant clinical practice 
BMJ Open  2012;2(5):e001639.
Objectives
To survey clinical practice and opinions of consultant surgeons and anaesthetists caring for children to inform the needs for training, commissioning and management of children's surgery in the UK.
Design
The National Confidential Enquiry into Patient Outcome and Death (NCEPOD) hosted an online survey to gather data on current clinical practice of UK consultant surgeons and anaesthetists caring for children.
Setting
The questionnaire was circulated to all hospitals and to Anaesthetic and Surgical Royal Colleges, and relevant specialist societies covering the UK and the Channel Islands and was mainly completed by consultants in District General Hospitals.
Participants
555 surgeons and 1561 anaesthetists completed the questionnaire.
Results
32.6% of surgeons and 43.5% of anaesthetists considered that there were deficiencies in their hospital's facilities that potentially compromised delivery of a safe children's surgical service. Almost 10% of all consultants considered that their postgraduate training was insufficient for current paediatric practice and 20% felt that recent Continued Professional Development failed to maintain paediatric expertise. 45.4% of surgeons and 39.2% of anaesthetists considered that the current specialty curriculum should have a larger paediatric component. Consultants in non-specialist paediatric centres were prepared to care for younger children admitted for surgery as emergencies than those admitted electively. Many of the surgeons and anaesthetists had <4 h/week in paediatric practice. Only 55.3% of surgeons and 42.8% of anaesthetists participated in any form of regular multidisciplinary review of children undergoing surgery.
Conclusions
There are significant obstacles to consultant surgeons and anaesthetists providing a competent surgical service for children. Postgraduate curricula must meet the needs of trainees who will be expected to include children in their caseload as consultants. Trusts must ensure appropriate support for consultants to maintain paediatric skills and provide the necessary facilities for a high-quality local surgical service.
doi:10.1136/bmjopen-2012-001639
PMCID: PMC3488724  PMID: 23075572
Paediatric Surgery
10.  Avoiding inappropriate paediatric admission: facilitating General Practitioner referral to Community Children’s Nursing Teams 
BMC Family Practice  2013;14:4.
Background
Children’s emergency admissions in England are increasing. Community Children’s Nursing Teams (CCNTs) have developed services to manage acutely ill children at home to reduce demand for unscheduled care. Referral between General Practitioners (GPs) and CCNTs may reduce avoidable admissions and minimise the psychosocial and financial impact of hospitalisation on children, families and the NHS. However, facilitators of GP referral to CCNTs are not known. The aim of this study was to identify facilitators of GP referral to CCNTs.
Methods
Semi-structured interviews with 39 health professionals were conducted between June 2009 and February 2010 in three Primary Care Trusts served by CCNTs in North West England. Interviewees included GPs, Community Children’s Nurses (CCNs), consultant paediatricians, commissioners, and service managers. Qualitative data were analysed thematically using the Framework approach in NVivo 8.
Results
Five facilitators were identified: 1) CCN/CCNT visibility; 2) clear clinical governance procedures; 3) financial and organisational investment in the role of CCNTs in acute care pathways; 4) access and out of hours availability; 5) facilitative financial frameworks.
Conclusion
GPs required confidence in CCNs’ competence to safely manage acutely ill children at home and secure rapid referral if a child’s condition deteriorated. Incremental approaches to developing GP referral to CCNTs underpinned by clear clinical governance protocols are likely to be most effective in building GP confidence and avoiding inappropriate admission.
doi:10.1186/1471-2296-14-4
PMCID: PMC3558326  PMID: 23289981
11.  Where do Young Children in Speciality Care Come From?: A Preliminary Investigation of the Role of Primary Care Physicians 
Introduction
Young children with mental health and developmental problems may not receive appropriate or timely interventions. Primary care physicians are well positioned to play an important role in the early identification and referral of such children. The objective of this pilot study was to explore the role primary care physicians played for a group of such children.
Methods
A single mailing of 1196 self-report questionnaires were sent to parents/caregivers of children under six years of age at four specialty centers in Ontario and Alberta. Key items on the survey included the role of primary care physicians (family physicians and community paediatricians).
Results
Twenty percent of parents/caregivers returned questionnaires. All children saw either a family physician or a community paediatrician, while 65% saw both. Families were more likely to have come to the specialty centre via a referral from a community paediatrician than a family physician. Ten percent reportedly received no referrals from a primary care physician, while 21% did not receive a referral to a specialty centre from these providers.
Conclusions
The majority of children received at least one referral from a primary care physician. Further inquiry is required to determine the timeliness and appropriateness of these referrals.
PMCID: PMC2247443  PMID: 18392162
child; mental disorders; primary health care; referral and consultation; enfant; troubles mentaux; soins de première ligne; référence et consultation
12.  Paediatrician human resource planning in Canada: A 10-year follow-up 
Paediatrics & Child Health  2005;10(10):595-596.
BACKGROUND
Paediatrician human resource planning in Canada is currently a major concern. The optimal mix of physicians by type of practice and geographical distribution also remains controversial for many groups of physicians.
OBJECTIVE
To compare 10-year trends (1987 to 1997) in paediatric practice with respect to age, sex and percentage of paediatricians practicing tertiary care.
METHODS
Information on the demographics and practice patterns of Canadian paediatricians obtained from national surveys conducted in 1987 and 1997 was examined.
RESULTS
In the 1987 survey, 1960 paediatricians were mailed a questionnaire, and 1352 questionnaires were returned (response rate of 69%). In the 1997 survey, 1706 of 2337 paediatricians returned the completed questionnaire (response rate of 73%). In 1987, 26.2% of paediatricians were women compared with 38.5% in 1997 (P<0.0001). When men and women were combined, 14.5% of paediatricians were in the 25- to 34-year age bracket in 1987, compared with only 9.7% in 1997 (P=0.0002). In 1987, 37.7% of paediatricians reported practicing tertiary care versus 38.7% in 1997 (P=0.61). In addition, tertiary care paediatricians have become more centralized in communities with more than 100,000 people.
CONCLUSIONS
The results confirm that the paediatric workforce is aging, located primarily in large urban areas and shifting toward more women. Shortages of paediatricians, especially in remote and rural areas, continue to be a major concern and show no signs of improvement. The potential impact of these changes on delivery and quality of child-care services in the future needs to be assessed.
PMCID: PMC2722614  PMID: 19668670
Paediatricians; Physician human resources; Workforce
13.  Survey Comparing Criteria Used by Rural and Urban Primary Care Physicians for Referrals to Child and Adolescent Psychiatrists and Children’s Mental Health Agencies in Ontario 
Introduction:
Primary care physicians are the first-line assessors of children’s mental health. Previous studies have shown a trend of over-reliance on referrals to child and adolescent psychiatrists and an underutilization of children’s mental health agencies. A survey was conducted to a) examine the criteria used by family physicians and primary-care paediatricians in deciding how to refer youth to mental health services, and b) assess interest in developing a set of formal guidelines outlining when to consider referral to child and adolescent psychiatrists and children’s mental health agencies.
Method:
A mail-out survey was conducted using elements of the Dillman method. Two regions in Ontario were surveyed, Northwestern Ontario and Middlesex County, allowing for comparison between rural and urban settings.
Results:
Of the 266 physicians eligible for the study, 116 returned completed surveys, for a response rate of 40%. Awareness and utilization of children’s mental health agencies was higher than predicted in both regions. A number of referral trends were identified. A majority of respondents in both regions indicated that they would like a standardized protocol and/or guidelines when referring to both psychiatrists and children mental health agencies.
Conclusion:
This study demonstrated that, in addition to referring to child and adolescent psychiatrists, the majority of primary care physicians are aware of and utilize children’s mental health agencies in Ontario.
PMCID: PMC2962541  PMID: 21037919
children’s mental health agencies; referral patterns; rural primary care physicians; family physicians; paediatricians; organisme de santé mentale pour enfants; mode de référence; médecin de première ligne en milieu rural; médecin de famille; pédiatre
14.  Nurse Reports from the Frontlines: Analysis of a Statewide Nurse Survey 
Nursing forum  2011;46(1):4-10.
BACKGROUND
Registered nurses on the frontlines of care are increasingly burdened by changes in staffing, increased turnover, demands on their time and the continual need for advanced knowledge and training. We identify employment and environmental characteristics that may ultimately affect the quality of care
METHODS
Surveys were mailed to a random sample of all registered nurses licensed and residing in large southeastern US State. Responses from 10, 951 nurses providing direct patient care were compared to national findings. Descriptive statistics were used to examine demographics, the practice environment, nurse outcomes and the quality of care.
RESULTS
Nurses in this state are more racially diverse and less educated that nurses nationally. Theses nurses report high levels of burnout and job dissatisfaction, and almost one-quarter intend to leave their jobs within the next year. The majority of nurses report good working relationships with physicians, but perceive problems with workplace management.
CONCLUSION
Nurses report inadequate resources and the administrative support necessary to provide quality care. The proportion of nurses with baccalaureate and graduate education qualifications is less than is needed now and certainly insufficient for the future. Policy efforts must address these issues to retain our nurse workforce and improve the quality of patient care.
doi:10.1111/j.1744-6198.2010.00201.x
PMCID: PMC3117634  PMID: 21306390
nurse work environment; nurse education; job satisfaction; burnout; intent to leave
15.  Paediatric palliative home care by general paediatricians: a multimethod study on perceived barriers and incentives 
BMC Palliative Care  2010;9:11.
Background
Non-specialist palliative care, as it is delivered by general practitioners, is a basic component of a comprehensive palliative care infrastructure for adult patients with progressive and far advanced disease. Currently palliative care for children and adolescents is recognized as a distinct entity of care, requiring networks of service providers across different settings, including paediatricians working in general practice. In Germany, the medical home care for children and adolescents is to a large extent delivered by general paediatricians working in their own practice. However, these are rarely confronted with children suffering from life-limiting diseases. The aim of this study was therefore to examine potential barriers, incentives, and the professional self-image of general paediatricians with regard to paediatric palliative care.
Methods
Based on qualitative expert interviews, a questionnaire was designed and a survey among general paediatricians in their own practice (n = 293) was undertaken. The survey has been developed and performed in close cooperation with the regional professional association of paediatricians.
Results
The results showed a high disposition on part of the paediatricians to engage in palliative care, and the majority of respondents regarded palliative care as part of their profile. Main barriers for the implementation were time restrictions (40.7%) and financial burden (31.6%), sole responsibility without team support (31.1%), as well as formal requirements such as forms and prescriptions (26.6%). Major facilitations were support by local specialist services such as home care nursing service (83.0%), access to a specialist paediatric palliative care consultation team (82.4%), as well as an option of exchange with colleagues (60.1%).
Conclusions
Altogether, the high commitment to this survey reflects the relevance of the issue for paediatricians working in general practice. Education in basic palliative care competence and communication skills was seen as an important prerequisite for the engagement in paediatric palliative home care. A local network of specialist support on site and a 24/7 on-call service are necessary in order to facilitate the implementation of basic palliative care by paediatricians in their own practice.
doi:10.1186/1472-684X-9-11
PMCID: PMC2902453  PMID: 20525318
16.  Considering quality of care for young adults with diabetes in Ireland 
Background
Research on the quality of diabetes care provided to young adults with Type 1 diabetes is lacking. This study investigates perceptions of quality of care for young adults with Type 1 diabetes (23–30 years old) living in the Republic of Ireland.
Methods
Thirty-five young adults with Type 1 diabetes (twenty-nine women, six men) and thirteen healthcare professionals (ten diabetes nurse specialists, three consultant Endocrinologists) were recruited. All study participants completed semi-structured interviews that explored their perspectives on the quality of diabetes services in Ireland. Interviews were analyzed using standard qualitative thematic analysis techniques.
Results
Most interviewees identified problems with Irish diabetes services for young adults. Healthcare services were often characterised by long waiting times, inadequate continuity of care, overreliance on junior doctors and inadequate professional-patient interaction times. Many rural and non-specialist services lacked funding for diabetes education programmes, diabetes nurse specialists, insulin pumps or for psychological support, though these services are important components of quality Type 1 diabetes healthcare. Allied health services such as psychology, podiatry and dietician services appeared to be underfunded in many parts of the country. While Irish diabetes services lacked funding prior to the recession, the economic decline in Ireland, and the subsequent austerity imposed on the Irish health service as a result of that decline, appears to have additional negative consequences. Despite these difficulties, a number of specialist healthcare services for young adults with diabetes seemed to be providing excellent quality of care. Although young adults and professionals identified many of the same problems with Irish diabetes services, professionals appeared to be more critical of diabetes services than young adults. Young adults generally expressed high levels of satisfaction with services, even where they noted that aspects of those services were sub-optimal.
Conclusion
Good quality care appears to be unequally distributed throughout Ireland. National austerity measures appear to be negatively impacting health services for young adults with diabetes. There is a need for more Endocrinologist and diabetes nurse specialist posts to be funded in Ireland, as well as allied health professional posts.
doi:10.1186/1472-6963-13-448
PMCID: PMC3883518  PMID: 24168159
Type 1 diabetes; Quality of care; Young adult; Emerging adult; Ireland
17.  A survey of the management of newborns with severe hemophilia in Canada 
Paediatrics & Child Health  2013;18(4):189-193.
OBJECTIVE
To determine the practice patterns of Canadian hematologists and neonatologists/paediatricians who care for newborns with hemophilia, with regard to vitamin K administration, use of empirical clotting factor replacement therapy, neuroimaging and timing of hematology consultation.
METHODS:
Hematologists and neonatologists/paediatricians, identified from membership lists of Canadian professional organizations, were provided electronic and/or paper versions of the survey instrument. Questions were posed in the context of specific clinical scenarios. Differences in response proportions between groups were compared for selected questions.
RESULTS:
There were 171 respondents among 616 eligible persons who were sent the survey; 58 respondents had recent experience managing a newborn with hemophilia. There was a consensus not to provide empirical treatment to well newborns after uncomplicated deliveries, to provide empirical treatment to symptomatic newborns and to obtain neuroimaging for symptomatic newborns. Systematic differences between hematologists and neonatologists/paediatricians existed with regard to the timing of hematology consultation when the diagnosis of hemophilia had not been confirmed antenatally, the route of vitamin K administration for newborns with hemophilia and the choice of product to use for empirical treatment of a symptomatic newborn.
CONCLUSIONS:
The observed lack of consensus regarding important management decisions indicates a need for ongoing research in the care of newborns with hemophilia. Systematic differences between hematologists and neonatologists/paediatricians suggest a role for improved communication and collaboration between these two groups of practitioners.
PMCID: PMC3805619  PMID: 24421686
Hemophilia A; Hemophilia B; Intracranial hemorrhages; Neuroimaging; Newborn
18.  Protocol and baseline data from The Inala Chronic Disease Management Service evaluation study: a health services intervention study for diabetes care 
Background
Type 2 Diabetes Mellitus is one of the most disabling chronic conditions worldwide, resulting in significant human, social and economic costs and placing huge demands on health care systems. The Inala Chronic Disease Management Service aims to improve the efficiency and effectiveness of care for patients with type 2 diabetes who have been referred by their general practitioner to a specialist diabetes outpatient clinic. Care is provided by a multidisciplinary, integrated team consisting of an endocrinologist, diabetes nurse educators, General Practitioner Clinical Fellows (general practitioners who have undertaken focussed post-graduate training in complex diabetes care), and allied health personnel (a dietitian, podiatrist and psychologist).
Methods/Design
Using a geographical control, this evaluation study tests the impact of this model of diabetes care provided by the service on patient outcomes compared to usual care provided at the specialist diabetes outpatient clinic. Data collection at baseline, 6 and 12-months will compare the primary outcome (glycaemic control) and secondary outcomes (serum lipid profile, blood pressure, physical activity, smoking status, quality of life, diabetes self-efficacy and cost-effectiveness).
Discussion
This model of diabetes care combines the patient focus and holistic care valued by the primary care sector with the specialised knowledge and skills of hospital diabetes care. Our study will provide empirical evidence about the clinical effectiveness of this model of care.
Trial registration
Australian New Zealand Clinical Trials Registry ACTRN12608000010392.
doi:10.1186/1472-6963-10-134
PMCID: PMC2890638  PMID: 20492731
19.  Parent Perspectives of Diabetes Management in Schools 
The Diabetes educator  2008;34(6):996-1003.
Purpose
The purpose of this study is to investigate parent reports of the diabetes care support their children receive in school, their concerns about diabetes management in school, and their knowledge of federal laws that protect children with diabetes. In addition, the study explores ethnic and socioeconomic status differences in diabetes management in school.
Methods
An ethnically heterogeneous sample of 309 parents of children with diabetes was recruited from a community-based and a university-based diabetes outpatient clinic. Parents completed a survey assessing supports their child's school provides for diabetes care, worries about diabetes care in school, and awareness of federal laws that pertain to children with diabetes.
Results
Many children did not have a written care plan or a nurse at school, but significantly more white children had these supports than Hispanic or black children. Most children were not allowed to check blood glucose levels or administer insulin in class. Most parents were worried about hyperglycemia and hypoglycemia in school, and most were not at all or only a little confident in the school's ability to care for diabetes. Most parents were not aware of federal laws, but high-income and white parents were more likely to be aware.
Conclusions
According to parents in the current study, children receive inadequate diabetes management support in schools. Minority children are less likely to receive supports than white children. Parents are worried about diabetes management in school, but most do not have the knowledge of federal laws necessary to protect their children.
doi:10.1177/0145721708325155
PMCID: PMC2929970  PMID: 19075081
20.  The CHAT Project: Paediatricians and Mental Health Clinicians: Working Together for the Sake of the Children 
Introduction:
The Shared Care model, originally developed to address the paucity of adult mental health resources, has potential applicability to the design and delivery of mental health services for children and youth. With a similar prevalence of mental illness and more difficulty accessing mental health care than adults, Canadian children and youth have been even less well served than their parents. As there is a significant overlap in the types of health concerns for which children and youth are seen by mental health clinicians and paediatricians, building improved collaboration between these groups is an obvious, though under-utilized, method of enhancing mental health care for this population. The CHAT project was a one year collaboration involving three different types of collaborative activities between mental health clinicians and paediatricians.
Methods:
Out-patient mental health clinicians and community paediatricians were surveyed about their educational needs and interests. A community paediatrician joined an outpatient mental health care team, continuing professional educational activities were provided by each group for the other and were evaluated.
Results:
The paediatrician’s participation was evaluated positively by team members. Eighty-three percent of mental health clinicians (n=10) rated the educational sessions positively and 77.8% (n=7) noted increased knowledge. Paediatricians expressed strong interest in having more mental health-related educational activities.
Conclusion:
This small project provided opportunities for useful exchanges between mental health clinicians and community paediatricians and preliminary evidence that shared care initiatives for children and youth should be further researched.
PMCID: PMC2687471  PMID: 19495431
shared care; collaborative mental health care; paediatric mental health; child psychiatry; soins partagés; collaboration en santé mentale; santé mentale pédiatrique; psychiatrie de l’enfant
21.  ‘Care left undone’ during nursing shifts: associations with workload and perceived quality of care 
BMJ Quality & Safety  2013;23(2):116-125.
Background
There is strong evidence to show that lower nurse staffing levels in hospitals are associated with worse patient outcomes. One hypothesised mechanism is the omission of necessary nursing care caused by time pressure—‘missed care’.
Aim
To examine the nature and prevalence of care left undone by nurses in English National Health Service hospitals and to assess whether the number of missed care episodes is associated with nurse staffing levels and nurse ratings of the quality of nursing care and patient safety environment.
Methods
Cross-sectional survey of 2917 registered nurses working in 401 general medical/surgical wards in 46 general acute National Health Service hospitals in England.
Results
Most nurses (86%) reported that one or more care activity had been left undone due to lack of time on their last shift. Most frequently left undone were: comforting or talking with patients (66%), educating patients (52%) and developing/updating nursing care plans (47%). The number of patients per registered nurse was significantly associated with the incidence of ‘missed care’ (p<0.001). A mean of 7.8 activities per shift were left undone on wards that are rated as ‘failing’ on patient safety, compared with 2.4 where patient safety was rated as ‘excellent’ (p <0. 001).
Conclusions
Nurses working in English hospitals report that care is frequently left undone. Care not being delivered may be the reason low nurse staffing levels adversely affects quality and safety. Hospitals could use a nurse-rated assessment of ‘missed care’ as an early warning measure to identify wards with inadequate nurse staffing.
doi:10.1136/bmjqs-2012-001767
PMCID: PMC3913111  PMID: 23898215
Nurses; Patient safety; Risk management; Health policy
22.  A decade of diabetes: keeping children out of hospital. 
BMJ : British Medical Journal  1993;307(6896):96-98.
OBJECTIVES--To document the number of children aged less than 15 years who developed diabetes and were managed within one large health district, and to evaluate the outcome of those children managed without hospital admission at diagnosis. DESIGN--A retrospective study over 1979-88, when a paediatrician and a physician with special interests in childhood diabetes initiated joint clinics. Data collected from the district diabetes register and files of consultants and health visitors specialising in diabetes. SETTING--Referral of children to consultants in Leicestershire (total population 863,000). MAIN OUTCOME MEASURES--The proportion of children managed without hospital admission, comparison of readmission rates and glycated haemoglobin concentrations between children admitted and those not admitted. RESULTS--Over 10 years 236 children aged 10-14 years developed diabetes (annual incidence rate 12.8/100,000 child population (95% confidence interval 11.3 to 14.7)). In total 138 were not admitted to hospital but received supervised management based at home. Admitted children were younger or acidotic or their family doctors did not contact the diabetes team. Duration of admission declined from seven days in 1979-80 to three days in 1987-8. Ninety two were not admitted to hospital during the 10 years for any reason. Significantly fewer children who received management at home were readmitted for reasons related to diabetes than the group treated in hospital (30 (22%) v 40 (41%); p = 0.004). Concentrations of glycated haemoglobin were no different between the two groups. CONCLUSIONS--Children with newly diagnosed diabetes may be safely and effectively managed out of hospital. Domiciliary or community based management depends on the commitment of consultants specialising in diabetes working in close cooperation with general practitioners, specialist nurses in diabetes, and dietitians.
PMCID: PMC1697706  PMID: 8343736
23.  The 2012 SAGE wait times program: Survey of Access to GastroEnterology in Canada 
BACKGROUND:
Periodically surveying wait times for specialist health services in Canada captures current data and enables comparisons with previous surveys to identify changes over time.
METHODS:
During one week in April 2012, Canadian gastroenterologists were asked to complete a questionnaire (online or by fax) recording demographics, reason for referral, and dates of referral and specialist visits for at least 10 consecutive new patients (five consultations and five procedures) who had not been seen previously for the same indication. Wait times were determined for 18 indications and compared with those from similar surveys conducted in 2008 and 2005.
RESULTS:
Data regarding adult patients were provided by 173 gastroenterologists for 1374 consultations, 540 procedures and 293 same-day consultations and procedures. Nationally, the median wait times were 92 days (95% CI 85 days to 100 days) from referral to consultation, 55 days (95% CI 50 days to 61 days) from consultation to procedure and 155 days (95% CI 142 days to 175 days) (total) from referral to procedure. Overall, wait times were longer in 2012 than in 2005 (P<0.05); the wait time to same-day consultation and procedure was shorter in 2012 than in 2008 (78 days versus 101 days; P<0.05), but continued to be longer than in 2005 (P<0.05). The total wait time remained longest for screening colonoscopy, increasing from 201 days in 2008 to 279 days in 2012 (P<0.05).
DISCUSSION:
Wait times for gastroenterology services continue to exceed recommended targets, remain unchanged since 2008 and exceed wait times reported in 2005.
PMCID: PMC3731118  PMID: 23472243
Access; Audit; Canada; Endoscopy; Gastroenterology; Wait time
24.  Doctors' views on diabetes. 
Archives of Disease in Childhood  1984;59(6):566-570.
Children with diabetes may be managed by either paediatricians or adult physicians with a particular interest in diabetes. This study compares the views of these two groups of doctors on juvenile onset diabetes. A questionnaire was given to all doctors attending two conferences, one primarily for paediatricians and one primarily for adult physicians with a particular interest in diabetes. Adult physicians estimated morbidity and mortality from juvenile onset diabetes to be significantly higher after 30 years than did paediatricians. The two groups of doctors also differed in the target blood glucose concentrations they considered optimal for diabetic children--more paediatricians opted for higher values than did adult physicians. The findings of this study support the view that paediatricians and adult physicians view juvenile onset diabetes differently. The origin of these differences is uncertain but may relate to the contrasting clinical experiences of the two groups of specialists.
PMCID: PMC1628787  PMID: 6742878
25.  Community paediatricians' counseling patterns and knowledge of recommendations relating to child restraint use in motor vehicles 
Injury Prevention  2004;10(2):103-106.
Background: Road traffic injury is the leading cause of death among Canadian children and youth. Transport Canada recommends four types of child restraint depending on the size of the child, and recent studies have demonstrated the effectiveness of recommended restraint use.
Objectives: To determine community paediatricians' knowledge of Transport Canada recommendations for child restraint use in vehicles, and to examine paediatricians' counseling patterns in relation to child passenger safety.
Methods: A mailed questionnaire survey of all community paediatricians affiliated with the Hospital for Sick Children, Toronto was conducted. A 16 item questionnaire gathered information on knowledge of Transport Canada recommendations for child restraint use, general counseling patterns in relation to child passenger safety, and demographic information.
Results: In total, 60 community paediatricians in active practice were identified. Of these, 48 (80%) responded to the mailed questionnaire. Almost all paediatricians (92%) correctly identified the recommended weight for transition to a forward-facing car seat, whereas fewer paediatricians (63%) correctly identified the recommended weight for transition to a booster seat from a forward-facing car seat, and only one third of paediatricians correctly identified the recommended weight for transition from a booster seat to a seat belt.
Conclusion: Community paediatricians' knowledge of Transport Canada recommendations for child restraint use in vehicles is incomplete. There is a need for such recommendations to be better disseminated to paediatricians and parents so that information on child restraint use is delivered in a clear and consistent manner.
doi:10.1136/ip.2003.004168
PMCID: PMC1730066  PMID: 15066976

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