Mothers' perspectives of the experience and impact of caring for their child with a life-limiting neurodevelopmental disability.

BACKGROUND: This study explored mothers' perspectives of the experiences and impact on themselves and their family when their child has a life-limiting neurodevelopmental disability. METHODS: Twelve mothers were interviewed and topics included mothers' experiences of caring, the impact on themselves and their family of care provision, and the management of day-to-day life. Data were analysed using thematic analysis. RESULTS: Four themes were identified. "Starting Out" relates to mothers' experiences of the birth of their child and the aftermath. "Keeping the Show on the Road" describes the strategies families employ to manage life day to day and the resources they use. "Shouldering the Burden" describes the range of physical, psychological, and social consequences of the situation for mothers and the family. "The Bigger Picture" relates to the world outside the family and how this is navigated. CONCLUSIONS: Findings suggest mothers' overall experiences are characterized by a constant struggle, with evidence of negative impacts on family life, though there is also evidence of resilience and coping. Implications regarding the provision of services are discussed.

Follow-up care for survivors of lymphoma who have received curative-intent treatment.

OBJECTIVE: This evidence summary set out to assess the available evidence about the follow-up of asymptomatic survivors of lymphoma who have received curative-intent treatment. METHODS: The medline and embase databases and the Cochrane Database of Systematic Reviews were searched for evidence published between 2000 and August 2015 relating to lymphoma survivorship follow-up. The evidence summary was developed by a Working Group at the request of the Cancer Care Ontario Survivorship and Cancer Imaging programs because of the absence of evidence-based practice documents in Ontario for the follow-up and surveillance of asymptomatic patients with lymphoma in complete remission. RESULTS: Eleven retrospective studies met the inclusion criteria. The proportion of relapses initially detected by clinical manifestations ranged from 13% to 78%; for relapses initially detected by imaging, the proportion ranged from 8% to 46%. Median time for relapse detection ranged from 8.6 to 19 months for patients initially suspected because of imaging and from 8.6 to 33 months for those initially suspected because of clinical manifestations. Only one study reported significantly earlier relapse detection for patients initially suspected because of clinical manifestations (mean: 4.5 months vs. 6.0 months, p = 0.042). No benefit in terms of overall survival was observed for patients depending on whether their relapse was initially detected because of clinical manifestations or surveillance imaging. SUMMARY: Findings in the present study support the importance of improving awareness on the part of survivors and clinicians about the symptoms that might be associated with recurrence. The evidence does not support routine imaging for improving outcomes in this patient population.

The gap between policy and practice: a systematic review of patient-centred care interventions in chronic heart failure.

Patient-centred care (PCC) is recommended in policy documents for chronic heart failure (CHF) service provision, yet it lacks an agreed definition. A systematic review was conducted to identify PCC interventions in CHF and to describe the PCC domains and outcomes. Medline, Embase, CINAHL, PsycINFO, ASSIA, the Cochrane database, clinicaltrials.gov, key journals and citations were searched for original studies on patients with CHF staged II-IV using the New York Heart Association (NYHA) classification. Included interventions actively supported patients to play informed, active roles in decision-making about their goals of care. Search terms included 'patient-centred care', 'quality of life' and 'shared decision making'. Of 13,944 screened citations, 15 articles regarding 10 studies were included involving 2540 CHF patients. Three studies were randomised controlled trials, and seven were non-randomised studies. PCC interventions focused on collaborative goal setting between patients and healthcare professionals regarding immediate clinical choices and future care. Core domains included healthcare professional-patient collaboration, identification of patient preferences, patient-identified goals and patient motivation. While the strength of evidence is poor, PCC has been shown to reduce symptom burden, improve health-related quality of life, reduce readmission rates and enhance patient engagement for patients with CHF. There is a small but growing body of evidence, which demonstrates the benefits of a PCC approach to care for CHF patients. Research is needed to identify the key components of effective PCC interventions before being able to deliver on policy recommendations.

Towards safer use of opioids.

The main aim of our work was to improve the safety of opioid use in our institution, an acute generalhospital with 620 beds. Initially, all reported opioid errors from 2001 - 2006 were audited. The findings directed a range of multidisciplinary staff educational inputs to improve opioid prescribing and administration practice, and encourage drug error reporting. 448 drug errors were reported, of which 54 (12%) involved opioids; of these, 43 (79%) involved codeine, morphine or oxycodone. 31 of the errors (57%) were associated with administration, followed by 12 (22%) with dispensing and 11 (20%) with prescribing. There were 2 reports of definite patient harm. A subsequent audit examined a 17-month period following the introduction of the above teaching: 17 errors were noted, of which 14 (83%) involved codeine, morphine or oxycodone. Again, drug administration was most error-prone, comprising 11 (65%) of reports. However, just 2 (12%) of the reported errors now involved prescribing, which was a reduction.

Higher tacrolimus trough levels on days 2-5 post-renal transplant are associated with reduced rates of acute rejection.

We analyzed the association between whole-blood trough tacrolimus (TAC) levels in the first days post-kidney transplant and acute cellular rejection (ACR) rates. Four hundred and sixty-four consecutive, deceased-donor kidney transplant recipients were included. All were treated with a combination of TAC, mycophenolate mofetil and prednisolone. Patients were analyzed in four groups based on quartiles of the mean TAC on days 2 and 5 post-transplant: Group 1: median TAC 11 ng/mL (n = 122, range 2-13.5 ng/mL), Group 2: median 17 ng/mL (n = 123, range 14-20 ng/mL), Group 3: median 24 ng/mL (n = 108, range 20.5-27 ng/mL) and Group 4: median 33.5 ng/mL (n = 116, range 27.5-77.5 ng/mL). A graded reduction in the rates of ACR was observed for each incremental days 2-5 TAC. The one-yr ACR rate was 24.03% (95% CI 17.26-32.88), 22.20% (95% CI 15.78-30.70), 13.41% (95% CI 8.15-21.63) and 8.69% (95% CI 4.77-15.55) for Groups 1-4, respectively (p = 0.003). This study suggests that higher early TACs are associated with reduced rates of ACR at one yr.

Access to medications in the community by patients in a palliative setting. A systems analysis.

This study performed a systems analysis of the process by which patients under the care of a specialist palliative home care obtained medications, and highlighted factors that delay this process. Systems analysis is the science dealing with analysis of complex, large-scale systems and the interactions within those systems. This study used a mixed-methods approach of questionnaires of general practitioners, pharmacists and patients, and a prospective observational study of delays experienced by patients referred to the home care team over a three-month period. This study found the main factors causing delay to be: medications not being in stock in pharmacies, medications not being available on state reimbursed schemes and inability of patients and carers to courier medications.

Acute renal disease, as defined by the RIFLE criteria, post-liver transplantation.

Acute renal failure (ARF) can complicate up to 60% of orthotopic liver transplants (OLT). The RIFLE criteria were developed to provide a consensus definition for acute renal disease in critically ill patients. Using the RIFLE criteria, we aimed to determine the incidence and risk factors for ARF and acute renal injury (ARI), and to evaluate the link with the outcomes, patient survival and length of hospital stay. Three hundred patients, who received 359 OLTs, were retrospectively analyzed. ARI and ARF occurred post 11.1 and 25.7% of OLTs, respectively. By multivariate analysis, ARI was associated with pre-OLT hypertension and alcoholic liver disease and ARF with higher pre-OLT creatinine, inotrope and aminoglycoside use. ARF, but not ARI, had an impact on 30-day and 1-year patient survival and longer length of hospital stay. ARI and ARF, as defined by the RIFLE criteria, are common complications of OLT, with distinct risk factors and ARF has serious clinical consequences. The development of a consensus definition is a welcome advance, however these criteria do need to be validated in large studies in a wide variety of patient populations.

Effect of rehabilitation facility location on outcomes in head and neck surgical patients.

The objective of this study was to determine the significance of in-hospital rehabilitation facility vs. distant rehabilitation facilities in the outcomes and complications of post-operative head and neck surgical patients. Retrospective review of head and neck surgical patients was conducted over a 5-year period at a tertiary care medical centre. Fifty patients met criteria for this study (35 males, 15 females). Forty-two patients had a primary squamous cell carcinoma and eight patients had other primary malignancies of the head and neck. Thirty-two patients were placed in an in-hospital rehabilitation facility and 18 patients were placed in distant rehabilitation facilities (average distance 40.9 miles). Seventeen patients (34%) had complications including infection/drainage (seven patients), fistula (six patients), pneumonia (two patients), wound dehiscence (two patients) and other minor complications. The difference complication rate among the two groups was not statistically significant (37.5% in-hospital rehabilitation, 27.8% distant rehabilitation; P=0.496). The rate of hospital re-admission was not statistically significant (25% in-hospital rehabilitation patients, 16.7% distant rehabilitation patients; P=0.505). The average length of stay of patients without complications was 18.5 days (SD=5.8) for in-hospital rehabilitation and 12.9 days (SD=17) for distant rehabilitation. This difference was not statistically significant (P=0.346). In summary, one-third of post-operative head and neck surgical patients developed complications while in a rehabilitation facility. The length of stay, hospital re-admission rate and frequency of complications does not correlate with the proximity of the rehabilitation facility to the hospital where the patients received their surgery.

Gender differences in adolescent injury characteristics: a population-based study of hospital A&E data.

OBJECTIVES: To investigate patterns of adolescent home/leisure injury serious enough to require hospital attendance. STUDY DESIGN: Population-based analysis of data collected by the Home and Leisure Accident Surveillance System (HASS/LASS). METHODS: Study subjects were 0-17 year old residents of Airdrie and Coatbridge, Lanarkshire, Scotland, who attended Monklands Hospital Accident and Emergency (A&E) Department with a home/leisure injury during calendar years 1996-1999. Male to female relative risk ratios (M:F RRRs) for A&E attendance, fracture and hospital admission, stratified into sports and non-sports injuries, were calculated. Sports injuries were further analysed by specific sports and by whether the sports activity was organized or informal. Data were analysed in age groups corresponding to children's stage of schooling. RESULTS: The M:F RRR for non-sports A&E attendances remained constant throughout childhood (1.35, 95% CI 1.30-1.39 in 0-17 year olds), whilst that for sports attendances increased sharply with age (2.50, 95% CI 0.89-7.02 in 0-4 year olds, increasing to 8.11, 95% CI 6.27-10.51 in 16-17 year olds). Of sports injury attendances, 50.3% were football-related. Football was overwhelmingly the main cause of boys' sports injury in both the organized and informal sports injury categories. When football injuries were excluded from the analysis, the widening teenage gender gap in injury risk disappeared. There was no significant gender difference in teenagers' rates of A&E attendance for injuries sustained during compulsory school physical education (PE), suggesting a dose-response relationship between sports participation and injury risk. CONCLUSIONS: This study found significant gender inequalities in adolescent injury risk, which were largely attributable to boys' football injuries. Focusing prevention efforts on making football safer would, then, be a sensible strategy for reducing the overall burden of adolescent injury and for reducing sex inequalities in injury risk; however further research is needed to understand how the risks differ between organized and informal football. These findings are also interesting because of what they suggest about teenage girls' lack of participation in sport and habitual physical activity. This is clearly of public health concern because of the links between physical inactivity and a range of health problems.

Coping with the inexorable rise in medical admissions: evaluating a radical reorganisation of acute medical care in a Scottish district general hospital.

OBJECTIVE: To describe radical changes in acute medical care in a district general hospital and assess their impact on staff and patients. DESIGN: A before and after comparison of structure, process and outcome indicators in the year preceding and following reorganisation. SETTING: The Adult Medicine Clinical Directorate of the Royal Alexandra Hospital in Paisley, Scotland. SUBJECTS: Staff in the Medical Directorate and a random sample of 400 patients. INTERVENTIONS: The main stimulus for reorganisation was the pressure caused by a relatively steep rise in admissions. In response, the six existing general medical wards were converted into a 38-bed Medical Admissions Unit and five more specialised wards. A new acute receiving rota allowed each consultant to concentrate almost exclusively on acute receiving for one week at a time. RESULTS: The boarding of patients in non-medical wards was eliminated through improved bed management. The needs of patients became better matched to the specialism of their consultant. The cardiologist's share of in-patients with cardiological problems rose from 34% of 2,877 cases to 58% of 3,085 cases (p < 0.001) and the respiratory physicians' share of respiratory in-patients grew from 53% of 1,281 cases to 67% of 1,287 cases (p < 0.001). After the reorganisation, medical staff had significantly fewer concerns about losing track of patients (p < 0.01) or about boarding (p < 0.01), however, concern about 'blocked beds' became greater (p < 0.05). Nurses reported more time for health promotion (p < 0.01) but also a rise in stress (p < 0.05). More patients reported that staff had time to explain their treatment (85/109 (79%) before, 93/105 (89%) after, p < 0.05) and a higher proportion felt ready for discharge (91/108 (84%) before, 99/106 (93%) after, p < 0.05). CONCLUSIONS: Radical reorganisation of medical care in response to rising acute medical admissions is achievable and may lead to improvements in care.

Postoperative analgesia using a low-dose, oral-transdermal clonidine combination: lack of clinical efficacy.

STUDY OBJECTIVE: To determine if a lower than previously reported oral-transdermal clonidine regimen could reduce postoperative morphine requirements without producing systemic side effects. DESIGN: Double-blind, randomized, placebo-controlled study. SETTING: University-affiliated hospital. PATIENTS: 29 healthy, ASA physical status I and II females undergoing elective abdominal hysterectomy. INTERVENTIONS: Patients received preoperative oral clonidine 4 to 5 mu/kg and a 7 cm2 transdermal clonidine patch (0.2 mg/24 hours) or a placebo tablet and patch. MEASUREMENTS AND MAIN RESULTS: Postoperative patient-controlled analgesia pumps provided morphine during the 48-hour study period. Morphine use, hemodynamic changes, and nonhemodynamic side effects were recorded. Additionally, visual analog pain scales (VAPS) and plasma concentrations of morphine and clonidine were measured. We found that low-dose clonidine had no potentiating effect on morphine analgesia. Postoperative morphine use, VAPS, and morphine plasma levels were similar between the control and clonidine-treated groups. Nevertheless, patients in the clonidine group experienced a significantly greater incidence of intraoperative and postoperative hypotension and bradycardia than did the control group. No differences were noted in the incidence of nonhemodynamic side effects. CONCLUSIONS: The low-dose oral-transdermal clonidine regimen evaluated failed to reduce postoperative morphine requirements, although patients who received clonidine were still at risk for developing hypotension.

Facilitating the care of terminally Ill children.

Life-threatening illness is fortunately rare in children. Some children, however, will need palliative care for symptom control; psychological support may be needed by the child and the child's family; and families may require help with decisions about life-prolonging treatment. Providing consistent high-quality care for a relatively uncommon problem is difficult. Adult palliative care services, liaison with pediatricians can help provide this care.

Improving analgesic prescribing in a general teaching hospital.

Patients suffering from cancer and human immunodeficiency virus (HIV) disease at a teaching hospital were found to have poorly controlled pain. Many were prescribed inappropriate analgesia. A palliative care service was established to provide symptom control for patients and education for staff. Educational materials were developed, didactic teaching organized, and one-to-one education by case discussion provided to improve patient management. A repeat survey to evaluate the service showed an increase in the use of appropriate opioids, such as morphine and diamorphine, and a decrease in the use of buprenorphine and papaveretum, which are less suitable for use in chronic cancer pain. The acceptability of the guidelines and rapid availability of a palliative care opinion has improved analgesic prescribing.