Parents' responses to prognostic disclosure at diagnosis of a child with a high‐risk brain tumor: Analysis of clinician‐parent interactions and implications for clinical practice

Background: Previous studies have found that parents of children with cancer desire more prognostic information than is often given even when prognosis is poor. We explored in audio‐recorded consultations the kinds of information they seek. / Methods: Ethnographic study including observation and audio recording of consultations at diagnosis. Consultations were transcribed and analyzed using an interactionist perspective including tools drawn from conversation and discourse analysis. / Results: Enrolled 21 parents and 12 clinicians in 13 cases of children diagnosed with a high‐risk brain tumor (HRBT) over 20 months at a tertiary pediatric oncology center. Clinicians presented prognostic information in all cases. Through their questions, parents revealed what further information they desired. Clinicians made clear that no one could be absolutely certain what the future held for an individual child. Explicit communication about prognosis did not satisfy parents’ desire for information about their own child. Parents tried to personalize prognostic information and to apply it to their own situation. Parents moved beyond prognostic information presented and drew conclusions, which could change over time. Parents who were present in the same consultations could form different views of their child's prognosis. / Conclusion: Population level prognostic information left parents uncertain about their child's future. The need parents revealed was not for more such information but rather how to use the information given and how to apply it to their child in the face of such uncertainty. Further research is needed on how best to help parents deal with uncertainty and make prognostic information actionable

Preschool hyperactivity is associated with long-term economic burden:Evidence from a longitudinal health economic analysis of costs incurred across childhood, adolescence and young adulthood

Background: preschool hyperactivity is an early risk factor for adult mental health problems and criminality. Little is known about; (a) the patterns of long-term service costs associated with this behavioural marker in the general population and (b) the specific factors predicting hyperactivity-related costs. We undertook a prospective study investigating associations between preschool hyperactivity and average individual annual service costs up to late adolescent and young adulthood.Methods: one-hundred and seventy individuals rated as hyperactive by their parents and 88 nonhyperactive controls were identified from a community sample of 4,215 three years olds. Baseline information about behaviour/emotional problems and background characteristics were collected. At follow-up (when individuals were aged between 14 and 25 years) information was obtained on service use, and associated costs since the age of three. Based on this information we calculated the average cost per annum incurred by each individual.Results: compared to controls, preschoolers with hyperactivity had 17.6 times higher average costs per annum across domains (apart from nonmental health costs). These were £562 for each hyperactive individual compared with £30 for controls. Average annual costs decreased as a function of age, with higher costs incurred at younger ages. The effects of hyperactivity remained significant when other baseline factors were added to the model. Effects were fully mediated by later psychiatric morbidity. When the hyperactive group were examined separately, costs were consistently predicted by male gender and, for some cost codes, by conduct problems.Conclusions: preventative approaches targeting early hyperactivity may be of value. Services should be targeted towards high-risk individuals with careful consideration given to the cost-to-benefit trade-off of early intervention strategie

Protocol for the saMS trial (supportive adjustment for multiple sclerosis): a randomized controlled trial comparing cognitive behavioral therapy to supportive listening for adjustment to multiple sclerosis

BackgroundMultiple Sclerosis (MS) is an incurable, chronic, potentially progressive and unpredictable disease of the central nervous system. The disease produces a range of unpleasant and debilitating symptoms, which can have a profound impact including disrupting activities of daily living, employment, income, relationships, social and leisure activities, and life goals. Adjusting to the illness is therefore particularly challenging. This trial tests the effectiveness of a cognitive behavioural intervention compared to supportive listening to assist adjustment in the early stages of MS.MethodsThis is a two arm randomized multi-centre parallel group controlled trial. 122 consenting participants who meet eligibility criteria will be randomly allocated to receive either Cognitive Behavioral Therapy or Supportive Listening. Eight one hour sessions of therapy (delivered over a period of 10 weeks) will be delivered by general nurses trained in both treatments. Self-report questionnaire data will be collected at baseline (0 weeks), mid-therapy (week 5 of therapy), post-therapy (15 weeks) and at six months (26 weeks) and twelve months (52 weeks) follow-up. Primary outcomes are distress and MS-related social and role impairment at twelve month follow-up. Analysis will also consider predictors and mechanisms of change during therapy. In-depth interviews to examine participants’ experiences of the interventions will be conducted with a purposively sampled sub-set of the trial participants. An economic analysis will also take place. DiscussionThis trial is distinctive in its aims in that it aids adjustment to MS in a broad sense. It is not a treatment specifically for depression. Use of nurses as therapists makes the interventions potentially viable in terms of being rolled out in the NHS. The trial benefits from incorporating patient input in the development and evaluation stages. The trial will provide important information about the efficacy, cost-effectiveness and acceptability of the interventions as well as mechanisms of psychosocial adjustment.Trial registrationCurrent Controlled Trials ISRCTN91377356<br/

Evaluation of a system of structured, pro-active care for chronic depression in primary care: a randomised controlled trial

Background: People with chronic depression are frequently lost from effective care, with resulting psychological, physical and social morbidity and considerable social and financial societal costs. This randomised controlled trial will evaluate whether regular structured practice nurse reviews lead to better mental health and social outcomes for these patients and will assess the cost-effectiveness of the structured reviews compared to usual care. The hypothesis is that structured, pro-active care of patients with chronic depression in primary care will lead to a cost-effective improvement in medical and social outcomes when compared with usual general practitioner (GP) care.Methods/Design: Participants were recruited from 42 general practices throughout the United Kingdom. Eligible participants had to have a history of chronic major depression, recurrent major depression or chronic dsythymia confirmed using the Composite International Diagnostic Interview (CIDI). They also needed to score 14 or above on the Beck Depression Inventory (BDI-II) at recruitment.Once consented, participants were randomised to treatment as usual from their general practice (controls) or the practice nurse led intervention. The intervention includes a specially prepared education booklet and a comprehensive baseline assessment of participants' mood and any associated physical and psycho-social factors, followed by regular 3 monthly reviews by the nurse over the 2 year study period. At these appointments intervention participants' mood will be reviewed, together with their current pharmacological and psychological treatments and any relevant social factors, with the nurse suggesting possible amendments according to evidence based guidelines. This is a chronic disease management model, similar to that used for other long-term conditions in primary care. The primary outcome is the BDI-II, measured at baseline and 6 monthly by self-complete postal questionnaire. Secondary outcomes collected by self-complete questionnaire at baseline and 2 years include social functioning, quality of life and data for the economic analyses. Health service data will be collected from GP notes for the 24 months before recruitment and the 24 months of the study.Discussion: 558 participants were recruited, 282 to the intervention and 276 to the control arm. The majority were recruited via practice database searches using relevant READ codes

A pilot randomised controlled trial of personalised care for depressed patients with symptomatic coronary heart disease in South London general practices: the UPBEAT-UK RCT protocol and recruitment.

ABSTRACT: Background: Community studies reveal people with coronary heart disease (CHD) are twice as likely to be depressed as the general population and that this co-morbidity negatively affects the course and outcome of both conditions. There is evidence for the efficacy of collaborative care and case management for depression treatment, and whilst NICE guidelines recommend these approaches only where depression has not responded to psychological, pharmacological, or combined treatments, these care approaches may be particularly relevant to the needs of people with CHD and depression in the earlier stages of stepped care in primary care settings. Methods: This pilot randomised controlled trial will evaluate whether a simple intervention involving a personalised care plan, elements of case management and regular telephone review is a feasible and acceptable intervention that leads to better mental and physical health outcomes for these patients. The comparator group will be usual general practitioner (GP) care. 81 participants have been recruited from CHD registers of 15 South London general practices. Eligible participants have probable major depression identified by a score of ≥8 on the Hospital Anxiety and Depression Scale depression subscale (HADS-D) together with symptomatic CHD identified using the Modified Rose Angina Questionnaire. Consenting participants are randomly allocated to usual care or the personalised care intervention which involves a comprehensive assessment of each participant’s physical and mental health needs which are documented in a care plan, followed by regular telephone reviews by the case manager over a 6-month period. At each review, the intervention participant’s mood, function and identified problems are reviewed and the case manager uses evidence based behaviour change techniques to facilitate achievement of goals specified by the patient with the aim of increasing the patient’s self efficacy to solve their problems. Depressive symptoms measured by HADS score will be collected at baseline and 1, 6- and 12 months post randomisation. Other outcomes include CHD symptoms, quality of life, wellbeing and health service utilisation. Discussion: This practical and patient-focused intervention is potentially an effective and accessible approach to the health and social care needs of people with depression and CHD in primary care. Trial registration: ISRCTN21615909

Cognitive behaviour therapy (CBT) for anxiety and depression in adults with mild intellectual disabilities (ID): a pilot randomised controlled trial

Background: Several studies have showed that people with intellectual disabilities (ID) have suitable skills to undergo cognitive behavioural therapy (CBT). Case studies have reported successful use of cognitive behavioural therapy techniques (with adaptations) in people with ID. Modified cognitive behavioural therapy may be a feasible and effective approach for the treatment of depression, anxiety, and other mood disorders in ID. To date, two studies have reported group-based manaulised cognitive behavioural treatment programs for depression in people with mild ID. However, there is no individual manualised programme for anxiety or depression in people with intellectual disabilities. The aims of the study are to determine the feasibility of conducting a randomised controlled trial for CBT in people with ID. The data will inform the power calculation and other aspects of carrying out a definitive randomised controlled trial.Methods: Thirty participants with mild ID will be allocated randomly to either CBT or treatment as usual (TAU). The CBT group will receive up to 20 hourly individual CBT over a period of 4 months. TAU is the standard treatment which is available to any adult with an intellectual disability who is referred to the intellectual disability service (including care management, community support, medical, nursing or social support). Beck Youth Inventories (Beck Anxiety Inventory & Beck Depression Inventory) will be administered at baseline; end of treatment (4 months) and at six months to evaluate the changes in depression and anxiety. Client satisfaction, quality of life and the health economics will be secondary outcomes.Discussion: The broad outcome of the study will be to produce clear guidance for therapists to apply an established psychological intervention and identify how and whether it works with people with intellectual disabilities

Gianturco Z-stent placement for the treatment of chronic central venous occlusive disease: implantation of 208 stents in 137 symptomatic patients

PURPOSETo report the technical successes, adverse events, and long-term stent patency rates of Gianturco Z-stents for management of chronic central venous occlusive disease.METHODSOverall, 137 patients, with mean age 48.6±16.1 years (range, 16-89 years), underwent placement of Gianturco Z-stents for chronic central venous occlusions. Presenting symptoms included lower extremity edema (n=66, 48.2%), superior vena cava syndrome (n=30, 21.9%), unilateral upper extremity swelling (n=20, 14.6%), hemodialysis fistula or catheter dysfunction (n=11, 8.0%), ascites (n=8, 5.8%), and both ascites and lower extremity edema (n=2, 1.5%). Most common etiologies of central venous occlusion were prior central venous access placement (n=58, 42.3%), extrinsic compression (n=29, 21.2%), and post-surgical anastomotic stenosis (n=27, 19.7%). Number of stents placed, stent implantation location, stent sizes, technical successes, adverse events, need for re-intervention, follow-up evaluation, stent patencies, and mortality were recorded. Technical success was defined as recanalization and stent reconstruction with restoration of in-line venous flow. Adverse events were defined by the Society of Interventional Radiology Adverse Event Classification criteria. Primary and primary-assisted stent patencies were analyzed using Kaplan-Meier analysis.RESULTSIn total, 208 Z-stents were placed. The three most common placement sites were the inferior vena cava (n=124, 59.6%), superior vena cava (n=44, 21.2%), and brachiocephalic veins (n=27, 13.0%). Technical success was achieved in 133 patients (97.1%). There were two (1.5%) severe adverse events (two cases of stent migration to the right atrium), one (0.7%) moderate adverse event, and one (0.7%) mild adverse event. Mean follow-up was 43.6±52.7 months. Estimated 1-, 3-, and 5-year primary stent patency was 84.2%, 84.2%, and 82.1%, respectively. Estimated 1-, 3-, and 5-year primary-assisted patency was 92.3%, 89.6%, and 89.6%, respectively. The 30- and 60- day mortality rates were 2.9% (n=4) and 5.1% (n=7), none of which were directly attributable to Z-stent placement.CONCLUSIONGianturco Z-stent placement is safe and effective for the treatment for chronic central venous occlusive disease with durable short- and long-term patencies