Ongoing Medical Care Research Articles

HIV viral suppression among persons with varying levels of engagement in HIV medical care, 19 US jurisdictions.

Ongoing HIV medical care is vital in achieving and maintaining viral suppression. We examined viral suppression applying retention in care definitions used by various federal agencies. Using National HIV Surveillance System data from 19 US jurisdictions with complete CD4 and viral load reporting, we determined viral suppression among persons who met the National HIV/AIDS Strategy retention in care definition (≥2 visits ≥3 months apart; "retained in continuous care") and among those who had evidence of care but did not meet the definition ("engaged in care"). We also examined viral suppression among persons who met the Health and Human Services Core Indicator definition for retention. Of 338,959 persons living with diagnosed HIV infection in 19 areas in 2010, 63.7% received any care; of these, 19.7% were "engaged in care" and 80.3% were "retained in continuous care." Of those "engaged in care," 47.7% achieved viral suppression compared with 73.6% of persons "retained in continuous care." Significant differences were evident for all subpopulations within each care category; younger persons and blacks/African Americans had lower levels of viral suppression than their counterparts. Persons "engaged in care," regardless of sex, age, race/ethnicity, and transmission category, had significantly lower percentages of viral suppression than persons "retained in continuous care." Similar patterns of viral suppression were found for persons meeting the Health and Human Services definition compared with persons "retained in continuous care." Higher levels of engagement in care, including more frequent monitoring of CD4 and viral load, were associated with viral suppression.

Survivorship in APL- Outcomes of Acute Promyelocytic Leukemia (APL) Patients (pts) after Maintaining Complete Remission (CR) for at Least 3 Years

Introduction: The outcome for pts with APL has improved over time most recently with the use of ATRA and arsenic trioxide (ATO). The purpose of this study was to investigate the survivorship outcomes of APL pts who maintained CR for at least 3 years treated with both chemotherapy and non-chemotherapy based regimens (i.e. potentially cured).Methods: We performed a chart review of pts with APL treated at our institution who achieved CR for at least 3 years after their initial treatment to analyze their long-term outcomes.Results: 185 pts with APL were treated between 1991 and 2010 at our institution. 165 (89%) pts achieved CR. Among them, 124 (75%) maintained 1st CR for at least 3 years. Of these 124 pts, 91 pts were treated without chemotherapy (ATRA and ATO ± gemtuzumab ozogamicin), while 33 pts pts were treated with chemotherapy (anthracyclines) as part of their treatment. The median age for each group was 46 years (range, 25-80) for those treated without chemotherapy and 40 year (range, 26-63) with chemotherapy. Characteristics of APL survivor pts at the time of diagnosis were as follows: hypertension (HTN) was present in 24% of the pts; cardiac disease in 13%; diabetes (DM) in 21%; pulmonary disease in 8%. Median number of medications per pt at baseline was 1 (0-20). Relapses after maintaining CR for ≥3 years were noted in 4% of the pts: 3% of the pts treated without chemotherapy and 6% of pts with chemotherapy (p=0.55). The median CR duration for those who relapsed was 7.5 years (4.1-9.7) and 3.75 years (3.5-4), respectively. A 2nd complete remission (CR2) was achieved in 100% of pts. 60% of all pts were treated without chemotherapy, while 40% were treated with chemotherapy. New medical problems that were present at the 3 year mark in pts treated without chemotherapy included: HTN in 39% of pts; cardiac disease, including coronary artery disease (CAD), myocardial infarctions (MI) and arrhythmias in 11%; renal insufficiency in 3%; DM in 25%; hematological disorders in 8%; pulmonary disorders occurred in 5%; neurological disorders in 9%. The median number of medications per pt 3 yrs from initial CR treated without chemotherapy was 3 (range, 0-15). New medical problems that were present at the 3 year mark in pts treated with chemotherapy included: HTN in 19% of pts; cardiac disease in 7%; DM in 7%; neurological disorders were noted in 7%. No pulmonary, renal or hematological disorders in pts treated with chemotherapy were noted at the 3 year mark. The median number of medications per pt 3 yrs from initial CR treated with chemotherapy was 0 (range, 0-5). New medical problems that developed at time of last follow up in pts treated without chemotherapy included: HTN in 43% of pts; cardiac disease in 14%; renal insufficiency in 7%; DM in 26%; hematological disorders in 11%; pulmonary disorders occurred in 8%; neurological disorders in 11%. The median number of medications per pt at the time of last follow up from initial CR treated without chemotherapy was 4 (range, 0-23). New medical problems that were present at the time of last follow up in pts treated with chemotherapy included: HTN in 26% of pts; cardiac disease in 15%; DM in 15%; neurological disorders were noted in 15%. No pulmonary, renal or hematological disorders in pts treated with chemotherapy were noted at the time of last follow up. The median number of medications per pt at the time of last follow up from initial CR treated with chemotherapy was 0 (range, 0-14). Second malignancies occurred in 8% of pts. The most common 2nd malignancy was breast cancer, occurring in 2% of pts. At a median follow up of 6.3 years (3.2-10.2) and 7.9 years (3.9-14) respectively, 88% and 82% of pts are alive. The most common causes of death included second malignancies, accounting for 41% of all deaths and cardiac diseases, accounting for 29% of all deaths.Conclusion: APL pts who achieved CR for at least 3 years have a very low incidence of late relapses. While most are alive today, ongoing medical care and surveillance is required to manage chronic and emerging comorbidities. The extent to which prior therapy contributes to these co-morbidities requires further study. [Display omitted] DisclosuresNo relevant conflicts of interest to declare.

Isotretinoin Exposure and Risk of Inflammatory Bowel Disease

IMPORTANCE Isotretinoin is the standard treatment for refractory severe nodulocystic acne.A true association between prior isotretinoin use and development of inflammatory bowel disease (IBD) is uncertain. Addressing the reality of this association is important in decision making for both the clinician and the patient when isotretinoin treatment is indicated.OBJECTIVE To assess the risk of IBD mainly in patients with acne with and without isotretinoin exposure.DESIGN, SETTING, AND PARTICIPANTS In this retrospective, single-center study, the electronic medical records of patients who were primarily seeking acne treatment were reviewed for isotretinoin exposure. International Classification of Diseases, Ninth Revision (ICD-9) codes were used to search for IBD diagnosis. participants included 1078 patients from 1995 to 2011,with isotretinoin referenced in their medical records, and who had ongoing local medical care defined as having had a serum sample collected between 2006 to 2011 for any reason while an Olmsted County, Minnesota, resident at the time of serum sample collection.EXPOSURES The exposed group included the patients with confirmed prior isotretinoin exposure (n = 576), and the nonexposed group were defined as patients who never received isotretinoin or received it after the diagnosis of IBD (n = 502).MAIN OUTCOMES AND MEASURES Risk of IBD among isotretinoin-exposed vs non exposed patients.RESULTS Both groups were comparable by race, prior systemic antibiotic use, and systemic tetracycline use. Inflammatory bowel disease developed less frequently in the isotretinoin-exposed group vs the nonexposed group (0.9%vs 2.6%; P = .03; unadjusted odds ratio [OR], 0.33; 95%CI, 0.12-0.93; P = .04). The negative association between isotretinoin exposure and IBD remained after adjusting for sex (OR, 0.28; 95%CI, 0.10-0.80;P = .02) and for sex and non acne indication (OR, 0.28; 95%CI, 0.10-0.79; P = .02).CONCLUSIONS AND RELEVANCE Our study did not show an increased risk of IBD with prior isotretinoin use. If anything, the risk seemed to be decreased. Although these results may be due to chance given the small number of IBD cases, the anti-inflammatory and immune-modulating effects of isotretinoin may be worth exploring.

Cushing syndrome.

Cushing syndrome.

Eliminating LGBTIQQ Health Disparities: The Associated Roles of Electronic Health Records and Institutional Culture.

For all humans, sexual orientation and gender identity are essential elements of identity, informing how we plan and live our lives. The historic invisibility of sexual minorities in medicine has meant that these important aspects of their identities as patients have been ignored, with the result that these patients have been denied respect, culturally competent services, and proper treatment. Likely due to historic rejection and mistreatment, there is evidence of reluctance on the part of LGBT patients to disclose their sexual orientation (SO) or gender identity (GI) to their health care providers. There is some perception of risk in sharing SO and GI for many patients who have had bad prior experiences. Despite these risks, we argue that we can improve the quality of care provided this population only by encouraging them to self-identify and then using that information to improve quality of care. One strategy both to prompt patient self-identification and to store and use SO and GI data to improve care centers on the use of electronic health records. However, gathering SO and GI data in the EHR requires a workforce that knows both how to obtain and how to use that information. To develop these competencies, educational programs for health professionals must prepare students and educators to elicit and to use sexual orientation and gender identity information to improve care while simultaneously ensuring the safety of patients, trainees, and staff and faculty members as SO and GI become openly discussed and integral parts of ongoing medical discussion and care. As determination of SO and GI demographics becomes more common in health research, we will more fully understand the health risks for all the LGBTIQQ populations.

Epileptic encephalopathy with continuous spike-waves during sleep: the need for transition from childhood to adulthood medical care appears to be related to etiology.

Epileptic encephalopathy with continuous diffuse spike-waves during slow-wave sleep (ECSWS) presents clinically with infrequent nocturnal focal seizures, atypical absences related to secondary bilateral synchrony, negative myoclonia, and atonic and rare generalized tonic-clonic seizures. The unique electroencephalography (EEG) pattern found in ECSWS consists of continuous, diffuse, bilateral spike-waves during slow-wave sleep. Despite the eventual disappearance of clinical seizures and EEG abnormalities by adolescence, the prognosis is guarded in most cases because of neuropsychological and behavioral deficits. ECSWS has a heterogeneous etiology (genetic, structural, and unknown). Because epilepsy and electroencephalography (EEG) abnormalities in epileptic encephalopathy with continuous diffuse spike-waves during slow-wave sleep (ECSWS) are self-limited and age related, the need for ongoing medical care and transition to adult care might be questioned. For adolescents in whom etiology remains unknown (possibly genetic) and who experience the disappearance of seizures and EEG abnormalities, there is rarely need for long-term neurologic follow-up, because often a relatively normal cognitive and social evolution follows. However, the majority of patients with structural and possibly "genetic syndromic" etiologies will have persistent cognitive deficits and will need suitable socioeducative care. Therefore, the transition process in ECSWS will depend mainly on etiology and its related features (epileptic active phase duration, and cognitive and behavioral evolution) and revolve around neuropsychological and social support rather than medical and pharmacologic follow-up.

Problems with diagnosing Conversion Disorder in response to variable and unusual symptoms.

Conversion Disorder (CD) is a diagnosis offered to explain signs and symptoms that do not correspond to recognized medical conditions. Pediatric patients with variable, vague, and multisystem complaints are at increased risk for being diagnosed with CD. Little is known about the impact of such a diagnosis. In making such diagnoses, it is likely that pediatric providers hope to encourage patients to access mental health care, but no basis exists to show that these diagnoses result in such access in any useful way. This article presents the case of a child with Ehlers-Danlos Syndrome, who had been previously (incorrectly) diagnosed with CD and referred for mental health care. It offers commentary based on interviews with other pediatric patients with similar experiences – conducted in collaboration with the Ehlers-Danlos National Foundation. These cases indicate that CD diagnoses can seriously undermine patients’ trust in doctors, and can create such defensiveness that it may interfere with (especially) patients’ abilities to engage with mental health services. Such interference is an important problem, if the diagnosis is accurate. But, in the (more likely) event that it is not accurate, this defensiveness can interfere with both important mental health care and further ongoing necessary medical care.

Patient safety and minimizing risk with insulin administration - role of insulin degludec.

Diabetes is a lifelong condition requiring ongoing medical care and patient self-management. Exogenous insulin therapy is essential in type 1 diabetes and becomes a necessity in patients with longstanding type 2 diabetes who fail to achieve optimal control with lifestyle modification, oral agents, and glucagon-like peptide 1-based therapy. One of the risks that hinders insulin use is hypoglycemia. Optimal insulin therapy should therefore minimize the risk of hypoglycemia while improving glycemic control. Insulin degludec (IDeg) is a novel basal insulin that, following subcutaneous injection, assembles into a depot of soluble multihexamer chains. These subsequently release IDeg monomers that are absorbed at a slow and steady rate into the circulation, with the terminal half-life of IDeg being ~25 hours. Thus, it requires only once-daily dosing unlike other basal insulin preparations that often require twice-daily dosing. Despite its long half-life, once-daily IDeg does not cause accumulation of insulin in the circulation after reaching steady state. IDeg once a day will produce a steady-state profile with a lower peak:trough ratio than other basal insulins. In clinical trials, this profile translates into a lower frequency of nocturnal hypoglycemia compared with insulin glargine, as well as an ability to allow some flexibility in dose timing without compromising efficacy and safety. Indeed, a study that tested the extremes of dosing intervals of 8 and 40 hours showed no detriment in either glycemic control or hypoglycemic frequency versus insulin glargine given at the same time each day. While extreme flexibility in dose timing is not recommended, these findings are reassuring. This may be particularly beneficial to elderly patients, patients with learning difficulties, or others who have to rely on health-care professionals for their daily insulin injections. Further studies are required to confirm whether this might benefit adherence to treatment, reduce long-term hypoglycemia or reduce diabetes-related complications.

Misdiagnosis of Alpha-1 Antitrypsin Phenotype in an Infant with CMV Infection and Liver Failure

A 4-month-old female with a history of neonatal cholestasis was initially evaluated with jaundice, ascites, coagulopathy, and worsening aminotransferase levels. At 5 weeks of age, her parents had noticed ‘‘yellowing’’ of her eyes and skin accompanied by a slightly more pale appearance of her regularly yellow-colored stools. Initially, she was noted to have conjugated hyperbilirubinemia, with total bilirubin 6.5 and conjugated 4.5, aspartate aminotransferase (AST) 163, alanine aminotransferase (ALT) 103, and elevated alkaline phosphatase. Liver ultrasound was normal. A percutaneous liver biopsy, obtained due to her continued unexplained cholestasis, was reported as showing possible large duct obstruction and bile duct proliferation, suggestive of extrahepatic biliary atresia. A subsequent endoscopic retrograde cholangiopancreatography (ERCP) and intraoperative cholangiogram showed no anatomic abnormalities in the intrahepatic and extra hepatic biliary system, inconsistent with the diagnosis of biliary atresia (Fig. 1). During her hospital admission, a serum alpha-1 antitrypsin (A1AT) concentration was 34 mg/dl (normal 100–250 mg/dl), with A1AT MZ phenotype reported. Her conjugated hyperbilirubinemia improved slightly, and her liver numbers stabilized. She was discharged home with a close follow-up outpatient appointment in the pediatric gastroenterology clinic. The remainder of her evaluation for neonatal cholestasis, including an echocardiogram and ophthalmology examination for Alagille’s syndrome, was negative. Infectious studies were negative as well. Hepatosplenomegaly or ascites were not detected by physical examination, with reassuring and age-appropriate biometrics noted. Ongoing outpatient medical care revealed elevated cytomegalovirus (CMV) IgM titers (0.97). Due to persistent cholestasis, a repeat A1AT serum concentration was low level at 32 mg/dl, although a repeat ELISA was now reported as the Z phenotype consistent with the ZZ genotype. Due to conflicting tests of mutant serum A1AT proteins, her liver biopsy was re-analyzed with intrahepatic positive periodic acid–schiff stain (PAS) granules now reported, consistent with the diagnosis of A1AT deficiency (Fig. 2). Concomitantly, CMV viremia was confirmed with an elevated CMV polymerase chain reaction (PCR) assay of 12,800. In the clinic, she exhibited significantly increased abdominal distension and marked ascites. Her bilirubin (total 8.8 mg/dl; conjugated 5.3 mg/dl) and aminotransferases (AST/ALT 500/309 units/l) were elevated. Additionally, a significant coagulopathy was noted with an international normalized ratio (INR) of 2.2 and low fibrinogen of 88. Hyponatremia (119 mg/dl) and metabolic acidosis were also present. She did not have any changes in her mental status, and her venous ammonia concentration was mildly elevated to 68 lmol/l. She was admitted to Lucile Packard Children’s Hospital at Stanford for correction of her electrolyte abnormalities and coagulopathy. She was treated with ganciclovir for CMV viremia. During her first 48 h in the hospital, despite the use of IV phytonadione, her hepatic synthetic liver function deteriorated rapidly, with daily doses of fresh-frozen plasma required to treat her coagulopathy. Due to her P. Arias (&) J. Kerner M. Christofferson W. Berquist K. T. Park Division of Pediatric Gastroenterology, Hepatology, and Nutrition, Lucile Packard Children’s Hospital, Stanford University Medical Center, 750 Welch Road, Suite 116, Palo Alto, CA 94304, USA e-mail: parias@stanford.edu

HIV partner services are associated with timely linkage to HIV medical care

The Centers for Disease Control and Prevention (CDC) recommends that persons diagnosed with HIV receive partner services with health department involvement. CDC describes partner services as not only including partner notification, but also linkage to medical care for HIV-infected persons. The New York City Health Department formed a unit in 2006 to expedite partner services. We examined the contribution of our HIV partner services program in improving timely linkage and retention in HIV medical care.

Facilitators and barriers to twice daily tooth brushing among children with special health care needs

The oral hygiene routines of preschool-age children with special health care needs (CSHCN) were examined to identify caregiver behaviors and beliefs associated with twice daily tooth brushing. Ninety caregivers of CSHCN, ages 23 to 62 months, were interviewed to determine supports or barriers to tooth brushing. Ninety-eight percent of caregivers had begun brushing their child's teeth and half reported brushing twice daily. Caregivers' brushing skills and the availability of child-friendly supplies were associated with twice daily versus less frequent brushing (p = .02). This study adds insight into the challenges of establishing daily oral health care for children who must rely on others for their care. The facilitators and barriers to tooth brushing by caregivers of CSHCN are similar to those noted previously among parents of typically developing children. Efforts to improve all caregivers' oral hygiene skills are needed. For caregivers of CSHCN, oral health teaching opportunities may exist among professionals who provide ongoing medical care, special services and therapies.

Survivorship In AML - Outcomes Of Acute Myelogenous Leukemia (AML) Patients (pts) After Maintaining Complete Remission (CR) For At Least 3 Years

▪ IntroductionApproximately 80% of younger patients and 50% of older patients with newly diagnosed AML achieve CR after induction chemotherapy. The majority of patients who achieve CR eventually relapse, with most relapsing within the first 3 years. Long-term outcomes in pts maintaining 1st CR for at least 3 years (AML survivors) remain largely unknown. The purpose of this study was to investigate long-term outcomes in this subset of pts. MethodsWe performed a chart review of pts with AML treated at our institution who achieved CR for at least 3 years after their initial chemotherapy ± allogeneic stem cell transplant (ASCT) to analyze their long-term outcomes. Results1792 pts with AML were treated between 2000 and 2010 at our institution. 1081 (60%) pts achieved CR. Among them, 266 (25%; 15% of all treated) maintained 1st CR for at least 3 years. The 1st 200 pts are described in this analysis: 33 after ASCT and 167 after chemotherapy (chemo) alone. Median time to CR from initiation of induction chemotherapy was 34 days (range, 19-115) for pts who received ASCT and 28 days (17-104) for chemo only. Characteristics of AML survivor pts at time of diagnosis were as follows: hypertension (HTN) was present in 25% of the pts; cardiac disease in 7%; hypothyroidism in 5%; diabetes (DM) in 7%; depression in 6%; osteoporosis in 2%; chronic obstructive disease (COPD) or asthma in 4%. Median number of medications per pt at baseline was 1 (0-7). Relapses after maintaining CR for ≥3 years (i.e., late relapses) were noted in 12% of the pts: 9% of the pts treated with ASCT and 12% of pts with chemo alone. The median CR duration for those who relapsed was 4 years (3-10) and 4.8 years (3-12), respectively. At relapse, karyotype was different from the karyotype at the time of diagnosis in 47% of the cases: 100% after ASCT and 41% after chemo alone. Mutational status changes at relapse were noted in 31% of the pts. New Flt3 ITD mutations were the most common change, noted in 75% of pts who had a mutational status change. A 2nd complete remission (CR2) was achieved in 52% of pts, including 33% of pts that had received ASCT and 56% of pts treated with chemo alone. The median CR2 duration was 5 months and 10 months (3-30) respectively. The median survival after relapse was 13 months (1 to 42). Four pts with relapsed disease who initially were treated with chemo only underwent ASCT; no patient received a 2nd ASCT. New medical problems that were present at the 3 year mark included: HTN in 10% of pts; cardiac disease in 4%; hypothyroidism in 4%; depression in 4%; renal insufficiency in 3%; pulmonary disease in 2%; DM in 3%; hematological disorders, including anemia, thrombocytopenia, monoclonal gammopathy of undetermined signigicance (MGUS), systemic mastocytosis & Waldenstorm's macroglobulinemia, in 5%. Pulmonary disorders (e.g., bronchiolitis obliterans and COPD) occurred in 6% of pts who underwent ASCT and 2% of pts who treated with chemo alone. Renal insufficiency was noted in 9% of pts who underwent ASCT and in 2% of pts treated with chemo alone. The median number of medication per pt 3 yrs from initial CR was 3 (range, 0-11). New medical problems that developed at time of last follow up included: HTN in 12% of pts, cardiac disease in 6%, hypothyroidism in 5%, depression in 7%, renal insufficiency in 4%, pulmonary disease in 3%, DM in 5%, hematological disorders in 6%. Cardiac problems, including the development of coronary artery disease, myocardial infarction, congestive heart failure and arrhythmias were noted in 3% of pts who underwent ASCT and in 6% of pts treated with chemo alone. The median number of medications per pt at last follow up was 3 (0-14). Second malignancies occurred in 10% of pts. The most common 2nd malignancies were colorectal carcinoma, breast cancer, prostate cancer and lymphoma, each occurring in 2% of pts. At median follow up of 4.2 years (3.2-10.2) and 4.9 years (3.2-12) respectively, 94% and 80% of pts are alive. In descending order, the most common causes of death included AML relapse, second malignancy and myocardial infarction. ConclusionAML pts who achieved CR for at least 3 years have a low incidence of late relapses. New medical problems including heart disease and second malignancies may occur but most pts are still currently alive. AML pts who maintain 1st CR for at least 3 years require ongoing medical care and long-term surveillance. Disclosures:No relevant conflicts of interest to declare.

Allergic Rhinoconjunctivitis in the Australian Population: Burden of Disease and Attitudes to Intranasal Corticosteroid Treatment

Allergic rhinoconjunctivitis (AR/C) is a global health problem causing significant morbidity and has a major impact on quality of life (QOL) and health expenditure. Despite the widespread prevalence, the overall health impact of AR/C may be underappreciated. The results of a survey designed to capture the burden of allergic rhinitis within the Asia-Pacific region have been published recently. Of particular note when evaluating treatment in this region was the fact that despite the value of intranasal corticosteroid (INCS) use, only a small percentage of patients used them. Whether this same trend is present within the population of Australian sufferers is unknown. This study examines the burden of AR/C and explores use of, and attitudes, to INCS sprays in the Australian population. Three hundred three completed interviews from adults and children who had physician-diagnosed AR/C and who were symptomatic or had received treatment in the previous 12 months were analyzed for QOL measures and attitudes to INCS use. Most patients surveyed had received their diagnosis from a general practitioner (GP), and in most cases, a GP provided the majority of ongoing medical care. Only 8% of respondents had consulted a relevant specialist. Diagnostic tests had not been performed in 55% of respondents. The major symptoms causing most distress were nasal congestion and ocular symptoms. The burden of AR/C was considerable; 42% described significant work or school interference because of symptoms, one-third reporting moderate-to-extreme interference with sleep. Despite the significant impact on QOL reported by this sample, 17% had never used INCS and 27% had not used them in the previous 12 months. Respondents' knowledge about INCSs was poor. AR/C is a common disease associated with significant morbidity and impairment of QOL. Improvement in diagnosis, management, and patient education is needed.

The Cost-Effectiveness of Transcatheter Aortic Valve Replacement for Nonsurgical Candidates

> Prediction is very difficult, especially if it’s about the future > > Neils Bohr Life expectancy in the United States has steadily increased in the past century, from just <60 years in 1930, to just <70 years in 1960, and to just <80 years in 2010. Progress, however, has its price. The numbers of elderly and very elderly members of the population in the United States and other developed nations are increasing rapidly along with their age-related health problems. At the same time, healthcare spending has risen dramatically. As new medical treatments have become more expensive to discover and produce, and the incremental benefits those treatments provide have become smaller, there is a growing perception that the return on continued increases in healthcare spending may be diminishing.1 Article see p 419 Into this milieu enters transcatheter aortic valve replacement (TAVR), a therapy that is currently revolutionizing the approach to managing aortic stenosis (AS)—a condition, mainly, of the elderly. Cohort B of the Placement of Aortic Transcatheter Valves (PARTNER) trial,2 along with a number of nonrandomized studies, has shown that TAVR can greatly improve health outcomes in the important minority of patients with severe AS who are felt to be at prohibitive risk for surgical intervention. In this setting, TAVR reduced all-cause mortality by absolute margins of 20% and 25% at 1 and 2 years, respectively, while substantially improving functional status and quality of life, compared with medical management.2–4 Although the clinical benefits of TAVR for the inoperable population are unquestionably large, so too are the financial costs, not only of the treatment itself but also for the ongoing medical care of patients who are, on average, octogenarians with complex medical problems. Consequently, payers in varied settings have needed to carefully examine the affordability and value of TAVR …

Cochleaimplantatversorgung bei Kindern und Jugendlichen

Cochlear implants (CI) have become standard in the treatment of prelingual, postlingual and perilingual deafness and hearing loss in children. Bilateral implants are considered standard for bilaterally affected children. The benefits for speech and language development, as well as speech intelligibility brought by CI-enabled hearing are greatest if these are received as soon after diagnosis as possible. Continued improvements in preoperative diagnostics, electrode design, speech coding strategies and surgical techniques, have broadened the CI applications spectrum. Nowadays--with the exception of cochlear- and cochlear nerve aplasia--almost all malformations are manageable with CIs. New indications concern partial and unilateral deafness. Treatment with CIs requires exceptional team work. In addition to ongoing medical care of the children, the involvement of parents and relatives in the cooperation between surgeons, audiologists, teachers and specialist centers is important for successful rehabilitation.

Editorial

Much has been written in recent months about the challenges at the hospital’s front door; emergency departments and acute medical units have found themselves in the spotlight, while politicians and clinical leaders have debated where the causes for this crisis lie. As summer progresses and we continue to search for solutions, it is likely that some of the focus will shift from the emergency department to the processes of care which take place after a patient has been admitted. The Royal College of Physicians’ long awaited Future Hospital Commission report will be published later in the year; a key theme in this document is going to be the importance of continuity of care for patients in hospitals, ensuring the minimum numbers of patient transfers both within the hospital and between consultants. Inevitably this will open a key debate over the role of the ‘generalist’ in hospitals of the future. The last decade has seen a steady drift away from generalism, with increasing numbers of hospital clinicians retreating into their speciality enclaves, and withdrawing from the acute medical take. For some patients speciality-led care has been shown to be highly effective; however there remain significant numbers of patients whose problems cannot be neatly packaged into a single organ category. Acute physicians have taken on the management of this group of patients within the acute medical unit (AMU), but who should provide ongoing general medical care for patients who are transferred out of the Unit? A recent survey of members of the Society for Acute Medicine (SAM) has confirmed that the overwhelming majority of existing acute medicine consultants are accredited in General Internal Medicine (GIM), while a similar proportion of current acute medicine trainees expect to attain a certificate of completed training in GIM. Provided that hospitals can secure adequate numbers of new consultant appointments, acute physicians will be ideally placed to provide continuity of care for this patient group. The survey, which will soon be published on the SAM website, also indicates that most acute physicians would be happy to provide this service, as long as it was appropriately resourced and supported; furthermore a substantial proportion viewed a combination of GIM and acute medicine as their preferred model for their future job plan. Inevitably, staffing levels will be key to whether acute physicians can branch out of the AMU. There appears to be no lack of enthusiasm amongst hospitals to expand numbers of acute physicians, with vacancies being advertised on a weekly basis across the UK. However a shortage of doctors completing acute medicine training in 2013, due in part to curriculum changes in 2009, means that many of these posts are remaining unfilled. It is clear that much work clearly remains to be done on our acute medical units to ensure that we achieve the high standards which SAM has published. By the time this edition is published, data for the second Society for Acute Medicine Benchmarking Audit (’SAMBA 2013’) will already have been collected. Results of last year’s baseline audit are presented in this edition, and highlight a number of areas in which acute medical units needed to improve. Delays in the initial assessment of patients and consultant review are likely to have reflected the well recognised, and ongoing imbalance between demand and workforce; however it is encouraging to note that almost all patients underwent appropriate observations to enable calculation of an early warning score. Access to investigations for pulmonary embolism and upper gastrointestinal bleeding also appeared to be constrained to a greater degree than CT scan for suspected stroke, which may reflect the relative priorities often afforded to these conditions. It should be noted that the data were collected on a Wednesday – weekend access to investigations remains an even greater challenge in many centres. Those who are regular users of Twitter and other social media will no doubt be aware of their increasing range of medical uses. In the third of a triad of articles which this journal has published on sepsis, Luke McMenemin and colleagues have highlighted how Twitter might be used in future to help disseminate and identify innovative medical solutions to common clinical challenges. Delays in the publication of traditional written media mean that broad implementation sometimes lags behind the innovation; as a consequence, there may be a tendency to ‘reinvent the wheel’ rather than learning from others’ experience. Twitter clearly has its limitations – the 140 character limit is a tough ask for even the most succinct of writers – but with an increasing numbers of users, perhaps the time has come for more acute physicians to take the plunge!

Developing a cultural and socioecological patient-centered survivorship care plan template for African American survivors.

40 Background: Cancer and its treatments bring added health and life challenges. Cancer survivors require ongoing surveillance and medical care. To facilitate best practice in follow-up care, the Institute of Medicine, the American Society of Clinical Oncology and advocacy organizations advise that cancer survivors be provided with treatment summaries and Survivorship Care Plan (SCP). African-American breast cancer survivors (AABCS) have poorer outcomes characterized by greater morbidity and mortality, hence warranting their careful surveillance and follow-up medical care. SCP investigations are urgently needed to improve follow-up care and cancer outcomes in AABCS. Methods: The study embraced a community-based participatory research framework, building upon a series of research projects conducted by the African American Cancer Coalition, a partnership of scientific researchers and community-based advocates. Three informative focus groups were conducted with AABCS (N=25) and advocates (N=3) to obtain input on cultural and socio-ecological SCP contents to increase patient responsiveness. Results: AABCS believed that increased mortality may be due to comorbidities and inadequate surveillance and follow-up care. Participants recommended that the SCP attend to and document all comorbidities and medications; allow for participation of primary care providers; referrals for providers especially surgeons who are familiar with treating AABCS to the reduce keloid, and health advisories on nutrition, exercise and stress management. Quality-of-life related components and community referrals should be included because they are important for overall health. AABCS noted the importance of spirituality in life, and the disproportionately high levels of socioecological stress in the community. Conclusions: Participants infused cultural and socioecologic relevance towards the development of a patient centered SCP template to increase acceptability and utilization among AABCS. Participants underscored that developing the SCP responsive to AABCS and facilitating adherence to SCP recommendations, are areas warranting increased intervention and research.

Assessing diabetes-related quality of life of youth with type 1 diabetes in routine clinical care: the MIND Youth Questionnaire (MY-Q)

It is recommended to assess health-related quality of life (HRQoL) in teenagers with diabetes as part of their ongoing medical care. Here, we describe the development and psychometric evaluation of the Monitoring Individual Needs in Diabetes Youth Questionnaire (MY-Q), a multi-dimensional self-report HRQoL questionnaire designed for use in pediatric diabetes care. In expert meetings, characteristics and domains of interest were defined. Existing questionnaires were reviewed, topics selected, and new items added, resulting in the 36-item MY-Q. To test face validity, we interviewed 22 teenagers. In addition, 84 teenagers with type 1 diabetes (age 10-18 yr) completed the MY-Q and Pediatric Quality of Life Inventory (PedsQL) generic and diabetes-modules to examine psychometric properties. Hemoglobin A1c (HbA1c) values were obtained by chart audit. The MY-Q consists of seven subscales (social impact, parents, diabetes control perceptions, responsibility, worries, treatment satisfaction, and body image and eating behavior) as well as general HRQoL and emotional well-being. Cronbach's alpha for the total scale was 0.80. Strong correlations between MY-Q total and PedsQL generic and diabetes-module scores (r = 0.58 and r = 0.71, p < 0.001) confirmed concurrent validity. Higher HbA1c was associated with lower diabetes control perceptions (r = -0.35, p = 0.001), worries (r = -0.24, p = 0.029), and body image and eating behavior (r = -0.26, p = 0.019) scores. Younger age was associated with higher diabetes control perceptions (r = -0.26, p = 0.020) and body image and eating behavior (r = -0.23, p = .038), and lower responsibility (r = 0.25, p = 0.027) scores. The MY-Q is the first HRQoL questionnaire designed for use in clinical care. It has acceptable measurement properties and seems suitable for implementation in routine care of teenagers with diabetes.

Prospects for Treatment of Latent HIV

Recent advances in antiretroviral therapy (ART) have drastically improved the quality of life for people with HIV infection. However, owing to the persistence of latent HIV in the presence of therapy, patients must remain on therapy indefinitely. Currently, the solution to the HIV pandemic rests on the prevention of new infections and many decades of ART for the steadily expanding number of people infected worldwide. ART is costly, requires ongoing medical care, and can have side effects, thereby preventing its universal availability. Therefore, to escape the ironic burdens of therapy, efforts have begun to develop treatments for latent HIV infection. Current approaches propose either complete eradication of infection or induction of a state of stringent control over viral replication without ART. This review will discuss these strategies in detail and their potential for clinical development.

Complicaciones macrovasculares del paciente diabético

Diabetes mellitus (DM) is a chronic illness that requires ongoing medical care and multifactorial interventions beyond the glycemic control in order to reduce the risk of long-term complications.Cardiovascular disease (CVD) is the major cause of morbidity and mortality in diabetic patients. Around 80% of mortality in diabetic patients is due to macrovascular disease complications. It is estimated that for each increase of 1% of A1C test, the cardiovascular risk (CVR) increases an average of18%.Current epidemiological studies have failed to demonstrate the benefit of improving glycemic control to reduce macrovascular complications. Therefore to prevent the macrovascular disease in type 2, diabetes must be an early and multifactorial approach, including all cardiovascular risk factors (CVRF): glycemic control, dyslipidemia, blood pressure, obesity and tobacco use, identifying control objectives according to the characteristics of each patient.