A qualitative study of social connectedness and its relationship to community health programs in rural Chiapas, Mexico.

BACKGROUND: Social connectedness is an important predictor of health outcomes and plays a large role in the physical and mental health of an individual and a community. The presence of a functioning health clinic with a community health worker program may indirectly improve health outcomes by increasing the social connectedness of the community in addition to providing direct patient care. This study examines the social connectedness of the inhabitants of three Mexican towns within the catchment area of a healthcare Non-Government Organization (NGO) through a qualitative analysis. METHODS: Willing participants were videotaped answering open-ended questions about their community and use of healthcare resources. Interviews were then coded for relevant themes and analyzed for content relating to social connectedness, social isolation, and health. RESULTS: Respondents reported that having a functioning community clinic had improved their lives significantly through direct provision of care and by reducing the financial burden of travel to seek medical care elsewhere. Respondents from each town differed slightly in their primary means of social support. One town relied more heavily on organized groups (i.e., religious groups) for their support system. Social isolation was reported most frequently by housewives who felt isolated in the home and by respondents that had to deal with personal illness. Respondents that self-identified as Community Health Workers (CHWs) in their respective communities acknowledged that their roles bestowed physical and psychological health benefits upon themselves and their families. CONCLUSIONS: Overall, a long-term health intervention may directly impact the relative social isolation and social connectedness of a community's inhabitants. The social connectedness of the community is an important quality that must be considered when evaluating and planning health interventions.

Consensus-Based Care Recommendations for Pulmonologists Treating Adults with Myotonic Dystrophy Type 1.

PURPOSE OF REVIEW: Myotonic dystrophy type 1 (DM1) is a severe, progressive genetic disease that affects approximately 1 in 2,500 individuals globally [Ashizawa et al.: Neurol Clin Pract 2018;8(6):507-20]. In patients with DM1, respiratory muscle weakness frequently evolves, leading to respiratory failure as the main cause of death in this patient population, followed by cardiac complications [de Die-Smulders et al.: Brain 1998;121(Pt 8):1557-63], [Mathieu et al.: Neurology 1999;52(8):1658-62], [Groh et al.: Muscle Nerve 2011;43(5):648-51]. This paper provides a more detailed outline on the diagnostic and management protocols, which can guide pulmonologists who may not have experience with DM1 or who are not part of a neuromuscular multidisciplinary clinic. A group of neuromuscular experts in DM1 including pulmonologists, respiratory physiotherapists and sleep specialists discussed respiratory testing and management at baseline and during follow-up visits, based on their clinical experience with patients with DM1. The details are presented in this report. RECENT FINDINGS: Myotonic recruited 66 international clinicians experienced in the treatment of people living with DM1 to develop and publish consensus-based care recommendations targeting all body systems affected by this disease [Ashizawa et al.: Neurol Clin Pract. 2018;8(6):507-20]. Myotonic then worked with 12 international respiratory therapists, pulmonologists and neurologists with long-standing experience in DM respiratory care to develop consensus-based care recommendations for pulmonologists using a methodology called the Single Text Procedure. This process generated a 7-page document that provides detailed respiratory care recommendations for the management of patients living with DM1. This consensus is completely based on expert opinion and not backed up by empirical evidence due to limited clinical care data available for respiratory care management in DM patients. Nevertheless, we believe it is of relevance for professionals treating adults with myotonic dystrophy because it addresses practical issues related to respiratory management and care, which have been adapted to meet the specific issues in patients with DM1. SUMMARY: The resulting recommendations are intended to improve respiratory care for the most vulnerable of DM1 patients and lower the risk of untoward respiratory complications and mortality by providing pulmonologist who are less experienced with DM1 with practical indications on which tests and when to perform them, adapting the general respiratory knowledge to specific issues related to this multiorgan disease.

Clinical Care Recommendations for Cardiologists Treating Adults With Myotonic Dystrophy.

Myotonic dystrophy is an inherited systemic disorder affecting skeletal muscle and the heart. Genetic testing for myotonic dystrophy is diagnostic and identifies those at risk for cardiac complications. The 2 major genetic forms of myotonic dystrophy, type 1 and type 2, differ in genetic etiology yet share clinical features. The cardiac management of myotonic dystrophy should include surveillance for arrhythmias and left ventricular dysfunction, both of which occur in progressive manner and contribute to morbidity and mortality. To promote the development of care guidelines for myotonic dystrophy, the Myotonic Foundation solicited the input of care experts and organized the drafting of these recommendations. As a rare disorder, large scale clinical trial data to guide the management of myotonic dystrophy are largely lacking. The following recommendations represent expert consensus opinion from those with experience in the management of myotonic dystrophy, in part supported by literature-based evidence where available.

Consensus-based care recommendations for congenital and childhood-onset myotonic dystrophy type 1.

PURPOSE OF REVIEW: Myotonic dystrophy type 1 is a multisystemic disorder caused by a noncoding triplet repeat. The age of onset is variable across the lifespan, but in its most severe form, the symptoms appear at birth (congenital myotonic dystrophy) or in the pediatric age range (childhood-onset myotonic dystrophy). These children have a range of disabilities that reduce the lifespan and cause significant morbidity. Currently, there are no agreed upon recommendations for caring for these children. RECENT FINDINGS: The Myotonic Dystrophy Foundation recruited 11 international clinicians who are experienced with congenital and childhood-onset myotonic dystrophy to create consensus-based care recommendations. The experts used a 2-step methodology using elements of the single text procedure and nominal group technique. Completion of this process has led to the development of clinical care recommendations for this population. SUMMARY: Children with myotonic dystrophy often require monitoring and interventions to improve the lifespan and quality of life. The resulting recommendations are intended to standardize and improve the care of children with myotonic dystrophy.

Obstructive uropathy from complete bladder and bilateral ureteral incarceration within an inguinal hernia.

A 59-year-old man with a medical history of hypertension, gout and obesity presented to the hospital with a chief complaint of worsening scrotal oedema. The patient endorsed associated symptoms of decreased force of stream on urination, stranguria and hesitancy with slight dysuria. Physical exam showed an effaced umbilicus and phallus with a hidden scrotum estimated to be 30×20×30 cm in size. Imaging and lab findings led to a diagnosis of total bladder herniation within an incarcerated right inguinal hernia. Surgical repair of the inguinal hernia and replacement of the bladder and ureters led to a resolution of urinary symptoms with no evidence of vesicoureteral reflux or urinary retention.

Knowledge and perceptions of Zika virus among reproductive-aged women after public announcement of local mosquito-borne transmission.

AIM: This study was conducted to ascertain the knowledge and perceptions of the Zika virus among reproductive-aged women living in the first affected area of the United States with local mosquito-borne transmission. METHODS: Reproductive-aged women were surveyed during the four weeks immediately following the announcement of local Zika virus transmission. The survey evaluated the participant's knowledge of Zika pathogenesis and transmission, sequelae of infection, epidemiology and public health information. RESULTS: Fifty-nine women (age range 18-45) completed the survey. Most patients (n = 53, 89.8%) had received information about the Zika virus from the media rather than clinicians. In 93% of the questions, a high level of knowledge was demonstrated by the participants. Personal concern about becoming infected with the Zika virus was significantly higher in those considering pregnancy (n = 13, 86.7% vs n = 21, 47.7%; P = 0.01). CONCLUSION: In the weeks following recognized local transmission of the Zika virus in the continental United States, reproductive-aged women had a high level of knowledge of the Zika virus, but those considering pregnancy harbored the greatest concern of personal risk of infection.

Quality of life as an outcome of opioid use disorder treatment: A systematic review.

BACKGROUND AND AIMS: The recent opioid epidemic has prompted renewed interest in opioid use disorder treatment, but there is little evidence regarding health-related quality-of-life (HRQoL) outcomes in treatment programs. Measuring HRQoL represents an opportunity to consider outcomes of opioid use disorder treatment that are more patient-centered and more relevant to overall health than abstinence alone. We conducted a systematic literature review to explore the extent to which the collection of HRQoL by opioid treatment programs is documented in the treatment program literature. MATERIALS AND METHODS: We searched PubMed, Embase PsycINFO and Web of Science for papers published between 1965 and 2015 that reported HRQoL outcome measures from substance abuse treatment programs. RESULTS: Of the 3014 unduplicated articles initially identified for screening, 99 articles met criteria for further review. Of those articles, 7 were unavailable in English; therefore 92 articles were reviewed. Of these articles, 44 included any quality-of-life measure, 17 of which included validated HRQoL measures, and 10 supported derivation of quality-adjusted life year utility weights. The most frequently used validated measure was the Addiction Severity Index (ASI). Non-U.S. and more recent studies were more likely to include a measure of HRQoL. CONCLUSIONS: HRQoL measures are rarely used as outcomes in opioid treatment programs. The field should incorporate HRQoL measures as standard practice, especially measures that can be used to derive utility weights, such as the SF-12 or EQ-5D. These instruments provide policy makers with evidence on the impact of programs on patients' lives and with data to quantify the value of investing in opioid use disorder treatments.