Single Clinic Population Research Articles

Comparison of the 4-Digit Code, Canadian 2015, Australian 2016 and Hoyme 2016 fetal alcohol spectrum disorder diagnostic guidelines.

As clinicians strive to achieve consensus worldwide on how best to diagnose fetal alcohol spectrum disorders (FASD), the most recent FASD diagnostic systems show convergence and divergence. Applying these systems to a single clinical population illustrates the contrasts between them, but validation studies are ultimately required to identify the best system. The 4-Digit-Code, Hoyme 2016, Canadian 2015 and Australian 2016 FASD diagnostic systems were applied to 1,392 patient records evaluated for FASD at the University of Washington. The diagnostic criteria and tools, the prevalence and concordance of diagnostic outcomes, and validity measures were compared between the systems. The proportion diagnosed with fetal alcohol syndrome (FAS) and FASD varied significantly (4-Digit-Code 2.1%, ≤79%; Hoyme 6.4%, 44%, Australian 1.8%, 29%; Canadian 1.8%, 16%). Eighty-two percent were diagnosed FASD by at least one system; only 11% by all four systems. Key factors contributing to discordance include: requiring high alcohol exposure; excluding growth deficiency; relaxing the facial criteria; requiring brain criteria that prevent diagnosis of infants/toddlers; and excluding moderate dysfunction from the spectrum. Primate research confirms moderate dysfunction (1-2 domains ≤-2 standard deviations) is the most prevalent outcome caused by PAE (FAS 5%, severe dysfunction 31%, moderate dysfunction 59%). Only the 4-Digit-Code replicated this diagnostic pattern. The needs of individuals with FASD are best met when diagnostic systems provide accurate, validated diagnoses across the lifespan, the full spectrum of outcome, the full continuum of alcohol exposure; and utilize diagnostic nomenclature that accurately reflects the association between outcome and alcohol exposure.

Comparison of the FASD 4-Digit Code and Hoyme et al. 2016 FASD diagnostic guidelines.

Background:As clinicians strive to achieve consensus worldwide on how best to diagnose fetal alcohol spectrum disorders (FASD), the most recent FASD diagnosstic systems exhibit convergence and divergence. Applying these systems to a single clinical population illustrates contrasts between them, but validation studies are ultimately required to identify the best system. Currently, only the 4-Digit Code has published comprehensive validation studies.Methods:The 4-Digit Code and Hoyme 2016 FASD systems were applied to the records of 1,392 patients evaluated for FASD at the University of Washington to: 1) Compare the diagnostic criteria and tools used by each system, 2) Compare the prevalence and concordance of diagnostic outcomes and assess measures of validity.Results:Only 38% of patients received concordant diagnoses. The Hoyme criteria rendered half as many diagnoses under the umbrella of FASD (n=558) as the 4-Digit Code (n=1,092) and diagnosed a much higher proportion (53%) as fetal alcohol syndrome/partial fetal alcohol syndrome (FAS/PFAS) than the 4-Digit Code (7%). Key Hoyme factors contributing to discordance included relaxation of facial criteria (40% had the Hoyme FAS face, including patients with confirmed absence of alcohol exposure); setting alcohol exposure thresholds prevented 1/3 with confirmed exposure from receiving FAS/FASD diagnoses; and setting minimum age limits for Alcohol-Related Neurodevelopmental Disorder prevented 79% of alcohol-exposed infants with neurodevelopmental impairment a FASD diagnosis. The Hoyme Lip/Philtrum Guides differ substantively from the 4-Digit Lip-Philtrum Guides and thus are not valid for use with the 4-Digit Code.Conclusions:All FASD diagnostic systems need to publish comprehensive validation studies to identify which is the most accurate, reproducible, and medically valid.

Serodiscordance and Disclosure Among HIV-Positive Pregnant Women in the Southwestern United States

The prevalence of HIV-positive pregnant women in relationships with HIV-negative men in the United States is unclear. The purpose of this study was to calculate the prevalence of HIV-positive pregnant women with a serodiscordant (HIV-negative) partner within a single clinic population, assess disclosure of their HIV status, and examine factors associated with disclosure. All HIV-positive pregnant women who received prenatal care at the Harris County Hospital District Women's Program at Northwest Health Center in Houston TX between 1/1/2006 and 4/1/2011 were identified. Data were obtained from electronic medical records. Prevalence of serodiscordance and disclosure was calculated, and predictors of disclosure were evaluated. We identified 212 HIV-positive pregnant women. About 40% had a serodiscordant partner, and 34% had a partner with an unknown HIV status. Disclosure occurred in over 90% of women with a serodiscordant partner and in 68% of women with partners whose HIV status was unknown. Among pregnant women who knew their HIV status prior to the current pregnancy and had a serodiscordant partner, 92% reported disclosing their status prior to conception. Our data indicated that serodiscordant relationships are common in our clinic population. Suboptimal disclosure rates were observed, especially among women who have a partner with an unknown HIV status. Further research is needed to evaluate the prevalence of serodiscordance and disclosure in other United States populations.

Identifying clinical course patterns in SMS data using cluster analysis

BackgroundRecently, there has been interest in using the short message service (SMS or text messaging), to gather frequent information on the clinical course of individual patients. One possible role for identifying clinical course patterns is to assist in exploring clinically important subgroups in the outcomes of research studies. Two previous studies have investigated detailed clinical course patterns in SMS data obtained from people seeking care for low back pain. One used a visual analysis approach and the other performed a cluster analysis of SMS data that had first been transformed by spline analysis. However, cluster analysis of SMS data in its original untransformed form may be simpler and offer other advantages. Therefore, the aim of this study was to determine whether cluster analysis could be used for identifying clinical course patterns distinct from the pattern of the whole group, by including all SMS time points in their original form. It was a ‘proof of concept’ study to explore the potential, clinical relevance, strengths and weakness of such an approach.MethodsThis was a secondary analysis of longitudinal SMS data collected in two randomised controlled trials conducted simultaneously from a single clinical population (n = 322). Fortnightly SMS data collected over a year on ‘days of problematic low back pain’ and on ‘days of sick leave’ were analysed using Two-Step (probabilistic) Cluster Analysis.ResultsClinical course patterns were identified that were clinically interpretable and different from those of the whole group. Similar patterns were obtained when the number of SMS time points was reduced to monthly. The advantages and disadvantages of this method were contrasted to that of first transforming SMS data by spline analysis.ConclusionsThis study showed that clinical course patterns can be identified by cluster analysis using all SMS time points as cluster variables. This method is simple, intuitive and does not require a high level of statistical skill. However, there are alternative ways of managing SMS data and many different methods of cluster analysis. More research is needed, especially head-to-head studies, to identify which technique is best to use under what circumstances.

Therapeutic songwriting in music therapy, Part II: Comparing the literature with practice across diverse clinical populations

A growing body of literature on therapeutic songwriting with diverse clinical populations indicates that clinicians employ a wide range of approaches. The purpose of this research was to establish trends in the clinical practice of songwriting as implemented across a range of clinical populations. Responses to a 21-question online survey were obtained from 419 professional music therapists practicing in 29 countries which focused on approaches to songwriting within their practice with a single clinical population. Results suggest that, in general, the literature provides good representation for what is occurring in clinical practice. Generally, songs were composed with individual clients in single sessions, with lyrics created prior to the music. Clinicians had a significant role in creating the music with improvised and pre-determined musical structures being equally employed. Chi-square or comparable Exact tests (Fisher–Freeman–Halton) were applied to the data and significant associations were found according to clinical populations, particularly with respect the number of sessions required to complete a song, approaches to composing lyrics and music, the context with which songwriting was employed, and the types of allied health professionals involved in the songwriting interventions. There is a distinct absence of songwriting literature as applied in developmental disability, autism spectrum disorder, and aged care contexts so the resulting practice trends offered here contribute to the increasing body of knowledge about songwriting practices.

Therapeutic Songwriting in Music Therapy

Songwriting as a therapeutic intervention has received increasing attention in the field of music therapy over the past decade however much of the publications focus on clinical outcomes rather than methods of practice. This paper, part of a two-part research report into trends in the clinical practice of songwriting, aims to describe the most frequently employed goal areas across a range of clinical populations and compare these findings with the published literature. Responses to a 21-question online survey were obtained from 477 professional music therapists practicing in 29 countries which focused on approaches to songwriting within their practice with a single clinical population. Chi–square or comparable Exact tests (Fisher-Freeman-Halton) were applied to the data and significant associations were found according to different clinical populations particularly with respect to the aims of songwriting in clinical practice and the frequency with which songwriting is employed in practice. The data highlights that songwriting is frequently employed in developmental disability and ASD practice, with reports on songwriting with these diagnostic groups being underrepresented in the music therapy literature. The survey identified that the most frequently endorsed goal areas align with the literature base and included a) experiencing mastery, develop self-confidence, enhance self esteem; b) choice and decision making; c) develop a sense of self; d) externalising thoughts, fantasies, and emotions; e) telling the client's story; and f) gaining insight or clarifying thoughts and feelings.

Variability in Catheter Microwave Sterilization Techniques in a Single Clinic Population

We designed a survey to assess the microwave sterilization technique practiced by patients at our clinic who perform clean intermittent catheterization. A 23-question survey addressing urinary catheter use and home sterilization techniques was mailed to 129 patients. A followup survey was mailed to 47 respondents who reported using a microwave oven to sterilize the catheters to assess the microwave technique further. Of the 129 initial surveys 84 (64%) were returned, while 40 (85%) of the 47 followup questionnaires on microwave sterilization were returned. All patients surveyed have used clean intermittent catheterization for at least 1 year and 75% have used it more than 5 years. Of the respondents 80% perform clean intermittent catheterization 4 to 5 times daily, although sterilization frequency varies from daily to less than once weekly. Of the respondents 71% reported no difficulty with microwave sterilization, although 31 (63%) reported a history of catheter melting during microwaving. Of the respondents 35% reported using a rotation table, all used a heat sink containing 1/2 to 4 cups of water, 39% used 500 to 1,000 W., 37% used greater than 1,000 W., 73% set the microwave for 6 minutes, others set it for 3 to 30 minutes and 98% used a power setting described as high, full, 10 or 100%. Significant variation exists in the cleaning and sterilizing techniques used by our patients, although they were given uniform written and verbal instructions. It is unclear from the data in the literature how this variation affects sterilization.

Variability in Catheter Microwave Sterilization Techniques in a Single Clinic Population

Variability in Catheter Microwave Sterilization Techniques in a Single Clinic Population

The Association of Pauciarticular Juvenile Arthritis and Myasthenia Gravis

We encountered two children with fluorescent antinuclear antibody-positive pauciarticular juvenile arthritis who later developed myasthenia gravis. Acetylcholine receptor binding, blocking, and modulating antibodies, retrospectively tested on frozen serum, yielded negative results before the onset of myasthenic symptoms but all yielded strongly positive results coincident with the onset of weakness. In both children, myasthenia gravis responded to thymectomy, and one child had a beneficial response to plasmapheresis. Although, to our knowledge, only two patients with juvenile arthritis and myasthenia gravis have been described in the past, the presence of two additional children with both diseases in a single clinic population suggests that the association may be more prevalent than previously suspected.

An illness severity score for multiple sclerosis.

A single score is desirable for evaluating progression in clinical trials of MS therapy. Our objective was to develop a more sensitive scoring that would reflect clinical assessment of relative severity of disability. An Illness Severity Score (ISS) was developed as a sum of weights corresponding to ratings of Kurtzke Disability Status Scale and Functional Systems Scales and phase of illness. Weights were computed from clinical comparison of pairs of patients. The score was standardized to have mean 50 and standard deviation 10 in a single clinic population. Score reproducibility (correlation = 0.93) was evaluated by two independent scorings of several patients. The ISS was satisfactory as the primary assessment in a small-scale clinical trial.

The Pneumococcal Vaccine

A new polyvalent pneumococcal vaccine (Pneumovax) was released in February 1978. In an effort to chronicle the dissemination of the vaccine to high-risk patients, we prospectively followed up a single clinic population and conducted a telephone survey of three neighborhood health centers, two private practices, and a university hematology clinic. Three months after notification of the vaccine arrival, physicians in the prospectively chronicled clinic had immunized six of 12 patients with sickle cell disease, five of 80 patients with chronic obstructive pulmonary disease, three of 225 patients with diabetes, and three of 45 patients older than 80 years. Immunization policy in the other clinics surveyed varied greatly. As an attempt to curb low-prevalence, high-severity illness in a small target population, the pneumococcal vaccine presents a new set of problems in the systematic implementation of an immunization.