A Latent Profile Analysis of Suicidal and Self-Injurious Behavior, Other Dysregulated Behaviors, and Borderline Personality Disorder Symptoms

Those with borderline personality disorder (BPD) exhibit many dysregulated behaviors, such as non-suicidal self-injury (NSSI), dysregulated eating, and substance use. The purpose of this study was to examine BPD symptoms and levels of these dysregulated behaviors with latent profile analysis, which allows for the empirical investigation of distinct behaviors patterns among those with BPD. A non-clinical student sample was screened for elevated BPD symptoms (N=128, age =18.75 years [SD=1.05], 76.8% female) and used in mixture modeling analyses. Results supported five profiles from the sample, primarily distinguished by suicidality and NSSI: a low BPD-low dysregulated behavior profile, a low BPD profile with elevated suicidality, a low BPD profile with elevated NSSI, a high-BPD with low NSSI and somewhat elevated suicidality, and a high-BPD profile with high NSSI and low suicidality. Follow-up analyses indicated that other dysregulated behaviors did little to distinguish between those with high BPD symptoms. There were also important difference in motivational functions for NSSI between two of the profiles: those with high or low BPD symptoms who self-injured frequently. These findings are relevant to the ongoing debate about the existence of a NSSI disorder distinct from BPD

What is acceptance, and how could it affect health outcomes for people receiving renal dialysis?

Renal dialysis is a life-saving treatment for end-stage renal disease (ESRD) but is burdensome, invasive and expensive. Patients’ experiences of dialysis and the outcomes of their treatment could potentially be improved by focusing on ‘acceptance’. However, the concept of acceptance has been used in different ways. This article examines ways that acceptance has been conceptualised in research on chronic illness generally and ESRD specifically, and makes proposals for research to understand better what acceptance means for people with ESRD. The aim is to assist the development of acceptance-related measures and interventions to support people with ESRD.N/

The posited effect of positive affect in anorexia nervosa: Advocating for a forgotten piece of a puzzling disease

Anorexia nervosa (AN) is a complex and life‐threatening eating disorder. Current models of AN onset and maintenance have largely focused on the role of negative affect, while fewer models have described the role of positive affect (PA). Given that these theoretical models have informed current treatment approaches, and that treatment remains minimally effective for adults with AN, we advocate that targeting PA is one avenue for advancing maintenance models and by extension, treatment. We specifically propose that AN may arise and be chronically and pervasively maintained as a function of dysregulated PA in response to weight loss and weight loss behaviors (e.g., restriction, excessive exercise), to a degree that is not accounted for in existing models of AN. We present evidence from multiple domains, including biological, behavioral, and self‐report, supporting the hypothesis that PA dysregulation in AN contributes to the maintenance of the disorder. We conclude with several specific avenues for treatment development research as well as a call for future work elucidating the biological correlates of PA.Peer Reviewedhttps://deepblue.lib.umich.edu/bitstream/2027.42/151291/1/eat23147.pdfhttps://deepblue.lib.umich.edu/bitstream/2027.42/151291/2/eat23147_am.pd

A population-based study of dystrophin mutations in Canada

Introduction: We carried out a population-based study of dystrophin mutations in patients followed by members of the Canadian Paediatric Neuromuscular Group (CPNG) over a ten-year period. Objectives: We aimed to describe the changes in diagnostic testing for dystrophinopathy and to determine the frequency of dystrophin mutations from 2000 to 2009. Methods: De-identified data containing the clinical phenotypes, diagnostic methods, and mutational reports from dystrophinopathy patients followed by CPNG centres from January 2000 to December 2009 were analyzed using descriptive statistics. Results: 773 patients had a confirmed diagnosis of dystrophinopathy based on genetic testing (97%), muscle biopsy (2%), or family history (1%). 573 (74%) had complete deletion/duplication analysis of all 79 exons or whole gene sequencing, resulting in 366 (64%) deletions, 64 (11%) duplications, and 143 (25%) point mutations. The percentage of patients who were diagnosed using currently accepted genetic testing methods varied across Canada, with a mean of 63% (SD 23). 246 (43%) mutations involved exons 45 to 53. The top ten deletions (n=147, 26%) were exons 45-47, 45-48, 45, 45-50, 45-55, 51, 45-49, 45-52, 49-50, and 46-47. 169 (29%) mutations involved exons 2 to 20. The most common duplications (n=29, 5.1%) were exons 2, 2-7, 2-17, 3-7, 8-11, 10, 10-11, and 12. Conclusion: This is the most comprehensive report of dystrophin mutations in Canada. Consensus guidelines regarding the diagnostic approach to dystrophinopathy will hopefully reduce the geographical variation in mutation detection rates in the coming decade

Intrapersonal and interpersonal functions as pathways to future self-harm repetition and suicide attempts

Background: Research has identified functions of non-suicidal self-harm/self-injury (NSSH) but whether functions change over time, from adolescence to early adulthood, or predict the continuation of the behaviour prospectively remains unclear. This study aimed to prospectively explore whether intrapersonal and interpersonal NSSH functions in adolescence predict repetition of self-harm (regardless of suicidal intent) and incident suicide attempts in early adulthood. Methods: Participants were 528 individuals with NSSH at age 16 years from the Avon Longitudinal Study of Parents and Children (ALSPAC), a population-based birth cohort in the UK. Descriptive statistics were used to explore changes in functions over time from age 16 to 21, and logistic regression used to examine associations between NSSH functions and repeat self-harm and suicide attempts at age 21, 24 and 25 years. Findings: The majority of 16-year-olds with NSSH endorsed intrapersonal (e.g., affect regulatory) functions only (73% at 16 years and 64% at 21 years). Just under half of adolescents (42%) and three quarters of 21 years olds reported more than one function simultaneously. A greater number of intrapersonal functions at 16 years independently predicted future repetition of self-harm at ages 21-25 years, over and above interpersonal functions (OR=1.46, 95% CI 1.06 to 2.01). Interpersonal functions during adolescence did not predict repeat self-harm or suicide attempts in adulthood. Discussion: Our findings suggest that intrapersonal but not interpersonal NSSH functions are a prospective risk factor for future self-harm and might also predict incident suicide attempts. The results highlight the central role of underlying affective difficulties and motivations in self-harm maintenance

Effects of Bisphosphonate Therapy on Bone Mineral Density in Boys with Duchenne Muscular Dystrophy.

The objective of this study was to estimate the comparative effectiveness of bisphosphonate therapy on bone mineral density (BMD) in patients with corticosteroid-treated Duchenne muscular dystrophy (DMD). A retrospective, comparative effectiveness study evaluating changes in BMD and fragility fractures in patients with DMD presenting to British Columbia Children's Hospital from 1989 to 2017 was conducted. Marginal structural generalized estimating equation models weighted by stabilized inverse-probability of treatment weights were used to estimate the comparative effectiveness of therapy on BMD. Of those treated with bisphosphonates (N = 38), 7 (18.4%), 17 (44.7%), and 14 (36.8%) cases were treated with pamidronate, zoledronic acid, or a combination of both, respectively, while 36 cases of DMD were untreated. Mean age of bisphosphonate initiation was 9.2 (SD 2.7) years. Mean fragility fractures declined from 3.5 to 1.0 following bisphosphonate therapy. Compared to the treated group, the untreated group had an additional 0.63-SD decrease (95% confidence interval [CI]: -1.18, -0.08, P = .026) in total BMD and an additional 1.04-SD decrease (95% CI: -1.74, -0.34; P = .004) in the left hip BMD, but the change in lumbar spine BMD (0.15, 95% CI: -0.36, 0.66; P = .57) was not significant. Bisphosphonate therapy may slow the decline in BMD in boys with corticosteroid-treated DMD compared to untreated counterparts. Total number of fragility fractures decreased following bisphosphonate therapy

Using patient feedback to adapt intervention materials based on acceptance and commitment therapy for people receiving renal dialysis

Theory-based intervention materials must be carefully adapted to meet the needs of users with specific physical conditions. Acceptance and Commitment Therapy (ACT) has been adapted successfully for cancer, chronic pain, diabetes, irritable bowel syndrome, multiple sclerosis, and a range of other conditions, but not so far for people receiving renal haemodialysis. This paper presents findings from a study to adapt ACT-based intervention materials specifically for renal dialysis. Draft written materials consisting of four stories depicting fictitious individuals who used ACT-related techniques to help overcome different challenges and difficulties related to dialysis were adapted using a systematic patient consultation process. The participants were 18 people aged 19 to 80 years, with chronic kidney disease and receiving renal dialysis. Individual, semi-structured interviews were conducted to elicit participants’ views about how the content of the draft materials should be adapted to make them more realistic and relevant for people receiving renal dialysis and about how the materials should be presented and delivered to people receiving renal dialysis. The interview transcripts were analysed using a qualitative adaptation of the Delphi method in which themes are used as a framework for translating feedback into proposals for modifications. The analysis of patient feedback supported the use of patient stories but suggested they should be presented by video and narrated by real dialysis patients. They also indicated specific adaptations to make the stories more credible and realistic. Participant feedback was translated into proposals for change that were considered along with clinical, ethical and theoretical factors. The outcome was a design for a video-based intervention that separated the stories about individuals from the explanations of the specific ACT techniques and provided greater structure, with material organised into smaller chunks. This intervention is adapted specifically for people receiving renal dialysis while retaining the distinctive theoretical principles of ACT. The study shows the value of consulting patients in the development of intervention materials and illustrates a process for integrating patient feedback with theoretical, clinical and practical considerations in intervention design.Kidney Care UK and British Renal Society Joint Grants Partnership, and the University of Derby Research Investment Fund

Canadian paediatric neurology workforce survey and consensus statement

Background: Little knowledge exists on the availability of academic and community paediatric neurology positions. This knowledge is crucial for making workforce decisions. Our study aimed to: 1) obtain information regarding the availability of positions for paediatric neurologists in academic centres; 2) survey paediatric neurology trainees regarding their perceptions of employment issues and career plans; 3) survey practicing community paediatric neurologists 4) convene a group of paediatric neurologists to develop consensus regarding how to address these workforce issues. Methods: Surveys addressing workforce issues regarding paediatric neurology in Canada were sent to: 1) all paediatric neurology program directors in Canada (n=9) who then solicited information from division heads and from paediatric neurologists in surrounding areas; 2) paediatric neurology trainees in Canada (n=57) and; 3) community paediatric neurologists (n=27). A meeting was held with relevant stakeholders to develop a consensus on how to approach employment issues. Results: The response rate was 100% from program directors, 57.9% from residents and 44% from community paediatric neurologists. We found that the number of projected positions in academic paediatric neurology is fewer than the number of paediatric neurologists that are being trained over the next five to ten years, despite a clinical need for paediatric neurologists. Paediatric neurology residents are concerned about job availability and desire more career counselling. Conclusions: There is a current and projected clinical demand for paediatric neurologists despite a lack of academic positions. Training programs should focus on community neurology as a viable career option

Borderline personality traits, rumination and self-injurious behavior: An empirical test of the emotional cascades model in adult male offenders

The aim of the study was to examine whether the emotional cascade model, which suggests that the relationship between emotional and behavioural dysregulation in Borderline Personality Disorder (BPD) is mediated by rumination, applies to a sample of adult male offenders. The study focused on individuals with “BPD traits” and two dysregulated behaviors that are particularly relevant to the prison population: non-suicidal self-injury (NSSI) and suicidality. Participants were 179 adult male offenders detained in a medium-secure prison, all of whom completed a battery of measures and self-reported their actual prison behaviour. The results support the application of the emotional cascade model to adult male offenders, suggesting that emotional cascades may play an important role in NSSI and suicidality in this population, although this relationship needs further exploration. These findings highlight the benefits of targeting rumination to manage risk of NSSI and suicidality within custodial settings

The Canadian Neuromuscular Disease Registry: Connecting Patients to National and International Research Opportunities

Introduction Patient registries serve an important role in rare disease research, particularly for the recruitment and planning of clinical trials. The Canadian Neuromuscular Disease Registry was established with the primary objective of improving the future for neuromuscular (NM) patients through the enablement and support of research into potential treatments. Methods In this report, we discuss design and utilization of the Canadian Neuromuscular Disease Registry with special reference to the paediatric cohort currently enrolled in the registry. Results As of July 25, 2017, there are 658 paediatric participants enrolled in the registry, 249 are dystrophinopathies (229 are Duchenne muscular dystrophy), 57 are myotonic dystrophy participants, 98 spinal muscular atrophy participants and 65 are limb girdle muscular dystrophy. A total of 175 patients have another NM diagnosis. The registry has facilitated 20 clinical trial inquiries, 5 mail-out survey studies and 5 other studies in the paediatric population. Discussion The strengths of the registry are discussed. The registry has proven to be an invaluable tool to NM disease research and has increased Canada’s visibility as a competitive location for the conduct of clinical trials for NM therapies