Understanding chronic pain in Neurofibromatosis Type 1 using the Neurofibromatosis Pain Module (NFPM).

Neurofibromatosis Type 1 (NF1) is an autosomal dominant genetic disorder that can cause an individual significant chronic pain (CP). CP affects quality of life and daily functioning, yet there are limited effective treatments for CP within NF1. The current study describes the impact of CP using the Neurofibromatosis Pain Module (NFPM). The NFPM is a self-reported clinical assessment that evaluates the impact of CP across multiple domains (e.g., interference, severity, tolerance, and symptomology) and three prioritized pain regions. A cross-sectional study (N = 242) asked adults with NF1 to describe and rate their pain using the NFPM. The results indicated that they reported moderate pain severity (M = 6.6, SD = 2.0) on a 0-10 scale, that 54% (n = 131) had been in pain at least 24 days in the last 30, for 75% (n = 181) sleep was affected, and 16% reported that nothing was effective in reducing their CP for their primary pain region. The current results extend previously published work on CP within adults with NF1 and indicate that more emphasis on understanding and ameliorating CP is required. The NFPM is a sensitive clinical measure that provides qualitative and quantitative responses to inform medical providers about changes in CP.

Antipsychotic agents in anxiety disorders: An umbrella review.

BACKGROUND: Although not approved for the treatment of anxiety disorders (except trifluoperazine) there is ongoing off-label, unapproved use of first-generation antipsychotics (FGAs) and second-generation antipsychotics (SGAs) for anxiety disorders. There have been systematic reviews and meta-analyses on the use of antipsychotics in anxiety disorders, most of which focused on SGAs. OBJECTIVE: The specific aims of this umbrella review are to: (1) Evaluate the evidence of efficacy of FGAs and SGAs in anxiety disorders as an adjunctive treatment to traditional antidepressant treatments and other nonantipsychotic medications; (2) Compare monotherapy with antipsychotics to first-line treatments for anxiety disorders in terms of effectiveness, risks, and side effects. The review protocol is registered on PROSPERO (CRD42021237436). METHODS: An initial search was undertaken to identify systematic reviews and meta-analyses from inception until 2020, with an updated search completed August 2021 and January 2023. The searches were conducted in PubMed, MEDLINE (Ovid), EMBASE (Ovid), APA PsycInfo (Ovid), CINAHL Complete (EBSCOhost), and the Cochrane Library through hand searches of references of included articles. Review quality was measured using the AMSTAR-2 (A MeaSurement Tool to Assess Systematic Reviews) scale. RESULTS: The original and updated searches yielded 1796 and 3744 articles respectively, of which 45 were eligible. After final review, 25 systematic reviews and meta-analyses were included in the analysis. Most of the systematic reviews and meta-analyses were deemed low-quality through AMSTAR-2 with only one review being deemed high-quality. In evaluating the monotherapies with antipsychotics compared with first-line treatments for anxiety disorder there was insufficient evidence due to flawed study designs (such as problems with randomization) and small sample sizes within studies. There was limited evidence suggesting efficacy of antipsychotic agents in anxiety disorders other than quetiapine in generalized anxiety disorder (GAD). CONCLUSIONS: This umbrella review indicates a lack of high-quality studies of antipsychotics in anxiety disorders outside of the use of quetiapine in GAD. Although potentially effective for anxiety disorders, FGAs and SGAs may have risks and side effects that outweigh their efficacy, although there were limited data. Further long-term and larger-scale studies of antipsychotics in anxiety disorders are needed.

Recommendations for assessing appearance concerns related to plexiform and cutaneous neurofibromas in neurofibromatosis 1 clinical trials.

BACKGROUND/AIMS: Individuals with neurofibromatosis 1 may experience changes in their appearance due to physical manifestations of the disorders and/or treatment sequelae. Appearance concerns related to these physical changes can lead to psychological distress and poorer quality of life. While many neurofibromatosis 1 clinical trials focus on assessing changes in tumor volume, evaluating patients' perspectives on corresponding changes in symptoms such as physical appearance can be key secondary outcomes. We aimed to determine whether any existing patient-reported outcome measures are appropriate for evaluating changes in appearance concerns within neurofibromatosis 1 clinical trials. METHODS: After updating our previously published systematic review process, we used it to identify and rate existing patient-reported outcome measures related to disfigurement and appearance. Using a systematic literature search and initial triage process, we focused on identifying patient-reported outcome measures that could be used to evaluate changes in appearance concerns in plexiform or cutaneous neurofibroma clinical trials in neurofibromatosis 1. Our revised Patient-Reported Outcome Rating and Acceptance Tool for Endpoints then was used to evaluate each published patient-reported outcome measures in five domains, including (1) respondent characteristics, (2) content validity, (3) scoring format and interpretability, (4) psychometric data, and (5) feasibility. The highest-rated patient-reported outcome measures were then re-reviewed in a side-by-side comparison to generate a final consensus recommendation. RESULTS: Eleven measures assessing appearance concerns were reviewed and rated; no measures were explicitly designed to assess appearance concerns related to neurofibromatosis 1. The FACE-Q Craniofacial Module-Appearance Distress scale was the top-rated measure for potential use in neurofibromatosis 1 clinical trials. Strengths of the measure included that it was rigorously developed, included individuals with neurofibromatosis 1 in the validation sample, was applicable to children and adults, covered item topics deemed important by neurofibromatosis 1 patient representatives, exhibited good psychometric properties, and was feasible for use in neurofibromatosis 1 trials. Limitations included a lack of validation in older adults, no published information regarding sensitivity to change in clinical trials, and limited availability in languages other than English. CONCLUSION: The Response Evaluation in Neurofibromatosis and Schwannomatosis patient-reported outcome working group currently recommends the FACE-Q Craniofacial Module Appearance Distress scale to evaluate patient-reported changes in appearance concerns in clinical trials for neurofibromatosis 1-related plexiform or cutaneous neurofibromas. Additional research is needed to validate this measure in people with neurofibromatosis 1, including older adults and those with tumors in various body locations, and explore the effects of nontumor manifestations on appearance concerns in people with neurofibromatosis 1 and schwannomatosis.

Impact of interprofessional embedding of physical therapy in a primary care training clinic.

Musculoskeletal pain is a prominent complaint in primary care resulting in increased referrals to physical therapy (PT); however, the referral system often results in delays and discontinuation of care. Several models have been developed to improve the referral process including integrating PT into primary care clinics. The Veterans Health Administration (VHA) Center of Excellence in Primary Care Education (CoEPCE), which educates post-graduate trainees in interprofessional teams, began (in 2015) embedding physical therapists into primary care clinics enabling patients to see a physical therapist during their primary care visit. To evaluate the efficacy of this model we tracked the numbers of PT referrals, the number of completed referrals, and the length of time between referral and completion. PT referral parameters from PT-integrated trainees in the CoEPCE were compared to two traditional primary care training clinics at the same VHA site (Firm A and Firm B). Results indicate that the CoEPCE placed and completed more PT referrals and did so with a shorter turnaround time than was seen in the other two clinics. Further analysis suggests that the decreased turnaround time can be attributed to the integration of PTs into the primary care clinic. The results support extending the use of interprofessional clinics that integrate PT into primary care settings.

The effects of augmenting clozapine with oxytocin in schizophrenia: An initial case series.

BACKGROUND: Debilitating symptoms of schizophrenia often persist after sustained treatment with atypical antipsychotics. To date, clozapine has been the most effective of the atypical antipsychotics; however, negative symptoms may persist, indicating a critical need to develop augmenting treatment approaches. METHODS: A retrospective chart review evaluated outcomes for 5 young adult inpatients with treatment-resistant schizophrenia who were prescribed off-label oxytocin (OT; 10 IU/sublingual, 1 time per day, to 20 IU/sublingual, 3 times per day) after their therapeutic response to clozapine plateaued (dose range: 200 to 600 mg). The augmented treatment was well tolerated and continued for at least 1 year after discharge from the hospital, with continued outpatient follow-up by the treating psychiatrist. Evaluation included the Positive and Negative Syndrome Scale and clinical review based on both self and parent/guardian reports. RESULTS: The augmentation of clozapine with sublingual OT in young adults with treatment-resistant schizophrenia appeared to reduce negative symptoms, maintain lowered positive symptoms, and increase occupational and social functioning (eg, return to work or school), as noted by family members. CONCLUSIONS: Future controlled, prospective studies should investigate the possibility that OT can significantly reduce negative symptoms of chronic psychotic illnesses that are inadequately responsive to clozapine or other antipsychotic medications alone.

Retrospective Chart Review of Voluntary Admissions to an Inpatient Psychiatric Hospital in New York City: A Demographic Breakdown.

The current paper evaluates psychiatric needs of voluntary admissions in a large urban psychiatric hospital through a retrospective chart review, as this research is limited within the United States. A total of 581 voluntary adult psychiatric admission charts were reviewed. Continuous variables were evaluated using an ANOVA while associations between variables were examined by an unadjusted Pearson correlation coefficient a stepwise linear regression analysis. Men were significantly more likely to have a past admission for psychiatric services (p = .016), suicidal ideation (p < .001) and test positive for substances (p < .001) than women, and were more likely to be unemployed, homeless and without insurance. Women were more likely to have a past suicide attempt and a depressive disorder. A significant relationship between gender and rationale for seeking voluntary admission (p < .001) was found. This study offers understanding of male and female voluntary admissions, and a foundation for improving treatment interventions to reduce recurrent readmissions.

Patient Requests for Discharge from Voluntary Psychiatric Hospitalization: a Chart Review.

The purpose of this study was to examine the rate of 72-hour letters (written requests for discharge, with 72 hours indicating the time the hospital has to discharge or seek retention) placed by voluntary psychiatric inpatients at a New York City hospital and determine whether there are factors contributing to the rates of discharge requests. Charts from all voluntary psychiatric hospitalizations during the calendar year 2007 were retrospectively reviewed. Included were all single voluntary admissions by adults (age 18 years and older) to the hospital. A confirmatory factor analysis (CFA) was conducted with the following factors: urine toxicology, cigarette use on admission, suicidal ideation upon presentation, employment, past inpatient psychiatric admission, and admission day. A linear regression was used to evaluate the relationship between discharge requests and these factors. Of the total sample (N = 581), 119 (20.5%) patients submitted 72-hour letters. The stepwise linear regression analysis confirmed a positive relationship between letter placement and admission day (M = 3.5, SD = 1.7), unemployment (M = 4.7, SD = 2.1), suicidal ideation (M = .5, SD = .5), positive urine toxicology (M = .47, SD = .5), previous psychiatric hospitalization (M = .7, SD = .5) and cigarette usage (M = .5, SD.5) R2 = .043, (6, 461) = 3.42, p = .003). These specific variables accounted for 55.6% of likelihood of a patient submitting a 72-hour letter. Several factors, related to substance and tobacco use, employment, and recurrent use of inpatient services, likely contribute to requests for early discharge. Addressing these factors may help improve inpatient care, reduce costs and improve patient outcomes in the long term.

The Road to Reintegration: Evaluating the Effectiveness of VA Healthcare in Vocational Rehabilitation and Employment Retention for Veterans with Mental Health and Substance Use Disorders.

Introduction: Veterans diagnosed with mental health and/or substance use disorders (SUD) often face significant barriers to employment and reintegration into civilian society. In the current study, we investigated whether how the VA healthcare system for mental health and/or SUD treatment predicted program enrollment into vocational rehabilitation, simultaneous mental health and/or SUD treatment while enrolled in vocational rehabilitation predicted employment at discharge, and mental health and/or SUD treatment continues and employment remain 60-days-post-vocational-rehabilitation discharge. Methods: An outcome-based, summative program evaluation design to measure quality assurance of vocational rehabilitation services provided to 402 veteran patients enrolled in a VA healthcare located within the Great Lakes Health Care System - Veterans Integrated Services Network. Results: Multivariable logistic regression analyses showed psychological empowerment (confidence in one's ability to work or find work) is a significant factor determining whether a veteran is enrolled in the vocational rehabilitation program, prior mental health treatment (yes/no) and frequency of mental health treatment did not predict program enrollment, and frequency of SUD VA system treatment 60 days prior did not predict program enrollment. Other findings showed that simultaneous mental health and/or SUD treatment while enrolled in vocational rehabilitation did not predict employment at discharge, and employment at discharge did not predict continued mental health and/or SUD treatment post-discharge from vocational rehabilitation. However, veterans with both SUD and mental health and continued mental health treatment were less likely to be employed. Conclusion: Utilization of real-world program evaluation data from an actual VHA vocational rehabilitation program enhances the study's ecological validity, offering practical implications for policymakers and practitioners in the field. The findings support the importance of veterans enrolling in mental health and/or SUD treatment simultaneously while enrolled in vocational rehabilitation services, as integrating vocational rehabilitation with mental health and SUD treatment services can lead to improved vocational and health outcomes for veterans (eg, development of targeted interventions to support veterans' successful reintegration into the workforce and society).

Work readiness and barriers to employment during COVID-19 for individuals with Neurofibromatosis Type 1 (NF1).

BACKGROUND: The global COVID-19 pandemic has directly impacted individuals with rare diseases who are attempting to maintain or obtain employment. Individuals with Neurofibromatosis Type 1 are especially at risk due to their disease. OBJECTIVE: The current study compared the impact that generalized anxiety and quality of life had on work readiness and potential barriers that individuals with NF1 had in gaining and maintaining employment during the COVID-19 pandemic to a sample of healthy individuals using a moderating mediation analysis. METHODS: A total of 213 individuals (105 NF1; 108 Healthy individuals) were recruited to complete a cross-sectional study in which a series of work-related assessments were completed. RESULTS: Generalized anxiety had an indirect effect on work readiness, fully mediated by barriers, with higher anxiety associated with more barriers, in turn negatively correlating with work readiness; quality of life partially mediated the effect of barriers on work readiness and was negatively associated with the former and positively with the latter. CONCLUSION: Quality of life was a mediator of the relationship between perceived employment barriers and work readiness for the healthy individuals group only. The results imply that anxiety and quality of life are significant mediators and require consideration in terms of evaluation and facilitation of employment maintenance and acquisition.

Feasibility of a remotely monitored blood alcohol concentration device to facilitate treatment motivation.

Background: Consistent monitoring of blood alcohol concentration through breathalyzers is critical for identifying reoccurrence. Little research has effectively utilized convenient wireless enabled breathalyzers that can measure blood alcohol concentration while enhancing treatment motivation for outpatient care. The current study attempted to understand the impact of wireless breathalyzers on treatment motivation and self-efficacy in remaining sober for individuals diagnosed with alcohol use disorder in an outpatient treatment facility. Methods: Participants were assigned to one of two conditions: the experimental breathalyzer and the treatment as usual group. The groups were assessed by the University of Rhode Island Change Assessment (URICA), and on self-efficacy, measured by the Alcohol Abstinence Self-Efficacy Scale (AASE). The evaluation period took place over three months with a six-week follow-up evaluation. During the entirety of the evaluation period and post-study follow up, interviews occurred. Results: As a secondary analysis, the URICA's motivational scores were higher for participants receiving the experimental intervention at a two-month evaluation and at the six-week follow-up. The AASE's temptation to reoccurrence scores significantly reduced over time for both groups. The confidence to resist temptation was not significant. Three major themes emerged from the interviews, including the benefit of the breathalyzer facilitating their treatment, ease of device use, and technical issues. Conclusions: The insights gained from this study will be important to develop cost-effective ancillary interventions for comprehensive alcohol dependence treatment. On-going monitoring enabled by new technology allows treatment providers to take an individualized disease-management approach as well as facilitating timely interventions by the treatment provider.

Disparities in program enrollment and employment outcomes for veterans with psychiatric and co-occurring substance use disorders referred or enrolled for VHA vocational rehabilitation.

Introduction: The purpose of the study was to investigate factors that influence vocational rehabilitation program enrollment and employment at discharge of veterans with psychiatric and co-occurring alcohol and other substance use disorders enrolled at a veteran health administration (VHA) medical center. Methods: A sample of 2,550 veteran patients referred for VHA vocational rehabilitation between 2016 and 2021 were examined for the current study. The current study was classified as quality improvement/assurance, thus resulting in exempt research by the U.S. Department of Veteran Affairs Institutional Review Board. Results: Veterans with active alcohol use disorders (AUDs) and co-occurring depression, anxiety, post-traumatic stress disorder, or bipolar disorders were less likely to be enrolled for vocational rehabilitation program services compared to those without these co-occurring diagnoses. Veterans with AUD (active & in-remission status combined into one category) and a diagnosis of anxiety were less likely to be employed at discharge compared to veterans with AUDs and no anxiety diagnosis (anxiety diagnosis - 3.5% vs. no anxiety diagnosis - 5.8%). Discussion: VHA vocational rehabilitation can be an effective intervention to assist veterans in reintegrating back into the community. Yet, there appears to be some disparities in the program enrollment and employment at discharge, depending on the nature of the psychiatric diagnosis. Investigating the factors contributing (mediating or moderating) to these discrepancies are needed. Although it appears access is not the issue in being referred for vocational rehabilitation services, other factors are likely contributing to program entry.

Maintaining Engagement in Adults with Neurofibromatosis Type 1 to Use the iCanCope Mobile Application (iCanCope-NF).

INTRODUCTION: Neurofibromatosis Type 1 (NF1) is an autosomal dominant genetic condition in which chronic pain is a predominant issue. Given the rarity of the disease, there are limited psychosocial treatments for individuals with NF1 suffering with chronic pain. Using mobile applications can facilitate psychosocial treatments; however, there are consistent issues with engagement. Utilizing a mixed methodology, the current study evaluated the customized iCanCope mobile application for NF1 on increasing engagement through the usage of contingency management. METHODS: A mixed methods study from a subset of data coming from a randomized clinical trial that occurred from January 2021 to August 2022 was undertaken. Two groups (iCC and iCC + CM) were exposed to the customized iCanCope mobile application in which engagement data were captured in real-time with daily check-ins for interference, sleep, mood, physical activity, energy levels, goal setting, and accessing article content (coping strategies). Additionally, semi-structured interviews were conducted to gain insight into the participants' experience at the end of the trial. RESULTS: Adults (N = 72) were recruited via NF patient advocacy groups. Significant differences were noted between the groups in total articles read (p = 0.002), goals achieved (p = 0.017), and goals created (p = 008). Additionally, there were significant differences observed between user-generated goals and those that were app recommended (p < 0.001). Both groups qualitatively reported positive feedback on the customized mobile application, indicating that continued usage and engagement of the mobile application were acceptable. CONCLUSIONS: Employing customized mobile applications for adults with NF1 along with contingency management can leverage self-managed pain treatments while providing auxiliary resources to this population.

Preliminary Effectiveness of a Remotely Monitored Blood Alcohol Concentration Device as Treatment Modality: Protocol for a Randomized Controlled Trial.

BACKGROUND: Alcohol use disorder is a chronic disorder with a high likelihood of relapse. The consistent monitoring of blood alcohol concentration through breathalyzers is critical to identifying relapse or misuse. Smartphone apps as a replacement of or in conjunction with breathalyzers have shown limited effectiveness. Yet, there has been little research that has effectively utilized wireless or Wi-Fi-enabled breathalyzers that can accurately, securely, and reliably measure blood alcohol concentration. OBJECTIVE: The purpose of this study is to evaluate the impact of a wireless blood alcohol concentration device in collaboration with long-term treatment on dropout rates, psychological distress, treatment motivation, quality of life, and need for higher levels of follow-up care for patients with alcohol use disorder. METHODS: The randomized clinical trial will include two arms, access to the wireless breathalyzer versus no access to the breathalyzer, while both groups have access to treatment. Evaluation will last 3 months with a 6-week follow-up, during which each participant will be interviewed at admission, 1 month in, 2 months in, 3 months in, and follow-up. Individuals will be recruited online through a secure telehealth meeting invitation. Outcomes will focus on the impact of the wireless breathalyzer within the alcohol use disorder population, and the combined effect on psychological distress, treatment motivation, and quality of life. In addition, we intend to investigate the impact of the breathalyzer on dropout rates and participants' need for higher levels of follow-up care and treatment. RESULTS: The recruitment of this study started in July 2020 and will run until 2022. CONCLUSIONS: This information will be important to develop cost-effective treatments for alcohol dependence. Ongoing monitoring allows treatment providers to take an individualized disease management approach and facilitates timely intervention by the treatment provider. TRIAL REGISTRATION: ClinicalTrials.gov NCT04380116; http://clinicaltrials.gov/ct2/show/NCT04380116. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/30186.

Effects of VHA Policy Directive 1163 on Acceptance and Employment Rates for Veterans with Substance Use Disorders Referred to VHA Vocational Rehabilitation.

Introduction: Research has shown that Veterans with Substance/Alcohol Use Disorders (SUDs/AUDs) are at a greater risk for employment-related issues (eg, lower labor force participation rates), and interventions such as Vocational Rehabilitation (VR) have been used as a tool to reduce employment obtainment and maintenance. The purpose of the current study was to evaluate acceptance rates and employment rates at closure for Veterans with SUDs/AUDs prior to the implementation of VHA Policy Directive 1163 (mandated that Veterans are not refused services based on prior or current SUD/AUDs). SUD/AUDs were coded to reflect DSM 5-TR criteria of active use and in-remission. Methods: Data from a VHA Vocational Rehabilitation program in the Veterans Integrated Service Network 12 network were obtained for the purpose of the current study. Results: Findings showed that Veterans with AUDs were less likely to be accepted for VR services prior and after implementation of VHA Policy Directive 1163. Conclusions: When examining active and inactive SUDs/AUDs, findings showed that implementation of VHA Policy Directive 1163 was not effective for Veterans with AUDs. One factor that was not explored but could explain disparities in program acceptance rates is duration of program entry. If a Veteran has a consult placed for VHA Vocational Rehabilitation services, and their program entry date (date accepted) is a significant duration, then perhaps Veterans with active AUDs start drinking again given that they are waiting for vocational assistance. Thus, it would be important to assist Veterans with active AUDs into services in a timely manner (perhaps prior them being discharged from SUD treatment).

Impact of substance use disorders on employment for veterans.

Approximately 1.1 million veterans meet criteria for substance use disorders (SUDs) with 1 in 4 struggling with illicit drugs, 4 in 5 struggling with alcohol use, and 1 in 13 struggling with both. The purpose of this study was to examine the impact of SUDs on closure status (exiting with employment, did not exit with employment) for veterans served in a Department of Veterans Affairs' Veterans Health Administration (VHA) vocational rehabilitation (VR) program. Data (N = 2,620) from a VHA VR program in the Veterans Integrated Service Network 12 network were obtained for the purpose of the present study and consisted of veterans enrolled from 2012 to 2018. Findings showed that veterans without SUDs were more likely to exit with employment, and veterans enrolled in transitional work and community-based employment were more likely to exit with employment compared to those within supported employment (SE). Given that SE helps to serve veterans with the most severe psychological or medical conditions (e.g., active psychosis, schizophrenia, bipolar disorder, spinal cord injury, traumatic brain injury), findings suggest veterans are more successful with less serious mental health conditions. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

Development and validation of a new scale to measure chronic suicidal ideation: The Chronic Suicidal Ideation Inventory-5 (CSI-5).

OBJECTIVE: Little is known about characteristics that differentiate acute from chronic suicidal ideation. Studies have been hampered by the lack of a formal operational definition or measurement tool for chronic suicidal ideation (CSI). We sought to adapt a standardized measure of obsessive-compulsive thinking to rate chronic suicidal ideation in a mood disorder inpatient cohort. METHOD: We devised a novel self-report instrument, based on constructs related to obsessive-compulsive thinking and the Yale-Brown Obsessive-Compulsive Scale (Y-BOCS), as applied to preoccupations with suicidal thoughts and their persistence over 24 months in a previously described cohort of 97 inpatients with mood disorder. Exploratory factor analysis and principal components analysis were used to establish the factor structure of the instrument, and Cronbach's alpha and McDonald's omega were calculated to determine internal consistency of the scale. RESULTS: Significant Pearson correlations with individual scale items and total CSI-5 scores were evident in relation to the 2-, 6-, 12- and 24-month periods preceding the index hospitalization. A one-factor solution explained 75% of the variance in total CSI-5 scores. Cronbach's alpha was 0.914, and McDonalds's omega was 0.916. CSI-5 scores were not significantly associated with current depression severity scores or actual past suicide attempts. CONCLUSIONS: This 5-item adaptation of Y-BOCS-type questions provides an internally consistent and reliable assessment of chronic suicidal ideation in patients with mood disorder. The integrated assessment of time occupied by suicidal thoughts, activity interference, associated distress, efforts to resist suicidal thoughts, and degree of control over suicidal thinking provides a cohesive framework for understanding chronic suicidal ideation.

Innovation in the treatment of persistent pain in adults with Neurofibromatosis Type 1 (NF1): Implementation of the iCanCope mobile application.

Neurofibromatosis Type 1 (NF1) is a genetic disorder presenting with chronic pain symptoms that has limited treatment options for addressing the pain. The utilization of a mobile application allows for greater reach and scalability when using empirically valid psychosocial self-management treatments for pain. The iCanCope mobile application has been utilized in several different populations dealing with pain symptoms and has demonstrated initial effectiveness. To address the need for this population, we have customized the iCanCope mobile application for the NF1 population and included additional tailored features. We describe the rationale and design of a pilot randomized control study with a sample of 108 adults with NF1, in which two groups will receive access to the mobile application, of which one group will be incentivized to engage in the mobile application and the third group will treatment as usual over the course of 8-week period with a six-week follow-up. Outcomes will focus on the acceptability of the iCanCope-NF mobile application within the NF1 population and the impact of pain related activity on psychometric evaluations to determine if the contingency management will impact the engagement of mobile application, as well as to identify the participants' experiences in relationship to their treatment satisfaction and perceived support.

The Spanish Version of the Video Game Functional Assessment-Revised.

It is estimated that 16.8 million in Spain (41% female) are involved in gaming, and approximately 8.3% of Spanish gamers are problematic gamers (i.e., endorsing five or more of the nine criteria for Internet Gaming Disorder [IGD]). Given the high prevalence of IGD in Spain, this study evaluated construct validity and concurrent validity of the Spanish Version of the Video Game Functional Assessment-Revised (SP-VGFA-R), by examining the correlational coefficients with the nine-item Internet Gaming Disorder Scale-Short-Form (IGDS9-SF). A total of 434 adults 18 years of age or older participated in the study (15.1% female). Results showed that the SP-VGFA-R was positively and significantly associated with the IGDS9-SF (bivariate coefficients ranging from 0.411 to 0.610). Four distinct factors in the SP-VGFA-R were identified in confirmatory factor analysis, including (a) social attention, (b) tangible/intangible rewards, (c) escape/avoidance of demands or pain, and (d) sensory stimulation. Other findings showed that IGDS9-SF scores increased as (a) the escape/avoidance of demands or pain function increased and (b) two or more function scores increased. The SP-VGFA-R can be used in combination with the IGDS9-SF to assess Spanish gamers with IGD internationally, and to develop evidence-based behavioral interventions.

Perspectives on adapting a mobile application for pain self-management in neurofibromatosis type 1: results of online focus group discussions with individuals living with neurofibromatosis type 1 and pain management experts.

OBJECTIVE: Neurofibromatosis type 1 (NF1) is a genetic disorder in which chronic pain commonly occurs. The study sought to understand the needs of individuals with NF1 and pain management experts when adapting a pain self-management mobile health application (app) for individuals with NF1. DESIGN: We conducted a series of online, audio-recorded focus groups that were then thematically analysed. SETTING: Online focus groups with adults currently residing in the USA. PARTICIPANTS: Two types of participants were included: individuals with NF1 (n=32 across six focus groups) and pain management experts (n=10 across three focus groups). RESULTS: Six themes across two levels were identified. The individual level included lifestyle, reasons for using the mobile app and concerns regarding its use. The app level included desired content, desired features and format considerations. Findings included recommendations to grant free access to the app and include a community support feature for individuals to relate and validate one another's experience with pain from NF1. In addition, participants noted the importance of providing clear instructions on navigating the app, the use of an upbeat, hopeful tone and appropriate visuals. CONCLUSIONS: Both participant groups endorsed the use of iCanCope (iCC) as an NF1 pain self-management mobile app. Differences between groups were noted, however. The NF1 group appeared interested in detailed and nuanced pain tracking capabilities; the expert group prioritised tracking information such as mood, nutrition and activity to identify potential associations with pain. In tailoring the existing iCC app for individuals with NF1, attention should be paid to creating a community support group feature and to tailoring content, features and format to potential users' specific needs.