Naomi E. Joffe

A Qualitative Examination of a New Combined Cognitive-Behavioral and Neuromuscular Training Intervention for Juvenile Fibromyalgia.

Objectives:Adolescents with juvenile fibromyalgia (JFM) are typically sedentary despite recommendations for physical exercise, a key component of pain management. Interventions such as cognitive-behavior therapy (CBT) are beneficial but do not improve exercise participation. The objective of this study was to obtain preliminary information about the feasibility, safety, and acceptability of a new intervention—Fibromyalgia Integrative Training for Teens (FIT Teens), which combines CBT with specialized neuromuscular exercise training modified from evidence-based injury prevention protocols. Materials and Methods:Participants were 17 adolescent females (aged 12 to 18 y) with JFM. Of these, 11 completed the 8-week (16 sessions) FIT Teens program in a small-group format with 3 to 4 patients per group. Patients provided detailed qualitative feedback via individual semistructured interviews after treatment. Interview content was coded using thematic analysis. Interventionist feedback about treatment implementation was also obtained. Results:The intervention was found to be feasible, well tolerated, and safe for JFM patients. Barriers to enrollment (50% of those approached) included difficulties with transportation or time conflicts. Treatment completers enjoyed the group format and reported increased self-efficacy, strength, and motivation to exercise. Participants also reported decreased pain and increased energy levels. Feedback from participants and interventionists was incorporated into a final treatment manual to be used in a future trial. Discussion:Results of this study provided initial support for the new FIT Teens program. An integrative strategy of combining pain coping skills via CBT enhanced with tailored exercise specifically designed to improve confidence in movement and improving activity participation holds promise in the management of JFM.

Utility of the PedsQL rheumatology module as an outcome measure in juvenile fibromyalgia.

The PedsQL rheumatology module is currently the only available measure of disease‐specific quality of life for children and adolescents with juvenile fibromyalgia (FM), but limited information has been published about the psychometric properties of the instrument, specifically in juvenile FM. The objective of this study was to assess the reliability, validity, and sensitivity to change of the 5 scales (pain and hurt, daily activities, treatment, worry, and communication) of the patient and parent proxy versions of the PedsQL rheumatology module in the context of a randomized controlled trial in juvenile FM.

Earlier Pediatric Psychology Consultation Predicts Lower Stem Cell Transplantation Hospital Costs

Objective The purpose of this study was to examine the hypothesis that earlier time to psychology consultation would predict lower costs for the initial stem cell transplant (SCT) hospitalization among patients receiving care at a childrens hospital. Methods A retrospective medical record review identified 75 patients (ages 0-32 years) with one or more visits by a licensed clinical psychologist during the initial SCT hospitalization from 2010 to 2014. Demographic and clinical variables were obtained from the electronic medical record and hospitalization costs were obtained from patient billing records. A generalized linear model with a gamma distribution and log link function was used to estimate the relationship between time to psychology consultation and cost for the initial SCT hospitalization while controlling for demographic, clinical, and utilization factors. Results After controlling for age at SCT, gender, race, insurance status, diagnosis, SCT type, length of stay, and number of psychology visits, earlier time to psychology consultation predicted lower costs for the initial SCT hospitalization (χ2 = 6.83, p = .01). When the effects of covariates were held constant, every day increase in the time to psychology consultation was associated with a 0.3% increase in SCT hospitalization costs (β = 0.003, SE = 0.001). Conclusions Results suggest that facilitating consultations with a pediatric psychologist early in the initial SCT hospitalization may reduce costs for patients undergoing SCT at childrens hospitals. Future research is needed to determine the optimal timing of psychology consultation and quantify the economic impact of psychological services.

Longitudinal examination of family efficacy following pediatric stem cell transplant

Pediatric stem cell transplant (pSCT) is emotionally demanding for families. Yet, we know little of how the family unit responds to the adversity of pSCT within the first year after transplant. Family efficacy, an indicator of family resilience, is linked to positive parent, child, and family adjustment. Better understanding the factors that promote family efficacy during this difficult time could inform modifiable intervention targets and improve child and parent adjustment. The primary objectives were to examine patterns of family efficacy beliefs and identify factors that promote or hinder family efficacy.

Reply to iManage: A novel self‐management app for sickle cell disease

To the Editor: We would like to thank Dr. Badawy for his letter1 regarding our study “Development and Evaluation of iManage: A Self-Management App Co-Designed by Adolescents with Sickle Cell Disease.”2 The letter highlights important technology challenges encountered in the development and evaluation of mobile health (mHealth) applications (apps) like iManage. We concur that the operating system is an important consideration particularly since adolescents and young adults (AYA) living with sickle cell disease (SCD) may have less access to iOS based devices (iPhone/iPad). Thus, the iManage app was developed for use on the iOS and Android platforms. We also agree that data privacy and security issues are paramount to mHealth. To ensure that the data collected via iManage is confidential, accurate and reliable,3 data is automatically encrypted. Data access is limited to the app developer, the data owner (LC) and study staff. All data are backed up daily and stored on a server in our institution’s main datacenter, which is monitored 24 hours per day. Study staff review user data by logging into an administrative portal also housed on a server in the datacenter. To limit disclosure of protected health information, AYA receive unique login credentials, and sign a data security and privacy contract prior to using iManage. Different mHealth functionality/features give rise to distinct risks to information security and privacy which need to be addressed individually.4 For example, any medical information entered into the patient profile section of iManage is kept private and cannot be viewed by other users. iManage users can view each other’s progress on self-management goals; however, AYA see only the status of another AYA’s self-management goal (complete, not complete) not the content. Additionally, the iManage messaging and reminder functions may be viewed by others in the user’s environment (i.e., family, friends) but are general and do not include user names. AYA use iManage to track daily pain and mood symptoms over time, but this data is private and cannot be viewed by other iManage users. Currently, psychology staff monitors AYA symptoms because staff has weekly contact with all users since they are participating in a larger self-management intervention study. Our research team is exploring AYA and provider preferences for handling any concerning symptoms reported in the app (i.e. patient or provider prompt if high pain severity or low mood are reported). The next step will be to evaluate the feasibility and impact of these prompts on AYA selfmanagement and health outcomes.

Evaluation of a Body Pillow to Aid Pediatric Spinal Fusion Recovery

Spinal fusion is a surgery to correct spinal damage or abnormalities. Specific physical positioning facilitates healing but is difficult to maintain and uncomfortable. We compared standard practice (i.e. multiple hospital pillows) to a body-sized pillow for improving comfort and pain in pediatric patients post surgery. A multiple baseline design was used to evaluate three adolescents during post-surgery recovery. Measures included patient report, nurse report, heart rate, and medication requests. Results suggested that the body-sized pillow provided greater comfort than the hospital pillows.