Implementation of web-based open-source radiotherapy delineation software (WORDS) in organs at risk contouring training for newly qualified radiotherapists: quantitative comparison with conventional one-to-one coaching approach

Abstract Background Due to the role expansion of radiotherapists in dosimetric aspect, radiotherapists have taken up organs at risk (OARs) contouring work in many clinical settings. However, training of newly qualified radiotherapists in OARs contouring can be time consuming, it may also cause extra burden to experienced radiotherapists. As web-based open-source radiotherapy delineation software (WORDS) has become more readily available, it has provided a free and interactive alternative to conventional one-to-one coaching approach during OARs contouring training. The present study aims to evaluate the effectiveness of WORDS in training OARs contouring skills of newly qualified radiotherapists, compared to those trained by conventional one-to-one coaching approach. Methods Nine newly qualified radiotherapists (licensed in 2017 – 2018) were enrolled to the conventional one-to-one coaching group (control group), while 11 newly qualified radiotherapists (licensed in 2019 – 2021) were assigned to WORDS training group (measured group). Ten OARs were selected to be contoured in this 3-phases quantitative study. Participants were required to undergo phase 1 OARs contouring in the beginning of the training session. Afterwards, conventional one-to-one training or WORDS training session was provided to participants according to their assigned group. Then the participants did phase 2 and 3 OARs contouring which were separated 1 week apart. Phase 1 – 3 OARs contouring aimed to demonstrate participants’ pre-training OARs contouring ability, post-training OARs contouring ability and knowledge retention after one-week interval respectively using either training approach. To prevent bias, the computed tomography dataset for OARs contouring in each phase were different. Variations in the contouring scores for the selected OARs were evaluated between 3 phases using Kruskal-Wallis tests with Dunn tests for pairwise comparisons. Variations in the contouring scores between control and measured group in phase 1 – 3 contouring were analyzed using Wilcoxon signed-rank test. A p-value < 0.05 was considered to be statistically significant. Results In both control group and measured group, significant improvement (p < 0.05) in phase 2 and 3 contouring scores have been observed comparing to phase 1 contouring scores. In comparison of contouring scores between control group and measured group, no significant differences (p > 0.05) were observed in all OARs between both groups. Conclusions The results in this study have demonstrated that the outcome of OARs contouring training using WORDS is comparable to the conventional training approach. In addition, WORDS can offer flexibility to newly qualified radiotherapists to practice OARs contouring at will, as well as reduce staff training burden of experienced radiotherapists.

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4468 Evaluating the Emerging Investigators Website as an Educational Resource for Early Career Researchers

Journal of Clinical and Translational Science ◽

10.1017/cts.2020.211 ◽

2020 ◽

Vol 4 (s1) ◽

pp. 61-62

Author(s):

Layla Fattah ◽

Inga Peter ◽

Jenny Lin ◽

Janice Lynn Gabrilove

Keyword(s):

Phase 1 ◽

Early Career ◽

Second Phase ◽

Phase 2 ◽

Web Based ◽

Educational Value ◽

Early Career Researchers ◽

Content Relevance ◽

Mount Sinai ◽

Initial Survey

OBJECTIVES/GOALS: The aim of this project is to assess the usability and acceptance of a web-based educational resource for early career researchers. The Emerging Investigators website is designed to bring together resources, provide educational support and foster a community of early career researchers throughout the Mount Sinai Health System (MSHS). Locally designed and built, this web-based platform is developed using the principles of Community of Inquiry (COI), which considers how the design of online learning environments might best create and sustain a sense of community among learners. Developing a resource that meets the needs of this cohort of researchers requires an iterative implementation strategy guided by user feedback. A formal website roll-out strategy and accompanied evaluation aims to determine the design, navigability, content, relevance and educational value of this online resource from a user perspective. METHODS/STUDY POPULATION: In order to ensure this resource effectively meets the needs of this cohort of researchers, a mixed process of evaluation and design was utilized. An initial phase 1 survey was conducted with TL1 and KL2 scholars. Surveys consisted of standardized questions with answers arranged as Likert-type scales and additional written responses to collect valuable qualitative data. A convenience sample of early career researchers at Mount Sinai were contacted for initial survey participation (N = 10). A total of 3 junior faculty KL2 scholars, 3 TL1 post-doc and 4 TL1 pre-doc scholars responded to the survey. Participants were initially asked to comment on design, functionality and usefulness of content on a Likert scale with qualitative comments to support the given scores. They were subsequently asked to consider what key topics or resources were missing from the website. Based on the initial survey, changes were made to the format and content of the Emerging Investigators website to improve content relevance and usability. For phase 2, an evaluation rubric was developed to assess design, navigability, content, relevance, along with three key COI criteria to determine the educational value of this online resource. The rubric will be utilized to collect feedback in the wider phase 2 roll out of the website. RESULTS/ANTICIPATED RESULTS: The first phase of survey feedback shaped overall design of the resource. The second phase will comprehensively evaluate the value of the website in the context of teaching and learning for emerging investigators. Ten surveys were captured in the first phase. Data collection is ongoing for the second phase. Phase 1 feedback was primarily qualitative, and valuable in informing overall design choices and content. Overall the website was well received, with participants commenting on the value of the resource in terms of content and educational value. Participants particularly appreciated the regularly updated calendar function and the links provided to a wide range of resources. Functionality issues, such as broken links, were reported by participants and repaired for phase 2. Further topics of content were identified, and additional links and multimedia resources were added to address this feedback. The second phase evaluation is ongoing with data collection being conducted via an evaluation rubric. DISCUSSION/SIGNIFICANCE OF IMPACT: The Emerging Investigators website, developed using the principles of COI provides key learning, reading and resources for early career investigators in a format that is well received by a sample group of early career researchers at Mount Sinai. The website has aimed to address the reported need for communication, collaboration and social interaction with peers and other researchers across the MSHS through the addition of further web-based resources such as a LinkedIn page, a blog to feature research and provide a sounding board for research efforts, and a calendar of events targeted specifically at early career researchers. These were highlighted as areas of particular value by the participants. We anticipate the results of phase 2 rubric-based evaluations will provide actionable data that will lead to further refinement of the website, an optimized interface, and improved usability.

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A Novel Approach to Practice-Based Learning and Improvement Using a Web-Based Audit and Feedback Module

Journal of Graduate Medical Education ◽

10.4300/jgme-d-14-00016.1 ◽

2014 ◽

Vol 6 (3) ◽

pp. 541-546 ◽

Cited By ~ 4

Author(s):

Joel C. Boggan ◽

George Cheely ◽

Bimal R. Shah ◽

Randy Heffelfinger ◽

Deanna Springall ◽

...

Keyword(s):

Phase 1 ◽

Data Entry ◽

Audit And Feedback ◽

Phase 2 ◽

Online Data ◽

Web Based ◽

Online Tool ◽

Novel Approach ◽

Patients With Diabetes ◽

Personal Performance

Abstract Background Systematically engaging residents in large programs in quality improvement (QI) is challenging. Objective To coordinate a shared QI project in a large residency program using an online tool. Methods A web-based QI tool guided residents through a 2-phase evaluation of performance of foot examinations in patients with diabetes. In phase 1, residents completed reviews of health records with online data entry. Residents were then presented with personal performance data relative to peers and were prompted to develop improvement plans. In phase 2, residents again reviewed personal performance. Rates of performance were compared at the program and clinic levels for each phase, with data presented for residents. Acceptability was measured by the number of residents completing each phase. Feasibility was measured by estimated faculty, programmer, and administrator time and costs. Results Seventy-nine of 86 eligible residents (92%) completed improvement plans and reviewed 1471 patients in phase 1, whereas 68 residents (79%) reviewed 1054 patient charts in phase 2. Rates of performance of examination increased significantly between phases (from 52% to 73% for complete examination, P < .001). Development of the tool required 130 hours of programmer time. Project analysis and management required 6 hours of administrator and faculty time monthly. Conclusions An online tool developed and implemented for program-wide QI initiatives successfully engaged residents to participate in QI activities. Residents using this tool demonstrated improvement in a selected quality target. This tool could be adapted by other graduate medical education programs or for faculty development.

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Relocation does not have a significant effect on the growth rate of Bos indicus cross steers

Australian Journal of Experimental Agriculture ◽

10.1071/ea07154 ◽

2008 ◽

Vol 48 (5) ◽

pp. 608 ◽

Cited By ~ 2

Author(s):

R. G. Holroyd ◽

V. J. Doogan ◽

M. R. Jeffery ◽

J. A. Lindsay ◽

B. K. Venus ◽

...

Keyword(s):

Growth Rate ◽

Phase 1 ◽

Bos Indicus ◽

Poor Performance ◽

The Other ◽

Control Group ◽

Phase 2 ◽

Treatment Groups ◽

Normal Ranges ◽

Native Pastures

This experiment tested the hypothesis that relocating cattle is detrimental to their growth. The study examined the effect of having relocated cattle mixed with, or segregated from, the local acclimatised cattle at the destination property. Bos indicus cross steers (120) were allocated to three groups and were relocated, in two separate cohorts, 980 km from northern Queensland to improved pastures in central Queensland. At the start of Phase 1, the control group (C) was moved 3 months before the other two groups. The remaining two groups grazed native pastures; one group was supplemented (SR) to increase growth rate similar to that expected from improved pasture in central Queensland and the other was not supplemented (R). At the end of Phase 1, C was significantly (P < 0.05) heavier than SR, which was significantly (P < 0.05) heavier than R. At the start of Phase 2, the SR and R groups were relocated and after transportation the R and SR groups lost 12 kg or 4.4% of liveweight and 18 kg or 5.7% of liveweight, respectively; this weight loss was recovered after 5 days. All steers were reallocated to segregated (SEG) or mixed (MIX) treatment groups forming six treatments (SEG.C, SEG.R and SEG.SR and MIX.C, MIX.R and MIX.SR). There were no significant differences in liveweights within the SEG treatments by 57 days or within the MIX treatments by 106 days after relocation. There were few if any significant differences in the plasma constituents and differential leucocyte counts of the steers and most results were within physiologically normal ranges. We conclude on the basis of these results and of other experiments that the anecdotal poor performance of cattle after relocation appears to be unfounded.

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Randomized Clinical Trial of Balance-Based Torso Weighting for Improving Upright Mobility in People with Multiple Sclerosis

Neurorehabilitation and Neural Repair ◽

10.1177/1545968309336146 ◽

2009 ◽

Vol 23 (8) ◽

pp. 784-791 ◽

Cited By ~ 33

Author(s):

Gail L. Widener ◽

Diane D. Allen ◽

Cynthia Gibson-Horn

Keyword(s):

Multiple Sclerosis ◽

Clinical Trial ◽

Body Weight ◽

Randomized Clinical Trial ◽

Phase 1 ◽

Gait Velocity ◽

Control Group ◽

Phase 2 ◽

Timed Up And Go ◽

Standard Weight

Background. Torso weighting has sometimes been effective for improving upright mobility in people with multiple sclerosis, but parameters for weighting have been inconsistent. Objective. To determine whether balance-based torso weighting (BBTW) has immediate effects on upright mobility in people with multiple sclerosis. Methods. This was a 2-phase randomized clinical trial. In phase 1, 36 participants were randomly assigned to experimental and control groups. In phase 2, the control group was subsequently randomized into 2 groups with alternate weight-placement. Tests of upright mobility included: timed up and go (TUG), sharpened Romberg, 360-degree turns, 25-foot walk, and computerized platform posturography. Participants were tested at baseline and again with weights placed according to group membership. In both phases, a physical therapist assessed balance for the BBTW group and then placed weights to decrease balance loss. In phase 1, the control group had no weights placed. In phase 2, the alternate treatment group received standard weight placement of 1.5% body weight. Results. People with BBTW showed a significant improvement in the 25-foot walk ( P = .01) over those with no weight, and the TUG ( P = .01) over those with standard weight placement. BBTW participants received an average of 0.5 kg, less than 1.5% of any participant’s body weight. Conclusion. BBTW can have immediate advantages over a nonweighted condition for gait velocity and over a standardized weighted condition for a functional activity in people with multiple sclerosis (MS) who are ambulatory but have balance and mobility abnormalities.

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A Self-Paced, Web-Based, Positive Emotion Skills Intervention for Reducing Symptoms of Depression: Protocol for Development and Pilot Testing of MARIGOLD (Preprint)

10.2196/preprints.10494 ◽

2018 ◽

Author(s):

Elaine O Cheung ◽

Elizabeth L Addington ◽

Sarah M Bassett ◽

Stephanie A Schuette ◽

Eva W Shiu ◽

...

Keyword(s):

Positive Emotion ◽

Negative Emotion ◽

Phase 1 ◽

Coping Resources ◽

Discussion Board ◽

Phase 2 ◽

Web Based ◽

Pilot Testing ◽

Symptoms Of Depression ◽

Emotion Skills

BACKGROUND Living with elevated symptoms of depression can have debilitating consequences for an individual’s psychosocial and physical functioning, quality of life, and health care utilization. A growing body of evidence demonstrates that skills for increasing positive emotion can be helpful to individuals with depression. Although Web-based interventions to reduce negative emotion in individuals with depression are available, these interventions frequently suffer from poor retention and adherence and do not capitalize on the potential benefits of increasing positive emotion. OBJECTIVE The aim of this study was to develop and test a Web-based positive emotion skills intervention tailored for individuals living with elevated depressive symptoms, as well as to develop and test enhancement strategies for increasing retention and adherence to that intervention. METHODS This study protocol describes the development and testing for Mobile Affect Regulation Intervention with the Goal of Lowering Depression (MARIGOLD), a Web-based positive emotion skills intervention, adapted for individuals with elevated depressive symptomatology. The intervention development is taking place in three phases. In phase 1, we are tailoring an existing positive emotion skills intervention for individuals with elevated symptoms of depression and are pilot testing the tailored version of the intervention in a randomized controlled trial with two control conditions (N=60). In phase 2, we are developing and testing three enhancements aimed at boosting retention and adherence to the Web-based intervention (N=75): facilitator contact, an online discussion board, and virtual badges. In phase 3, we are conducting a multifactorial, nine-arm pilot trial (N=600) to systematically test these enhancement strategies, individually and in combination. The primary outcome is depressive symptom severity. Secondary outcomes include positive and negative emotion, psychological well-being, and coping resources. RESULTS The project was funded in August 2014, and data collection was completed in May 2018. Data analysis is currently under way, and the first results are expected to be submitted for publication in 2018. CONCLUSIONS Findings from this investigation will enable us to develop an optimal package of intervention content and enhancement strategies for individuals with elevated symptoms of depression. If this intervention proves to be effective, it will provide a cost-effective, anonymous, appealing, and flexible approach for reducing symptoms of depression and improving psychological adjustment through increasing positive emotion. CLINICALTRIAL ClinicalTrials.gov NCT01964820 (Phase 1); https://clinicaltrials.gov/ct2/show/NCT01964820 (Archived by WebCite at http://www.webcitation.org/6zpmKBcyX). ClinicalTrials.gov NCT02861755 (Phase 2); https://clinicaltrials.gov/ct2/show/NCT02861755 (Archived by WebCite at http://www.webcitation.org/6zpmLmy8k). REGISTERED REPORT IDENTIFIER RR1-10.2196/10494

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8 Positive Distraction Entertainment System (PDES) in Paediatric Population Undergoing Day Surgery

Paediatrics & Child Health ◽

10.1093/pch/pxaa068.007 ◽

2020 ◽

Vol 25 (Supplement_2) ◽

pp. e3-e3

Author(s):

Michael Chang ◽

Alicia Fernandes ◽

Alexandra Frankel

Keyword(s):

Virtual Reality ◽

Separation Anxiety ◽

Pediatric Population ◽

Phase 1 ◽

Paediatric Population ◽

Day Surgery ◽

Control Group ◽

Phase 2 ◽

Before And After ◽

Experience Survey

Abstract Background Patients undergoing procedures at hospitals may experience anxiety and such anxiety can be heightened in pediatric populations. Anxiety can invoke a physical and mental stress response leading to poorer health outcomes and in children these outcomes include: resistance to treatment, nightmares, longer recovery periods, lowered pain thresholds and separation anxiety (Biddis, 2014; Manyande 2015; Aydın 2017). Objectives This study aimed to test whether a virtual reality intervention is feasible, beneficial and effective in reducing anxiety prior to surgery in the pediatric population of Scarborough Health Network. Design/Methods Virtual Reality (VR) is a computer technology that simulates a user’s physical presence in a virtual or imaginary environment. ‘Bubble Bloom’, an underwater fishing game where participants launch bubbles to catch colourful fish, is the VR game that the children are administered in a two phased research design to explore whether the VR intervention was a beneficial tool in reducing anxiety in our pediatric population. Phase 1 was a trial phase in which participants (n=20) were administered the condensed version of the State Trait Anxiety Scale before and after the intervention to determine if anxiety levels had been reduced. Participants were also administered an experience survey to explore patient satisfaction, headset comfort, and virtual reality satisfaction. Phase 2, randomized control trial, is currently ongoing with the same measures and VR intervention being administered. In Phase 2, participants are randomized to the control group (regular play activities) or intervention (virtual reality game). Results In Phase 1, all participants indicated they enjoyed the experience of the virtual reality intervention. Sixteen of the 20 participants had pre scores that were in the mild to moderate anxiety range (80%). Of these 16 participants, 10 participants’ post scores decreased to the normal or no anxiety range (63%). Additionally, 80% of participants demonstrated a reduction in anxiety post-virtual reality intervention. Conclusion Phase 1 results were encouraging with 80% of participants experiencing a reduction in anxiety and all participants enjoying the virtual reality experience.

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High precision radiotherapy for vulvar cancer in post renal transplantation: Dosimetric challenges

10.1055/s-0039-1685369 ◽

2016 ◽

Author(s):

Subhashini John

Keyword(s):

High Precision ◽

Planning Target Volume ◽

Organs At Risk ◽

Phase 1 ◽

Target Volume ◽

Phase 2 ◽

Plan Evaluation ◽

Transplanted Kidney ◽

Precision Radiotherapy ◽

High Precision Radiotherapy

Background: Patients with renal transplant have a higher incidence of various malignancies. Delivery of adequate radiation dose to the pelvic target in such patients sparing the transplanted kidney is a dosimetric ordeal. Due to lack of sufficient data in the literature regarding the dose constraint of the transplanted pelvic kidney, plan evaluation becomes extremely challenging in this situation. Here we present comparative dosimetric plan evaluation data of treating a patient with carcinoma of the vulva with transplanted kidney. Methods: We compared 3D conformal radiotherapy (3DCRT) and Intensity Modulated Radiotherapy (IMRT) plans for a patient diagnosed to have carcinoma of the vulva with a transplanted kidney. Total dose of radiotherapy (63 Gy) was delivered in two phases (45 Gy in 25 fractions and 18 Gy in 10 fractions respectively). We compared dose to planning target volume (PTV), and dose to organs at risk including the transplanted kidney in these two techniques. The volumes encompassed by different isodoses (50%, 20%, 10%, 5%) were also compared. Weekly renal function test was monitored. Results: The dose received by 95% of the planning target volume in 3DCRT was 43.3 Gy (phase 1), 17.7 Gy (phase 2) and in IMRT was 43.74 Gy (phase 1), 17.3 Gy (phase 2). The mean doses received by kidney in Phase 1 3DCRT, Phase 1 IMRT, phase 2 3DCRT and phase 2 IMRT were 0.98 Gy, 3.05 Gy, 0.74 Gy, 0.13 Gy respectively. The volumes covered by 50%, 20%, 10%, 5% were higher with IMRT plan when compared with 3DCRT plans. The creatinine values remained stable through the treatment. Conclusion: Radiotherapy in renal transplanted patients can be done with high precision radiotherapy techniques with strict dosimetric and image guided set up verification.

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Indomethacin Treatment for Symptomatic Patent Ductus Arteriosus: A Double-Blind Control Study

PEDIATRICS ◽

10.1542/peds.67.5.647 ◽

1981 ◽

Vol 67 (5) ◽

pp. 647-652

Author(s):

Ruth M. Yanagi ◽

Allen Wilson ◽

Edgar A. Newfeld ◽

Kalim U. Aziz ◽

Carl E. Hunt

Keyword(s):

Patent Ductus Arteriosus ◽

Phase 1 ◽

Ductus Arteriosus ◽

Control Group ◽

Phase 2 ◽

Closure Rate ◽

Double Blind ◽

Double Blind Control Study ◽

Patent Ductus ◽

Indomethacin Treatment

A double-blind control study was designed to determine the efficacy and safety of indomethacin treatment of patients with symptomatic patent ductus arteriosus. Infants with severe respiratory distress syndrome and symptomatic patent ductus arteriosus were eligible for this prospective study if the ratio of left atrial/aortic root diameter remained ≥ 1.3:1 following a 24-hour period of medical management. Thirty-nine eligible infants were randomly assigned to the control or indomethacin group and given 0.2 mg/kg of enteral indomethacin or placebo in a double-blind manner. Second and third doses were administered at 24-hour intervals in phase 1 (17 patients), and at eight-hour intervals in phase 2 (22 patients). The 75% patent ductus arteriosus closure rate with indomethacin treatment in phase 1 was not statistically significant due to a 44% spontaneous closure rate in the control group. In phase 2, however, 85% of the indomethacin group demonstrated patent ductus arteriosus closure vs only 11% in the matched control group (P .01). Although no indomethacin side effects occurred in phase 1, in phase 2 indomethacin administration was associated with minimal, but statistically significant, transient impaired renal function and, in three infants (23%), mild upper gastrointestinal bleeding. In summary, enteral administration of three 0.2 mg/kg indomethacin doses at eight-hour intervals thus appears to be a safe and effective alternative to surgical closure.

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Capsaicin pretreatment attenuates monocrotaline-induced ventilatory dysfunction and pulmonary hypertension

Journal of Applied Physiology ◽

10.1152/jappl.1993.75.6.2781 ◽

1993 ◽

Vol 75 (6) ◽

pp. 2781-2788 ◽

Cited By ~ 11

Author(s):

K. R. Zhou ◽

Y. L. Lai

Keyword(s):

Pulmonary Hypertension ◽

Substance P ◽

Tissue Injury ◽

Phase 1 ◽

Weight Ratio ◽

Functional Study ◽

Control Group ◽

Neurokinin A ◽

Phase 2 ◽

Phase 3

In view of bronchoconstrictor and proliferative effects of tachykinins (TKs; mainly substance P and neurokinin A), as well as increased TK release during tissue injury, we hypothesized that monocrotaline (MCT)-induced ventilatory dysfunction and pulmonary hypertension may be mediated via TKs. In phase 1 of the study (n = 19 rats), we tested and found that elevated lung substance P level and suppressed neutral endopeptidase activity occurred 1–2 wk post-MCT (60 mg/kg sc). Both phase 2 (n = 32) and phase 3 (n = 32) young Sprague-Dawley rats were divided into five groups: control, sham, capsaicin, MCT, and capsaicin + MCT. Rats in the control group received no treatment. Each sham rat received the vehicles. Chronic capsaicin treatment was used to deplete neuropeptides. Each MCT rat received a single injection of MCT 1 wk (phase 2) or 3 wk (phase 3) before the functional study. Each capsaicin + MCT rat received the MCT administration 3 days after the completion of capsaicin pretreatment. In the MCT group, there were significant decreases in dynamic compliance, quasi-static compliance, and the maximal expiratory flow rate at 50% total lung capacity in phase 2, which was accompanied by significant increases in pulmonary arterial pressure, the weight ratio of right ventricle/(left ventricle + septum), and the arterial medial wall thickness in phase 3. In the capsaicin + MCT group, however, all the above MCT-induced changes were significantly attenuated or abolished. All values from the sham and capsaicin groups were not significantly different from those of the control group. These data demonstrate that MCT induces pneumotoxicity, accompanied by elevated levels of substance P in the lung.(ABSTRACT TRUNCATED AT 250 WORDS)

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Challenges and Successes in Raising a Child With Type 1 Diabetes and Autism Spectrum Disorder: Mixed Methods Study

Journal of Medical Internet Research ◽

10.2196/17184 ◽

2020 ◽

Vol 22 (6) ◽

pp. e17184

Author(s):

Tamara K Oser ◽

Sean M Oser ◽

Jessica A Parascando ◽

Lee Ann Grisolano ◽

Kanthi Bangalore Krishna ◽

...

Keyword(s):

Health Care ◽

Autism Spectrum Disorder ◽

Type 1 Diabetes ◽

Phase 1 ◽

Autism Spectrum ◽

Spectrum Disorder ◽

Barriers And Facilitators ◽

Phase 2 ◽

Web Based

Background Self-management of type 1 diabetes (T1D) requires numerous decisions and actions by people with T1D and their caregivers and poses many daily challenges. For those with T1D and a developmental disorder such as autism spectrum disorder (ASD), more complex challenges arise, though these remain largely unstudied. Objective This study aimed to better understand the barriers and facilitators of raising a child with T1D and ASD. Secondary analysis of web-based content (phase 1) and telephone interviews (phase 2) were conducted to further expand the existing knowledge on the challenges and successes faced by these families. Methods Phase 1 involved a qualitative analysis of publicly available online forums and blog posts by caregivers of children with both T1D and ASD. Themes from phase 1 were used to create an interview guide for further in-depth exploration via interviews. In phase 2, caregivers of children with both T1D and ASD were recruited from Penn State Health endocrinology clinics and through the web from social media posts to T1D-focused groups and sites. Interested respondents were directed to a secure web-based eligibility assessment. Information related to T1D and ASD diagnosis, contact information, and demographics were collected. On the basis of survey responses, participants were selected for a follow-up telephone interview and were asked to complete the adaptive behavior assessment system, third edition parent form to assess autism severity and upload a copy of their child’s most recent hemoglobin A1c (HbA1c) result. Interviews were transcribed, imported into NVivo qualitative data management software, and analyzed to determine common themes related to barriers and facilitators of raising a child with both ASD and T1D. Results For phase 1, 398 forum posts and blog posts between 2009 and 2016 were analyzed. Common themes related to a lack of understanding by the separate ASD and T1D caregiver communities, advice on coping techniques, rules and routines, and descriptions of the health care experience. For phase 2, 12 eligible respondents were interviewed. For interviewees, the average age of the child at diagnosis with T1D and ASD was 7.92 years and 5.55 years, respectively. Average self-reported and documented HbA1c levels for children with T1D and ASD were 8.6% (70 mmol/mol) and 8.7% (72 mmol/mol), respectively. Common themes from the interviews related to increased emotional burden, frustration surrounding the amount of information they are expected to learn, and challenges in the school setting. Conclusions Caregivers of children with both T1D and ASD face unique challenges, distinct from those faced by caregivers of individuals who have either disorder alone. Understanding these challenges may help health care providers in caring for this unique population. Referral to the diabetes online community may be a potential resource to supplement the care received by the medical community.

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