Using Existing Software Systems to Collect Outcome Data in Adult Day Services

Recently, there has been a resounding call for standardized outcome data collection in adult day services (ADS). Outcome data have the potential to demonstrate the effectiveness of ADS, aid in program development, and help leverage funding opportunities. Unfortunately, many ADS centers do not collect outcome data for several reasons, including the cost of data collection software and systems. In this presentation, we present one effort to utilize an existing multiuse ‘off the shelf’ software solution to collect ADS outcome data for a network of ADS providers. The researchers collaborated with software developers and ADS providers to adapt the software to incorporate outcome measures and reporting functionality on both the individual and program levels. Adaptation and adoption required attention to HIPAA compliance, workflow integration, measurement fidelity, and data management processes. Despite these challenges, adapting existing software systems may be a cost-effective way to enable expanded outcome data collection in ADS.

Building a National CML Registry

Background: Tyrosine kinase inhibitor (TKI) therapy has led to phenomenal improvement in overall survival for patients with CML. Since TKI therapies were introduced and their results observed, very little innovative research has been conducted in CML. However, several important research directions remain, including, evaluating attempts to truly cure CML, i.e., patients off therapy with no detectable disease, evaluating long-term side effects and improving health related quality of life for patients who are unable to discontinue TKIs, and treatment of patients who are resistant to TKIs. Given that CML is a rare disease, this can only be achieved with considerable collaboration amongst CML experts. Such a collaboration is ongoing in the US NIH-funded Life After Stopping TKIs (LAST) study, which directly led to establishing the H. Jean Khoury Cure CML Consortium (HJKC3, named after a founding member, the late H. Jean Khoury, MD). One of the goals of the HJKC3 is to establish a national CML registry. A registry would collect longitudinal patient information to meet the critical need for both early and late outcomes research. A national CML registry is likely the only viable mechanism for identifying this population, enumerating baseline information, and addressing critical questions regarding late outcomes that may otherwise never be answered. This registry would also serve several other goals. The first aim of this registry is to prospectively collect and evaluate patient and physician compliance with recommended monitoring guidelines. The second goal is to collect data on survivorship. Some CML medications are associated with increased cardiovascular risk, nephrotoxicity, and pulmonary complications. Ensuring adequate medical monitoring of these long-term side effects and appropriately intervening is crucial to improve survival in patients with CML. The third goal is collecting patient reported outcome data directly from patients and linking that to compliance, complications, and clinical outcomes data. Lastly, this registry would inform potential clinical trials. Methods: After obtaining IRB approval, a pilot CML registry was developed at our institution with the goal of establishing the architecture for the infrastructure for a national CML registry. During this pilot we had two primary aims: first, to establish the most practical and efficient method for clinical data collection and second, to build and pilot test patient-reported outcome data collection. Retrospective clinical data was collected using REDCap with two primary mechanisms to populate the data into REDCap: 1) direct extraction and transfer of the data from the EHR and 2) manual chart review and data abstraction for complex fields or fields that require clinical interpretation. Broad categories of data that can be extracted from EMR include demographics, prior medical diagnosis, medications, some lab data, and prescription fill history. Examples of those requiring manual chart review include toxicity data, response, and disease progression data. For prospective chart review and patient-reported outcome data collection, informed consent was obtained electronically. Patient-reported outcomes assessments were administered online by emailing the study subjects a link to access a secure REDCap platform hosted by the MCW (CTSI) Clinical and Translational Science Institute. Measures include PROMIS computerized adaptive tests and select additional measures assessing a broad range of physical, emotional, cognitive, and social health domains. Progress: We identified 164 patients with CML to evaluate for inclusion. Of these, 72 (44%) were non-evaluable due to death, not an established patients, or other reasons and were included retrospectively only, while 92 (56%) were identified as potentially eligible for retrospective and prospective data collection. An invitation to join that included consent was sent to the 72 patients who had agreed to be contacted by email. Of those, 50 consented and 45 completed the baseline PROs, representing a 63% response rate. At 6 months, 39 completed the PRO assessment, representing an 87% retention rate. Data regarding human resource utilization are being collected to inform expected overall costs for a national registry. The next step is to expand to other sites in the HJKC3. Disclosures Atallah: Jazz: Consultancy; Helsinn: Consultancy; Jazz: Consultancy; Helsinn: Consultancy; Novartis: Consultancy; Takeda: Consultancy, Research Funding; Pfizer: Consultancy. Shaw:Therakos: Other: Speaker Engagement.

MODEL PEMBENTUKAN KARAKTER RELIGIUS SANTRI TAHFIDZ ALQUR’AN DI PONDOK PESANTREN MATHALI’UL HUDA PUSAT KAJEN PATI

This writing is intended to review a formation model on religious student character for tahfidz at Mathali’ul Huda Boarding School, Kajen. This study is important since the implementation of character education at educational institution existing in Indonesia requires a good model, and boarding school is assessed able to become a good model in implementing the character education especially for a religious character. There are numerous schools unable to become a place to transfer knowledge and to form character of its student. This research includes type of onsite research using a verificative qualitative approach where the research is directly conducted at Mathali’ul Huda Boarding School by presenting theory to become a frame to analyze the research finding outcome. Data collection method used is carried out through interview, observation and documentation. Meanwhile, this research finds that there are five stages on the formation of the religious student of tahfidz at Mathali’ul Huda Boarding School, namely: 1. stage on religious character value knowledge; 2. stage on religious character value awareness; 3. stage on religious character implementation; 4. religious character habituation; fifth, stage on long life religious character preservation. AbstrakTulisan ini mengkaji tentang model pembentukan karakter religius santri tahfidz di Pondok Pesantren Mathali’ul Huda Pusat Kajen. Kajian ini penting, karena implementasi pendidikan karakter di lembaga pendidikan yang ada di Indonesia membutuhkan good model, dan pesantren dinilai mampu menjadi model yang baik dalam mengimplementasikan pendidikan karakter khususnya karakter religius. Selama ini banyak sekolah belum mampu menjadi tempat untuk memindahkan pengetahuan sekaligus membentuk karakter peserta didiknya. Penelitian ini termasuk dalam jenis penelitian lapangan yang menggunakan pendekatan kualitatif verifikatif, dimana peneliti terjun secara langsung di Pondok Pesantren Mathali’ul Huda dengan membawa teori yang dijadikan frame untuk menganalisa hasil temuan penelitian. Tekhnik pengambilan data yang digunakan adalah wawancara, observasi dan dokumentasi. Adapun hasil penelitian ini menemukan bahwa ada lima tahapan pembentukan karakter religius santri tahfidz di Pondok Pesantren Mathali’ul Huda Pusat, yaitu: 1. tahapan pengetahuan nilai karakter religius; 2. tahapan kesadaran nilai karakter religius; 3. tahapan pengamalan karakter religius; 4. tahapan pembiasaan karakter religius; kelima, tahapan penjagaan karakter religius sepanjang hayat.