Sickle cell disease (SCD) is an inherited blood disorder that affects about 100,000 people in the U.S., primarily Blacks/African-Americans. A multitude of complications negatively impacts quality of life. Hydroxyurea has been FDA approved since 1998 as a disease-modifying therapy for SCD, but is underutilized. Negative and uninformed perceptions of hydroxyurea and barriers to its use hinder adherence and promotion of the medication. As the largest real-world study to date that assessed hydroxyurea use for children and adults with SCD, we gathered and analyzed perspectives of providers, individuals with SCD, and families. Participants provided information about socio-demographics, hospital and emergency admissions for pain, number of severe pain episodes interfering with daily activities, medication adherence, and barriers to hydroxyurea. Providers reported on indications for hydroxyurea, reasons not prescribed, and current laboratory values. We found that hydroxyurea use was reported in over half of eligible patients from this large geographic region in the U.S., representing a range of sickle cell specialty clinical settings and practices. Provider and patient/caregiver reports about hydroxyurea use were consistent with one another; adults 26 years and older were least likely to be on hydroxyurea; and the likelihood of being on hydroxyurea decreased with one or more barriers. Using the intentional and unintentional medication nonadherence framework, we found that, even for patients on hydroxyurea, challenges to taking the medicine at the right time and forgetting were crucial unintentional barriers to adherence. Intentional barriers such as worry about side effects and “tried and it did not work” were important barriers for young adults and adults. For providers, diagnoses other than HgbSS or HgbS-β0 thalassemia were associated with lower odds of prescribing, consistent with evidence-based guidelines. Our results support strengthening provider understanding and confidence in implementing existing SCD guidelines, and the importance of shared decision making. Our findings can assist providers in understanding choices and decisions of families; guide individualized clinical discussions regarding hydroxyurea therapy; and help with developing tailored interventions to address barriers. Addressing barriers to hydroxyurea use can inform strategies to minimize similar barriers in the use of emerging and combination therapies for SCD.
203 Background: Defining and quantifying quality care is a challenge for cancer care providers. Since 2007 St. Luke’s Mountain States Tumor Institute (MSTI) has been participating in QOPI and was one of 23 practices that received the inaugural QOPI Certification in June 2010. The goal of participation is to benchmark MSTI’s performance with oncology practices across the nation and identify areas for improvement that are recognized as national quality standards. Methods: After each round of QOPI data abstraction, physician and administrative leadership selected measures with the greatest opportunity for improvement. Monthly chart audits for each measure were completed and the results were shared with individual staff to increase education and accountability. In Spring 2010, the education assessment in MSTI’s Electronic Medical Record (EMR) was redesigned to facilitate efficient documentation and data collection of smoking cessation counseling. In July 2011, the performance improvement (PI) team created “Quality Checklists (QCL)” in MSTI’s EMR for three different QOPI measures: i) signed chemotherapy consent, ii) smoking cessation counseling, and iii) assessment of emotional well-being. To ensure signed chemotherapy consent, one QCL included a reminder sent by the primary nurse or secretary to the chemotherapy infusion nurses. To ensure smoking cessation counseling and assessment of emotional well-being by social work, the other QCL included an alert sent by the new patient representative to the primary nurse and social worker. Results: Signed chemotherapy consent improved from 10% (n=229) in 2007 to 100% (n=117) in 2012. Smoking cessation counseling improved from 13% (n=40) in 2007 to 93% (n=272) in 2012. Assessment of emotional well-being improved from 78% (n=302) in 2007 to 95% (n=120) in 2012. Of the patients that had problems with emotional well-being, 73% (n=55) in 2007 had their problems addressed and 95% (n=41) in 2012. Conclusions: QOPI has provided MSTI with the initiatives and benchmarks to quantify quality cancer care. By combining participation in QOPI and ongoing PI data collection, analysis, and action plan implementation MSTI has enjoyed marked improvements in quality.
288 Background: Access to qualified genetics specialists continues to be a barrier for patients in rural settings. Our institution aimed to develop a proof-of-concept telehealth program that supports the vision of transforming the way healthcare is delivered specific to Idaho. Methods: Based on a needs assessment with 40 direct caregivers the program was designed to eliminate inconsistency and variation through the system and expand the specialty care footprint from the tertiary care hospital. To gain traction, specific areas (genetic counseling and nutritional counseling) were identified that could move forward with telehealth. This small-scale implementation could be rapidly executed using few system resources while providing feedback for future refinement and expansion. Technology needs included, Microsoft Lync, a HD web camera, USB speaker/microphone, dual monitors, and a document camera to be added to workstations for the provider. A transportable cart with computer and dual monitor workstation was assembled for the outreach site with the same technology components. The metrics chosen to track the benefits of this service included: provider travel time and costs, elapsed time from referral to first scheduled appointment, comparison of patient volumes, and patient satisfaction. Satisfaction measures were collected by written questionnaires and interviews with the patient. Results: During a 3-month period 23 genetic counseling appointments were conducted by telehealth. This resulted in a savings of $1050.63 in mileage and travel wages and 13.5 travel hours. Wait times for appointments dropped from 23 days to 16 days, and appointment volumes increased from 6/month to 8/month. Access to services increased from 8 hours per month to 16 variable hours per month with the availability of immediate needs appointments. Patient scores (N=12) demonstrated “Excellent” ratings (5/5) in the following: 83% satisfaction using the telehealth cart, 83% likelihood to use telehealth again, and 92% recommend telehealth to a friend. Conclusions: Improved convenience, access, and cost savings while providing high quality care were maintained using telehealth. Expansion of the program to another outreach site has already been approved by leadership.
107 Background: NCCN and the Institute of Medicine recommend distress screening for all cancer patients. Surveys have found that 20% to 47% of newly diagnosed and recurrent cancer patients experience significant levels of distress. Less than half of distressed patients with cancer are actually identified and referred for psychosocial help. The development of screening tools, processes, appropriate timing, and systems for follow up on concerns is an ongoing challenge for many cancer programs. Mountain States Tumor Institute p,iloted a distress screen process as part of our work with NCCCP. Methods: From October 24, 2011, to April 30, 2012, 133 patients completed distress screens. Most frequently reported concerns included fatigue (50%), sleep changes (32%), and anxiety/worry (31%). 51% of patients reported three or more concerns. 90% of all patients reporting anxiety also reported fatigue or sleep problems. All patients who reported concerns were offered social work and other supports. Screens were reviewed by social workers and discussed at weekly multidisciplinary psychosocial care rounds by social workers, psychiatrist, nurse practitioners, and chaplains. A variety of interventions were used to respond to distress including symptom management, education and referrals to on-site social workers, chaplains, supportive care clinic, integrative medicine and psychiatry. Results: A task was created in Mosaiq Electronic Medical Record to cue Health Information Specialists to schedule patients for distress screening as close as possible to 45 days from first chemotherapy treatment. Patients completed screens before seeing their medical provider. The majority of patients screened received one or more interventions in follow-up. Conclusions: EMRs can be effective tools to cue scheduled screening of patient distress. The use of multidisciplinary psychosocial care rounds can effectively help clinics plan interventions to alleviate patient distress. The use of rounds can ensure staff from different disciplines are not duplicating efforts and can help determine appropriate timing of various psychosocial interventions. Project funded with Federal funds from the NCI, Contract No HHSN261200800001E.
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