User-centered design and enhancement of an electronic personal health record to support survivors of pediatric cancers.

PURPOSE: The objective of this article is to demonstrate how user-centered design theory and methods can be employed to develop and iteratively improve technologies to support survivors of childhood cancer. METHODS: Focus groups and structured interviews with young adult survivors of pediatric cancer (N = 3), parents (N = 11), and healthcare providers (N = 14) were conducted to understand their needs as potential users and the contexts in which they would use an electronic personal health record (PHR) for survivors, Cancer SurvivorLinkTM (https://cancersurvivorlink.org/). Usability evaluations were conducted to assess the functionality of the PHR using think aloud protocol with survivors/parents (N = 4) and focus groups with providers (N = 12). RESULTS: Major themes identified through the needs assessment guided design of the PHR, including (1) education about the lifelong healthcare needs of pediatric cancer survivors ("Learn"), (2) secure electronic storage for healthcare documents to direct long-term follow-up care ("Store"), and (3) communication functionality to allow sharing of health documents with healthcare providers ("Share"). Usability evaluations identified challenges with the PHR design, which informed site enhancements to improve PHR usefulness and ease of use including a registration wizard and healthcare provider directory. CONCLUSIONS: User-centered design methods informed iterative enhancements to an untethered, patient-controlled PHR to address usability barriers and meet the self-identified needs of survivors of childhood cancer and their providers.

Cardiac computed tomography in cardio-oncology: an update on recent clinical applications.

Chemotherapy and radiotherapy have drastically improved cancer survival, but they can result in significant short- and long-term cardiovascular complications, most commonly heart failure from chemotherapy, whilst radiotherapy increases the risk of premature coronary artery disease (CAD), valve, and pericardial diseases. Cardiac computed tomography (CT) with calcium scoring has a role in screening asymptomatic patients for premature CAD, cardiac CT angiography (CTCA) allows the identification of significant CAD, also in the acute settings where concerns exist towards invasive angiography. CTCA integrates the diagnostic work-up and guides surgical/percutaneous management of valvular heart diseases and allows the assessment of pericardial conditions, including detection of effusion and pericardial calcification. It is a widely available and fast imaging modality that allows a one-step evaluation of CAD, myocardial, valvular, and pericardial disease. This review aims to provide an update on its current use and accompanying evidence-base for cardiac CT in the management of cardio-oncology patients.

Findings and lessons learnt from early termination of a pragmatic comparative effectiveness trial of video consultations in home-based palliative care.

BACKGROUND: Health systems need evidence about how best to deliver home-based palliative care (HBPC) to meet the growing needs of seriously ill patients. We hypothesised that a tech-supported model that aimed to promote timely inter-professional team coordination using video consultation with a remote physician while a nurse is in the patient's home would be non-inferior compared with a standard model that includes routine home visits by nurses and physicians. METHODS: We conducted a pragmatic, cluster randomised non-inferiority trial across 14 sites (HomePal Study). Registered nurses (n=111) were randomised to the two models so that approximately half of the patients with any serious illness admitted to HBPC and their caregivers were enrolled in each study arm. Process measures (video and home visits and satisfaction) were tracked. The primary outcomes for patients and caregivers were symptom burden and caregiving preparedness at 1-2 months. RESULTS: The study was stopped early after 12 months of enrolment (patients=3533; caregivers=463) due to a combination of low video visit uptake (31%), limited substitution of video for home visits, and the health system's decision to expand telehealth use in response to changes in telehealth payment policies, the latter of which was incompatible with the randomised design. Implementation barriers included persistent workforce shortages and inadequate systems that contributed to scheduling and coordination challenges and unreliable technology and connectivity. CONCLUSIONS: We encountered multiple challenges to feasibility, relevance and value of conducting large, multiyear pragmatic randomised trials with seriously ill patients in the real-world settings where care delivery, regulatory and payment policies are constantly shifting.

Scalability of cancer SurvivorLink™: A cluster randomized trial among pediatric cancer clinics.

BACKGROUND: Children diagnosed with cancer are living longer and the survivor population is growing. However, most survivors develop late effects of radiation and chemotherapy shortly to years after completion of therapy, and the receipt of follow-up visits that are recommended by the Children's Oncology Group (COG) is suboptimal nationally. AIMS: The aims of this study are to: 1) evaluate the impact of a patient-controlled electronic personal health record (ePHR) and system (SurvivorLink) on care visit attendance, risk-based surveillance, and other secondary outcomes (i.e., patient activation, quality of life (QOL)); 2) measure the use, acceptability, and perceived usefulness of, and satisfaction with SurvivorLink; and 3) assess facilitators and barriers to implementation. METHODS: This hybrid effectiveness-implementation, clustered randomized control trial (RCT) evaluates the effect of SurvivorLink among pediatric cancer survivors and their parents on receipt of follow-up cancer care. We will recruit 20 pediatric survivor clinics with half receiving the intervention and half acting as a waitlist control. Parents of survivors and survivors will complete baseline, 3 and 12 month surveys that assess SurvivorLink use, patient self-efficacy, and intentions to return for follow-up. We will use mixed methods and multi-informant assessment to assess implementation outcomes (i.e., acceptability, feasibility, appropriateness). DISCUSSION: New approaches are needed to facilitate the receipt of long-term follow-up care among pediatric cancer survivors. This study will assess whether SurvivorLink is effective in increasing receipt of follow-up cancer care. Moreover, it will explore the influences of context and other moderators of clinical practice change in pediatric cancer survivorship.

Protocol for a Noninferiority Comparative Effectiveness Trial of Home-Based Palliative Care (HomePal).

Introduction: As health care systems strive to meet the growing needs of seriously ill patients with high symptom burden and functional limitations, they need evidence about how best to deliver home-based palliative care (HBPC). We compare a standard HBPC model that includes routine home visits by nurses and prescribing clinicians with a tech-supported model that aims to promote timely interprofessional team coordination using video consultation with the prescribing clinician while the nurse is in the patient's home. We hypothesize that tech-supported HBPC will be no worse compared with standard HBPC. Methods: This study is a pragmatic, cluster randomized noninferiority trial conducted across 14 Kaiser Permanente sites in Southern California and the Pacific Northwest. Registered nurses (n = 102) were randomized to the two models so that approximately half of the participating patient-caregiver dyads will be in each study arm. Adult English or Spanish-speaking patients (estimate 10,000) with any serious illness and a survival prognosis of 1-2 years and their caregivers (estimate 4800) are being recruited to the HomePal study over ∼2.5 years. The primary patient outcomes are symptom improvement at one month and days spent at home. The primary caregiver outcome is perception of preparedness for caregiving. Study Implementation-Challenges and Contributions: During implementation we had to balance the rigors of conducting a clinical trial with pragmatic realities to ensure responsiveness to culture, structures, workforce, workflows of existing programs across multiple sites, and emerging policy and regulatory changes. We built close partnerships with stakeholders across multiple representative groups to define the comparators, prioritize and refine measures and study conduct, and optimize rigor in our analytical approaches. We have also incorporated extensive fidelity monitoring, mixed-method implementation evaluations, and early planning for dissemination to anticipate and address challenges longitudinally. Trial Registration: ClinicalTrials.gov: NCT#03694431.

Maximizing your investment in EHR. Utilizing EHRs to inform continuous quality improvement.

Many care providers are implementing EHR to improve safety, quality and efficiency of patient care. In addition to the benefits reported in previous studies, EHRs provide a foundation that facilitates quality improvement in healthcare. While quality improvement methods are increasingly being applied in healthcare, these methods depend on having reliable data on key structure, process and outcome measures. One challenge quality improvement projects face is finding timely, cost-effective ways to measure and monitor care processes. This article presents a framework for measurement in healthcare and describes how EHRs provide the infrastructure necessary to measure care processes. In addition, a case study contrasts measurement challenges faced by one hospital system prior to EHR implementatiol with simplified measurement processes enabled through EHR. Utilizing EHR as a measurement tool to enable ongoing quality improvement efforts enables care providers to increase the value they receive from investing in EHR.

Meaningful Use of an Electronic Personal Health Record (ePHR) among Pediatric Cancer Survivors.

Background and Objectivs: Survivors of pediatric and adolescent cancer are at an increased risk of chronic and debilitating health conditions and require life-long specialized care. Stand-alone electronic personal health records (ePHRs) may aid their self-management. This analysis characterizes young adult survivors and parents who meaningfully use an ePHR, Cancer SurvivorLinkTM, designed for survivors of pediatric and adolescent cancer. METHODS: This was a retrospective observational study of patients seen at a pediatric survivor clinic for annual survivor care. Young adult survivors and/or parent proxies for survivors <18 years old who completed ePHR registration prior to their appointment or within 90 days were classified as registrants. Registrants who uploaded or downloaded a document and/or shared their record were classified as meaningful users. RESULTS: Overall, 23.7% (148/624) of survivors/parents registered and 38% of registrants used SurvivorLink meaningfully. Young adult registrants who transferred to adult care during the study period were more likely to be meaningful users (aOR: 2.6 (95% CI: 1.1, 6.1)) and used the ePHR twice as frequently as those who continued to receive care in our institution's pediatric survivor clinic. Among survivors who continued to receive care at our institution, being a registrant was associated with having an annual follow-up visit (aOR: 2.6 (95% CI: 1.2, 5.8)). CONCLUSIONS: While ePHRs may not be utilized by all survivors, SurvivorLink is a resource for a subset and may serve as an important bridge for patients who transfer their care. Using SurvivorLink was also associated with receiving recommended annual survivor care.

Predictors of successful use of a web-based healthcare document storage and sharing system for pediatric cancer survivors: Cancer SurvivorLink™.

PURPOSE: Cancer SurvivorLink™, www.cancersurvivorlink.org , is a patient-controlled communication tool where survivors can electronically store and share documents with healthcare providers. Functionally, SurvivorLink serves as an electronic personal health record-a record of health-related information managed and controlled by the survivor. Recruitment methods to increase registration and the characteristics of registrants who completed each step of using SurvivorLink are described. METHODS: Pediatric cancer survivors were recruited via mailings, survivor clinic, and community events. Recruitment method and Aflac Survivor Clinic attendance was determined for each registrant. Registration date, registrant type (parent vs. survivor), zip code, creation of a personal health record in SurvivorLink, storage of documents, and document sharing were measured. Logistic regression was used to determine the characteristics that predicted creation of a health record and storage of documents. RESULTS: To date, 275 survivors/parents have completed registration: 63 were recruited via mailing, 99 from clinic, 56 from community events, and 57 via other methods. Overall, 66.9 % registrants created a personal health record and 45.7 % of those stored a health document. There were no significant predictors for creating a personal health record. Attending a survivor clinic was the strongest predictor of document storage (p < 0.01). Of those with a document stored, 21.4 % shared with a provider. CONCLUSIONS: Having attended survivor clinic is the biggest predictor of registering and using SurvivorLink. IMPLICATIONS FOR CANCER SURVIVORS: Many survivors must advocate for their survivorship care. Survivor Link provides educational material and supports the dissemination of survivor-specific follow-up recommendations to facilitate shared clinical care decision making.

Primary care providers as partners in long-term follow-up of pediatric cancer survivors.

PURPOSE: To develop a model of shared healthcare delivery that includes primary care providers (PCP) and ensures best practice in follow-up of pediatric cancer survivors. METHOD: Structured interviews with healthcare professionals (HCPs) were used to ascertain familiarity and confidence in providing care to survivors. Partnerships were made with HCP societies, and survivor care lectures were given at HCP meetings. HCP's preferences for ongoing continuing education (CE) opportunities were ascertained. Cancer SurvivorLink(TM), a web-based tool, was developed to allow patients to securely store their healthcare documents and share them electronically with registered HCPs. Educational material developed for Cancer SurvivorLink(TM) includes CE modules and QuickFacts--concise summaries of late effects. Website utilization was monitored utilizing Google Analytics. RESULTS: HCPs described moderate to very low familiarity with survivor care, but high interest in online CE learning. Thirty-one lectures were given to HCP groups to increase awareness. Preferred types of ongoing CE were: lectures, online text, and video modules. CE material was developed based on feedback from HCPs and website utilizations and includes 19 QuickFacts and 5 CE modules. During the first year, the website had 471 unique visitors and 1,129 total visits. QuickFacts received 345 views with Neurocognitive, Survivor Care 101, and Endocrine being most visited, and 49 CME modules have been completed. CONCLUSIONS: PCPs are interested in partnering in models of shared care for pediatric cancer survivors. Effective educational initiatives include lectures within HCP's professional education constructs and web-based CE opportunities. PCP involvement in survivor care alleviates some barriers to care such as geographic distance to the the cancer center and ensures that more pediatric cancer survivors receive recommended coordinated surveillance for late effects of cancer therapy.

Implementing a pharmacy system: facilitators and barriers.

To describe facilitators and barriers to the implementation of an inpatient pharmacy system at two pediatric hospitals. Interviews, pre- and post-implementation, were conducted with pharmacy and clinical managers. Key findings from the pre-implementation survey were included in the post-implementation survey to further assess facilitators and barriers to the adoption of a pharmacy system. The majority of pharmacy participants and all clinical leaders believed that project goals were being met. Pharmacist's described staff readiness-to-change as the most significant facilitator to adoption and concerns with the usability of information in the pediatric drug file as the most significant barrier. Clinical managers described system training and education as the most significant facilitator to adoption and adjustment to new work processes as the most significant barrier. We described major facilitators and barriers to the adoption of an inpatient pharmacy system at two pediatric hospitals. Strategies identified by our informants to overcome barriers may promote successful pharmacy implementations at other pediatric facilities.