Significant improvement of child physical and emotional functioning after familial haploidentical stem cell transplant.

Allogeneic stem cell transplantation (AlloSCT) represents the only curative therapy for sickle cell disease (SCD). However, limited availability of matched related donors and suboptimal outcomes following AlloSCT with unrelated donors has led to investigation of alternative donors. Among children with high-risk SCD, we evaluated health-related quality of life (HRQoL) impact in the two years following familial haploidentical SCT.

Perceptions of Role in Treatment Decision Making and Understanding of Late Effects Among Hodgkin Lymphoma Survivors: Results From a National Survey HL Decision Making and Late Effects.

Background: Hodgkin Lymphoma (HL) survivors are at risk of treatment-related late effects (LEs). With these potential risks and increasing numbers of treatment options for newly diagnosed patients, communication and shared decision making are essential to supporting patients throughout the cancer care continuum. We aimed to gather perspectives of HL survivors about their actual role in treatment decision making and their understanding of LEs.

Assessment of patients' understanding of and adherence to oral anticancer medication (OAM): Results of a cross-sectional institutional pilot study.

Background: Although oral anticancer medications (OAM) provide opportunity for treatment at home, challenges include prescription filling, monitoring side effects, safe handling, and adherence. We assessed understanding of and adherence to OAM in vulnerable patients.

Methods: This 2018 pilot study defined vulnerable patients based on Chinese language, older age (≥65 years), and subsidized insurance.

Enhancing patients' understanding of and adherence to oral anticancer medication: Results of a longitudinal pilot intervention.

Background: Oral anticancer medications (OAM) make administration more convenient for patients, but shifts the responsibility of care from clinical providers to the patients themselves. Following an institutional pilot study showing inadequate understanding and adherence among vulnerable patients taking OAM, a longitudinal intervention was developed using an oncology specialty pharmacist and medication navigators to enhance OAM understanding and adherence.

Methods: Patients initiating OAM were approached for four formalized teaching and check-in sessions, supplemented with medication information sheets and individualized calendars.

The Creation of a Comprehensive Adolescent and Young Adult Cancer Survivorship Program: "Lost in Transition" No More.

The Reid R. Sacco AYA Cancer Program set out to improve survivorship care for AYA-aged patients (15-39 years) of pediatric or AYA cancer. This article discusses the steps in establishing the clinic, including the creation of a database on cancer history, exposures, and attendant risks of late effects.

Time to diagnostic resolution after an uncertain screening mammogram in an underserved population.

Background: Screening mammography has reduced breast cancer-associated mortality worldwide. Approximately 10% of patients require further diagnostic testing after an uncertain screening mammogram (Breast imaging reporting and data system [BI-RADS] = 0), and time to diagnostic resolution varies after BI-RADS = 0 screening mammogram. There is little data about factors associated with diagnostic resolution in patients of Chinese origin ("Chinese") receiving care in the US.

Assessment of health-related quality of life among adults hospitalized with sickle cell disease vaso-occlusive crisis.

Sickle cell disease (SCD) is characterized by painful vaso-occlusive crises (VOCs). Self-reported pain intensity is often assessed with the Numeric Rating Scale (NRS), whereas newer patient-reported outcome measures (PROMs) assess multidimensional pain in SCD. We describe pain experiences among hospitalized adults with VOCs, using 2 PROMs: the Patient-Reported Outcomes Measurement Information System (PROMIS) Global Health and the Adult Sickle Cell Quality of Life Measurement System (ASCQ-Me).

Timeliness of Treatment Initiation in Newly Diagnosed Patients With Breast Cancer.

Background: Evidence-based timeliness benchmarks have been established to assess quality of breast cancer care, as delays in treatment are associated with poor clinical outcomes. However, few studies have evaluated how current breast cancer care meets these benchmarks and what factors may delay the timely initiation of treatment.

Patients And Methods: Demographic and disease characteristics of 377 newly diagnosed patients with breast cancer who initiated treatment at Tufts Medical Center (2009-2015) were extracted from electronic medical records.

Pediatric Specialty Care Model for Management of Chronic Respiratory Failure: Cost and Savings Implications and Misalignment With Payment Models.

Objective: To describe program design, costs, and savings implications of a critical care-based care coordination model for medically complex children with chronic respiratory failure.

Design: All program activities and resultant clinical outcomes were tracked over 4 years using an adapted version of the Care Coordination Measurement Tool. Patient characteristics, program activity, and acute care resource utilization were prospectively documented in the adapted version of the Care Coordination Measurement Tool and retrospectively cross-validated with hospital billing data.

Chronic respiratory failure: Utilization of a pediatric specialty integrated care program.

Objective: Describe utilization and satisfaction in a specialty integrated care program for children with severe, chronic respiratory insufficiency (CRI).

Subjects: Enrollees of the Critical Care, Anesthesia, Perioperative Extension (CAPE) and Home Ventilation Program.

Methods: Children with CRI received home visits, care coordination, and "on-demand" 24/7 access to physicians.

Predicting Health Care Utilization for Children With Respiratory Insufficiency Using Parent-Proxy Ratings of Children's Health-Related Quality of Life.

Introduction: Children with chronic respiratory insufficiency and mechanical ventilation often experience acute illnesses requiring unscheduled hospitalizations. Health-related quality of life (HRQL) may predict future health care utilization.

Methods: Participants were 30 days to 22 years old with chronic respiratory insufficiency (N = 120).

Leveraging pediatric PROMIS item banks to assess physical functioning in children at risk for severe functional loss.

Background: Pediatric neuromuscular illnesses often result in decreased health-related quality of life (HRQL), notably in physical functioning. Generic HRQL measures have been developed for use in general populations, but may not adequately assess patients with severe functional loss. To address this measurement gap, we created two custom parent-proxy physical functioning short forms for use among children at risk for low levels of functioning, using pediatric Patient Reported Outcomes Measurement Information System (PROMIS) item banks for Upper Extremity and Mobility.

The Impact on Family of Pediatric Chronic Respiratory Failure in the Home.

Objective: To assess the family impact of managing severe, chronic respiratory failure (CRF) at home. Better understanding will inform parental counseling and serve as a point of reference for interventions.

Study Design: Families of children with CRF completed the Impact on Family Scale (IFS) and Consumer Assessment of Healthcare Providers and Systems.