Appendectomy Versus Observation for Appendicitis in Neutropenic Children With Cancer.

BACKGROUND: Optimal management of neutropenic appendicitis (NA) in children undergoing cancer therapy remains undefined. Management strategies include upfront appendectomy or initial nonoperative management. We aimed to characterize the effect of management strategy on complications and length of stay (LOS) and describe implications for chemotherapy delay or alteration. METHODS: Sites from the Pediatric Surgery Oncology Research Collaborative performed a retrospective review of children with NA over a 6-year period. RESULTS: Sixty-six children, with a median age of 11 years (range 1-17), were identified with NA while undergoing cancer treatment. The most common cancer diagnoses were leukemia (62%) and brain tumor (12%). Upfront appendectomy was performed in 41% of patients; the remainder had initial nonoperative management. Rates of abscess or perforation at diagnosis were equivalent in the groups (30% vs 24%; P = .23). Of patients who had initial nonoperative management, 46% (17 of 37) underwent delayed appendectomy during the same hospitalization. Delayed appendectomy was due to failure of initial nonoperative management in 65% (n = 11) and count recovery in 35% (n = 6). Cancer therapy was delayed in 35% (n = 23). Initial nonoperative management was associated with a delay in cancer treatment (46% vs. 22%, P = .05) and longer LOS (29 vs 12 days; P = .01). Patients who had initial nonoperative management and delayed appendectomy had a higher rate of postoperative complications (P < .01). CONCLUSIONS: In pediatric patients with NA from oncologic treatment, upfront appendectomy resulted in lower complication rates, reduced LOS, and fewer alterations in chemotherapy regimens compared to initial nonoperative management.

Considerations to Support Use of Patient-Reported Outcomes Measurement Information System Pediatric Measures in Ambulatory Clinics.

OBJECTIVE: To identify challenges to the use of Patient-Reported Outcomes Measurement Information System (PROMIS) Pediatric measures in the ambulatory pediatric setting and possible solutions to these challenges. STUDY DESIGN: Eighteen semistructured telephone interviews of health system leaders, measurement implementers, and ambulatory pediatric clinicians were conducted. Five coders used applied thematic analysis to iteratively identify and refine themes in interview data. RESULTS: Most interviewees had roles in leadership or the implementation of patient-centered outcomes; 39% were clinicians. Some had experience using PROMIS clinically (44%) and 6% were considering this use. Analyses yielded 6 themes: (1) selection of PROMIS measures, (2) method of administration, (3) use of PROMIS Parent Proxy measures, (4) privacy and confidentiality of PROMIS responses, (5) interpretation of PROMIS scores, and (6) using PROMIS scores clinically. Within the themes, interviewees illuminated specific unique considerations for using PROMIS with children, including care transitions and privacy. CONCLUSIONS: Real-world challenges continue to hamper PROMIS use. Ongoing efforts to disseminate information about the integration of PROMIS measures in clinical care is critical to impacting the health of children.

Teamwork in prognostic communication: Addressing bottlenecks and barriers.

Prognostic communication is essential to family-centered care in pediatric oncology. Yet, prognostic communication from the medical team to the family is often absent or incomplete. In our experience, many clinical groups view prognostic disclosure as the responsibility of the patient's primary oncologist, and nurses are often excluded from these conversations. This current individual-based model of prognostic disclosure lacks redundancy and creates a communication bottleneck. We propose that clinical groups should address prognostic communication with a multidisciplinary team-based approach that incorporates three critical components: shared team mental models, distribution and redundancy in role assignment, and high fidelity monitoring of communication milestones.

Effective Communication for Newly Diagnosed Pediatric Patients With Cancer: Considerations for the Patients, Family Members, Providers, and Multidisciplinary Team.

Hearing that a child has been diagnosed with cancer is invariably difficult for both patients and their caregivers. Effective communication among patients, caregivers, and medical teams is necessary not only to deliver information and facilitate cancer care delivery but also to support patient and family coping and well-being. In this review, we focus on early communication in pediatric oncology care to (1) highlight the importance of communication between clinicians and patients and within the medical team and (2) describe resources and opportunities for clinicians to improve communication skills. For example, communication between patients and the medical team has several core functions, including the development of shared knowledge and decision-making and the formation of a therapeutic relationship. High-quality communication, regardless of the news being shared, supports and facilitates patient and parent adjustment to diagnosis, hope, and trust. Communication within the medical team supports the delivery of high-quality, personalized care. Despite these critical roles of communication in pediatric cancer care and evidence suggesting communication skills can be learned, formal training is limited. Resources include educational efforts, practical tools, and specific strategies to enhance systematic multidisciplinary team communication. Taken together, continued recognition of the importance of communication in pediatric cancer care has the potential to improve patient, family, and clinician experiences.

Education Milestones for Newly Diagnosed Pediatric, Adolescent, and Young Adult Cancer Patients: A Quality Improvement Initiative.

The diagnosis of cancer in a child, adolescent, or young adult is an emotionally overwhelming time. To improve the quality of education and support provided to patients and caregivers with a new cancer diagnosis, we executed a quality improvement initiative to (a) define key education milestones for the delivery of essential education during the first 2 months following diagnosis and (b) to define role accountability within the multidisciplinary team for delivery of content and execution of tasks. To develop education milestones, we (a) identified educational content from review of the literature, (b) determined the sequence of content delivery through qualitative interviews with patients and caregivers, and (c) developed education milestones by evaluation of existing workflows. To develop task lists, we (a) determined which multidisciplinary team member was best suited to deliver specific content and (b) defined discrete tasks required to execute education milestones. Key content topics and preferred sequence are as follows: Emotional Adjustment to Diagnosis, When and How to Call the Doctor, Medication Management, Practical Needs, Line Care, and Access to Nontherapeutic Clinical Trials. Eight education milestones were defined across the initial 2 months following cancer diagnosis. The education milestones are paired with task lists. The education milestones and task lists guide the execution of complex education across a multidisciplinary service line in an emotionally challenging time. Early information focuses on essential content, role responsibility is clearly defined, and psychosocial support services are purposefully and iteratively integrated into care during the initial weeks following a cancer diagnosis.

Child and parent preferences for graphical display of patient-reported outcome data.

Patient-reported outcome measures (PROs) generate reproducible, objective measures of patient functioning and symptoms. Clinical PRO use has proven benefits. Parent and child preferences for the graphical display of PRO data are not known. We conducted a qualitative study to determine preferences for graphical display of PRO data for use in the clinical setting. Participants were shown line graphs depicting a patient's PRO score with variations in orientation, shading and text. Final consensus graphs were elicited. Participants selected the graph with the highest level of visual and text interpretation of PRO scores.

Patient-reported health status during pediatric cancer treatment.

BACKGROUND: Changes in patient function and factors affecting pediatric patients with cancer during treatment are largely unknown. The purpose of this study was to measure patient-reported outcomes (PROs) in children during the initial 6 months of therapy to characterize function and explore factors associated with function including type of cancer, intensity of therapy, age, and gender. PROCEDURE: We conducted a prospective cohort study of children aged 5-21 newly diagnosed with cancer. PROs were obtained twice monthly over the first 6 months of treatment. The Patient-Reported Outcome Measurement Information System (PROMIS) was used to measure patient mobility, fatigue, pain interference, peer relationships, anxiety, and depressive symptoms. A generalized linear mixed model was used to analyze changes by domain over time. RESULTS: Forty patients completed the study with a mean age of 11.7 years (standard deviation [SD] 4.7), 60% had leukemia/lymphoma. All patients report improved pain over time (P = 0.008). Patients with central nervous system (CNS)/solid tumor report better mobility (P < 0.001), less fatigue (P < 0.001), less pain (P < 0.001), less anxiety (P < 0.001), fewer depressive symptoms (P < 0.001), and better peer relationships (P = 0.0036). Younger patients report worse mobility (P = 0.017), more fatigue (P = 0.032), more pain (P < 0.001), more anxiety (P = 0.017), and more depressive symptoms (P = 0.005). CONCLUSIONS: Pain improved for all patients over the first 6 months of cancer treatment. Age and tumor type also affected patient-reported function for all domains. Understanding the burden of cancer treatment is critical to refine supportive care interventions to minimize the burden of pediatric cancer treatment.

Patient/Family Education for Newly Diagnosed Pediatric Oncology Patients.

There is a paucity of data to support evidence-based practices in the provision of patient/family education in the context of a new childhood cancer diagnosis. Since the majority of children with cancer are treated on pediatric oncology clinical trials, lack of effective patient/family education has the potential to negatively affect both patient and clinical trial outcomes. The Children's Oncology Group Nursing Discipline convened an interprofessional expert panel from within and beyond pediatric oncology to review available and emerging evidence and develop expert consensus recommendations regarding harmonization of patient/family education practices for newly diagnosed pediatric oncology patients across institutions. Five broad principles, with associated recommendations, were identified by the panel, including recognition that (1) in pediatric oncology, patient/family education is family-centered; (2) a diagnosis of childhood cancer is overwhelming and the family needs time to process the diagnosis and develop a plan for managing ongoing life demands before they can successfully learn to care for the child; (3) patient/family education should be an interprofessional endeavor with 3 key areas of focus: (a) diagnosis/treatment, (b) psychosocial coping, and (c) care of the child; (4) patient/family education should occur across the continuum of care; and (5) a supportive environment is necessary to optimize learning. Dissemination and implementation of these recommendations will set the stage for future studies that aim to develop evidence to inform best practices, and ultimately to establish the standard of care for effective patient/family education in pediatric oncology.

Patient-reported outcomes in clinical practice.

Patient-reported outcome (PRO) measurement plays an increasingly important role in health care and understanding health outcomes. PROs are any report of a patient's health status that comes directly from the patient, and can measure patient symptoms, patient function, and quality-of-life. PROs have been used successfully to assess impairment in a clinical setting. Use of PROs to systematically quantify the patient experience provides valuable data to assist with clinical care; however, initiating use of PROs in clinical practice can be daunting. Here we provide suggestions for implementation of PROs and examples of opportunities to use PROs to tailor individual patient therapy to improve patient outcomes, patient-physician communication, and the quality of care for hematology/oncology patients.

Vitamin B12 deficiency: the great masquerader.

Vitamin B12 deficiency is rare in children, with nonspecific symptoms including failure to thrive, vomiting, anorexia, and neurologic changes with or without hematologic disturbances. The neuropathy can be severe and irreversible. We report four cases of children with B12 deficiency secondary to adult type pernicious anemia, a presumed transport protein abnormality, and a metabolic defect. All demonstrated neurologic compromise that improved after initiation of B12 therapy. Hematologic manifestations may be preceded by constitutional, gastrointestinal, or neurologic changes, and must raise concern for B12 deficiency. Therapy should be initiated promptly in this setting to prevent irreversible neuropathy.