Feasibility of three times weekly symptom screening in pediatric cancer patients.

OBJECTIVE: Primary objective was to determine the feasibility of three times weekly symptom reporting by pediatric cancer patients for eight weeks. METHODS: We included English-speaking patients 8-18 years of age with cancer. Patients were sent reminders by text or email to complete Symptom Screening in Pediatrics Tool (SSPedi) three times weekly for eight weeks. When patients reported at least one severely bothersome symptom, the symptom report was emailed to the primary healthcare team. Patient-reported outcomes were obtained at baseline, week 4 ± 1 and week 8 ± 1. Symptom documentation, intervention provision for symptoms and unplanned healthcare encounters were determined by chart review at weeks 4 and 8. The primary endpoint was feasibility, defined as at least 75% patients achieving adherence with at least 60% of SSPedi evaluations. We planned to enroll successive cohorts until this threshold was met. RESULTS: Two cohorts consisting of 30 patients (cohort 1 (n = 20) and cohort 2 (n = 10)) were required to meet the feasibility threshold. In cohort 1, 11/20 (55%) met the SSPedi completion threshold. Interventions applied after cohort 1 included engaging parents to facilitate pediatric patient self-report, offering mechanisms to remember username and password and highlighting potential benefits of symptom feedback to clinicians. In cohort 2, 9/10 (90%) met the SSPedi completion threshold and thus feasibility was met. Patient-reported outcomes and chart review outcomes were obtained for all participants in cohort 2. CONCLUSIONS: Three times weekly symptom reporting by pediatric patients with cancer for eight weeks was feasible. Mechanisms to enhance three times weekly symptom reporting were identified and implemented. Future studies of longitudinal symptom screening can now be planned.

Creating and adapting an infection management care pathway in pediatric oncology.

PURPOSE: While care pathways based upon clinical practice guidelines (CPGs) are important, little is known about optimal approaches to development and adaptation in pediatric oncology. Objectives were to develop care pathway templates for pediatric cancer supportive care that are based upon CPGs and to adapt an infection management care pathway for use at a single institution. METHODS: Study phases were as follows: (1) creation of care pathway templates across multiple supportive care topics; (2) refinement of the infection management care pathway template by interviewing pediatric oncology clinicians at a single institution; and (3) adaptation of the infection management care pathway template for use at a different institution. RESULTS: Informed by seven CPGs, an initial iteration of the infection management care pathway template was created. This template was then refined based upon 20 interviews with pediatric oncology clinicians. Adaptation of the infection management care pathway template for use at a different institution required many changes to improve its clinical usability. Specificity and additional information not considered by the source CPGs were incorporated. CONCLUSION: We developed a process to create care pathway templates across multiple supportive care topics in pediatric oncology and to refine and adapt the infection management care pathway. While we found that the process was feasible, we also identified the need to substantially modify the care pathway during the adaptation process to consider scenarios not addressed by the source CPGs. Future work should measure implementation success.

Self-reported positive impact of mentored clinical research training is associated with academic success in hematology.

The American Society of Hematology Clinical Research Training Institute (CRTI) is a mentored training program for hematology fellows and junior faculty. Our objective was to determine whether the self-reported impact of CRTI on research retention, career development, and connectedness to hematology investigators was associated with academic success. A survey was distributed in January 2020 to alumni who participated in the program from 2003 to 2019. It focused on the impact of CRTI on retention in research, facilitation of career development, understanding of requirements to succeed, and feelings of connectedness to investigators. These questions were scored on a 5-point Likert scale ranging from strongly disagree to strongly agree. Outcomes were grants, publications, and invited lectures; these were abstracted from a submitted curriculum vitae. Of 334 eligible alumni, 321 responded (response rate of 96.1%). Of these, 250 (77.9%) agreed that CRTI was instrumental to research retention, 268 (83.5%) agreed that CRTI facilitated career development, 296 (92.2%) agreed that CRTI allowed a better understanding of requirements to succeed in research, and 289 (90.0%) agreed that CRTI increased connectedness to hematology investigators. Those who agreed with these CRTI impacts had significantly more first-author publications. Those who agreed that CRTI was instrumental to retention, facilitated career development, and increased connectedness had significantly more protected time for research. Self-reported perception that CRTI had an impact on research retention, career development, and connectedness to hematology investigators was significantly associated with more publications and percent effort in research. Clinical research training programs should identify and implement approaches to enhance these characteristics.

Identifying clinical practice guidelines for symptom control in pediatric oncology.

BACKGROUND: Children with cancer commonly experience distressing symptoms such as pain, fatigue and nausea. Improvements in patient outcomes have been associated with implementation of clinical practice guideline-consistent care across several domains. The objective of this study was to develop a process to identify symptom management clinical practice guidelines (CPGs) applicable to children and adolescents receiving cancer treatments. METHODS: We focused on identifying CPGs to manage 15 symptoms. The process defined three Tiers of CPGs based upon applicability to pediatric cancer patients and ease of identification: Tier 1: endorsed by the Children's Oncology Group; Tier 2: housed in the Emergency Care Research Institute repository, or developed by the American Society of Clinical Oncology or National Institute for Health and Care Excellence; and Tier 3: identified by systematic review. We first searched for CPGs published 2015-2020 and identified Tiers 1 or 2 CPGs. If unavailable or scope was too narrow, we proceeded to Tier 3. If CPGs were not identified, we repeated these steps for CPGs published 2010-2014. RESULTS: There were six Tier 1 and 13 Tier 2 CPGs published 2015-2020 across the 15 symptoms. Four symptoms required progression to Tier 3 because CPGs were absent (anger) or because scope was too narrow (pain, anorexia/excessive hunger and diarrhea). The systematic review identified three CPGs for pain and none for the other three symptoms. In total, CPGs were identified for 14 of 15 symptoms. None were identified for anger. CONCLUSION: We created a process to identify supportive care CPGs for pediatric cancer symptom management and were able to identify CPGs that addressed 14 of 15 symptoms. Future work should focus on evaluating implementation techniques for these CPGs and determining the impact of these CPGs on provider and patient outcomes.

Reasons for disagreement between proxy-report and self-report rating of symptoms in children receiving cancer therapies.

PURPOSE: To qualitatively describe reasons for disagreement in ratings of bothersome symptoms between child self-report and parent proxy-report. METHODS: We enrolled child and parent dyads, who understood English and where children (4-18 years of age) were diagnosed with cancer or were hematopoietic stem cell transplantation (HSCT) recipients. Each child and parent separately reported symptoms using self-report or proxy-report Symptom Screening in Pediatrics Tool (SSPedi). We then used semi-structured interviews to elicit reasons for discrepancies in symptom reporting. RESULTS: We enrolled 12 dyads in each of four age cohorts, resulting in 48 dyads. Forty-one dyads (85.4%) had disagreement in rating the presence or absence of at least one symptom. Themes identified as reasons for disagreement included (1) perception, differing perception of symptom or availability or palatability of intervention; (2) understanding, difficulty orienting to time frame or concept of bother; (3) lack of communication, including child not acknowledging or talking about experiences; (4) projection, of how the parent felt or how they assumed the child would feel; and (5) discrepancy, in how the amount of symptom bother that was initially reported on SSPedi, by either child or parent, did not align with what was reported during the dyad discussion. CONCLUSION: We identified themes that explained disagreement in ratings of bothersome symptoms between child self-report and parent proxy-report. Some disagreement may be reduced by enhancing communication about symptom reporting between child and parent. Future research should focus on methods of symptom screening that encourage communication between children with cancer and their caregivers.

Discordance between pediatric self-report and parent proxy-report symptom scores and creation of a dyad symptom screening tool (co-SSPedi).

Symptom Screening in Pediatrics Tool (SSPedi) (age 8-18 years) and mini-SSPedi (age 4-7 years) can be used to self-report and proxy-report bothersome symptoms in pediatric patients receiving cancer treatments. There are limitations of sole child self-report or proxy-report. An approach in which children and parents complete symptom reports together may be useful. The aim of our study was to describe discordance between child self-report and parent proxy-report symptom scores, and to determine how these scores compare to an approach in which reporting is performed together (co-SSPedi). Children and parents completed SSPedi or mini-SSPedi separately. Discordant symptoms were shared with respondents and discussed. Next, the dyad completed co-SSPedi together and were asked which approach they preferred. Discordance was evaluated for each symptom and was defined as a difference of at least 2 points on an ordinal scale ranging from 0 (not at all bothered) to 4 (extremely bothered). Of the 48 enrolled dyads (children, median age, 10.8 years; 54.2% male), 41 (85.4%) had discordance in at least one symptom. There was no clear pattern in discordance by age group. When a dyad approach was used, more co-SSPedi scores agreed with the original child self-report scores (59 dyads, 56.2%) compared to original parent proxy-report scores (15 dyads, 14.3%) for discordant symptoms. Forty-three (89.6%) dyads preferred to complete SSPedi together. Future work should evaluate the psychometric properties of co-SSPedi.

"We are the best to stand in for patients": a qualitative study on nurses' advocacy characteristics in Ghana.

BACKGROUND: Patient advocacy has been identified as a core duty of the nurse, and certain nurse characteristics influence the performance of the role. However, these characteristics have not been adequately explored in Ghana. This study aimed to explore the perspectives of nurses about the characteristics of nurses that influence their role as patient advocates. METHODS: An exploratory descriptive qualitative study was conducted among 15 nurses from a regional hospital in Ghana. Purposive sampling was used to select participants and individual in-depth interviews were conducted in English using a semi-structured interview guide. The interviews were audio-taped and transcribed. Data analysis was done concurrently employing the principles of thematic analysis. Ethical approval was obtained for the study from the Noguchi Memorial Institute of Medical Research and the Ghana Health Service Ethical Review Committee. RESULTS: Themes generated revealed nurse traits which enhanced the advocacy role of nurses such as being empathetic, nurturing, ethical, assertive and persistent and nurse states which hindered the performance of the role such as fatigue and frustration. However, "compassionate" emerged as an additional nurse trait from this study. Out of empathy, participants availed themselves for patients to share their problems with them. In their nurturing roles, spending more time with patients and providing personal care fostered closeness which helped in identifying patients' problems. Helping patients navigate the health system was also found. They perceived patient advocacy as a moral responsibility and identified good communication skills and determination to help patients get their problems solved as important in patient advocacy. Some participants also described compassion-based activities such as pleading on patients' behalf, providing material and financial assistance, facilitating care and providing emotional support in their advocacy. However, heavy workload and lack of appreciation from patients were found to hinder the performance of the advocacy role. CONCLUSIONS: We concluded that nurse characteristics that influence patient advocacy are comparable to those identified internationally such as being empathetic, assertiveness and fatigue. Enhancing these characteristics could help nurses overcome the negative states that undermine the patient advocacy role of nurses.