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Patient Icons Shown in the Low-Fidelity Phase

Patient Icons Shown in the Low-Fidelity Phase

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Background We developed Supportive care Prioritization, Assessment and Recommendations for Kids (SPARK), a web-based application designed to facilitate symptom screening by children receiving cancer treatments and access to supportive care clinical practice guidelines primarily by healthcare providers. The objective was to describe the initial deve...

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Background Supportive care Prioritization, Assessment and Recommendations for Kids (SPARK) is a web application focused on improving symptom control. It enables pediatric cancer and hematopoietic stem cell transplant (HSCT) patients to self-report and track symptoms, and allows healthcare professionals to access guidelines for symptom management. O...

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... The adapted care pathways were reviewed by a local interprofessional team including, but not limited, to pharmacy, nursing, infectious diseases, and oncology. Once finalized, the adapted care pathways were uploaded into Supportive Care Prioritization, Assessment and Recommendations for Kids (SPARK), a website that facilitated access to the pathways [19]. ...
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Purpose The Pediatric Oncology Group of Ontario (POGO) supported an effort to implement infection management care pathways based on clinical practice guidelines, to improve the consistency of infection management in pediatric cancer patients. The objective of this qualitative study was to describe the perspective of healthcare professionals (HCPs) following implementation. Methods Four tertiary pediatric oncology centers in Ontario, Canada, implemented the pathways. We randomly identified three HCPs per group (clinical pharmacists; nurse case managers, educators or practitioners and physician assistants; pediatric oncology fellows; or pediatric oncology staff physicians) per site and invited them to participate in a qualitative interview. One-on-one interviews were conducted remotely, followed by thematic analysis of interview transcripts. Results A total of 66 invitations were extended and 42 HCPs participated. Identified themes were: (1) implementation approach, (2) access and navigation, (3) engagement, (4) concerns, (5) workplace benefits, (6) reception, and (7) provincial harmonization. HCPs preferred in-person implementation strategies over e-mail communication. They identified teaching/educational utility and benefits to non-oncology departments and non-tertiary centers participating in shared care of patients. Other positive aspects related to evidence-based practice, safety, supporting oncology HCPs, and benefits to patients and families. Concerns included need to ensure users applied clinical judgement and loss of autonomy. Provincial harmonization of practice was viewed positively, although potential logistical and institutional cultural barriers were raised. Conclusions Following infection management care pathway implementation, HCPs described educational utility and benefits to non-oncology departments, oncology HCPs, patients, and families. Our findings may facilitate future infection management care pathway provincial harmonization.
... Recently, the rapid development of technology in the health/nursing sector and the pandemic of COVID-19 have amplified the need for user-friendly mobile health (mHealth) applications, allowing for real-time monitoring for parents and children with ALL to benefit and facilitate them in long-term care and treatment. In pediatric cancer health services, several countries in the world have developed single or multiple symptom monitoring and management applications, including webbased [10][11][12], smartphones [13,14], and computers [15]. Mobile health includes technologies such as mobile phones, personal digital assistance (PDA), smartphones, patient monitoring devices, mp3 players for mobile learning, and mobile computing [16]. ...
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Background A mobile health (mHealth) application can encourage parents and pediatric patients to be involved in caring for their child’s health condition by providing the ability to identify and actively manage chemotherapy-related symptoms in their child. Several monitoring systems available today are diverse in features and system basis. This study aimed to develop and trial the Chemo Assist for Children (CAC) mHealth application for symptom management in children with acute lymphoblastic leukemia (ALL). Methods In this study, the development of the CAC application went through multiple phases and methods. Study phases included: (1) development of the application’s feature based on the need assessment, (2) creation of content of application based on literature review, (3) develop prototyping of CAC, (4) expert review and feedback on the application content, (5) usability testing by targeted end-user. Results Based on need assessment, it was determined that parents with leukemia children were interested in symptom management of chemotherapy and preferred mobile applications. Therefore, a mHealth application was designed to include features to identify symptoms and provide recommendation strategies to manage the symptom. Usability evaluation by end-user revealed that mHealth is a valid, accessible, and appropriate application for users. Conclusions The CAC mHealth application developed can meet the needs of technology users to identify symptoms and manage chemotherapy-related symptoms in children with ALL. The CAC mHealth application can accommodate data not recorded at out-of-hospital care, increase the independence of symptom management, and improve communication between parents of children with ALL and health workers.
... We describe procedures performed as a component of a cluster randomized trial of 20 institutions in the United States testing whether a web-based application named Supportive care Prioritization, Assessment and Recommendations for Kids (SPARK) can improve symptom control in newly diagnosed pediatric patients with cancer [11,12]. The intervention under evaluation included adaptation of symptom management care pathways for institutions randomized to the intervention group. ...
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Background There is substantial heterogeneity in symptom management provided to pediatric patients with cancer. The primary objective was to describe the adaptation process and specific adaptation decisions related to symptom management care pathways based on clinical practice guidelines. The secondary objective evaluated if institutional factors were associated with adaptation decisions. Methods Fourteen previously developed symptom management care pathway templates were reviewed by an institutional adaptation team composed of two clinicians at each of 10 institutions. They worked through each statement for all care pathway templates sequentially. The institutional adaptation team made the decision to adopt, adapt or reject each statement, resulting in institution-specific symptom management care pathway drafts. Institutional adaption teams distributed the 14 care pathway drafts to their respective teams; their feedback led to care pathway modifications. Results Initial care pathway adaptation decision making was completed over a median of 4.2 (interquartile range 2.0-5.3) weeks per institution. Across all institutions and among 1350 statements, 551 (40.8%) were adopted, 657 (48.7%) were adapted, 86 (6.4%) were rejected and 56 (4.1%) were no longer applicable because of a previous decision. Most commonly, the reason for rejection was not agreeing with the statement (70/86, 81.4%). Institutional-level factors were not significantly associated with statement rejection. Conclusions Acceptability of the 14 care pathways was evident by most statements being adopted or adapted. The adaptation process was accomplished over a relatively short timeframe. Future work should focus on evaluation of care pathway compliance and determination of the impact of care pathway-consistent care on patient outcomes. Trial registration clinicaltrials.gov, NCT04614662. Registered 04/11/2020, https://clinicaltrials.gov/ct2/show/NCT04614662?term=NCT04614662&draw=2&rank=1.
... for pediatric patients 8-18 years of age receiving cancer treatments. Building on SSPedi, we then developed Supportive care Prioritization, Assessment and Recommendations for Kids (SPARK), which is a web-based platform that consists of a symptom screening component centered on SSPedi and a supportive care clinical practice guideline component (Fig. 1) [13]. SPARK provides reminders for pediatric patients to complete symptom screening by text or email. ...
... Patients were given a reminder information sheet including the days and times of their reminders as well as their username and password. In contrast to the teaching provided to patients, healthcare team recipients of SPARK reports did not receive formal training in interpreting the report as our previous research showed these reports were easy to understand [13]. ...
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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.
... We have previously undertaken an effort to allow easy access to CPGs endorsed by the Children's Oncology Group using a web application named Supportive care Prioritization, Assessment and Recommendations for Kids (SPARK) (available at sparkcancercare.com) [19]. Implementation of CPGs, however, is challenging, and the development of care pathways is one approach to facilitate delivery of CPG-consistent care. ...
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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.
... Recently, the rapid development of technology in the health/nursing sector and the pandemic of COVID- 19 have ampli ed the need for speci c mobile health (mHealth) applications that are user-friendly, allowing for real-time monitoring for parents and children with ALL to bene t and facilitating them in long-term care and treatment. In pediatric cancer health services, several countries in the world have developed single or multiple symptoms monitoring and management applications, including web-based [10][11][12], smartphones [13,14], and computers [15]. A review suggests designing policies following the utilization of mHealth in developed countries because it does not require costly infrastructure and can increase the accessibility of education and information about childhood cancer [16]. ...
Preprint
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Background The mobile health (mHealth) application encourages parents and pediatric patients to be involved in caring for their child's health condition by providing the ability to identify and manage chemotherapy-induced symptoms in their child actively. Several monitoring systems available today are diverse in terms of features and system basis. This study aimed to develop and trial the Chemo Assist for Children (CAC) mHealth application for symptom management due to chemotherapy in children with acute lymphoblastic leukemia (ALL). Methods In this study, the development of the CAC application went through four phases. The initial phase was conducting a literature study for application content. The application design phase involved five experts to validate application content. In the implementation phase, the application was piloted on ten parents with ALL children undergoing chemotherapy at two teaching hospitals, Indonesia. At the evaluation stage, the CAC application was improved according to the test results. The data were obtained descriptively from the validation and application testing using the average and total item scores. Results Phase 1 obtained 17 reference sources in textbooks and research journal articles to design the mHealth application content. Phase 2 received the value of the content validity of all statements was 0.96, which means that the application material is declared valid. In phase 3, the average total usability test score was 4.28. Finally, an evaluation phase was applied continuously to produce a valid, accessible, and appropriate application for users. Conclusions The CAC mHealth application developed can meet the needs of technology users to identify symptoms and manage symptoms due to chemotherapy in children with ALL. The CAC mHealth application can accommodate data not recorded at out-of-hospital care, increase the independence of symptom management, and improve communication between parents of children with ALL and health workers.
... To address symptom screening, we developed the Symptom Screening in Pediatrics Tool (SSPedi), which measures the degree of bother for 15 symptoms considered most important by patients [5][6][7]. We then developed Supportive care Prioritization, Assessment and Recommendations for Kids (SPARK), which is a web-based application that consists of a symptom screening component centered on SSPedi and a supportive care CPG component [8][9][10]. ...
Article
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Background Objectives were to describe barriers to pediatric cancer symptom management care pathway implementation and the impact of the COVID-19 pandemic on clinical research evaluating their implementation. Methods We included 25 pediatric oncology hospitals in the United States that supported a grant submission to perform a cluster randomized trial in which the intervention encompassed care pathways for symptom management. A survey was distributed to site principal investigators prior to randomization to measure contextual elements related to care pathway implementation. Questions included the inner setting measures of the Consolidated Framework for Implementation Research (CFIR), study-specific potential barriers and the impact of the COVID-19 pandemic on clinical research. The Wilcoxon rank sum test was used to compare characteristics of institutions that agreed that their department supported the implementation of symptom management care pathways vs. institutions that did not agree. Results Of the 25 sites, one withdrew because of resource constraints and one did not respond, leaving 23 institutions. Among the seven CFIR constructs, the least supported was implementation climate; 57% agreed there was support, 39% agreed there was recognition and 39% agreed there was prioritization for symptom management care pathway implementation at their institution. Most common barriers were lack of person-time to create care pathways and champion their use (35%), lack of interest from physicians (30%) and lack of information technology resources (26%). Most sites reported no negative impact of the COVID-19 pandemic across research activities. Sites with fewer pediatric cancer patients were more likely to agree that staff are supported to implement symptom management care pathways (P = 0.003). Conclusions The most commonly reported barriers to implementation were lack of support, recognition and prioritization. The COVID-19 pandemic may not be a major barrier to clinical research activities in pediatric oncology.
... [5][6][7] We then developed Supportive care Prioritization, Assessment and Recommendations for Kids (SPARK), which is a web-based application that consists of a symptom screening component centered on SSPedi and a supportive care CPG component. [8][9][10] To test whether SPARK can improve symptom control and quality of life for pediatric patients with cancer, we were awarded operating grants from the National Institutes of Health (1R01CA251112) and the Canadian Institutes of Health Research (PJT 169165) to perform a cluster randomized trial of 20 institutions in the United States. This trial will randomize 10 sites to intervention and 10 sites to control (usual care) groups. ...
Preprint
Full-text available
Background: To describe barriers to pediatric cancer symptom management care pathway implementation and the impact of the COVID-19 pandemic on clinical research evaluating their implementation. Methods: We included 25 pediatric oncology hospitals in the United States that supported a grant submission to perform a cluster randomized trial in which the intervention encompassed care pathways for symptom management. A survey was distributed to site principal investigators to measure contextual elements related to care pathway implementation. Questions included the inner setting measures of the Consolidated Framework for Implementation Research (CFIR), study-specific potential barriers and the impact of the COVID-19 pandemic on clinical research. The Wilcoxon rank sum test was used to compare characteristics of institutions that agreed that their department supported the implementation of symptom management care pathways vs. institutions that did not agree. Results: Of the 25 sites, one withdrew because of resource constraints and one did not respond, leaving 23 institutions. Among the seven CFIR constructs, the least supported was implementation climate; 57% agreed there was support, 39% agreed there was recognition and 39% agreed there was prioritization for symptom management care pathway implementation at their institution. Most common barriers were lack of person-time to create care pathways and champion their use (35%), lack of interest from physicians (30%) and lack of information technology resources (26%). Most sites reported no negative impact of the COVID-19 pandemic across research activities. Sites with fewer pediatric cancer patients were more likely to agree that staff are supported to implement symptom management care pathways (P=0.003). Conclusions: The most commonly reported barriers to implementation were lack of support, recognition and prioritization. The COVID-19 pandemic was not a major barrier to clinical research activities in pediatric oncology. Clinical Trial Registration: NCT04614662
... SPARK is intended for use by pediatric patients, family members and healthcare providers. We previously described the initial development of the SPARK web pages for use by pediatric patients [9,10]. ...
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Background: Supportive care Prioritization, Assessment and Recommendations for Kids (SPARK) is a web-based application that facilitates symptom screening and access to supportive care clinical practice guidelines (CPGs) for children and adolescents receiving cancer treatments. Objective was to develop SPARK family member web pages for pediatric patient family members accessing: (1) proxy symptom screening and symptom reports, and (2) care recommendations for symptom management based on CPGs. Methods: SPARK family member web pages were developed and included access to symptom screening and care recommendations sections. Care recommendations for fatigue and mucositis were created. These were iteratively refined based upon cognitive interviews with English-speaking family members ≥16 years of age until less than two participants incorrectly understood sections as adjudicated by two independent raters. Results: A total of 100 family members were enrolled who evaluated the SPARK family member web pages (n = 40), fatigue care recommendation (n = 30) and mucositis prevention care recommendation (n = 30). Among the last 10 participants, none said that the SPARK family member web pages were hard or very hard to use, one incorrectly understood one web page, none said either care recommendation was hard to understand and none were incorrect in their understanding of the care recommendations. Conclusions: We successfully developed SPARK web pages for use by family members of pediatric patients receiving cancer treatments. We also developed a process for translating CPG recommendations designed for healthcare professionals to lay language. The utility of SPARK family member web pages after clinical implementation could be a focus for future research.
... In order to improve symptom control and communication of bothersome symptoms to healthcare professionals, we developed SSPedi (Symptom Screening in Pediatrics Tool) [4], a symptom screening tool targeted for children receiving cancer treatments [4,5]. Building upon the SSPedi, we then developed SPARK (Supportive care Prioritization, Assessment and Recommendations for Kids), a web-based application consisting of a symptom-screening component centered on the SSPedi and a supportive care clinical practice guideline (CPG) component [6]. The SPARK was designed to allow children to report and track their symptoms, to facilitate communication of symptoms to healthcare professionals, and to enable provider access to CPGs for symptom management. ...
... We have previously described the initial development of the patient-facing portal of the SPARK. Iterative refinements were based on cognitive interviews with 90 children between 8 and 18 years of age receiving cancer treatments and pediatric HSCT recipients [6]. We next completed a single-armed feasibility study in which we tested the longitudinal utilization of the SPARK among children 8-18 years of age admitted to hospital or seen in clinic daily for 5 days. ...
Article
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Purpose Supportive care Prioritization, Assessment and Recommendations for Kids (SPARK) is a web-based application that enables symptom screening and access to clinical practice guidelines for symptom management. Objective was to determine the feasibility of a randomized trial of daily symptom screening for 5 days among children receiving cancer treatments. Methods We included English-speaking pediatric cancer and hematopoietic stem cell transplantation (HSCT) patients who were 8–18 years of age at enrollment and who were expected to be in the hospital or in clinic daily for five consecutive days. We randomized children to either undergo daily symptom screening with symptom reports provided to the healthcare team using the SPARK vs. standard of care. The primary endpoint was feasibility, defined as being able to enroll at least 30 participants within 1 year, and among those randomized to intervention, at least 75% completing symptom screening on at least 60% of on-study days. Results From July 2018 to November 2018, we enrolled and randomized 30 participants. The median age at enrollment was 12.5 (range 8–18) years. Among the intervention group, the median number of days Symptom Screening in Pediatrics Tool (SSPedi) was completed at least once was 5 (range 4 to 5), with one participant missing 1 day of symptom screening. Among all participants, baseline and day 5 SSPedi scores were obtained in 29/30 participants. Conclusion A randomized trial of the SPARK with daily symptom screening for 5 days was feasible. It is now appropriate to proceed toward a definitive multi-center trial to test the efficacy of SPARK to improve symptom control.