Journal of Pediatric Hematology-Oncology Nursing最新文献

{"title":"Facilitating and Implementing a Process for the Delivery of Pediatric Oncology New Diagnosis Education Among Nursing Staff Through the Electronic Medical Record.","authors":"Christina K Collazo,&nbsp;Nancy Tena,&nbsp;Elizabeth A Duffy","doi":"10.1177/27527530211073873","DOIUrl":"https://doi.org/10.1177/27527530211073873","url":null,"abstract":"<p><p><b>Background:</b> An estimated 11,060 children between the ages of 1 and 14 years and 4,900 adolescents between the ages of 15 and 19 years are diagnosed with cancer in the United States. Parents with children newly diagnosed with cancer must acquire new knowledge related to the diagnosis, treatment plan, psychosocial care, and home management therapies to safely provide care following discharge. Expert consensus and review of current evidence demonstrate that utilizing a new diagnosis education checklist allows the delivery of essential information to patients and caregivers. The checklist divides educational topics into three sections: primary, secondary, and tertiary topics. This project followed the completion of an evidence-based fellowship through Children's Oncology Group focusing upon the feasibility and efficacy of implementing a standardized new diagnosis education checklist. The fellowship identified secondary topic documentation and an electronic medical record (EMR) checklist as areas of future work. <b>Methods:</b> This quality improvement project focused upon nursing staffs' documentation of secondary topics and the development/utilization of an EMR checklist. A pre-post survey design evaluated the outcomes of secondary topic documentation and EMR checklist implementation. <b>Results:</b> This nurse-led initiative created templates for primary and secondary topic checklists using Epic's SmartPhrase feature \".PHOPTED1\" and \".PHOPTED2.\" Secondary topic completion and documentation increased 26% following implementation, and over 40% of the nursing staff indicated that they were very likely to continue to use the new templates. <b>Discussion:</b> Project templates are readily applicable to institutions that utilize Epic. Template examples and strategies to facilitate inpatient/outpatient checklist completion are discussed.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9687670","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Nurses' Experiences Caring for Children With Neuroblastoma Receiving ¹³¹I-Metaiodobenzylguanidine Therapy: A Qualitative Descriptive Study.","authors":"Kelly Lankin,&nbsp;Cynthia M LaFond,&nbsp;Alyssa Yost","doi":"10.1177/27527530221140070","DOIUrl":"https://doi.org/10.1177/27527530221140070","url":null,"abstract":"<p><p><b>Background:</b> Neuroblastoma, the most common extra-cranial solid tumor found in children, carries a high mortality rate due to challenges with metastatic disease at diagnoses and relapse. ¹³¹I-Metaiodobenzylguanidine (I-MIBG) therapy provides targeted radiotherapy to treat neuroblastoma, but requires children to be isolated for radiation exposure, with limited access to the healthcare team while hospitalized. There is minimal research outlining the nurses' perspectives on caring for this patient population. Therefore, the aim of this study was to describe the nurses' experiences caring for children receiving ¹³¹I-MIBG therapy, focusing on nursing care, challenges, radiation exposure, and preparation. <b>Methods:</b> Ten nurses were recruited using purposeful sampling for this qualitative descriptive study. Semi-structured interview guides and conventional qualitative content analysis guided the data collection and analysis. <b>Results:</b> Nurses overwhelmingly felt isolated from their patients and a decreased sense of connection with the child. Although nurses felt prepared, they had more anxiety with the first patient experience and identified that parent engagement was essential. Overall, nurses shared they had support from written materials outlining the protocols, and members of the multidisciplinary team. More concern for radiation exposure was expressed by nurses of childbearing age and with handling bodily fluids. <b>Discussion:</b> Findings suggest that nurses would benefit from simulation experiences to help prepare for radiation exposure safety, strategies to engage the family in the child's care, and interacting with a child in single-room isolation. Because programs differ around the US, additional research exploring nurses' experiences is warranted to evaluate the best successes in providing ¹³¹I-MIBG therapy.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9690398","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Pediatric Nurses' Person-Centered Approach to Nausea Management in Children With Cancer.","authors":"Maria Nogéus,&nbsp;Stefan Nilsson,&nbsp;Maria Björk","doi":"10.1177/27527530221140056","DOIUrl":"https://doi.org/10.1177/27527530221140056","url":null,"abstract":"<p><p><b>Background:</b> Nausea is a problematic side effect of childhood cancer treatment. However, it is not clear what interventions and assessments pediatric oncology nurses make when caring for a child with nausea. A person-centered approach can illuminate nausea management in pediatric care. The aim was to investigate how pediatric nurses retrieve the patient's narrative, establish partnership, and document nausea in hospitalized children with cancer. <b>Methods:</b> Individual interviews with nurses were conducted and analyzed using deductive content analysis with the framework of person-centered care. <b>Results:</b> The pediatric nurses described retrieving the patient's narrative regarding their nausea by listening to and observing the child. The pediatric nurses tried to establish a partnership with the child by allowing previous knowledge and the child's own preferences guide the interventions that focus on decreasing the child's nausea. The pediatric nurses also documented the effect of the given interventions and described the child's nausea using subjective words. When planning for the child's care it was rare for the nurses to have a documented care plan, but they did review documentation of previously administered interventions to plan for future care. <b>Discussion:</b> The results highlight the pediatric nurses' willingness to listen to the child, but also emphasize the need to further include the child and the parents in the partnership and documentation of nausea management. Collaboration with the child and the parents contributes to higher quality care and a partnership with trust.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9681343","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Bringing Together a Transdisciplinary Team to Create and Advance a Shared Vision for Research and Support for Siblings of Youth With Cancer.","authors":"Christina M Amaro,&nbsp;Melissa A Alderfer,&nbsp;Cynthia A Gerhardt,&nbsp;Sarah E Wawrzynski,&nbsp;Melanie Goldish,&nbsp;Kristin A Long","doi":"10.1177/27527530221121727","DOIUrl":"10.1177/27527530221121727","url":null,"abstract":"<p><p><b>Background:</b> Siblings of youth with cancer are at risk for psychosocial difficulties and report unmet needs. Supporting siblings is a psychosocial standard of care; however, many barriers prevent this standard from being fully achieved. Transdisciplinary team science has potential to generate novel, real-world solutions to complex research problems and can be beneficial to addressing sibling needs within pediatric hematology/oncology nursing. This process paper aims to present a guiding framework for transdisciplinary team science using the experiences of the Sibling Partnership for Advocacy, Research, and Care in Childhood Cancer (SPARCCC) as an exemplar. <b>Methods:</b> SPARCCC employed an established model of transdisciplinary team-based research, which consisted of four phases: development, consultation, implementation, and translation. This transdisciplinary team was comprised of international experts from a variety of disciplines, as well as siblings and families impacted by cancer. <b>Results:</b> SPARCCC held two summits, and team members developed ongoing collaborative efforts to advance advocacy, research, and support for siblings of youth with cancer. The team implemented the four phases of the transdisciplinary team-based framework and used an iterative process to build a shared perspective of the needs of siblings and take action. For instance, we completed a grant application, several manuscripts, and conference presentations to disseminate our findings and begin to advance a focused research agenda for sibling supportive care. <b>Discussion:</b> Transdisciplinary team science holds promise for tackling complex issues within pediatric hematology/oncology nursing research, particularly areas that are not well aligned with more traditional models and can be used to generate novel solutions.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9900248/pdf/10.1177_27527530221121727.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10818703","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Oral Mercaptopurine Adherence in Pediatric Acute Lymphoblastic Leukemia: A Survey Study From the Dana-Farber Cancer Institute Acute Lymphoblastic Leukemia Consortium.","authors":"Justine M Kahn,&nbsp;Kristen Stevenson,&nbsp;Melissa Beauchemin,&nbsp;Victoria B Koch,&nbsp;Peter D Cole,&nbsp;Jennifer J G Welch,&nbsp;Elizabeth Gage-Bouchard,&nbsp;Cecile Karsenty,&nbsp;Lewis B Silverman,&nbsp;Kara M Kelly,&nbsp;Kira Bona","doi":"10.1177/27527530221122685","DOIUrl":"10.1177/27527530221122685","url":null,"abstract":"<p><p><b>Background:</b> Oral chemotherapy nonadherence is a challenge in clinical oncology. During therapy for acute lymphoblastic leukemia (ALL), poor adherence to 6-mercaptopurine (6MP) increases relapse risk. Clinically significant nonadherence is reported in 30% of children treated for ALL on Children's Oncology Group (COG) trials. Whether nonadherence rates vary across regimens with different treatment schedules and modes of administration is unknown. <b>Methods:</b> We conducted an exploratory, cross-sectional survey study on parents of children (1-18 years) receiving continuation therapy on, or as per Dana-Farber Cancer Institute (DFCI) ALL Consortium Protocol 11-001. Treatment required weekly visits to the clinic and 14 days of oral 6MP every 3 weeks. Survey assessed self-reported sociodemographics, medication-taking, chemotherapy comprehension, and 6MP adherence; adherence survey items were developed from published surveys. Patients were grouped as nonadherent if they endorsed missing one 6MP dose during the last cycle, or more than one dose during prior cycles, for nonmedical reasons. <b>Results:</b> Sixty-two families completed the surveys, all of whom had evaluable adherence data. In total, 25% of patients met the study definition of nonadherence. Twenty-three percent reported that it was \"not easy\" to follow administration guidelines around the dairy intake and 57% requested more teaching and educational resources. <b>Conclusion:</b> Self-reported nonadherence to oral 6MP in the DFCI ALL Consortium is high, with rates similar to those observed in the COG. This suggests that the additional contact during weekly infusions on the DFCI is insufficient to address barriers affecting oral chemotherapy adherence.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9982234/pdf/10.1177_27527530221122685.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10835309","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Pilot Randomized Trial of a Three Times Weekly Heparin Flushing Intervention in Children, Adolescents, and Young Adults With Cancer With Tunneled Central Venous Catheters.","authors":"Kathleen Adlard,&nbsp;Carol Brown,&nbsp;Samantha Hayward,&nbsp;Jennifer Barrows,&nbsp;Lori MacLean","doi":"10.1177/27527530221090479","DOIUrl":"https://doi.org/10.1177/27527530221090479","url":null,"abstract":"<p><p><b>Background:</b> Children and adolescents with cancer often undergo aggressive treatment and receive supportive care requiring a long-term tunneled central venous catheter (TCVC). Regular flushing promotes TCVC patency when not in use (i.e., noninfusing). However, TCVC flushing guidelines and the current practice of daily flushing are not based on high-quality evidence. Few studies have compared the effect of less frequent flushing on TCVC patency. The purpose of this study was to evaluate the feasibility of a three times weekly heparin flushing intervention, as compared to daily heparin flushing, in children and adolescents and young adults (AYAs) with noninfusing TCVCs. <b>Methods:</b> Twenty children and AYAs were randomized to one of two groups, standard of care (SOC) (i.e., daily heparin flushing) or intervention (three times weekly heparin flushing) for 8 weeks. Feasibility data (recruitment, retention, acceptability, TCVC patency, and complications) were analyzed descriptively. <b>Results:</b> Twenty of 22 eligible patients were enrolled in the study (90% recruitment rate). Four participants discontinued the study early due to TCVC removal (20% attrition rate). One participant in each group had their TCVC removed due to a central line-associated bloodstream infection, one SOC group participant had their TCVC removed due to damage, and one intervention group participant had their TCVC removed due to discontinuation of treatment. No participants were withdrawn for safety concerns or because they did not find the protocol acceptable. <b>Conclusions:</b> It is feasible to conduct a large-scale randomized controlled trial to investigate a three times weekly heparin flushing intervention in children and AYAs with TCVCs.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10594102","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Recommendations for Providing Medication Adherence Support After Pediatric Hematopoietic Stem Cell Transplant: Caregivers' Lived Experience.","authors":"Marie L Chardon,&nbsp;Kimberly L Klages,&nbsp;Naomi E Joffe,&nbsp;Ahna L H Pai","doi":"10.1177/27527530221121723","DOIUrl":"10.1177/27527530221121723","url":null,"abstract":"<p><p><b>Background.</b> Medication adherence is challenging after pediatric hematopoietic stem cell transplant (HCT), particularly after hospital discharge. Post-HCT medication adherence is important to manage morbidity and mortality risk. Designing interventions that are effective and acceptable to caregivers is key to improving post-HCT medication adherence. This study aimed to characterize caregiver preferences about medication adherence support from their child's medical team. <b>Methods.</b> Twenty-nine caregivers of children who received an HCT completed semi-structured qualitative interviews about their experience with, and recommendations for improving, medication adherence support provided by the medical team. Twenty-two caregivers also completed a card sort task to clarify the content of received support and caregiver recommendations for future HCT families. <b>Results.</b> Thematic analysis revealed eight themes grouped into two categories: <i>Communication Is Key</i> and <i>Practical Medication Adherence Support</i>. Caregivers emphasized the importance of communication in helping them manage their child's outpatient medications and provided suggestions to further strengthen communication. The types of practical medication adherence support used varied across caregivers highlighting the importance of tailoring adherence support to each family's needs. Caregivers also identified all the domains as potentially helpful for other families. <b>Discussion.</b> Findings suggest that caregivers prefer that efforts to improve outpatient medication adherence post-HCT prioritize the medical team initiating frequent, clear, and open communication about medications, and provide educational materials on adherence (e.g., handouts). Results also indicate that practical medication adherence supports should be offered based on family preferences but that families may particularly appreciate tips about addressing medication challenges based on other caregivers' lived experience.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9982233/pdf/10.1177_27527530221121723.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9078747","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"An Integrative Review: The Evolution of Provider Knowledge, Attitudes, Perceptions and Perceived Barriers to Caring for Patients with Sickle Cell Disease 1970-Now.","authors":"Jessie Reich,&nbsp;Mary Ann Cantrell,&nbsp;Suzanne C Smeltzer","doi":"10.1177/27527530221090179","DOIUrl":"https://doi.org/10.1177/27527530221090179","url":null,"abstract":"<p><p>Approximately 100,000 Americans have sickle cell disease (SCD). In the USA, the majority of patients with SCD are of African descent. Due to persistent racial and ethnic disparities in healthcare in the USA, patients with SCD experience disproportionately more health inequities because of providers' implicit biases regarding patient race. Lack of access to health insurance, lack of transportation to healthcare providers, and inadequate provider knowledge contribute to the morbidity and mortality of patients with SCD. The purpose of this integrative review was to analyze and synthesize the literature on providers' knowledge, perceptions, beliefs, and attitudes toward patients with SCD. A modified (Preferred Reporting Items for Systematic Reviews and Meta-Analysis) method was used to conduct a comprehensive review of the literature yielding 31 publications included in this review. Three connected, yet distinct areas of focus were identified: (1) providers' knowledge, attitudes, and perceptions of patients with SCD; (2) providers' perceived or true barriers to caring for patients with SCD; and (3) interventions to improve providers' attitudes, perceptions, and care of patients with SCD. In each area of focus, research has evolved over time. Also included in this integrative review is a synthesis of measurement instruments used to assess provider knowledge, attitudes, perceptions, and perceived and true barriers to caring for patients with SCD. Adolescents with SCD who are transitioning from pediatric to adult care are at a particularly high risk for morbidity and mortality, so this review focused on the many opportunities that exist to advance the healthcare for young adults with SCD to improve patient outcomes later in life. This includes improving providers' knowledge, perceptions, beliefs, and attitudes, and lessening the real or perceived barriers to care for patients with SCD.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10594132","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Health-Related Quality of Life in Adolescent and Young Adult Retinoblastoma Survivors.","authors":"Paula J Belson, Jo-Ann Eastwood, Mary-Lynn Brecht, Jonathan W Kim, Ron D Hays, Nancy A Pike","doi":"10.1177/27527530221073766","DOIUrl":"10.1177/27527530221073766","url":null,"abstract":"<p><p><b>Background:</b> Retinoblastoma (RB) is a malignant intraocular tumor diagnosed in early childhood that requires extensive medical and surgical treatment at a young age. Health-related quality of life (HRQOL) is thought to be diminished due to visual impairment, facial deformities, and fear of recurrence or secondary cancer. However, few studies have identified variables associated with HRQOL among those with RB. <b>Purpose:</b> To compare HRQOL of adolescents and young adults (AYAs) with RB to matched controls and to identify predictors of HRQOL in RB survivors. <b>Methods:</b> Using a cross-sectional design, 198 AYAs (101 RBs and 97 controls) completed HRQOL (PROMIS®-29 profile) and psychosocial questionnaires (Rosenberg self-esteem scale, multidimensional scale of perceived social support, and Hollingshead index for socioeconomic status). Clinical variables (age at diagnosis, visual acuity, laterality, heredity, treatment regime, and anesthesia exposure) were extracted from the medical record. Correlates of HRQOL were estimated using linear regression models. <b>Results:</b> RB survivors reported similar HRQOL compared to controls. Physical function (<i>p </i>< .001), social support (<i>p</i> = .013), and self-esteem (<i>p</i> = .028) were lower in the RB group compared to controls. Visual acuity and self-esteem accounted for 52% of the variance in PROMIS physical health summary scores and self-esteem accounted for 38% of the variance in mental health summary scores. <b>Conclusion:</b> Despite deficits in physical function and self-esteem HRQOL in RB survivors was comparable to healthy counterparts. However, the majority of RB survivors in this study had normal visual acuity. Clinicians should explore ways to enhance self-esteem in RB survivors.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":null,"pages":null},"PeriodicalIF":1.0,"publicationDate":"2022-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9807776/pdf/10.1177_27527530221073766.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9951937","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A Pilot Randomized Control Trial of Teens Taking Charge: A Web-based Self-management Program for Adolescents with Cancer.","authors":"Vicky R Breakey,&nbsp;Abha Gupta,&nbsp;Donna L Johnston,&nbsp;Carol Portwine,&nbsp;Caroline Laverdiere,&nbsp;Sylvie Le May,&nbsp;Bruce Dick,&nbsp;Amos Hundert,&nbsp;Fareha Nishat,&nbsp;Tieghan Killackey,&nbsp;Cynthia Nguyen,&nbsp;Chitra Lalloo,&nbsp;Jennifer Stinson","doi":"10.1177/27527530211068778","DOIUrl":"https://doi.org/10.1177/27527530211068778","url":null,"abstract":"<p><p><b>Background:</b> There is a lack of self-management tools for adolescents with cancer (AWC). This study evaluated the feasibility of <i>Teens Taking Charge Cancer</i>, a web-based self-management program. <b>Methods:</b> A pilot randomized control trial (RCT) was conducted across 4 pediatric oncology clinics. AWC (12-18 years) and their caregivers were randomized to either the intervention or control group. All were asked to complete 12 website modules over 12 weeks (at their own pace) and received monthly calls from health coaches. The intervention website was based on cognitive behavioral principals, designed as an interactive self-guided online program, while the control consisted of education and included links to 12 general cancer websites. Outcome assessments occurred at enrollment and 12 weeks post-intervention. The primary outcomes included rate of accrual and retention, adherence to the protocol, acceptability and satisfaction with intervention using questionnaire and semi-structured interviews, adverse events and engagement with the intervention. <b>Results:</b> Eighty-one teen-caregiver dyads were enrolled with a retention rate of 33%. In the intervention group 46% (<i>n</i> = 18) logged in at least once over the 12-week period. A mean of 2.4 of 12 modules (<i>SD</i> 3.0) were completed; and no one completed the program. Thirty-three percent of caregivers in the intervention logged into the website at least once and none completed the full program. <b>Discussion:</b> The results from this pilot study suggest that the current design of the <i>Teens Taking Charge Cancer</i> RCT lacks feasiblity. Future web-based interventions for this group should include additional features to promote uptake and engagement with the program.</p>","PeriodicalId":29692,"journal":{"name":"Journal of Pediatric Hematology-Oncology Nursing","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2022-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"40403119","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}