Browsing by Subject "Childhood cancer"
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Item Assessing Needs and Experiences of Preparing for Medical Emergencies Among Children with Cancer and Their Caregivers(Wolters Kluwer, 2020-11) Mueller, Emily L.; Cochrane, Anneli R.; Moore, Courtney M.; Jenkins, Kelli B.; Bauer, Nerissa S.; Wiehe, Sarah E.; Pediatrics, School of MedicineBackground: Caregivers of children with cancer can experience stress when seeking care in the emergency department (ED). We sought to assess how caregivers prepare for and manage a medical emergency that arises in the community setting. Methods: A qualitative evaluation of ED visit preparations taken by children with cancer and their caregivers using self-reported interactive toolkits. Eligible participants included children with cancer (age: 11 to 21 y) currently receiving therapy for cancer diagnosis with an ED visit (besides initial diagnosis) within the previous 2 months and caregivers of same. Participants received a paper toolkit, which were structured as experience maps with several generative activities. Toolkits were transcribed, thematically coded, and iteratively analyzed using NVivo 12.0 software. Results: A total of 25 toolkits were received (7 children, 18 caregivers), with about three quarters of participants living >1 hour from the treating institution. Several important common themes and areas for improvement emerged. Themes included struggles with decision-making regarding when and where to seek ED care, preparing to go to the ED, waiting during the ED visit, repetition of information to multiple providers, accessing of ports, and provider-to-provider and provider-to-caregiver/patient communication. Conclusions: The information gained from this study has the potential to inform a tool to support this population in planning for and managing emergent medical issues. This tool has the potential to improve patient and caregiver satisfaction, patient-centered outcomes, and clinical outcomes.Item Childhood Cancer Awareness Program in Bungoma County, Kenya(Springer, 2025) Klootwijk, Larissa; Osamong, Lilian Apadet; Langat, Sandra; Njuguna, Festus; Kimaiyo, Sally; Vik, Terry A.; Kaspers, Gertjan; Mostert, Saskia; Pediatrics, School of MedicineBackground: Awareness could play a key role in reducing underdiagnosis and accelerating referral of childhood cancer in low- and middle-income countries and ultimately improve outcomes. This study describes the implementation of a childhood cancer awareness program in Bungoma County in Kenya, containing five components: (1) baseline data collection of primary healthcare facilities; (2) live training session for healthcare providers (HCP); (3) early warning signs posters; (4) online SMS course for HCP; and (5) radio campaign. Methods: This study was conducted between January and June 2023. All 144 primary healthcare facilities (level 2 and 3 health facilities) within Bungoma County were visited by the field team. Results: All 125 level 2 (87%) and 19 level 3 (13%) facilities participated in the study. National Health Insurance Fund (NHIF) failed to cover services in 37 (26%) facilities. HCP were more often reported absent at level 3 (89%) than level 2 (64%) facilities (P = 0.034). The 144 live training sessions were attended by over 2000 HCP. Distribution of 144 early warning signs posters resulted in 50 phone calls about suspected childhood cancer cases. Sixteen children were later confirmed with childhood cancer and treated. Online SMS learning was completed by 890 HCP. Knowledge mean scores improved between pre-test (7.1) and post-test (8.1; P < 0.001). Finally, 540 radio messages about childhood cancer and a live question-and-answer session were broadcasted. Conclusion: This study described the implementation of a childhood cancer awareness program in Kenya involving both HCP and the general public. The program improved HCP's knowledge and increased the number of referrals for children with cancer.Item Developing an organizing framework to guide nursing research in the Children’s Oncology Group (COG)(Elsevier, 2014-02) Kelly, Katherine Patterson; Hooke, Mary C.; Ruccione, Kathleen; Landier, Wendy; Haase, Joan E.; School of NursingObjectives To describe the development and application of an organizing research framework to guide COG Nursing research. Data Sources Research articles, reports and meeting minutes Conclusion An organizing research framework helps to outline research focus and articulate the scientific knowledge being produced by nurses in the pediatric cooperative group. Implication for Nursing Practice The use of an organizing framework for COG nursing research can facilitate clinical nurses’ understanding of how children and families sustain or regain optimal health when faced with a pediatric cancer diagnosis through interventions designed to promote individual and family resilience., The Children’s Oncology Group (COG) is the sole National Cancer Institute (NCI)-supported cooperative pediatric oncology clinical trials group and the largest organization in the world devoted exclusively to pediatric cancer research. It was founded in 2000 following the merger of the four legacy NCI-supported pediatric clinical trials groups (Children’s Cancer Group [CCG], Pediatric Oncology Group [POG], National Wilms Tumor Study Group, and Intergroup Rhabdomyosarcoma Study Group). The COG currently has over 200 member institutions across North America, Australia, New Zealand and Europe and a multidisciplinary membership of over 8,000 pediatric, radiation, and surgical oncologists, nurses, clinical research associates, pharmacists, behavioral scientists, pathologists, laboratory scientists, patient/parent advocates and other pediatric cancer specialists. The COG Nursing Discipline was formed from the merger of the legacy CCG and POG Nursing Committees, and current membership exceeds 2000 registered nurses. The discipline has a well-developed infrastructure that promotes nursing involvement throughout all levels of the organization, including representation on disease, protocol, scientific, executive and other administrative committees (e.g., nominating committee, data safety monitoring boards). COG nurses facilitate delivery of protocol-based treatments for children enrolled on COG protocols, and Nursing Discipline initiatives support nursing research, professional and patient/family education, evidence-based practice, and a patient-reported outcomes resource center. The research agenda of the Nursing Discipline is enacted through a well-established nursing scholar program.Item Growth differentiation factor 15 (GDF15) elevation in children with newly diagnosed cancer(Frontiers Media, 2023-12-11) Runco, Daniel V.; DiMeglio, Linda A.; Vanderpool, Charles P.; Han, Yan; Daggy, Joanne; Kelley, Mary M.; Mikesell, Raya; Zimmers, Teresa A.; Pediatrics, School of MedicineBackground: Growth differentiation factor 15 (GDF15), an inflammatory marker and mediator of adult cancer cachexia, remains largely unexplored in children. GDF15 increases nausea, vomiting, and anorexia in cancer and contributes to malnutrition, with the potential to be a cachexia therapeutic target. No studies have examined GDF15 in children with newly diagnosed cancer. Our pilot study compares GDF15 in children with newly diagnosed cancer to age- and sex-matched controls and correlates levels with anthropometric measurements and quality of life (QOL). Methods: Children with newly diagnosed cancer aged 2-21 years were enrolled with serum GDF15 ELISA, anthropometric measures [height, weight, and mid-upper arm circumference (MUAC)], and QOL assessments (using PedsQL™ Core and Gastrointestinal Modules), which were collected at baseline and repeated 3 months later. Serum GDF15 levels were obtained from age- and sex-matched controls for comparison. Results: A total of 57 participants enrolled (N=30, cancer group; N=27, control group) with a median age of 8.8 years (IQR 5.6-15.9 years). The participants were primarily male (54.4%), white (82.5%), and non-Hispanic (82.5%). Cancer diagnoses included acute lymphoblastic leukemia (N=8), lymphoma (N=8), neuroblastoma (N=5), soft tissue tumors (N=4), acute myeloid leukemia (N=2), and single participants with brain, kidney, and bone tumors. Baseline GDF15 was higher in the cancer cohort compared to the control cohort (median=614.6pg/mL and 320.5pg/mL, respectively; p<0.001). When examining participants with evaluable baseline and 3-month follow-up GDF15 levels (N=18), GDF15 was not statistically different (median=657.1pg/mL and 675.3pg/mL, respectively; p=0.702). A total of 13 of the 30 participants and 21 caregivers completed the PedsQL™ Core and Gastrointestinal symptom modules. QOL scores did not differ significantly at 3-month follow-up compared to baseline, but diarrhea worsened (p=0.017). Median participant response for diarrhea at baseline was 92.9 (IQR=92.9-96.4; N=13), which was significantly better than the follow-up (median=78.6; IQR= 71.4-92.9; p=0.017). There were no correlations between change in height, weight, or MUAC and change in GDF15 levels (p=0.351, 0.920, and 0.269 respectively). Conclusion: GDF15 was elevated in children with cancer at diagnosis compared to controls but did not correlate with anthropometric measurements or QOL. This pilot study will inform future prospective studies to better describe the natural history of GDF15 and its role in cachexia and as a potential therapeutic target.Item Influence of health insurance status on paediatric non-Hodgkin's lymphoma treatment in Kenya(BMJ Publishing Group, 2017-08-11) Martijn, Hugo A.; Njuguna, Festus; Olbara, Gilbert; Langat, Sandra; Skiles, Jodi; Martin, Stephen; Vik, Terry; Ven, Peter M. van de; Kaspers, Gertjan JL; Mostert, Saskia; Pediatrics, School of MedicineObjective: Non-Hodgkin's lymphoma (NHL) is the most common childhood malignancy in sub-Saharan Africa. Survival rates for NHL are higher than 80% in high-income countries.This study explores treatment outcomes of children with NHL in Kenya, a sub-Saharan low-income country, and the association between health insurance status at diagnosis and treatment outcomes. Design: This was a retrospective medical records study. All children diagnosed with NHL in 2010, 2011 and 2012 were included. Data on treatment outcomes and health insurance status at diagnosis were collected. Results: Of all 63 patients with NHL, 35% abandoned treatment, 22% had progressive or relapsed disease, 14% died and 29% had event-free survival. Most patients (73%) had no health insurance at diagnosis. Treatment outcomes in children with or without health insurance at diagnosis differed significantly (p=0.005). The most likely treatment outcome in children with health insurance at diagnosis was event-free survival (53%), whereas in children without health insurance at diagnosis it was abandonment of treatment (44%). Crude HR for treatment failure was 3.1 (95% CI 1.41 to 6.60, p=0.005) for uninsured versus insured children. The event-free survival estimate was significantly higher in children with health insurance at diagnosis than in patients without health insurance at diagnosis (p=0.003). Stage of disease at diagnosis was identified as a confounder of this association (adjusted HR=2.4, 95% CI 0.95 to 6.12, p=0.063). Conclusions: Survival of children with NHL in Kenya is much lower compared with high-income countries. Abandonment of treatment is the most common cause of treatment failure. Health insurance at diagnosis was associated with better treatment outcomes and survival.Item Influence of health-insurance on treatment outcome of childhood cancer in Western Kenya(Springer, 2023-07-15) Langat, Sandra; Njuguna, Festus; Olbara, Gilbert; Martijn, Hugo; Sieben, Cenne; Haverkort, Moniek; Njenga, Dennis; Vik, Terry A.; Kaspers, Gertjan; Mostert, Saskia; Pediatrics, School of MedicineBackground: Few governments in low and middle-income countries (LMIC) have responded favourably to the international plea for Universal Health Coverage. Childhood cancer survival in LMIC is often below 20%. Limited health-insurance coverage may contribute to this poor survival. Our study explores the influence of health-insurance status on childhood cancer treatment outcomes in a Kenyan academic hospital. Methods: This was a retrospective medical records review of all children diagnosed with cancer at Moi Teaching and Referral Hospital between 2010 and 2016. Socio-demographic and clinical data was collected using a structured data collection form. Fisher's exact test, chi-squared test, Kaplan-Meier method, log-rank test and Cox proportional hazard model were used to evaluate relationships between treatment outcomes and patient characteristics. Study was approved by Institutional Research Ethics Committee. Findings: From 2010-2016, 879 children were newly diagnosed with cancer. Among 763 patients whose records were available, 28% abandoned treatment, 23% died and 17% had progressive/relapsed disease resulting in 32% event-free survival. In total 280 patients (37%) had health-insurance at diagnosis. After active enrolment during treatment, total health-insurance registration level reached 579 patients (76%). Treatment outcomes differed by health-insurance status (P < 0.001). The most likely treatment outcome in uninsured patients was death (49%), whereas in those with health-insurance at diagnosis and those who enrolled during treatment it was event-free survival (36% and 41% respectively). Overall survival (P < 0.001) and event-free survival (P < 0.001) were higher for insured versus uninsured patients. The hazard-ratio for treatment failure was 0.30 (95% CI:0.22-0.39; P < 0.001) for patients insured at diagnosis and 0.32 (95% CI:0.24-0.41; P < 0.001) for patients insured during treatment in relation to those without insurance. Interpretation: Our study highlights the need for Universal Health Coverage in LMIC. Children without health-insurance had significantly lower survival. Childhood cancer treatment outcomes can be ameliorated by strategies that improve health-insurance access.Item Parental Reports on Late Effects and Follow-Up Needs: A Single-Center Assessment of Childhood Cancer Survivorship Care in Kenya(MDPI, 2025-03-12) Mageto, Susan Nyabate; Lemmen, Jesse P. M.; Njuguna, Festus Muigai; Midiwo, Nancy; Langat, Sandra Cheptoo; Vik, Terry Allan; Kaspers, Gertjan J. L.; Pediatrics, School of MedicineThe WHO Global Initiative for Childhood Cancer will likely increase the number of childhood cancer survivors in resource-poor countries. This study explored survivorship care in Kenya through parental reports on late effects and the follow-up needs of childhood cancer survivors. Parents of Kenyan childhood cancer survivors (under 18 years old) who completed treatment for at least one year were interviewed using semi-structured questionnaires from 2021 to 2022. Parents of 54 survivors were interviewed. Survivors had solid tumors (52%) and hematological tumors (48%). Most (52%) received chemotherapy combined with either surgery or radiotherapy. Many survivors (72%) experienced symptoms according to their parents. The most prevalent symptoms were pain (37%), fatigue (26%), and ocular problems (26%). Eleven percent of parents observed limitations in the daily activities of the survivors. Parents of survivors with two or more symptoms were more likely to rate symptoms as moderate to severe (p = 0.016). Parents expressed concern about late effects (48%). Only 28% were informed about late effects at the hospital, despite 87% indicating they would have welcomed this information. Follow-up care was deemed important by 98%. Recommendations included providing education about late effects and organizing survivor meetings. Survivorship clinics should be established to ensure that follow-up information and care are accessible.