Evaluating implementation of a hospital‐based cancer registry to improve childhood cancer care in low‐ and middle‐income countries
Abstract Purpose Cancer is a leading cause of global childhood mortality, affecting 400,000 children annually. While treatable with modern therapies, children living in low‐ and middle‐income countries (LMICs) have limited access to care and lower survival rates. Hospital‐based cancer registries (HB...
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| Format: | Article |
| Language: | English |
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Wiley
2024-09-01
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| Series: | Cancer Medicine |
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| Online Access: | https://doi.org/10.1002/cam4.70125 |
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| author | Melissa R. Maas Allison Yang Michele A. Muir James B. Collins IV Courtney Canter Gevorg Tamamyan Inam Chitsike Francine Kouya Kim Hoa Nguyen Alia Ahmad Ana Patricia Alcasabas Yi‐Jin Gao Kimberly J. Johnson Gia Ferrara Nickhill Bhakta Benyam Muluneh |
| author_facet | Melissa R. Maas Allison Yang Michele A. Muir James B. Collins IV Courtney Canter Gevorg Tamamyan Inam Chitsike Francine Kouya Kim Hoa Nguyen Alia Ahmad Ana Patricia Alcasabas Yi‐Jin Gao Kimberly J. Johnson Gia Ferrara Nickhill Bhakta Benyam Muluneh |
| author_sort | Melissa R. Maas |
| collection | DOAJ |
| description | Abstract Purpose Cancer is a leading cause of global childhood mortality, affecting 400,000 children annually. While treatable with modern therapies, children living in low‐ and middle‐income countries (LMICs) have limited access to care and lower survival rates. Hospital‐based cancer registries (HBCRs) collect detailed patient information to critically evaluate and evolve care. The St. Jude Global Childhood Cancer Analytics Resource and Epidemiological Surveillance System (SJCARES) is a cloud‐based HBCR network facilitating quality data collection of pediatric cancer. Wide variation in the success of implementation has warranted further research into the implementation approach, to create a sustainable and adaptable HBCR in LMICs. Methods Seven of 89 sites using the SJCARES registry were selected, stratified by global region and stage of implementation. Semi‐structured interviews were conducted with key groups (clinicians, administrators, data clerks) using an interview guide developed from the Consolidation Framework for Implementation Research (CFIR). Interviews were conducted via a video‐telephone software program and transcribed by a transcription service. Transcripts were thematically coded using rapid qualitative analysis. Results A total of 18 participants (11 clinicians, 4 administrators, 3 data clerks) were interviewed. Several barrier themes were identified, including: difficulty integrating the registry into existing workflow; lack of resources; lack of government or administrative support; and damaged, misplaced, or illegible medical records. Facilitator themes were identified, including: internal support for the registry; clear and extensive training; and dedicated support staff. Conclusion Interviewed participants identified key barriers and facilitators to the implementation of the SJCARES registry across multiple phases. We plan to use these results to develop targeted implementation strategies including a readiness assessment tool to help guide more successful implementation of the SJCARES registry and other HBCRs in LMICs. |
| format | Article |
| id | doaj-art-2d7a4949092d4f1e999f4249f5316df3 |
| institution | Kabale University |
| issn | 2045-7634 |
| language | English |
| publishDate | 2024-09-01 |
| publisher | Wiley |
| record_format | Article |
| series | Cancer Medicine |
| spelling | doaj-art-2d7a4949092d4f1e999f4249f5316df32025-02-07T09:08:08ZengWileyCancer Medicine2045-76342024-09-011317n/an/a10.1002/cam4.70125Evaluating implementation of a hospital‐based cancer registry to improve childhood cancer care in low‐ and middle‐income countriesMelissa R. Maas0Allison Yang1Michele A. Muir2James B. Collins IV3Courtney Canter4Gevorg Tamamyan5Inam Chitsike6Francine Kouya7Kim Hoa Nguyen8Alia Ahmad9Ana Patricia Alcasabas10Yi‐Jin Gao11Kimberly J. Johnson12Gia Ferrara13Nickhill Bhakta14Benyam Muluneh15Division of Pharmacotherapy and Experimental Therapeutics University of North Carolina Eshelman School of Pharmacy Chapel Hill North Carolina USADivision of Pharmacotherapy and Experimental Therapeutics University of North Carolina Eshelman School of Pharmacy Chapel Hill North Carolina USAGSK Durham North Carolina USADivision of Pharmacotherapy and Experimental Therapeutics University of North Carolina Eshelman School of Pharmacy Chapel Hill North Carolina USANorth Carolina Translational and Clinical Sciences Institute Chapel Hill North Carolina USAPediatric Cancer and Blood Disorders Center of Armenia Yeolyan Hematology and Oncology Center Yerevan ArmeniaParirenyatwa Group of Hospitals Harare ZimbabweMbingo Baptist Hospital CameroonHue Central Hospital Hue VietnamUniversity of Child Health Sciences, The Children's Hospital Lahore PakistanUniversity of Philippine—Philippine General Hospital Manila PhilippinesShanghai Children's Medical Center Shanghai ChinaBrown School at Washington University in St. Louis St. Louis Missouri USADepartment of Global Pediatric Medicine St. Jude Children's Research Hospital Memphis Tennessee USADepartment of Global Pediatric Medicine St. Jude Children's Research Hospital Memphis Tennessee USADivision of Pharmacotherapy and Experimental Therapeutics University of North Carolina Eshelman School of Pharmacy Chapel Hill North Carolina USAAbstract Purpose Cancer is a leading cause of global childhood mortality, affecting 400,000 children annually. While treatable with modern therapies, children living in low‐ and middle‐income countries (LMICs) have limited access to care and lower survival rates. Hospital‐based cancer registries (HBCRs) collect detailed patient information to critically evaluate and evolve care. The St. Jude Global Childhood Cancer Analytics Resource and Epidemiological Surveillance System (SJCARES) is a cloud‐based HBCR network facilitating quality data collection of pediatric cancer. Wide variation in the success of implementation has warranted further research into the implementation approach, to create a sustainable and adaptable HBCR in LMICs. Methods Seven of 89 sites using the SJCARES registry were selected, stratified by global region and stage of implementation. Semi‐structured interviews were conducted with key groups (clinicians, administrators, data clerks) using an interview guide developed from the Consolidation Framework for Implementation Research (CFIR). Interviews were conducted via a video‐telephone software program and transcribed by a transcription service. Transcripts were thematically coded using rapid qualitative analysis. Results A total of 18 participants (11 clinicians, 4 administrators, 3 data clerks) were interviewed. Several barrier themes were identified, including: difficulty integrating the registry into existing workflow; lack of resources; lack of government or administrative support; and damaged, misplaced, or illegible medical records. Facilitator themes were identified, including: internal support for the registry; clear and extensive training; and dedicated support staff. Conclusion Interviewed participants identified key barriers and facilitators to the implementation of the SJCARES registry across multiple phases. We plan to use these results to develop targeted implementation strategies including a readiness assessment tool to help guide more successful implementation of the SJCARES registry and other HBCRs in LMICs.https://doi.org/10.1002/cam4.70125cancer outcomescancer registryclinical cancer researchpediatric cancer |
| spellingShingle | Melissa R. Maas Allison Yang Michele A. Muir James B. Collins IV Courtney Canter Gevorg Tamamyan Inam Chitsike Francine Kouya Kim Hoa Nguyen Alia Ahmad Ana Patricia Alcasabas Yi‐Jin Gao Kimberly J. Johnson Gia Ferrara Nickhill Bhakta Benyam Muluneh Evaluating implementation of a hospital‐based cancer registry to improve childhood cancer care in low‐ and middle‐income countries Cancer Medicine cancer outcomes cancer registry clinical cancer research pediatric cancer |
| title | Evaluating implementation of a hospital‐based cancer registry to improve childhood cancer care in low‐ and middle‐income countries |
| title_full | Evaluating implementation of a hospital‐based cancer registry to improve childhood cancer care in low‐ and middle‐income countries |
| title_fullStr | Evaluating implementation of a hospital‐based cancer registry to improve childhood cancer care in low‐ and middle‐income countries |
| title_full_unstemmed | Evaluating implementation of a hospital‐based cancer registry to improve childhood cancer care in low‐ and middle‐income countries |
| title_short | Evaluating implementation of a hospital‐based cancer registry to improve childhood cancer care in low‐ and middle‐income countries |
| title_sort | evaluating implementation of a hospital based cancer registry to improve childhood cancer care in low and middle income countries |
| topic | cancer outcomes cancer registry clinical cancer research pediatric cancer |
| url | https://doi.org/10.1002/cam4.70125 |
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