TY - JOUR

T1 - Development of an intravenous chemotherapy intervention for children and adolescents with cancer administered by their parents at home (INTACTatHome)

AU - Roug, Louise Ingerslev

AU - Topperzer, Martha Krogh

AU - Michelsen, Rikke Thenning

AU - Jarden, Mary

AU - Wahlberg, Ayo

AU - Hjalgrim, Lisa Lyngsie

AU - Hansson, Helena

N1 - Funding Information: Open access funding provided by Royal Danish Library. This study was funded by the Novo Nordisk Foundation, Denmark and the Danish Childhood Cancer Foundation (Børnecancerfonden). Funding Information: The authors thank all participating children, adolescents, parents, HCP, and management at the DPOH and adult hematology and oncology departments of Copenhagen University Hospital for their assistance, engagement, and patience. Gratitude is also extended to Pernille Roland (previous chief nurse) for her management support, Vibeke Spager for her assistance with facilitating Workshop 2, Louise Hejlmann Nielsen and Signe Sleiborg for her assistance with the electronic patient journal, and Lorna Storey for generously sharing experiences and guidelines on the parent-led home chemotherapy program in Dublin, Ireland. Publisher Copyright: © 2023, The Author(s).

PY - 2023

Y1 - 2023

N2 - Background: Families of children and adolescents with cancer strive to maintain routines and normalcy during the child’s treatment trajectory that requires frequent hospital visits. Intravenous chemotherapy at home can reduce time spent on the frequent hospital visits and mitigate disruption in daily life. Studies on home chemotherapy for children and adolescents with cancer are limited, as is knowledge of family and health care professionals’ needs, and knowledge required to inform adaptation or replication of interventions in other settings. The aim of this study was to develop and describe an evidence-based home chemotherapy intervention that is feasible and safe for children and adolescents and suitable for future feasibility testing. Methods: The Medical Research Council’s guidance for developing complex interventions in health care and the framework of action developed by O’Cathain et al. was used as theoretical frameworks to structure the development process. A literature search, an ethnographic study, and interviews with clinical nurse specialists from adult cancer departments formed the evidence base. Educational learning theory to support and understand the intervention was identified. Stakeholder perspectives were explored in workshops with health care professionals and parent-adolescent interviews. Reporting was qualified using the GUIDED checklist. Results: A stepwise educational program to teach parents how to administer low-dose chemotherapy (Ara-C) to their child at home and a simple and safe administration procedure were developed. Key uncertainties were identified, including barriers and facilitators impacting future testing, evaluation, and implementation. Causal assumptions and reasoning for how the intervention leads to short-term outcomes and long-term impact were clarified in a logic model. Conclusions: The iterative and flexible framework allowed for integration of existing evidence and new data and was successfully applied to the development process. The detailed report on the development process of the home chemotherapy intervention can enhance adaptation or replication of the intervention to other settings and thereby mitigate family disruption and stress of frequent hospital visits for these treatments. The study has informed the next phase of the research project that aims to test the home chemotherapy intervention in a prospective single-arm feasibility study. Trial registration: ClinicalTrials.gov ID: NCT05372536.

AB - Background: Families of children and adolescents with cancer strive to maintain routines and normalcy during the child’s treatment trajectory that requires frequent hospital visits. Intravenous chemotherapy at home can reduce time spent on the frequent hospital visits and mitigate disruption in daily life. Studies on home chemotherapy for children and adolescents with cancer are limited, as is knowledge of family and health care professionals’ needs, and knowledge required to inform adaptation or replication of interventions in other settings. The aim of this study was to develop and describe an evidence-based home chemotherapy intervention that is feasible and safe for children and adolescents and suitable for future feasibility testing. Methods: The Medical Research Council’s guidance for developing complex interventions in health care and the framework of action developed by O’Cathain et al. was used as theoretical frameworks to structure the development process. A literature search, an ethnographic study, and interviews with clinical nurse specialists from adult cancer departments formed the evidence base. Educational learning theory to support and understand the intervention was identified. Stakeholder perspectives were explored in workshops with health care professionals and parent-adolescent interviews. Reporting was qualified using the GUIDED checklist. Results: A stepwise educational program to teach parents how to administer low-dose chemotherapy (Ara-C) to their child at home and a simple and safe administration procedure were developed. Key uncertainties were identified, including barriers and facilitators impacting future testing, evaluation, and implementation. Causal assumptions and reasoning for how the intervention leads to short-term outcomes and long-term impact were clarified in a logic model. Conclusions: The iterative and flexible framework allowed for integration of existing evidence and new data and was successfully applied to the development process. The detailed report on the development process of the home chemotherapy intervention can enhance adaptation or replication of the intervention to other settings and thereby mitigate family disruption and stress of frequent hospital visits for these treatments. The study has informed the next phase of the research project that aims to test the home chemotherapy intervention in a prospective single-arm feasibility study. Trial registration: ClinicalTrials.gov ID: NCT05372536.

KW - Childhood cancer

KW - Complex intervention

KW - Development

KW - Experiences

KW - Health care professionals

KW - Home chemotherapy

KW - Parents

KW - Pediatric oncology

U2 - 10.1186/s12913-023-09613-2

DO - 10.1186/s12913-023-09613-2

M3 - Journal article

C2 - 37340397

AN - SCOPUS:85162876805

VL - 23

JO - BMC Health Services Research

JF - BMC Health Services Research

SN - 1472-6963

IS - 1

M1 - 664

ER -