Literature offers evidence of the safety of home-delivered chemotherapy for both adult and pediatric cancer and research on this topic dates back to the Nineties. In 1996, an Australian experience described 1688 visits for the administration of anticancer treatment to 179 adult patients over 5 years, reporting only rare and minor complications, and a single severe complication . In 2006, a Canadian experience on 23 children with ALL who received chemotherapy at home and in the hospital did not show any difference in adverse events rate for the two groups . A more recent Canadian study with 136 children (1701 visits between 2013 and 2015, 58% of which for chemotherapy administration) did not report any adverse event during home chemotherapy ; the same finding was that of a Danish experience with 57 children (317 chemotherapy doses administered at home) .
The data of our study are in line with these findings, with no adverse event occurring in the time reference interval, providing an excellent safety profile of home-delivered chemotherapy.
As for the broader topic of home assistance for pediatric oncology patients, our experience recalls that of the Genoa group, which offered supportive treatment to patients with hematological malignancies and after hematopoietic stem cell transplant but did not provide home intravenous chemotherapy [10, 11, 17]. Other teams in Italy reported on the provision of supportive treatment and end-of-life care at home settled by the Reference Oncology Team in the Hub Centre throughout cooperation with Spoke hospitals [18, 19].
As for the possibility of maintaining a family routine, literature provides evidence that a home chemotherapy program helped families maintain their routine, limiting the physical and mental burden of hospital access and helping children in maintaining a sense of normality [9, 20]. However, Stevens et al. reported that children receiving home chemotherapy tended to experience more distress, hypothesizing that in the long term children may have perceived that home was no longer a safe place, free from medical interventions .
Childhood cancer has a high impact on healthy siblings, both in the short and in the long term . Siblings may be overlooked because of their ill brother/sister and may find it hard to cope with their parents’ difficulties ; moreover, some of them may experience school absenteeism, academic struggles and social restrictions from peers .
Our data are coherent with these literature findings. Most families reported great appreciation for the possibility of reducing the time burden for hospital access with the home chemotherapy program, and maintaining a daily work/domestic routine, with less than five hospital accesses a month. Moreover, they favorably evaluated the opportunity for siblings to experience fewer interferences in their routine and to become familiar with their brother/sister’s disease and treatment.
We adopted a simplified questionnaire with problem-oriented questions to minimize the dropout rate. We did not explicitly direct our questions to children and healthy siblings because there were many pre-school children to avoid interpretation bias.
In the comment section, some parents expressed the importance of a continual interface between the Oncology Hub Centre and the PHCT to provide consistent communication. This point is crucial for the success of such projects. Hub Centers must provide the treatment schedule with doses and rate of administration, and they should always be available to guide in the safe management of adverse effects. The PHCT should provide constant feedback on their evaluation of patients.
Home care may help the staff in developing a broader observation of patients and families in their environment: patients and families may perceive the staff as more focused and establish a closer relationship with them .
All families suggested expanding the program to all children diagnosed with cancer in the Region.
As far as cost analysis is concerned, literature provides favorable evidence on the financial impact of home care assistance programs [7, 11].
The daily cost of a single inpatient treatment for acute lymphoblastic leukemia is € 969,00 in the Hub Oncology Centre. On the contrary, the daily cost of a single home access for chemotherapy delivery is € 134,34 for a vincristine injection, € 136,44 for a vinblastine injection and € 138,54 for a cytarabine injection. A pediatrician and a pediatric nurse are always involved in chemotherapy administration, and they use a car purchased explicitly for the program. We speculate that the travel cost for a single home access is € 10. However, it is important to consider that the PHCT provides visits and procedures other than chemotherapy delivery to other patients in the same area, for a mean rate of six visits per day. This organization implies that it is difficult to extrapolate the exact travel cost for a single access.
Most families positively evaluated the possibility of reducing the financial burden of hospital access. We hypothesize that the project might help reducing expenses for families due to fewer travels and less personal days taken from work for both parents, but also missed daycare or school days for healthy siblings. Financial disruption could have a substantial influence on parental distress during and after treatment of childhood cancer and must be carefully considered [25, 26].
This study has some limits. We acknowledge its retrospective nature, the limited sample size, and the fact that we did not adopt a validated scale for quality of life measurement. We also recognize that asking families to recall their experience with the home chemotherapy program from as long as 9 years ago may cause a recall bias. Furthermore, we did not investigate the psychological impact on the families and the operators’ perspective.
The points of strengths are an extended time window (8 years), the inclusion of different diagnostic groups (leukemias and solid tumors) and the analysis of specific issues related to the impact of childhood cancer on family life.
Furthermore, this is the first published report regarding a home chemotherapy program for children with cancer in Italy. The National Health System in Italy ensures full coverage of direct medical expenses for patients with cancer, with foundations and charities often providing additional financial support. Nevertheless, all families must face other costs. Our findings suggest that home-delivered chemotherapy may help reduce this burden. Ultimately, this is an example of cooperation and integration between Hub Centers and peripheral hospitals, which could result in resource rationalization and cost reduction for both families and the Health System.
Our sample covered years between 2011 and 2019: during data collection and analysis, the pandemic COVID-19 hit Italy, as it did in the whole world, posing unique challenges to the health care services . The enormous effort of the National Health System in Italy pointed out the need for new organization models, especially for children with cancer and other complex chronic conditions. In this unprecedented scenario, a home chemotherapy program looks extremely safe and useful, since it reduces the need for travelling and hospital stay, thus reducing the risk of infection for both children and families and limiting hospital overcrowding.
Future trends of research should address cost-effectiveness with more specific outcome measures, the effect of home-delivered chemotherapy on children and families prospectively and include a higher number of patients with solid tumors.