This retrospective study on safety and family satisfaction of a home-delivered chemotherapy program for children with a diagnosis of malignancy shows an excellent safety profile and high levels of parents’ satisfaction.
No adverse event occurred during the transport, storage, administration or disposal of chemotherapy, nor any acute deterioration of the patient’s condition after administration. Besides, the staff did not experience any safety issues. This finding highlights the safety of an established protocol for chemotherapy transport, storage, administration and disposal and underlines the need for specific training for nurses and clinicians4,7. These data are in line with other studies aimed at exploring the safety of home intravenous therapy programs for both adult and pediatric patients with cancer. In 1996, an Australian experience described 1688 visits for the administration of anticancer treatment to 179 adult cancer patients over five years (where “home” included patients’ workplaces, General Practitioners’ offices and daycare centers). They reported rare and minor complications, mainly difficulties with venous accesses, and a single serious complication, with a dystonic reaction to metoclopramide that required hospital evaluation8. 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 groups9. A more recent Canadian study with 136 children who received various services at home, including chemotherapy (1701 visits between 2013 and 2015, 58% of which for chemotherapy administration) did not report any adverse event10. Similarly, a Danish experience with 57 children reported no adverse events for a total 317 chemotherapy doses (vincristine and dactinomycin) administered at home11.
The questionnaire used in our study mainly focused on family perception and satisfaction. Most families reported great appreciation for the possibility of reducing the time burden for hospital access with the home chemotherapy program, and for the opportunity of maintaining a daily work/domestic routine. Most families reported a mean hospital access rate of fewer than five times a month. This finding is in line with qualitative data of the Canadian experience of Lippert et al., who showed that a home chemotherapy program helped families maintain their routine, limiting the physical and mental burden of hospital access10.
Most families positively regarded the possibility for their child of maintaining a play/study routine and living the moment of therapy with less trauma. Literature offers mixed evidence on this issue. In studies on the adult population, receiving chemotherapy at home helped patients in maintaining their identity and their capacity for making choices12. A qualitative focus on the cohort of 57 Danish children who received home chemotherapy pointed out that families perceived that being treated at home helped their child maintain a sense of normality13. On the contrary, the findings of Stevens et al. on 23 children pointed out that children receiving home chemotherapy tended to experience more distress. These authors suggested that in the long term children may have perceived that home was no longer a safe place, free from medical interventions9.
In our survey, families positively evaluated the opportunity for siblings to experience fewer interferences in their routine and to become familiar with their brother/sister’s disease and treatment. Literature points out that childhood cancer has a high impact on healthy siblings. They may be overlooked because of their ill brother/sister and may find it hard to cope with their parents’ difficulties14; moreover, some of them may experience school absenteeism, academic struggles and social restrictions from peers15.
We investigated satisfaction issues with 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.
We did not explore family perception of oral chemotherapy (6-mercaptopurine and oral methotrexate) during the maintenance phase of treatment for ALL. The role of the PHCT during the maintenance phase was that of periodic clinical assessment, blood sample drawing at home and communication with the Hub Oncology Centre of the blood results to plan dose adjustments and retesting. After discussion with the Hub Oncology Centre, the PHCT communicated the adjusted doses of oral medications to the families and scheduled the following blood sample drawing.
In the comment section, some parents underlined the importance of a continual interface between the Oncology Hub Centre and the PHCT to provide consistent communication. This comment leads to a clear improvement point because communication between Hub and Spoke centers is critical for the success of these projects. The Hub Centers must provide the treatment schedule with doses and rate of administration, and they should always be available to help in the safe management of adverse effects (i.e. febrile neutropenia). 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. Moreover, as a Spanish study on 87 adult patients with cancer pointed out, patients and families may perceive the staff as more focused and establish a closer relationship with them16.
All families suggested expanding the program to all children diagnosed with cancer in the region.
As far as cost analysis is concerned, the essential costs derive from the preparation, storage and transport of the drug, travel and use of hospital resources. Drug-related charges are the same if the therapy is delivered in an in-hospital setting. A pediatrician and a pediatric nurse were always involved in chemotherapy administration, and they used a car purchased explicitly for the program. However, it is impossible to calculate the exact travel costs because, on the same day, they made visits for purposes other than chemotherapy in the same area.
Most families positively evaluated the possibility of reducing the financial burden of hospital access. We could not make a quantitative analysis of the economic impact on families. However, we hypothesize that the project might help reducing expenses for families due to fewer travels and less personal days token from work for both parents. Financial disruption could have a substantial influence on parental distress during and after treatment of childhood cancer: this issue should be assessed and discussed thoroughly and respectfully during the treatment phases17,18.
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 nine years ago may cause a recall bias.
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 a childhood cancer diagnosis on family life.
Furthermore, this is the first evaluation of 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 and foundations and charities often provide families with additional financial support. Nevertheless, all families must face other costs, such as those related to parental job disruption, travels to and from the Hub center for exams, therapies or complications, sibling care and missed daycare or school days. 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.
Future trends of research should address cost-effectiveness with more specific outcome measures, explore the effect of home-delivered chemotherapy on children and families prospectively by comparing their quality of life with that of children and families who did not receive home-delivered chemotherapy.