Home-based chemotherapy safe for children with cancer

The parents of children with cancer juggle work, siblings and caregiving tasks in a life in which the calendar is constantly being revised. In just a few days, hospital visits and waiting times disrupt everyday life. For most people, treatment naturally takes place in a hospital – by professionals, in a clinical setting. But what if parts of the treatment could be moved home and carried out by the parents? This question was investigated by a research group from the Department of Paediatrics and Adolescent Medicine at Rigshospitalet in Copenhagen in a new study led by Louise Ingerslev Roug.

She and her colleagues set out to test whether parents could learn to give low-dose chemotherapy through a central venous catheter already in place – and how this would affect both treatment and family life.

The results have been published in Pediatric Blood & Cancer. According to the researchers, Denmark is among the first countries to systematically test the demand for and acceptability of home-based parent-administered treatment with low-dose cytarabine, a type of chemotherapy for children. The researchers conclude that this approach is both safe and feasible and that parents generally felt comfortable in the role.

“We do not intend to move treatment home at any cost,” says Louise Ingerslev Roug. “But we have shown that it makes a lot of sense in some cases – and that it can reduce some of the practical and mental strain that many families experience.”

How to move chemotherapy home

The inspiration for the study came from real life. Louise Ingerslev Roug and colleagues observed how parents in other contexts increasingly take on care tasks such as tube feeding, catheter care and medication administration – both in the hospital and at home. However, this did not apply to intravenous chemotherapy, which was still reserved for the hospital, and which meant many visits for families. This led them to wonder whether chemotherapy could also become a home-based task for some families.

The study included 15 children aged 2–15 years, all being treated for blood cancer, including acute lymphocytic leukaemia. All received low-dose cytarabine given once a day for four days at a time, repeated several times during the course of treatment. This normally requires hospitalisation or daily hospital visits. But in this study, families were given the opportunity to take the treatment home.

The parents first participated in a thorough training programme. They practised on dolls with venous catheters and learned how to handle them and keep them clean and what to do if something went wrong – and always administered the first dose under supervision at the hospital.

The medicine was only administered at home when both parents and the teaching nurse felt confident and secure.

Of the 312 planned doses, 175 (56%) were administered at home. The trend was clear: the further along in the course of treatment, the more doses the parents administered at home. In the first treatment cycle, one quarter were administered at home – in the fourth cycle, 72%.

Chemotherapy at home: from sofa to summer cottage

Louise Ingerslev Roug says that both children and parents quickly adapted to the new procedure. The chemotherapy was administered at the dining table, on the sofa or in the child’s bedroom – surrounded by teddy bears and everyday life. Families could visit their summer cottage or family and friends.

“The home-based care meant that the children could stay in their own secure environment – which gave the family some valuable peace of mind in this extremely stressful situation,” she points out. The parents’ experience of caregiver demand was examined using the validated The Care of My Child with Cancer questionnaire, which measures the time and effort parents use in emotional, practical and social aspects of caregiving for the child. 

“We suspected that home-based treatment might put extra pressure on families, but the results indicated no correlation between home-based treatment and increased caregiver demand of parents. says Louise Ingerslev Roug.

She emphasises that several parents felt that home-based treatment gave them more control, fewer interruptions and better flow in their everyday lives.

“The parents were happy about avoiding repeated trips back and forth and could instead take their child’s rhythm and needs into account.”

Keeping home-based chemotherapy safe

From the outset, the researchers anticipated that human or technical error would occur during the study and data on complications were systematically collected so that lessons could be learned quickly from errors or inappropriate workflows, the home-based treatment could be adjusted, and thus more similar errors could be avoided. 

Louise Ingerslev Roug explains how 15 minor errors or accidents occurred during the trial. These ranged from handling equipment to misunderstanding instructions. None of the incidents had serious consequences, and all were actively used to improve the procedure, workflows, and the training programme.

Two of the families participating ended up receiving all treatment at the hospital: one because of complications and the other because it fitted their daily life and made them feel secure.

Families could be excluded from participation – for example, if they were under too much pressure in their daily lives or had language difficulties. According to Louise Ingerslev Roug, this raises some fundamental questions:

“We are responsible for ensuring that the treatment for the child is safe. Nevertheless, we must ensure that this is not solely available to the strongest families. This requires us to think about support, training and access right from the start.”

What the trial means for future cancer care

Although the trial only included 15 families, it provides valuable knowledge based on systematic observation and practical testing. And it is precisely this strong anchoring in clinical practice that makes the study so special, according to Louise Ingerslev Roug:

“We did not measure survival or treatment response. We examined what is needed for home chemotherapy to work and key elements are trust and cooperation, training and close coordination.”

She hopes that the results will contribute to a new way of thinking about cancer treatment for children: not to replace hospital care but to supplement and give families more options.

The project has led to changes in the practices of the Department of Paediatrics and Adolescent Medicine, and home-based treatment with chemotherapy is now an option for families who have the necessary resources. The teaching materials are being continually developed, and ideas are on the drawing board to expand intravenous home-based treatment. The researchers were motivated by several of the parents involved subsequently appreciating that home treatment gave them a sense of ownership and shared responsibility.

Louise Ingerslev Roug hopes that the experiences can inspire other departments – both in Denmark and elsewhere. She and her colleagues at the Department are continuing to investigate how home-based treatment can be organised even better for families, so that it continues to help them maintain part of their everyday life during treatment and does not become a burden.

“We must be ambitious,” she says. “Not by moving everything home, but by daring and continuing to rethink what can be done differently and how, if it benefits these families.”