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Oral chemotherapy in paediatric oncology in the UK: problems, perceptions and information needs of parents
Nanna Christiansen1, Kevin M G Taylor, Catherine Duggan
1Pharmacy Department, Royal London Hospital, Pathology and Pharmacy Building, 80 Newark Street, E1 2ES London, UK. nanna.christiansen@bartsandthelondon.nhs.uk
Insights
Parents of children undergoing oral chemotherapy face challenges despite good support. Improvements are needed in patient education and information delivery regarding chemotherapy handling and adherence.
Area of Science:
- Paediatric Oncology
- Cancer Treatment Adherence
- Patient Education
Background:
- Oral chemotherapy is increasingly used in paediatric oncology.
- Parents and carers play a crucial role in administering and managing oral chemotherapy at home.
- Understanding parental challenges and information needs is vital for optimizing treatment outcomes.
Purpose of the Study:
- To identify challenges, perceptions, and information requirements of parents and carers of children receiving oral chemotherapy.
- To evaluate parental awareness of chemotherapy's adverse effects and adherence to handling precautions.
- To assess parental understanding of treatment regimens and identify areas for improved education.
Main Methods:
- Semi-structured interviews were conducted with 55 parents/carers at two UK Paediatric Oncology Centres.
- A questionnaire focused on medication awareness, information needs, and handling procedures.
- Data analysis included descriptive and inferential statistics, supplemented by thematic analysis of open-ended responses.
Main Results:
- Most parents perceived oral and intravenous chemotherapy as equally potent.
- While aware of adverse effects, three-quarters did not consistently use recommended handling precautions.
- Parents reported difficulties with drug administration, supply, and regimen adherence, despite high self-reported compliance and use of reminders.
Conclusions:
- Paediatric oncology centres provide good support systems for families managing oral chemotherapy.
- Significant improvements are needed in educating and informing parents/carers about oral chemotherapy.
- Enhanced educational strategies are essential to address identified challenges and improve treatment management.
Objective:
To identify problems, perceptions and information needs of parents and carers regarding oral chemotherapy.
Setting:
Two Paediatric Oncology Centres in the UK.
Methods:
A semi-structured questionnaire was developed in consultation with professionals working within paediatric oncology. Questionnaires were administered in face-to-face interviews with parents of patients attending clinic appointments. Responses to questions were coded and entered into a database for descriptive and inferential analyses. Responses to open questions were coded using simple thematic analysis whereby codes and themes emerged from the data and were compared and contrasted between respondents. Findings were further validated by quotes from interviewees to open questions.
Main Outcome Measures:
Awareness and knowledge of medicines, information needs and handling procedures.
Results:
Fifty-five interviews were conducted. Most interviewees viewed oral and intravenous chemotherapy as equally important and potent. Three-quarters of parents were aware of the adverse effects chemotherapy could have on them, worryingly three-quarters of the same group of parents did not use all the handling precaution methods advised by health care professionals. Knowledge of acute lymphoblastic leukaemia maintenance treatment was assessed in 47 interviewees; 31 parents were able to explain the reasons for maintenance chemotherapy. Interviewees felt well informed by the hospital and found it easy to access information they needed. The data suggest the majority of parents had a great interest in understanding the disease and treatment, with 91% using the internet to access further information. Three-quarters of parents faced some kind of difficulty when dealing with oral chemotherapy, including problems with the patient not taking the drug, technical and supply problems and problems following the drug regimen. Self-reported compliance in this study was high with 69.1% of interviewees stating they never forgot a single dose. 72.2% of interviewees used a reminder method, of which 81.6% were written reminders.
Conclusion:
This study highlights that although the support systems offered by the paediatric oncology centres were good, certain areas need improvement, specifically the manner in which parents/carers are educated and informed.
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