Sharing decisions regarding radiotherapy for Hodgkin lymphoma: a qualitative study of the experiences of patients and clinicians in the UK
Radiotherapy (RT) increases the chance of cure of Hodgkin lymphoma (HL)  but also has risks, including cardiac disease and second cancers . Whilst guidelines broadly indicate which patients may benefit from RT, there are individual factors that can substantially affect the balance of benefit and risk. Little is known about how these factors are incorporated into decision-making, or patients’ preferences for involvement in decisions.
This study aimed to explore the RT decision-making process, and better understand how patients’ preferences are taken into account.
We conducted semi-structured interviews with 15 people treated for HL, and 12 clinicians who specialised in the treatment of HL. We used maximal variation sampling, and Braun and Clarke’s thematic analysis. The study was co-designed with four people previously treated for HL and approved by the North of Scotland Ethics Committee.
The decision about RT was commonly made by clinicians and presented to patients as a conclusion. Although patients acknowledged they could disagree with the clinicians’ recommendation, they often perceived themselves to be in a life-threatening situation with no real choice about treatment. Patients were highly engaged and keen to receive information, but the majority felt too overwhelmed by the complexity of their illness to participate in RT decisions.
Patients and clinicians agreed that the ultimate responsibility for RT decisions lay with healthcare professionals, and that it was too challenging to lay the burden of this decision solely on the person with HL. Clinicians considered individual patient factors when recommending RT, and recognised the importance of ensuring that decisions were in line with a person’s values and preferences (Figure 1).
Both patients and clinicians felt shared decision-making was hampered by the lack of easily accessible information predicting the risks of RT for an individual.
Decisions about RT lay mostly with clinicians, but individual patient circumstances were considered. The availability of data to understand the risks of RT for an individual would enhance the decision-making process.
 Shaikh et al. Consolidation radiotherapy following positron emission tomography complete response in early-stage Hodgkin lymphoma: a meta-analysis. Leuk Lymphoma 2020;0:1
 Gustavsson et al. A systematic overview of radiation therapy effects in Hodgkin’s lymphoma. Acta Oncol 2003;42:589