ESTRO meets Asia 2024 - Abstract Book

S368

RTT – Patient experience and quality of life

ESTRO meets Asia 2024

Oncology Network, Trinity College Dublin, Dublin, Ireland. 4 Faculty of Health and Medical Sciences, University of Surrey, Guildford, United Kingdom

Purpose/Objective:

Radiation therapy (RT) is indicated as part of a combined modality treatment approach in Adolescents and Young Adults (AYAs) diagnosed with Hodgkins Lymphoma (HL). 5-year overall survival rates exceed 90% but survivors have a 4-fold increased risk of developing coronary heart disease and a 3-8-fold increase in developing a secondary cancer i.e. breast, thyroid with risks reducing as modern treatment strategies become more refined. Considering the potentially late presentation of late effects and variations in organisation of follow up care self management is important in the survivorship period. Information for empowerment is key to monitor, detect and treat late effects. However AYAs report deficits in their late effects knowledge which can be attributed to a lack of AYA specific information resources that reflect modern RT techniques. The purpose of this research is to identify the late effect information deficits of AYAs as they enter the survivorship period following modern RT treatment approaches (Involved Site RT-ISRT) for a HL diagnosis. These findings will be used to develop an information hub specifically for AYA survivors of HL as they enter the survivorship period. A grounded theory approach was used develop a theory surrounding late effects information provision. Qualitative data was collected via group discussions and individual interviews. The St Luke’s Radiation Oncology Network (SLRON) database was accessed to identify patients treated using an ISRT approach for a HL diagnosis when they were an AYA. Individuals were contacted by letter inviting them to take part in an online group discussion. An online 60-minute group discussion covering aspects of information needs following treatment was conducted by a mediator and facilitator. Focus group audio was transcribed, and thematic analysis used to identify themes related to information needs and age-appropriate information. Theoretical sampling was used to conduct Individual interviews to further explore themes to build this grounded theory. 4 individual interviews were conducted where aspects of self identify were explored. Material/Methods:

Results:

6 participants took part in the group discussion. 4 participants completed an individual interview. AYA survivors of HL receive little of no RT specific information support following RT for HL. Participants reported that their diagnosis and subsequent treatment matured them. Acute side effects such as fatigue, dysphagia and cardiac issues are common with some survivors describing their severity and duration as ‘on a different level.’ While work and college were supportive, participants were not always aware of sick leave entitlements describing this as a ‘blindspot’. Participants reported not being as 'concerned as I possibly should be' as regards late effects. Follow up varied with some participants having regular thyroid checks while others had little follow up.

Conclusion:

AYA survivors of HL receive little of no RT specific information support following RT for HL. Formal follow up varies e.g. led by GP, haematology, radiation or medical oncology and after having family support during treatment survivors tend to be in control of their own health now. AYAs receive excellent support when they return to college or work following RT and report that late effects do not concern them ‘as much as they possibly should’. Physical side effects such as fatigue, dysphagia and cardiac issues are common and survivors report frustration when they receive generic information i.e. ‘go for a walk’. While generally advised not to access information online, AYAs would welcome accurate, evidence-based RT specific information following treatment to support them in the survivorship period. This information will be used to co-create an information hub for AYA survivors of HL.