Cancer survivors’ views on information provision on long term and late effects of pelvic radiotherapy: a qualitative study (#236)
To examine in depth the views and experiences of cancer survivors regarding the provision of information on long term and late (LT&L) effects of pelvic radiotherapy.
The sample was recruited from 418 respondents to a questionnaire survey of a random sample of cancer survivors who had had radiotherapy to the pelvic area 1 to 11 years previously. Maximum variation sampling was used to identify 30 respondents on the basis of gender, cancer site (rectum, bladder, prostate, cervix/uterus/endometrium), severity of symptoms (moderate, severe) and time since treatment (1 – 5 years, 6 – 11 years). Semi-structured interviews were conducted focusing on experiences of perceived treatment effects since end of active treatment and information received about them. Interviews were audio-recorded, transcribed and analysed thematically using the Framework approach, commonly used in the UK for applied health research.
Interviews were completed with 27 participants (16 women, 11 men). Seven main themes were identified: the benefits of information; the potential unintended and undesired consequences of information; the limitations of information in meeting emotional needs; the timing of information and readiness to receive it; the amount and level of detail; health care professionals as experts in medical/technical issues; and other cancer survivors as experts in practical issues
All participants valued information on LT&L effects of radiotherapy. Views differed on the best time for clinicians to tell patients but most favoured at or shortly after end of active treatment. Views and experiences on the other themes varied among participants.
Information on LT&L effects of pelvic radiotherapy is important to patients but providing it in a way that is of most benefit is not straightforward and requires attention to individual, changing needs.