Results of a quantitative survey to explore both perceptions of the purposes of follow-up and preferences for methods of follow-up delivery among service users, primary care practitioners and specialist clinicians after cancer treatment

Aims: To ascertain perceptions of reasons for follow-up after cancer treatment among service users (patients and carers), primary care practitioners and specialist clinicians (doctors and specialist nurses) and to identify levels of preference for different models of follow-up and the effect of an individual's experience on preferred models.

Materials and methods: A national survey designed to meet the needs of each key respondent group was carried out after a structured literature review, an extensive consultation process and a pilot scheme. Respondents were asked to assess their degree of preference for 10 pre-selected indications for follow-up. Eight models of follow-up were also identified and respondents were asked to state their experience and preference for each type. The questionnaire was distributed nationally via the 34 cancer networks in England and was available both online and in hard copy (postal). The uptake for the electronic format was in the main by primary care practitioners and specialist clinicians. Service users preferred the paper (postal) format. The survey was also publicised through the primary care and patient partnership forums at a Cancer Network Development event.

Results: In total, 2928 responses were received, comprising service users (21% of the sample), primary care practitioners (32%) and specialist clinicians (47%). Eighty-six per cent of responses were received from the 10 strategic health authorities in England, with the remaining 14% from Scotland, Wales and The Isle of Man. The responses from Scotland, Wales and the Isle of Man generally occurred where they interfaced with English cancer networks or had been engaged through word of mouth by colleagues. Among all respondents the main aims of cancer follow-up were considered to be: (1) to monitor for early complications after treatment; (2) to detect recurrences early; (3) to detect late effects of treatment. The most commonly experienced method of follow-up among all respondent groups was outpatient review with a doctor. This was considered to be the most preferred follow-up option among service users (86%). The least preferred option among service users was postal follow-up (32%). Primary care practitioners and specialist clinicians were more likely than service users to have experienced alternative methods of follow-up, such as telephone follow-up, self-triggered referral and non-specialist follow-up. These models were highly rated by those who had experience of them.

Conclusions: There was a reasonable level of consensus between service users, primary care practitioners and specialist clinicians as to the reasons for follow-up. Service users seemed to have higher expectations of follow-up, particularly in relation to detecting recurrences early. As respondents were more likely to prefer a method of follow-up delivery that they had experienced than one they had not; there could be resistance to change from established methods to new methods without adequate explanation. This suggests that the communication of new methods could be critical to their successful introduction.