Background: The number of people surviving breast cancer is increasing. Pain is rarely a symptom of breast cancer and for many individuals their first experience of cancer pain is during treatment. Individuals who have been treated for cancer may experience ‘long-term effects’, symptoms which arise from treatment but persist into remission, or ‘late effects’, symptoms which commence after remission. This is an emerging area in the cancer literature and the prevalence, degree and management of these effects are currently being explored. Electronic pain monitoring offers a potential solution to the clinical issue of managing pain in survivors of breast cancer, but at present pain in breast cancer survivors is not routinely monitored. It is yet to be found exactly which information and at what frequency will be most reliable, tolerable and useful.
Aims: Therefore this study aimed to compare pain diaries completed either when pain occurred (pain event driven) or at specific times (time driven). These online pain diaries included rating pain on a pain scale, its interference with daily activities and a requirement to predict pain for the following 12 hours. The study also explored how the individuals experienced using the online diaries and the pain scales.
Design & methods: The study used a mixed methods case series design consisting of visual analysis, correlation and thematic analysis. Ten participants were recruited who had all previously been diagnosed with breast cancer and were at least 2 years post-surgery and currently cancer-free, having received a number of different treatments. Participants were required to complete pain diaries, including predicting their pain, over a 12 day period switching between pain event driven and time driven (twice daily) schedules according to a predetermined pattern. Participants then took part in a semi-structured interview and a scaling task involving the 10 point pain scale.
Results: Pain levels and interference from pain varied greatly within and between individuals. The total number of diaries completed by each participant varied from four to seventeen. There were no significant differences in responses between the two diary types, and participants did not express a strong preference for one over another. The majority of predictions made were either ‘same as today’ or ‘don’t know’. It was not possible to determine prediction accuracy in most cases. Thematic analysis of interview data generated three meta-themes: (1) making sense of experiences, (2) uncertainties about the future and (3) research is beneficial.
Conclusions: This technology has shown great promise as an engaging, practical way to monitor pain. Predicting pain remains a difficult yet interesting task for participants. Limitations and wider implications are discussed
