SHORT COMMUNICATION Cancer patients’ and clinicians’ opinions on the best time in secondary care to approach patients for recruitment to longitudinal questionnaire-based research Laura Ashley & Helen Jones & Galina Velikova & Penny Wright Received: 30 November 2011 / Accepted: 28 May 2012 / Published online: 22 June 2012 # Springer-Verlag 2012 Abstract Purpose A priority of the UK National Cancer Survivorship Initiative is to increase collection of patient-reported out- come measures (PROMs) longitudinally post-diagnosis. This study aimed to gather cancer patients’ and clinicians’ opinions and preferences about the best time, in the second- ary care pathway, to approach patients about joining longi- tudinal observational PROMs-based (LO-PROMs) research. Methods The sample comprised 15 patients with non- metastatic breast, colorectal or prostate cancer, and 15 clini- cians including surgeons, oncologists and nurse specialists. Patients and clinicians participated in one face-to-face topic- guided audio-recorded interview. Data were analysed using thematic content analysis. Results Patients did not want to be approached about LO- PROMs research early in the care pathway, near diagnosis and treatment planning or before any surgery and its results. Patients felt that LO-PROMs research is best introduced from the time people are ‘settled’ on (post-surgical) treat- ment regimens, provided they are coping well emotionally and not experiencing significant physical side effects; patients emphasised variability in people’ s experience of and response to cancer and treatment. Clinicians also ad- vised against approach near diagnosis, although generally recommended initiating recruitment somewhat sooner than patients. Conclusions Patients expressed strong homogeneous pref- erences and ideally wanted to be approached about LO- PROMs research when their initial fears and anxiety about cancer treatment and survival had diminished, and they felt some sense of certainty and optimism about the future. As the timeline of clinical events varies, maximising re- cruitment may mean approaching patients at varied time points post-diagnosis. Further recruitment implications are discussed. Keywords Cancer . Patients’ views . Clinicians’ views . Research participation . Recruitment . Questionnaires Introduction Cancer survivors are a large and growing group [1]. Re- search has found that some survivors experience ongoing physical, psychosocial and financial difficulties yet has also shown that many other survivors report comparable quality of life to their general population peers [2–4]. What is not comprehensively understood is which survivors experience what sorts of difficulties and at what points in the cancer trajectory; survivorship studies to date have mostly exam- ined a limited range of outcomes, often cross-sectionally or in the shorter term, and in non-UK samples [4–6]. Greater knowledge of the natural history of survivorship, and of survivors’ difficulties, is vital to inform the development of support services and to help target provision towards those most in need. To this end, the UK National Cancer Survivorship Initiative calls for increased large-scale pro- spective collection of patient-reported outcome measures (PROMs), assessing multidimensional quality of life, rou- tinely for the longer term (i.e. 15–20 years) post-diagnosis [7]. Recent years have seen increasing recognition of the importance, and challenge, of linking PROMs with patients’ clinical information to identify clinical predictors of survi- vorship difficulties and facilitate risk stratification [8]. L. Ashley (*) : H. Jones : G. Velikova : P. Wright Psychosocial Oncology and Clinical Practice Research Group, University of Leeds, St James’ s Institute of Oncology, Beckett Street, Leeds LS9 7TF, UK e-mail: l.j.ashley@leeds.ac.uk Support Care Cancer (2012) 20:3365–3372 DOI 10.1007/s00520-012-1518-4