Risk Stratified Follow-Up for Endometrial Cancer: The Clinicians’ Perspective

Abstract

Risk-stratified follow-up for endometrial cancer (EC) is being introduced in many cancer centres; however, there appears to be diversity in the structure and availability of schemes across the UK. This study aimed to investigate clinicians’ and clinical specialist nurses’ (CNS) experiences of follow-up schemes for EC, including patient-initiated follow-up (PIFU), telephone follow-up (TFU) and clinician-led hospital follow-up (HFU). A mixed-methods study was conducted, consisting of an online questionnaire to CNSs, an audience survey of participants attending a national “Personalising Endometrial Cancer Follow-up” educational meeting, and qualitative semi-structured telephone interviews with clinicians involved in the follow-up of EC. Thematic analysis identified three main themes to describe clinicians’ views: appropriate patient selection; changing from HFU to PIFU schemes; and the future of EC follow-up schemes. Many participants reported that the COVID-19 pandemic impacted EC follow-up by accelerating the transition to PIFU/TFU. Overall, there was increasing support for non-HFU schemes for patients who have completed primary treatment of EC; however, barriers were identified for non-English-speaking patients and those who had communication challenges. Given the good long-term outcome associated with EC, greater focus is needed to develop resources to support patients post-treatment and individualise follow-up according to patients’ personal needs and preferences.

Systematic review of patients’ and healthcare professionals’ views on patient‐initiated follow‐up in treated cancer patients

“…HCPs note that barriers to PIFU include patients' communication or language difficulties as well as a lack of technological developments to aid patient-clinician communication. 51 Some studies have shown that patients may not request urgent appointments despite recognising symptoms 52,53 and that regular FU can facilitate access to specialists or tests in these cases. 54,55 The reassurance regular FU can provide needs to be weighed against increased anxiety, the inconvenience of potentially unnecessary hospital visits and the fact that reassurance is often only temporary.…”

“…Based on limited evidence, HCPs are generally supportive of PIFU, but have concerns about managing patient and HCP expectations, and about patients who have difficulties engaging with PIFU. HCPs note that barriers to PIFU include patients' communication or language difficulties as well as a lack of technological developments to aid patient–clinician communication 51 . Some studies have shown that patients may not request urgent appointments despite recognising symptoms 52,53 and that regular FU can facilitate access to specialists or tests in these cases 54,55 …”

“…While there is evidence that supported self‐management can improve clinical, psychosocial and economic outcomes, there is also a lack of evidence on what optimal self‐management strategies are, and to what extent support by health professionals is needed to make such approaches effective and sustainable 68,69 . There is health professional support for survivorship courses, but many clinicians report that these are not available for their patients 51 …”

“…68,69 There is health professional support for survivorship courses, but many clinicians report that these are not available for their patients. 51 Future research on the perception of PIFU should include studies in a wider range of cancers, including men, and patients with varying underlying risk of recurrence, and should consider PIFU in the context of scheduled imaging or other tests. Ideally, such research will be in the context of participants with first-hand experience of PIFU, as there is evidence to suggest that views differ depending on whether participants have experienced PIFU or are being asked to consider hypothetical scenarios.…”

“…HCPs note that barriers to PIFU include patients' communication or language difficulties as well as a lack of technological developments to aid patient–clinician communication. 51 Some studies have shown that patients may not request urgent appointments despite recognising symptoms 52 , 53 and that regular FU can facilitate access to specialists or tests in these cases. 54 , 55 …”