Delphi survey to inform patient-reported symptom monitoring after ovarian cancer treatment

Abstract

Background: Increasing numbers of ovarian cancer patients are living longer and requiring regular follow-up to detect disease recurrence. New models of follow-up care are needed to meet the growing number and needs of this patient group. The potential for patient-reported outcome measures (PROMs) to capture key symptoms and online technology to facilitate long-term follow-up has been suggested. Objectives: Prior to a pilot study exploring the potential for electronic patient-reported symptom monitoring, the content of an online intervention was developed via Delphi methodology. Design and setting: A Delphi process was conducted aiming to obtain consensus amongst the clinicians and patients from 4 hospitals on the key aspects to monitor during follow-up after ovarian cancer treatment, and how to monitor them in an online intervention. A two round Delphi was conducted. Consensus was defined as at least 70% agreement. Results: Out of 43 participants, 30 (18 patients, 12 healthcare professionals) completed round 1 and 19 (11 patients, 8 healthcare professionals) completed round 2. Consensus was reached on the key symptoms to monitor, and the importance of monitoring both duration and frequency of symptoms. Opportunity for review of psychological wellbeing and holistic needs were considered important by both groups. The frequency of online questionnaire completion, timeframe for patients to reflect on (e.g. during the past X weeks), and the choice of PROMs items to monitor symptoms did not reach the consensus threshold. Conclusion: It is crucial that any intervention and the selection of PROMs is fully described to ensure transparency about the development and decisions taken. In this work, a set of key symptoms and areas to monitor were agreed, which has informed the design of an online intervention and a subsequent pilot study is now underway. The proposed model of remote follow-up using electronic PROMs could be adapted and explored in other cancer sites.

Electronic patient-reported monitoring of symptoms during follow-up of ovarian cancer patients: a feasibility study

“…A major limitation to this study is the lack of a comparable control group. We originally opted for a before-after design to accommodate the time required to develop the intervention [ 35 , 29 ] within the time-limited funding, aiming to allow us to collect usual care data alongside the development work. However, this meant we faced a historic effect [ 46 ], with the difficulties of changing maintenance treatment policy over time, resulting in the need to change eligibility criteria and incomparable groups.…”

“…Participants were then reminded (by email/text) to complete the ePRO questionnaire every 3 months, which was anticipated to take 15-20 minutes. As there is no ovarian cancer specific PRO for detecting relapse, the selection of eleven core symptom questions included in the ePRO was determined through a Delphi involving both clinicians and patients (see Shearsmith et al 2020) [ 35 ]. The symptom items used were Patient Reported Adverse Event items (PRAE; 35) and examples of the items are presented in Additional file 1 .…”

Defining a Standard Set of Patient-Reported Outcomes for Patients With Advanced Ovarian Cancer

“…Despite these limitations, this work highlights the value of taking into account both clinicians’ and patients’ perspectives when developing interventions to improve the quality of care ( 29 , 30 ). This wider perspective could reduce the observed discrepancies between clinicians and patients on disease assessment, treatment preferences, or factors to be considered in decision-making ( 23 ).…”

‘We do need to keep some human touch’ — Patient and clinician experiences of ovarian cancer follow‐up and the potential for an electronic patient‐reported outcome pathway: A qualitative interview study

“…Importantly, the views on the potential acceptability of ePRO follow‐up may transfer to individuals receiving follow‐up after treatment for other cancer diagnoses, as they mirror some of the findings in the literature where services have implemented remote methods (Qaderi et al, 2021 ). Alongside other development work (including patient involvement to guide the intervention design, as recommended by Cox et al, 2017 ) to develop the selection of symptom items (Shearsmith et al, 2020 ), these findings have informed an ePRO system and a pilot study is underway (patient‐reporting symptoms/blood test 3‐monthly, algorithm‐based clinician alerts, CNS phonecall).…”