Smartphone‐based Ecological Momentary Assessment to study “scanxiety” among Adolescent and Young Adult survivors of childhood cancer: A feasibility study

Abstract

Objective Scan‐related anxiety (“scanxiety”) refers to the fear, stress, and anxiety in anticipation of tests and scans in follow‐up cancer care. This study assessed the feasibility of Ecological Momentary Assessment (EMA) for real‐world, real‐time capture of scanxiety using patients' personal smartphone. Methods Adolescent and Young Adult survivors of childhood cancer were prompted to complete EMA surveys on a smartphone app three times per day for 11 days (33 surveys total) around their routine surveillance scans. Participants provided structured feedback on the EMA protocol. Results Thirty out of 46 contacted survivors (65%) enrolled, exceeding the preregistered feasibility cutoff of 55%. The survey completion rate (83%) greatly exceeded the preregistered feasibility cutoff of 65%. Participants generally found the smartphone app easy and enjoyable to use and reported low levels of distress from answering surveys. Participants reported significantly more daily fear of cancer recurrence (FCR) and negative affect in the days before compared to the days after surveillance scans, aligning with the expected trajectory of scanxiety. Participants who reported greater FCR and scanxiety using comprehensive measures at baseline also reported significantly more daily FCR around their surveillance scans, indicating validity of EMA items. Bodily threat monitoring was prospectively and concurrently associated with daily FCR, thus warranting further investigation as a risk factor for scanxiety. Conclusions Findings indicate the feasibility, acceptability, and validity of EMA as a research tool to capture the dynamics and potential risk factors for scanxiety.

The SCAN-ME Study Protocol: The Value of Surveillance Imaging for Children and Young People with Medulloblastoma and Ependymoma

“…Families with experience of surveillance imaging who we have worked with when developing this project described a sawtooth of emotions during the period of surveillance imaging following treatment (described in the literature as 'Scanxiety' (39,40)) and talked about their dependence on surveillance imaging to reassure them that the tumour had not recurred. The PPI group considered it important to determine whether surveillance imaging at improving outcomes for CYP with medulloblastoma and ependymoma, but also to explore the experiences of those who have undergone surveillances as they considered that these may vary substantially.…”

“Scanxiety” and a sense of control: the perspective of lung cancer survivors and their caregivers on follow-up - a qualitative study

“…This neologism capturing the phenomenon of anxiety or stress related to cancer scans first occurred in print and social media [34][35][36]. Meanwhile, it has been acknowledged and discussed as a "common and important clinical problem" (35, p. 17) and has been increasingly explored in studies addressing different types of cancer and stages of cancer care [e.g., 34,35,[37][38][39][40][41]. While other studies tend to emphasize the stress and anxiety associated with follow-up care appointments [34,37,39], or indicate that "scanxiety" is a normal and inevitable experience for advanced cancer patients [38], the present results expand on previous findings.…”

Illness Perceptions, Fear of Cancer Recurrence, and Mental Health in Teenage and Young Adult Cancer Survivors

“…It is the primary psychological concern of young adult cancer survivors (Li & Cheng, 2021) and can negatively affect the transition from "patient" to "survivor" identity (Jones et al, 2011) or from pediatric to adult services (Granek et al, 2012). High FCR in AYAs is associated with previous illness recurrence and worse mental health (Fonseca et al, 2010;Lane et al, 2019;Sun et al, 2019), cancer type (e.g., higher in breast cancer and malignant melanoma survivors; Vandraas et al, 2020), lower health-related quality of life (Thewes et al, 2018), and increased surveillance scan anxiety (Heathcote et al, 2022). For some survivors, FCR can become chronic and disabling (Simard & Savard, 2015).…”