Measuring fear of cancer recurrence in survivors of childhood cancer: Development and preliminary validation of the Fear of Cancer Recurrence Inventory (FCRI)‐Child and Parent versions

Tutelman, Perri R.; Chambers, Christine T.; Heathcote, Lauren C.; Fernandez, Conrad V.; Flanders, Annette; Patton, Michaela; Schulte, Fiona; Guilcher, Gregory M.T.; Simard, Sébastien; MacLeod, Julia; Stern, Maya

doi:10.1002/pon.5879

Cited by 9 publications

(16 citation statements)

References 37 publications

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“…This paper examines relationships between anxiety symptoms, pain intensity, pain catastrophizing, and FCR in survivors of childhood cancer and their parents. A second paper from this program examined the patterns of sensory processing in survivors of childhood cancer,41 and another examined the psychometric properties of the Fear of Cancer Recurrence Inventory—Parent (FCRI-P) and Child (FCRI-C) versions 14…”

Section: Methodsmentioning

confidence: 99%

“…Parents and children reported on their FCR using the FCRI-P and FCRI-C versions. 14 The FCRI-P and FCRI-C are valid and reliable measures that evaluate the presence, frequency, intensity, and duration of thoughts about FCR. The FCRI-P measures parents' fears about their child's recurrence and the FCRI-C measures children's fears about their own recurrence.The FCRI-Chas been validated inchildrenaged 8 to 17 years.…”

Section: Fcri-p and Fcri-c Versionsmentioning

confidence: 99%

“…13 The number of studies examining FCR in survivors of childhood cancer and their parents is small; however, recent research has yielded findings generally congruent with the adult literature. While child survivors seem to experience FCR at a lower level as compared with adult survivors, 14 a significant minority of survivors of childhood cancer report high levels of FCR, 14 which has been linked with greater posttraumatic stress, 15 more anxiety 16 and depression 17 symptoms, catastrophizing about physical symptoms, 14,16 and worse quality of life. 16 Parent FCR is associated with their own intolerance of uncertainty, 14 anxiety 18 and depression 18,19 symptoms, lower quality of life, 18,20 catastrophizing about their children's physical symptoms, 14 and increased use of health care services for their children.…”

mentioning

confidence: 99%

“…While child survivors seem to experience FCR at a lower level as compared with adult survivors, 14 a significant minority of survivors of childhood cancer report high levels of FCR, 14 which has been linked with greater posttraumatic stress, 15 more anxiety 16 and depression 17 symptoms, catastrophizing about physical symptoms, 14,16 and worse quality of life. 16 Parent FCR is associated with their own intolerance of uncertainty, 14 anxiety 18 and depression 18,19 symptoms, lower quality of life, 18,20 catastrophizing about their children's physical symptoms, 14 and increased use of health care services for their children. 14 The burden of FCR in survivors of childhood cancer and their families underscores the importance of identifying predictors of FCR in this population to inform effective intervention strategies.…”

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confidence: 99%

“…16 Parent FCR is associated with their own intolerance of uncertainty, 14 anxiety 18 and depression 18,19 symptoms, lower quality of life, 18,20 catastrophizing about their children's physical symptoms, 14 and increased use of health care services for their children. 14 The burden of FCR in survivors of childhood cancer and their families underscores the importance of identifying predictors of FCR in this population to inform effective intervention strategies.…”

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confidence: 99%

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Pain and Fear of Cancer Recurrence in Survivors of Childhood Cancer

Tutelman¹,

Chambers

Noel

et al. 2022

The Clinical Journal of Pain

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Objectives: Theoretical models suggest that anxiety, pain intensity, and pain catastrophizing are implicated in a cycle that leads to heightened fear of cancer recurrence (FCR). However, these relationships have not been empirically examined. The objective of this study was to examine the relationships between anxiety symptoms, pain intensity, pain catastrophizing, and FCR in childhood cancer survivors and their parents and to examine whether pain catastrophizing predicts increased FCR beyond anxiety symptoms and pain intensity. Methods:The participants were 54 survivors of various childhood cancers (M age = 13.1 y, range = 8.4 to 17.9 y, 50% female) and their parents (94% mothers). Children reported on their pain intensity in the past 7 days. Children and parents separately completed measures of anxiety symptoms, pain catastrophizing, and FCR.Results: Higher anxiety symptoms were associated with increased pain intensity, pain catastrophizing, and FCR in childhood cancer survivors. Higher anxiety symptoms and pain catastrophizing, but not child pain intensity, were associated with FCR in parents.Hierarchical linear regression models revealed that pain catastrophizing explained unique variance in both parent (ΔR 2 = 0.11, P < 0.01) and child (ΔR 2 = 0.07, P < 0.05) FCR over and above the effects of their own anxiety symptoms and child pain.Discussion: The results of this study provides novel data on the association between pain and FCR and suggests that a catastrophic style of thinking about pain is more closely related to heightened FCR than one's anxiety symptoms or the sensory pain experience in both childhood cancer survivors and their parents. Pain catastrophizing may be a novel intervention target for survivors and parents struggling with fears of recurrence.

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Section: Methodsmentioning

confidence: 99%

Section: Fcri-p and Fcri-c Versionsmentioning

confidence: 99%

mentioning

confidence: 99%

mentioning

confidence: 99%

mentioning

confidence: 99%

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Pain and Fear of Cancer Recurrence in Survivors of Childhood Cancer

Tutelman¹,

Chambers

Noel

et al. 2022

The Clinical Journal of Pain

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Pain science education for children living with and beyond cancer: Challenges and research agenda

Rheel

Heathcote

Bosch³

et al. 2022

Pediatric Blood & Cancer

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Pain in children living with and beyond cancer is understudied and undertreated. Pain science education (PSE) is a conceptual change strategy facilitating patients’ understanding of the biopsychosocial aspects of pain. Preliminary studies on the adaptation of PSE interventions to adults with and beyond cancer provide a foundation for pediatric research. PSE could help childhood cancer survivors experiencing persistent pain and pain‐related worry after active treatment. PSE may also help children receiving cancer treatment, providing them with a foundation of adaptive pain beliefs and cognitions, and preparing them for procedural and treatment‐related pain. We direct this paper toward pediatric oncology clinicians, policy makers, and researchers working with children living with and beyond cancer. We aim to (a) identify challenges in adapting PSE for children living with and beyond cancer, (b) offer possible solutions, and (c) propose research questions to guide the implementation of PSE for children living with and beyond cancer.

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

et al. 2022

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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.

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Measuring fear of cancer recurrence in survivors of childhood cancer: Development and preliminary validation of the Fear of Cancer Recurrence Inventory (FCRI)‐Child and Parent versions

Cited by 9 publications

References 37 publications

Pain and Fear of Cancer Recurrence in Survivors of Childhood Cancer

Pain and Fear of Cancer Recurrence in Survivors of Childhood Cancer

Pain science education for children living with and beyond cancer: Challenges and research agenda

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

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