Worry about somatic symptoms as a sign of cancer recurrence: prevalence and associations with fear of recurrence and quality of life in survivors of childhood cancer

Abstract

Objective Somatic symptoms (e.g., pain, fatigue) are common after childhood cancer and are associated with greater fear of cancer recurrence and poorer health‐related quality of life (HRQoL). Qualitative studies indicate that survivors of childhood cancer (SCCs) worry about somatic symptoms as indicating cancer recurrence, which could in part explain associations between symptoms and poorer psychosocial outcomes. However, the prevalence, characteristics, and impact of symptom worry has not been quantitatively studied. Methods SCCs (N = 111; 52% female; Mage at study = 17.67 years, range = 8–25 years; Mage at diagnosis = 6.70 years) across a variety of diagnoses were recruited from a pediatric cancer center in Canada and completed self‐report measures of symptom worry, symptom frequency, general anxiety, fear of cancer recurrence, and HRQoL. Results A majority (62%) of SCCs worried about at least one symptom as a sign of recurrence. Pain was the most worrisome symptom, but SCCs also reported worrying about symptoms that are rarely associated with cancer recurrence such as hunger, dizziness, and feeling cold. Symptom worry was more strongly associated with fear of cancer recurrence than the mere frequency of those symptoms, and this relationship held while controlling for treatment factors and general anxiety. Symptom worry and frequency each explained unique variance in HRQoL. Conclusions Worry about somatic symptoms as a sign of cancer recurrence is common and may be impactful after childhood cancer. Excessive worry about somatic symptoms could be an important target to reduce fear of recurrence and increase HRQoL in SCCs.

Unique associations of pain frequency and pain-related worry with health-related quality of life in survivors of childhood cancer

“… 3 , 13 In a previous report, bodily symptoms triggered fears of recurrence in 62% of young survivors, sometimes many years after finishing cancer treatment. 1 Because pain is emerging as an especially worrisome symptom, and given growing evidence that a sizable number of childhood cancer survivors report persistent and frequent pain, 9 , 11 it may be particularly important to address pain-related worries within childhood cancer survivorship care.…”

“…Exclusion criteria were as follows: (1) developmental disabilities, (2) major injuries, surgeries, or illnesses within the previous year, and (3) a history of psychosis. Data from this sample have been reported elsewhere 1 ; this brief report is the first to focus on pain outcomes.…”

“…The Intensity of Treatment scale 5 was used to categorize treatment intensity based on the previous diagnosis, stage of disease, and treatment information. 1 Caregivers reported their child's age, race, age at diagnosis, and time off treatment.…”

“…The Symptom Worry scale 1 comprises 2 subscales assessing the extent to which respondents worry about 10 different somatic sensations as a sign of cancer recurrence (worry subscale) and how frequently they experienced those sensations over the previous month (frequency subscale). Both subscales are answered on a 5-point Likert scale from not at all to a whole lot (worry subscale) or never to almost always (frequency subscale).…”

Psychosocial Risk, Symptom Burden, and Concerns in Families Affected by Childhood Cancer

“…While our results re ect some of these symptoms (e.g., fatigue, pain, and anxiety) as the most intensely experienced, it is unclear which symptoms patients nd most distressing, which may differ. Certainly, there is evidence for the association between the symptom frequency and worry among survivors of childhood cancer, but this does not always align [37]. Bottom-up research is also needed to identify which symptoms are most relevant for children and teens, as these symptoms may differ from the most frequently reported adult symptoms captured by the ESAS-r.…”