Illness perceptions, fear of progression and health-related quality of life during acute treatment and follow-up care in paediatric cancer patients and their parents: a cross-sectional study

Abstract

Background This study examines the role of illness perceptions and fear of progression (FoP) in paediatric cancer patients and their parents for patient’s health-related quality of life (HRQoL), controlling for sociodemographic and medical variables. 4–18-year-old patients in acute treatment or follow-up care and one parent were examined. Methods N = 46 patient-parent dyads in acute treatment and n = 84 dyads in follow-up care completed measures on illness perceptions (Illness-Perceptions-Questionnaire for 12–18-year-old patients and parents or as age-adapted puppet interview for 4–11-year-old patients) and FoP (Fear-of-Progression-Questionnaire for 7–18-year-old patients and parents). Patients also completed the KINDL-R to measure HRQoL. Hierarchical multiple regression analyses were calculated. Results In acute treatment, patient’s perceptions of symptoms and cyclicity of their illness explained variation in their HRQoL in addition to sociodemographic and medical variables. In follow-up care, patient’s FoP and parent’s perception of consequences explained additional variation in patient’s HRQoL. Overall, sociodemographic and medical variables explained less variation in HRQoL in follow-up care than in acute treatment. Conclusions Our results stress the importance of psychological factors for the well-being of paediatric cancer patients, particularly in follow-up care, where sociodemographic and medical variables play a lesser role. We recommend screening for illness perceptions and FoP during and after acute treatment to support patients and parents. Furthermore, standardized interventions focussed on changing maladaptive illness perceptions should be developed and evaluated. As parents’ perceptions, thoughts, and feelings may also play an important role for the well-being of the patients, interventions should be family-focussed and include parents. Trial registration The study has been pre-registered at the German Clinical Trials Register (registered 30/06/2020; DRKS00022034) and at the Open Science Framework (https://osf.io/3uwrx).

Trajectories of illness perceptions in paediatric cancer patients and their parents and associations with health‐related quality of life: Results of a prospective‐longitudinal study

“…found that several illness perceptions are significant predictors of HRQoL in 8‐12‐year‐old cancer patients, with the perception of negative consequences being the strongest predictor 29 . Also, our work group has recently contributed research on 4‐18‐year‐old cancer patients in acute treatment and in follow‐up care: Similar to results in adult cancer patients and survivors, and similar to Fonseca's results, we found that several illness perceptions contribute to the child's HRQoL, 30 namely the perception of symptoms and cyclicity of their illness. However, the aforementioned studies used cross‐sectional data, which limits the causal interpretation of results.…”

“…Six‐month‐test‐retest‐reliability of the English original was good, with >0.5 for all scales (except timeline‐cyclical) in a sample of n = 76 adult patients with rheumatoid arthritis 46 . The puppet interview has been validated with n = 41 children in acute treatment and n = 34 children in follow‐up care and shows acceptable internal consistency for the dimensions timeline‐acute/chronic and personal control 44 . As the puppet interview is closely based on the IPQ‐R questionnaire, scores and items are comparable to each other.…”

“…As the puppet interview is closely based on the IPQ‐R questionnaire, scores and items are comparable to each other. For more information concerning the adaptation and validation of the puppet interview, see the publication by Herzog et al 44 …”

“…[37][38][39][40] As the cancer illness affects the whole family system, the assessment of parent's own illness perceptions is useful as well to investigate (dis-) similarities between child's and parent's illness perceptions 16 and reciprocal influences on each other's healthrelated well-being. 30,41 As longitudinal research on illness perceptions in paediatric oncology is still limited, we will endeavour to answer the following research questions: (1) How do child's and parents' illness perceptions, and child's HRQoL change over the course of 1 year? As previous studies have shown that trajectories of illness perceptions may vary by patient characteristics, analyses will be performed in the full sample and in age-, gender-, and diagnosisspecific subsamples.…”

“…The self‐report is preferable to the parent's proxy‐report, because studies have found that parents may not always report accurately on their child's cognitive or emotional state, which includes illness perceptions 37–40 . As the cancer illness affects the whole family system, the assessment of parent's own illness perceptions is useful as well to investigate (dis‐) similarities between child's and parent's illness perceptions 16 and reciprocal influences on each other's health‐related well‐being 30,41 . As longitudinal research on illness perceptions in paediatric oncology is still limited, we will endeavour to answer the following research questions: (1) How do child's and parents' illness perceptions, and child's HRQoL change over the course of 1 year?…”