Persistently low peace of mind in parents of cancer patients: A five‐year follow‐up study

Abstract

Background Pediatric cancer affects the well‐being of the entire family. Previously, our group found that 76% of parents experience low peace of mind after diagnosis. Herein, we present a five‐year follow‐up study of these same parents, aiming to determine whether low peace of mind persisted, and what baseline variables associate with persistently low peace of mind. Procedure Cross‐sectional survey of parents of children with cancer between April 2004 and September 2005 within one year of diagnosis, and a follow‐up questionnaire administered at least five years later. Results Sixty‐six percent of parents whose children were living and who were able to be contacted completed follow‐up questionnaires (91/138). Of these parents, 77% (70/91) were parents of disease‐free survivors and 23% (21/91) had recurrent disease. The majority of parents (66%, 53/88) had low peace of mind five years after diagnosis, regardless of relapse status or prognosis. Additionally, 28% of parents of disease‐free survivors reported being very/extremely worried about relapse (18/66), late toxicities (19/66), and late effects (19/66). Each worry was associated with low peace of mind (OR between 9.66 and 20.09 for each worry). In bivariable logistic regression, low peace of mind at five years was negatively associated with trusting the physician completely at baseline, with and without adjustment for relapse status (OR, 0.32; 95% CI, 0.12 to 0.87, P = 0.032, adjusted for relapse). Conclusion Most long‐term studies and interventions have focused on parental bereavement. Our findings show that most parents are changed by pediatric cancer, even when children survive and the future is bright.

Thinking ahead: Parents’ worries about late effects of childhood cancer treatment

“…Information alone is insufficient; attending to parental worry is equally important. Ongoing parental worry about late effects is associated with decreased peace of mind in parents of survivors of childhood cancer, 9 suggesting that it may interfere with coping and well‐being. Further, parental stress and distress may contribute to increased child distress and anxiety in pediatric oncology 37 .…”

“…29 The primary outcome for this analysis was parental worry about late effects, which was assessed by asking how worried parents were that their child "could experience health problems after treatment is finished." 9,26 The secondary outcome was parental perception of their child's risk of experiencing late effects, which was evaluated by asking how likely it is that their child would "develop health problems after treatment is finished." 16 Both items had response categories of extremely, very, somewhat, a little, and not at all.…”

“…5,6 Many parents have lingering concerns about their child's health and potential late effects of therapy in survivorship. [7][8][9] These uncertainties are not unfounded. Although pediatric cancer mortality has continued to improve, with relative survival rates of 85% in the most recent treatment era, 10 many childhood cancer survivors have substantial morbidity from treatment.…”

“…Perhaps as a result, parents often have persistent information needs about these topics, 4 may have ongoing worries about their child's health and quality of life (QOL) throughout treatment, and some may suffer from persistent stress and anxiety 5,6 . Many parents have lingering concerns about their child's health and potential late effects of therapy in survivorship 7–9 …”

Multilevel barriers and facilitators of communication in pediatric oncology: A systematic review

“…We previously identified eight core functions of communication, including buiding relationships, exchanging information, managing uncertainty, enabling family self‐management, making decisions, responding to emotions, providing validation, and supporting hope 3 . Fulfillment of these functions supports parental hopefulness, 4 peace of mind, 5,6 trust, 7 and feeling acknowledged 8 and comforted 9 . When communication fails, families can experience inaccurate prognostic understanding, 10–12 emotional distress, 13 decisional regret, 14 loss of trust, 15 decreased hope, 13 and even medical harm 13…”