Seven in Ten Parents of Children With Cancer Carry Clinical-Level Fear of Disease Progression

When a child is diagnosed with a malignant solid tumor, the medical team fights the disease, but a quieter battle often unfolds in the mind of the parent holding the child’s hand. A new study from China has now quantified that hidden burden with unusual precision, showing that fear of disease progression, a psychological phenomenon clinicians call FoP, reaches clinically significant levels in the overwhelming majority of primary caregivers of children with solid tumors. The research, published in BMC Psychology, surveyed 303 primary caregivers at a tertiary hospital in Zhejiang Province and used a statistical technique known as latent profile analysis to sort them into distinct psychological risk groups, revealing a landscape of parental anxiety far more heterogeneous than a single average score could ever convey.

The numbers themselves are striking. Using the Fear of Progression Questionnaire for the parental perspective, abbreviated FoP-Q-SF/PR, the researchers calculated an overall mean score of 38.09 with a standard deviation of 8.29. More importantly, 213 of the 303 caregivers, or 70.3 percent, scored at or above the clinical critical value of 34 points, the threshold beyond which fear of progression is generally considered to require psychological attention. In other words, roughly seven in ten parents primarily responsible for caring for a child with cancer are living with a level of anticipatory dread that crosses into the clinical range. This is not ordinary parental worry; it is a persistent, measurable fear that the disease will advance, and it has been shown in prior literature to erode mental health, undermine children’s adherence to treatment, and strain the functioning of entire families.

Fear of disease progression is a well-established construct in psycho-oncology, originally studied in adult patients and later extended to parents of chronically and seriously ill children. It is defined as excessive anxiety in response to the possibility that the illness may worsen, that treatment may fail, or that relapse may occur. Unlike acute fear, which resolves when a threat passes, FoP tends to be chronic and self-sustaining, flaring at every scan, every fever, every unexplained bruise. For parents of children with malignant solid tumors, a category that includes tumors of the nervous system, kidneys, liver, bones, and soft tissues, the uncertainty of prognosis and the intensity of multimodal treatment regimens create fertile ground for this fear to take root and grow.

To move beyond averages, the research team turned to latent profile analysis, a person-centered statistical method that identifies unobserved subgroups within a population based on patterns of responses across questionnaire items. Rather than asking how much fear exists on average, LPA asks whether there are distinct types of fear profiles hiding inside the data. The researchers fit successive models and evaluated them using standard fit indices, including the Akaike Information Criterion, the Bayesian Information Criterion and its adjusted variant, the Lo-Mendell-Rubin likelihood ratio test, and the bootstrapped likelihood ratio test, to determine how many latent classes best described their sample. This approach has become increasingly popular in nursing and psychology research because it allows interventions to be tailored to identifiable groups rather than to a statistical abstraction.

The analysis converged on three distinct profiles. A low progression fear group comprised 83 caregivers, or 27.4 percent of the sample. A moderate fear group contained 110 caregivers, 36.3 percent, and a high fear group contained another 110 caregivers, also 36.3 percent. The near-equal split between the moderate and high categories is perhaps the most sobering finding: nearly three quarters of all caregivers fell into the two elevated classes, and the high-fear group alone accounted for more than a third of the sample. The three-class structure confirms that FoP in this population is not a smooth continuum but a stratified phenomenon, with a substantial minority of parents carrying a burden severe enough to warrant targeted clinical intervention.

Who ends up in which class? The researchers first conducted univariate analyses and then applied multinomial logistic regression to identify factors independently associated with class membership, and the results map a clear risk architecture. Female caregivers faced significantly elevated odds of belonging to higher-fear groups, with odds ratios ranging from 2.177 to 2.233, meaning women in this sample were roughly twice as likely as men to occupy the more fearful profiles. Low household income was another potent risk factor, carrying an odds ratio of 2.597. Negative coping strategies, such as avoidance and self-blame, increased the odds of high fear with odds ratios between 1.093 and 1.151. All of these associations reached statistical significance at the conventional threshold of P less than 0.05.

On the protective side of the ledger, the study identified three modifiable psychological resources that buffer against fear of progression. Positive coping strategies reduced the odds of belonging to higher-fear classes, with odds ratios of 0.927 to 0.935. General self-efficacy, measured with the General Self-Efficacy Scale, showed a protective odds ratio of 0.921, and social support, assessed with the Social Support Rating Scale, showed an odds ratio of 0.919. Although these odds ratios may appear modest per unit, they represent continuous variables, so even incremental gains in coping skills, confidence, and perceived support translate into meaningfully reduced risk across a caregiver population. The pattern is coherent with decades of stress-and-coping theory: parents who confront the crisis with active problem-solving, who believe in their own capacity to manage, and who are embedded in supportive networks are demonstrably more resilient to anticipatory fear.

The methodological apparatus of the study deserves attention because it strengthens the credibility of these conclusions. Data were collected between July 2025 and February 2026 using convenience sampling, and caregivers completed a general information questionnaire alongside four validated instruments: the FoP-Q-SF/PR, the Simplified Coping Style Questionnaire, the General Self-Efficacy Scale, and the Social Support Rating Scale. The research was ethically reviewed by the Ethics Committee of the Children’s Hospital affiliated with Zhejiang University School of Medicine, conducted in accordance with the Declaration of Helsinki, and all participants provided informed consent with the explicit right to withdraw at any time without affecting their child’s care. The authors, affiliated with the Children’s Hospital of Zhejiang University School of Medicine and Zhejiang Chinese Medical University, declare no competing interests, and the work received funding from a Science and Technology Joint Construction Project of the National Demonstration Zone for Comprehensive Reform of Traditional Chinese Medicine.

Why does this matter beyond the statistics? Fear of progression in a primary caregiver is not a private suffering confined to one adult. Parents in the high-fear group may struggle to sleep, to make sound treatment decisions, to communicate hope without dishonesty, or to maintain the routines that children with cancer desperately need. Prior research has linked elevated parental FoP to poorer treatment adherence in children, distorted family communication, and even secondary traumatization of siblings. Because the study identifies female sex and low income as non-modifiable or hard-to-modify risk factors, and negative coping, low self-efficacy, and insufficient social support as modifiable ones, it hands clinicians a practical screening blueprint: a brief questionnaire administered at diagnosis could flag the mothers, the financially strained families, and the avoidant copers who most need early psychological support.

The authors conclude that targeted preventive measures and psychological intervention programs should be developed around these modifiable factors to reduce FoP levels and improve caregiver mental health. In practice, that could mean cognitive-behavioral therapy adapted for oncology caregivers, peer-support groups that build social networks, financial counseling integrated into pediatric oncology care, and resilience training that shifts parents from avoidance toward active coping. As pediatric cancer survival rates continue to climb worldwide, the field’s attention is rightly shifting from cure alone to the psychological ecosystem surrounding the child. This study makes a compelling, data-driven case that the fear carried by parents is not background noise but a clinical variable in its own right, one that can be measured, classified, and, with the right interventions, treated.

Subject of Research: Fear of disease progression and its latent profiles among primary caregivers of children with malignant solid tumors

Article Title: Fear of disease progression in primary caregivers of children with malignant solid tumors: a latent profile analysis

Article References: Fear of disease progression in primary caregivers of children with malignant solid tumors: a latent profile analysis. (n.d.). https://doi.org/10.1186/s40359-026-05771-0

Image Credits: AI Generated

DOI: 10.1186/s40359-026-05771-0

Keywords: fear of disease progression, primary caregivers, pediatric oncology, solid tumors, latent profile analysis, mental health, coping strategies, self-efficacy, social support, BMC Psychology, psychological intervention, risk factors