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In MEN1, fear of disease recurrence lowers quality of life
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Among adults with multiple endocrine neoplasia type 1, or MEN1, a high fear of disease occurrence is associated with a lower health-related quality of life, according to findings from a cross-sectional study.
“The high percentage of MEN1 patients with a high [fear of disease occurrence] stresses the need for more attention and support for aspects of fear and worry regarding the disease,” Rachel S. van Leeuwaarde, MD, with the department of endocrine oncology at University Medical Center Utrecht, the Netherlands, and colleagues wrote. “Up to now, this fundamental topic has been largely neglected, which is incomprehensible considering that the results regarding [fear of disease occurrence] and the impact on [quality of life] is significant.”
Van Leeuwaarde and colleagues analyzed data from 227 patients from the Dutch MEN1 cohort, a longitudinal database of Dutch patients with MEN1 aged at least 16 years in 2013 and treated between 1990 and 2013 (87% women; mean age, 47 years; all with a confirmed MEN1 mutation or one or more MEN1-related manifestations and a first-degree relative with MEN1). Participants completed the Cancer Worry Scale (with a score of at least 14 reflecting a high fear of disease occurrence) and the SF-36 Health Related Quality of Life questionnaire (with higher scores indicating better levels of functioning and well-being), along with questions regarding sociodemographic and medical history, between April 2015 and December 2016.
Within the cohort, mean fear of disease occurrence was 15.1, considered a high level of fear, according to researchers. After adjustment for age and sex, the fear of disease occurrence score was associated with all scales of the SF-36, with patients with a high fear of disease occurrence score showing lower quality-of-life scores on all SF-36 subscales, apart from the physical functioning subscale, when compared with patients with a low fear of disease occurrence score.
Among patients with a primitive neuroectodermal tumor, fear of disease occurrence scores were higher vs. those without such a tumor (mean, 15.6 vs. 14.4; P < .01). An increasing number of manifestations was also associated with a higher fear of disease occurrence score (P for trend = .02).
Researchers also noted that patients reported more fear for family members than for themselves on five items of the fear of disease occurrence scale; however, effect sizes ranged from 0.1 to 0.22.
“The [fear of disease occurrence] was high in comparison with other types of cancer,” the researchers wrote. “The outcome of 15.1 is comparable with patients with Von Hippel Lindau syndrome. Fear in patients with breast cancer, for example, was lower, with an average score of 13.4. This reflects the major impact of having MEN1 on patients, as fear in breast cancer patients is generally considered high.”
The researchers added that future studies should focus on interventions that improve the quality of life and care in patients with MEN1. – by Regina Schaffer
Disclosures: The authors report no relevant financial disclosures.
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