Division of Psychosocial Research and Epidemiology, The Netherlands Cancer Institute - Antoni van Leeuwenhoek Hospital, Amsterdam, The Netherlands.
Psychooncology. 2011 Feb;20(2):146-54. doi: 10.1002/pon.1716.
Familial adenomatous polyposis (FAP) is a genetic condition characterized by the development of multiple adenomas in the colorectum that could lead to colorectal cancer. Our aim was to assess levels and predictors of psychological distress and quality of life (QOL) among partners of FAP-patients.
A nationwide, cross-sectional survey using validated self-report questionnaires assessing psychological distress and QOL.
One hundred and twenty-nine partners completed the questionnaire (84% response rate), 30% of whom reported moderate-to-severe levels of distress. The partners' distress was associated significantly with the patients' distress, having children, and feelings of guilt. Fifty-seven percent of the partners with moderate-to-severe distress levels had received professional psychosocial support. Partners did not differ significantly from the general population in QOL. However, 9-21% reported that FAP had affected their work, leisure time activities, and relationships.
Clinicians should be particularly alert for heightened distress levels in partners of patients who are themselves distressed, and among those with children.
家族性腺瘤性息肉病（FAP）是一种遗传疾病，其特征是大肠中出现多个腺瘤，可能导致结直肠癌。我们的目的是评估 FAP 患者伴侣的心理困扰和生活质量（QOL）水平及其预测因素。
采用全国性、横断面调查，使用经过验证的自我报告问卷评估心理困扰和 QOL。
129 名伴侣完成了问卷（84%的应答率），其中 30%报告存在中重度困扰。伴侣的困扰与患者的困扰、有子女以及内疚感显著相关。57%的中重度困扰伴侣接受了专业的心理社会支持。与一般人群相比，伴侣在 QOL 方面没有显著差异。然而，9-21%的伴侣报告称，FAP 影响了他们的工作、休闲活动和人际关系。
临床医生应特别注意那些自身感到困扰的患者的伴侣，以及有子女的伴侣中，心理困扰水平升高的情况。
