Avoiding and nonexpressing: coping styles of patients with paragangliomas

J Clin Endocrinol Metab. 2013 Sep;98(9):3608-14. doi: 10.1210/jc.2013-1340. Epub 2013 Aug 22.


Context: Paraganglioma (PGL) patients and succinate dehydrogenase (SDH) gene mutation carriers at risk for PGLs have a decreased quality of life (QoL). QoL may be affected by the strategy an individual uses when dealing with a stressful situation, ie, specific coping styles. Understanding the various approaches to coping may allow the development of targeted interventions to improve patient QoL.

Objective: The objective of the study was to assess coping styles in PGL patients and SDH mutation carriers.

Design: This was a cross-sectional study.

Setting: The study was conducted at a tertiary referral center.

Patients and methods: Coping styles were assessed using the Utrecht Coping List. The results from the study cohort were compared with a control group and data derived from the literature. Potential differences in coping styles between the various SDH mutation carriers and PGL patients without an SDH mutation were explored.

Results: Of the 174 patients who responded, 122 were SDHD, 25 SDHB, and 2 SDHC mutation carriers. An additional 25 patients lacked an SDH mutation. They recruited 100 peers as controls. Compared with the general population, the study cohort was more avoidant of problems (P < .001) and reported less expression of emotion (P < .01). Compared with patients with other conditions, they sought more social support (P < .001). There were no significant differences in coping styles between the various categories of mutation carriers or PGL patients lacking a mutation.

Conclusions: Coping styles of PGL patients and SDH mutation carriers differ from those of control and reference groups and include an avoidant coping style and a lack of emotional expression.

MeSH terms

  • Adaptation, Psychological*
  • Adult
  • Aged
  • Cross-Sectional Studies
  • Emotions
  • Female
  • Genetic Predisposition to Disease / psychology*
  • Humans
  • Male
  • Middle Aged
  • Mutation
  • Paraganglioma / genetics
  • Paraganglioma / psychology*
  • Quality of Life / psychology*
  • Social Support
  • Succinate Dehydrogenase / genetics*
  • Surveys and Questionnaires


  • Succinate Dehydrogenase