welcome to oneFAPvoice
- a positively charged Familial Adenomatous Polyposis community.- join today!
- login
Psychological Distress and Use of Psychosocial Support in Familial Adenomatous Polyposis
source: Psycho-oncology
year: 2010
authors: Douma KF, Aaronson NK, Vasen HF, Gerritsma MA, Gundy CM, Janssen EP, Vriends AH, Cats A, Verhoef S, Bleiker EM
summary/abstract:OBJECTIVE: Familial adenomatous polyposis (FAP) is characterized by multiple adenomas in the colorectum with a high risk to develop colorectal cancer. It is unclear whether individuals at risk of FAP experience distress due to this potentially life-threatening disease. This nationwide study assessed: (1) the prevalence of psychological distress; and (2) the need for and use of specialized professional psychosocial support.
METHODS: In this cross-sectional study, all individuals from families at high risk for FAP registered at the Netherlands Foundation for the Detection of Hereditary Tumours were invited to complete a questionnaire assessing, among other issues, generalized, cancer-specific and FAP-specific distress.
RESULTS: In total, 525 individuals completed the questionnaire. Approximately 20% of the respondents had moderate to severe levels of FAP-specific distress. Levels of generalized distress were comparable to the general Dutch population. Significantly more individuals with a FAP diagnosis had frequent cancer worries than those at risk of FAP or non-carriers (p=0.02). Distress levels were more strongly associated with psychosocial variables (e.g. perceived cancer risk), than with sociodemographic or clinical variables. Up to 43% of the variance in distress could be explained by all variables combined. Of those moderately to severely distressed, 26% had received specialized professional psychosocial support, while 30% of those did not receive the support they wanted.
CONCLUSIONS: A substantial minority of individuals reported moderate to severe distress levels associated with FAP. However, only one-third of those received specialized professional psychosocial support. We recommend the use of a screening questionnaire to identify individuals in need of such support.
organization: Netherlands Cancer Institute-Antoni van Leeuwenhoek HospitalDOI: 10.1002/pon.1570.
read more
expertly curated content related to this topic
- Ronald Bachman, MDDr. Ronald Bachman is a medical genetics...
- Rectal and Pouch Recurrences After Surgical Treatment for Familial Adenomatous PolyposisBACKGROUND : Familial adenomatous polypo...
- David Maron, MDEducation: Georgetown University School ...
- Gabriel CapelláGabriel Capellá has worked at the Catal...
- Zsofia K. Stadler, MDZsofia K. Stadler is a board-certified m...
- A Case of FAP Who Underwent Mucosectomy for Intramucosal Cancer that Repeatedly Developed in the Residual Rectal Muc...When we perform stapled ileal pouch anal...
- Karen A. Brooks, MS, CGCGenetic CounselorSpecializations: Fa...