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Genetics of Colorectal Cancer (PDQ®): Genetics - Health Professional Information [NCI] - Psychosocial Issues in Hereditary Colon Cancer Syndromes

Table 18. Uptake of Gynecologic Screening Among Women Who Have Undergone Lynch Syndrome (LS) Genetic Testing continued...

Risk-reducing surgery for FAP

When persons at risk of FAP develop multiple polyps, risk-reducing surgery in the form of subtotal colectomy or proctocolectomy is the only effective way to reduce the risk of CRC. Most persons with FAP can avoid a permanent ostomy and preserve the anus and/or rectum, allowing some degree of bowel continence. (Refer to the Interventions for FAP section of this summary for more information about surgical management procedures in FAP.) Evidence on the quality-of-life outcomes from these interventions continues to accumulate and is summarized in Table 19.

Table 19. Studies Measuring Quality-of-Life Variables in Familial Adenomatous Polyposis (FAP)

PopulationLength of Follow-upType of ProcedureStool FrequencyStool ContinencyBody ImageSexual FunctioningComments
EORTC QLQ = European Organization for Research and Treatment of Cancer Colorectal Quality of Life Questionnaire; IPAA = ileal pouch-anal anastomosis; IRA = ileorectal anastomosis; SD = standard deviation; SF-36 = Short Form (36) Health Survey.
a EORTC QLQ-C38scores range from 0–100. Functional scales: 0 = lowest level of function and 100 = highest/healthy level of function. Symptom scales: 0 = lowest level of symptomatology and 100 = highest level of symptomatology.
b SF-36scores range from 0–100, with 0 = lowest possible health status and 100 = best possible health status.
c Within normal ranges for same age group.
279 FAP-affected individuals (135 females and 144 males) after colectomy; controls included 1,771 individuals from the general Dutch population[59]IRA mean: 12 y (SD, 7.5 y)IRA: n = 161Not assessedNot assessedEORTC QLQ-CR38aEORTC QLQ-CR38aSF-36b scores (Dutch version) on all subscales were significantly lower than the scores in the general population (IRA:P< .001; IPAA:P< .001).
IRA: 87.5 (SD, 21.9)IRA: 38.9 (SD, 26.6)
IPAA mean: 6.8 y (SD, 4.9 y)IPAA: n = 118IPAA: 84.4 (SD, 22.7)IPAA: 42.2 (SD, 26.3)
88 Australian individuals (63 females and 25 males) aged 18–35 y, including 57 after colectomy and 14 with FAP but no surgery[60]Not reportedIRA: n = 33Not assessedNot assessedSF-36bSF-36b 
IPAA: n = 21IRA: 89.9 (SD, 16.1)IRA: 86.2 (SD, 21.6)
Ileostomy: n = 1IPAA: 72.1 (SD, 23)IPAA: 77.5 (SD, 26.2)
Unknown surgery type: n = 2No surgery: 94.1 (SD, 9.4)No surgery: 91 (SD, 19)
525 individuals (283 females and 242 males) including 296 after colectomy, 45 with FAP but no surgery, 50 at risk for FAP and no surgery, and 134 noncarriers[61]Range: 0–1 y to >10 yIRA: n = 136Not assessedNot assessedEORTC QLQ-CR38aEORTC QLQ-CR38a41% of FAP patients reported employment disruptions:
After colectomy: 85.4 (SD, 20.5)After colectomy: 42.2 (SD, 23.2)Part or complete disability: n = 73 (59%)
IPAA: n = 112FAP no surgery: 91.9 (SD, 16.1)After colectomy: 42.2 (SD, 23.2)Worked less: n = 30 (24%)
Ileostomy: n = 42At risk: 94.0 (SD, 13.1)At risk: 47.6 (SD, 23.7)Worked more n = 5 (4%)
Other: n = 6Noncarrier: 92.3 (SD, 13.1)Noncarrier: 45.7 (SD, 21.2)Worked more or less at different periods: n = 16 (13%)
209 Swedish FAP-affected individuals (116 females and 93 males) after colectomy aged 18–75 y[62]Mean time since last surgery: 14 y (SD, 10; range, 1–50 y)IRA: n = 71Not assessedDay: 71% (n = 149)Not assessedNot assessedThe mean number of 21 abdominal symptoms assessed was 7 (SD, 4.61; range, 1–18). Women reported more symptoms than men, but there were no differences between genders regarding the degree the symptoms were troublesome. Higher symptom number was an independent predictor of poorer physical and mental health.
IPAA: n = 82
Ileostomy: n = 39Night: 61% (n = 128)
Continent ileostomy: n = 14
Other: n = 3
28 individuals (10 females and 18 males) who underwent colectomy at age 14 y or younger[63]12 y (SD, 8.4; range, 1–37 y)IRA: n = 7Day:Day:Rosenberg self-esteem score: 25.53/30cNot assessed10/28 reported cancer-related worry post colectomy, with a trend that young age (<18 y) was associated with more cancer-related worry.
IRA: 3.8 (SD, 1.5)IRA: 71.4% (n = 7)
IPAA: 5.3 (SD, 2.4)IPAA: 85.7% (n = 21)
IPAA: n = 21Night:Night:
IRA: 1.3 (SD, 0.6)IRA: 50.0% (n = 7)
IPAA: 1.3 (SD, 0.5)IPAA: 61.9% (n = 21)
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