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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)

    Population Length of Follow-up Type of Procedure Stool Frequency Stool Continency Body Image Sexual Functioning Comments
    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 = 161 Not assessed Not assessed EORTC QLQ-CR38 a EORTC QLQ-CR38 a SF-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 = 118 IPAA: 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 reported IRA: n = 33 Not assessed Not assessed SF-36 b SF-36 b
    IPAA: n = 21 IRA: 89.9 (SD, 16.1) IRA: 86.2 (SD, 21.6)
    Ileostomy: n = 1 IPAA: 72.1 (SD, 23) IPAA: 77.5 (SD, 26.2)
    Unknown surgery type: n = 2 No 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 y IRA: n = 136 Not assessed Not assessed EORTC QLQ-CR38 a EORTC QLQ-CR38 a 41% 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 = 112 FAP no surgery: 91.9 (SD, 16.1) After colectomy: 42.2 (SD, 23.2) Worked less: n = 30 (24%)
    Ileostomy: n = 42 At risk: 94.0 (SD, 13.1) At risk: 47.6 (SD, 23.7) Worked more n = 5 (4%)
    Other: n = 6 Noncarrier: 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 = 71 Not assessed Day: 71% (n = 149) Not assessed Not assessed The 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 = 39 Night: 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 = 7 Day: Day: Rosenberg self-esteem score : 25.53/30c Not assessed 10/28 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 = 21 Night: 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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