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Genetics of Colorectal Cancer (PDQ®)

  • Updated: 07/11/2014

Table 18. 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 
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-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 = 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-36 b SF-36 b
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-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 = 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)

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-C38 scores 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-36 scores range from 0–100, with 0 = lowest possible health status and 100 = best possible health status.
cWithin normal ranges for same age group.

References

  1. Van Duijvendijk P, Slors JF, Taat CW, et al.: Quality of life after total colectomy with ileorectal anastomosis or proctocolectomy and ileal pouch-anal anastomosis for familial adenomatous polyposis. Br J Surg 87 (5): 590-6, 2000.  [PUBMED Abstract]

  2. Andrews L, Mireskandari S, Jessen J, et al.: Impact of familial adenomatous polyposis on young adults: quality of life outcomes. Dis Colon Rectum 50 (9): 1306-15, 2007.  [PUBMED Abstract]

  3. Douma KF, Bleiker EM, Vasen HF, et al.: Quality of life and consequences for daily life of familial adenomatous polyposis (FAP) family members. Colorectal Dis 13 (6): 669-77, 2011.  [PUBMED Abstract]

  4. Fritzell K, Eriksson LE, Björk J, et al.: Self-reported abdominal symptoms in relation to health status in adult patients with familial adenomatous polyposis. Dis Colon Rectum 54 (7): 863-9, 2011.  [PUBMED Abstract]

  5. Durno CA, Wong J, Berk T, et al.: Quality of life and functional outcome for individuals who underwent very early colectomy for familial adenomatous polyposis. Dis Colon Rectum 55 (4): 436-43, 2012.  [PUBMED Abstract]