title: The impact of prophylactic total gastrectomy on health-related quality of life: a prospective cohort study.
abstract: BACKGROUND
  The advice to individuals with identified CDH1 mutations is generally to undertake prophylactic total gastrectomy (PTG). This study evaluated the effect of PTG on health-related quality of life (HRQL) in asymptomatic individuals with identified CDH1 mutations at high risk for gastric cancer.
  
  
  METHODS
  Individuals with hereditary diffuse gastric cancer (HDGC) were recruited to a prospective, multicenter UK study. Questionnaires, including the European Organization for Research and Treatment for Cancer core Quality-of-Life Questionnaire (EORTC QLQ C30); the gastric cancer specific module (EORTC QLQ STO22); and the 36-item short form health survey version 2.0, were completed before and at regular intervals after surgery.
  
  
  RESULTS
  Sixty individuals fulfilled HDGC criteria; 38 (63%) had a CDH1 mutation and 32 (53%) underwent PTG. At baseline, there was no significant difference in mental health depending on CDH1 mutation status and treatment preference. Physical functioning reduced in the first month after surgery but recovered to baseline by 12 months. Similarly mental functioning reduced in the first month after surgery but recovered by 3 to 9 months. However, specific symptoms were identified, such as diarrhoea (70%), fatigue (63%), discomfort when eating (81%), reflux (63%), eating restrictions (45%), and body image (44%), which persisted after PTG.
  
  
  CONCLUSIONS
  Patients contemplating prophylactic gastrectomy can be reassured about the long-term HRQL outcomes, but some residual symptoms require adjustment.
authors.affiliation: *MRC Cancer Unit, University of Cambridge, UK †Department of Oncology, Addenbrooke's Hospital, Cambridge, UK ‡Cambridge Oesophago-Gastric Centre, Addenbrooke's Hospital, Cambridge, UK §Cancer Research UK Cambridge Institute, Cambridge, UK.
authors.forename: Elizabeth
authors.initials: E
authors.lastname: Worster
authors.forename: Xinxue
authors.initials: X
authors.lastname: Liu
authors.forename: Susan
authors.initials: S
authors.lastname: Richardson
authors.forename: Richard H
authors.initials: RH
authors.lastname: Hardwick
authors.forename: Sarah
authors.initials: S
authors.lastname: Dwerryhouse
authors.forename: Carlos
authors.initials: C
authors.lastname: Caldas
authors.forename: Rebecca C
authors.initials: RC
authors.lastname: Fitzgerald
mesh_terms: D000293:Adolescent; D000328:Adult; D018949:Antigens, CD1 / Q000235:genetics; D005260:Female; D005500:Follow-Up Studies; D005743:Gastrectomy / Q000379:methods* / Q000523:psychology; D020022:Genetic Predisposition to Disease; D006801:Humans; D008297:Male; D008875:Middle Aged; D009154:Mutation; D011379:Prognosis; D011446:Prospective Studies; D011788:Quality of Life; D013274:Stomach Neoplasms / Q000235:genetics / Q000517:prevention & control* / Q000523:psychology; D011795:Surveys and Questionnaires; D055815:Young Adult
chemical_list: D018949:Antigens, CD1