title: Patients' perspectives of living with a percutaneous endoscopic gastrostomy (PEG).
abstract: BACKGROUND
  Since enteral nutrition therapy is the preferred nutritional support for dysphagic patients with a range of diagnoses, PEG has become part of traditional care. However, enteral nutrition with PEG transfers treatment responsibility and activity to the patients and their carers, so the advantages should be discussed. The aim of this study was therefore to investigate patients' experience of living with a percutaneous endoscopic gastrostomy (PEG) in order to increase the understanding of patients' need for support.
  
  
  METHODS
  In a prospective study at Karolinska University Hospital in Sweden, data were collected consecutively at the time of PEG and two months later using a study-specific questionnaire about each patient's experience of living with a PEG. Fishers exact test was used to test for statistically significant difference at five per cent level.
  
  
  RESULTS
  There were 104 responders (response rate of 70%). Women felt more limited in daily activity compared to men (p = 0.004). Older patients experienced a more limited ability to influence the number of feeding times compared to younger (p = 0.026). Highly educated patients found feeding more time-consuming (p = 0.004). Patients with a cancer diagnosis reported that the PEG feeding interfered with their oral feeding more than patients with a neurological disease (p = 0.009). Patients mostly contacted the PEG outpatient clinic with problems regarding their PEG, and were mainly assisted by their spouse rather than district nurses.
  
  
  CONCLUSIONS
  PEG feeding is time-consuming and interferes with daily life. Although 73% was satisfied, patients' experiences of living with a PEG may be dependent on age, sex, education and diagnosis. Spouses are the main carers for PEG patients at home, and patients prefer to go to the PEG outpatient clinic for help if problems occur.
authors.affiliation: Unit of Upper Gastrointestinal Research, Department of Molecular Medicine and Surgery, Karolinska Institutet, Stockholm, Sweden. lena.martin@karolinska.se
authors.forename: Lena
authors.initials: L
authors.lastname: Martin
authors.forename: John
authors.initials: J
authors.lastname: Blomberg
authors.forename: Pernilla
authors.initials: P
authors.lastname: Lagergren
mesh_terms: D000203:Activities of Daily Living / Q000523:psychology; D000367:Age Factors; D000368:Aged; D017028:Caregivers / Q000523:psychology; D004750:Enteral Nutrition / Q000379:methods / Q000523:psychology*; D005260:Female; D005773:Gastroscopy / Q000379:methods / Q000523:psychology*; D005774:Gastrostomy / Q000379:methods / Q000523:psychology*; D019538:Health Care Surveys; D006801:Humans; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000523:psychology; D009422:Nervous System Diseases / Q000523:psychology; D017060:Patient Satisfaction; D011446:Prospective Studies; D011788:Quality of Life / Q000523:psychology; D012737:Sex Factors; D012923:Social Class; D011795:Surveys and Questionnaires