A review of the instruments used to assess the quality of life of adult patients with chronic intestinal failure receiving parenteral nutrition at home

British Journal of Nutrition

Volumn 94, Issue 5, 2005, Pages 633-638

  Baxter, Janet P ^a   Fayers, Peter M ^b   McKinlay, Alastair W ^c  

^a UNIVERSITY OF DUNDEE   (United Kingdom)

^b UNIVERSITY OF ABERDEEN   (United Kingdom)

^c ABERDEEN ROYAL INFIRMARY   (United Kingdom)

Author keywords

Home; Intestinal failure; Parenteral nutrition; Quality of life

Indexed keywords

ADULT; DAILY LIFE ACTIVITY; FUNCTIONAL ASSESSMENT; HOME CARE; HUMAN; INTESTINE FUNCTION DISORDER; PARENTERAL NUTRITION; PATIENT COMPLIANCE; QUALITY OF LIFE; QUESTIONNAIRE; RATING SCALE; REVIEW; SELF CONCEPT; STANDARDIZATION; SYSTEMATIC REVIEW; VALIDATION PROCESS;

ADULT; CHRONIC DISEASE; HUMANS; INTESTINAL DISEASES; PARENTERAL NUTRITION, HOME; PATIENT COMPLIANCE; QUALITY OF LIFE; QUESTIONNAIRES; TREATMENT OUTCOME;

EID: 27944500706     PISSN: 00071145     EISSN: 14752662     Source Type: Journal    
DOI: 10.1079/BJN20051533     Document Type: Review

References (57)

1. Addington-Hall J & Kalra L (2001) Who should measure quality of life? BMJ 322, 1417-1420.
2. Baxter JP, McKee RF & Pennington CR (2002) An accurate reflection of home parenteral nutrition in Scotland. Clin Nutr 4, Suppl. 26, 42.
3. Bergner M, Bobbit RA, Carter WB & Gilson B, (1981) The Sickness Impact Profile: development and final revision of a health status measure. Med Care 19, 787-805.
4. Borgaonkar MR & Irvine EJ (2000) Quality of life measurement in gastrointestinal and liver disorders. Gut 47, 444-454.
5. Bozzetti F, Cozzaglio L, Biganzoli B, Chiavenna G, De Cicco M, Gilli G, Percolla S & Pironi L (2002) Quality of life and length of survival in advanced cancer patients on home parenteral nutrition. Clin Nutr 21, 281-288.
6. Brooks R and the EuroQol Group (1996) EuroQol: the current state of play. Health Policy 37, 53-72.
7. Broviac JW & Scribner BH (1974) Prolonged parenteral nutrition at home. Surg Gynaecol Obstet 139, 24-28.
8. Cameron EAB, Binnie JAH, Jamieson NV, Pollard S & Middleton SJ (2002) Transplant Proc 34, 965-966.
9. Carlson GL, Maguire G, Williams N, Bradley A, Shaffer JL & Irving MH (1995) Quality of life on home parenteral nutrition: a single centre study of 37 patients. Clin Nutr 14, 219-228.
10. Carlsson E, Bosaeus I & Nordgren S (2003) Quality of life and concerns in patients with short bowel syndrome. Clin Nutr 22, 445-452.
11. Chambers A & Powell-Tuck J (2002) Quality of life and home parenteral nutrition: a randomised controlled trial of telemedicine - interim report. Clin Nutr 21, S8.
12. Cozzaglio L, Balzola F, Cosetino F, et al. (1997) Outcome of cancer patients receiving home parenteral nutrition. JPEN 21, 339-342.
13. Cuerda C, Camblor I, Breton P & Garcia-Peris P (2001) Long term follow up of home parenteral nutrition. Rivista Italiana di Nutrizione ed Enterale 19, 18-24.
14. Cuerda C, Camblor I, Breton P & Garcia-Peris P (2002) Long term follow up of home parenteral nutrition at a general hospital: complications and quality of life. Nutricion Hospitalaria 17, 15-21.
15. De Francesco A, Boggio Bertinet D, Fadda M, Gallneca P, Malfi G & Palmo A (2001) Long-term parenteral nutrition in adults: outcomes and quality of life. Clin Nutr 20, 3-5.
16. De Haes JCJM, Olschewski M, Dayers PM, Visser MRM, Cull A, Hopwood P & Sanderman R (1996) Measuring Quality of Life of the Cancer Patients: The Rotterdam Symptom Checklist (RSCL). A Manual. Groningen: Northern Centre for Healthcare Research.
17. Detsky AS, McLaughlin JR, Abrams HB, L'Abbe K, Whitwell J, Bombadier C & Jeejeebhoy K (1986) Quality of life of patients on long term parenteral nutrition at home. J Int Med 1, 26-33.
18. Di Martini A, Rovera GM, Graham TO, Furukawa H, Todo S, Funovits M, Lu S & Abu-Elmagd K (1998) Quality of life after small intestinal transplantation and among home parenteral nutrition patients. JPEN 22, 357-362.
19. Elia M (ed.) (2002) Current Aspects of Artificial Nutrition Support in the UK. Redditch, Worcestershire: BAPEN.
20. Ferrans CE & Powers MJ (1992) Psychometric assessment of quality of life index. Res Nurs Health 15, 29-38.
21. Fleming CR, Beart RW, Berkner S, Mcgill DB & Gaffron R (1980) Home parenteral nutrition for management of the severely malnourished adult patient. Gastroenterology 79, 11-18.
22. Fleming CR, McGill DB & Berkner S (1977) Home parenteral nutrition as primary therapy in patients with extensive Crohn's disease of the small bowel and malnutrition. Gastroenterology 73, 1077-1081.
23. Galandiuk S, O'Neill M, McDonald P, Fazio V & Steiger E (1990) A century of home parenteral nutrition for Crohn's disease. Am J Surg 159, 540-544.
24. Gaskamp CD (2000) Changes in family economic resources and quality of life in long-term home parenteral nutrition care. PhD Thesis, University of Kansas.
25. Gulledge AD, Gipson WT, Steiger E, Hooley R & Srp F (1980) Home parenteral nutrition for the short bowel syndrome. Psychological issues. Gen Hosp Psych 2, 271-281.
26. Guyatt G, Mitchell A, Irvine EJ, Singer J, Williams N, Goodacre R & Tompkins C (1989) A new measure for clinical trials in inflammatory bowel disease. Gastroenterology 96, 804-810.
27. Herfindal ET, Bernstein LR, Kudzia K & Wong A (1989) Survey of home nutritional support patients. JPEN 13, 255-261.
28. Jeppesen PJ, Langholz E & Mortensen PB (1999) Quality of life in patients receiving home parenteral nutrition. Gut 44, 844-852.
29. King LA, Carson LF, Konstantinides N, House MS, Adcock LL, Prem KA, Twiggs LB & Cerra FB (1993) Outcome assessment of home parenteral nutrition in patients with gynaecological malignancies: what have we learned in a decade of experience? Gynaecol Oncol 51, 377-382.
30. Ladefoged K (1981) Quality of life in patients on home parenteral nutrition. JPEN 5, 132-137.
31. McNeil BJ, Weichselbaum R & Pauker SG (1981) Speech and survival: trade-offs between quality of life in laryngeal cancer. N Engl J Med 305, 982-987.
32. McRitchie KJ (1978) Life without eating or drinking. Can Psych Assoc J 23, 373-378.
33. McRitchie KJ (1980) Parenteral nutrition outside hospital. Can J Psychiatry 25, 308-313.
34. Malik RA, Haddad AR, Pearson C, Bradley A, Anderson ID, Shaffer JL & Scolt NA (2000) Assessing the quality of life of patients managed in a specialist intestinal unit. Clin Nutr 19, S45.
35. Malone M (2002) Longitudinal assessment of outcome, health status, and changes in lifestyle associated with long-term home parenteral and enteral nutrition. JPEN 26, 281-288.
36. Messing B, Landais P, Goldfarb B & Irving M (1989) Home parenteral nutrition in adults: a muticentre survey in Europe. Clin Nutr 8, 3-9.
37. Mughal M & Irving M (1986) Home parenteral nutrition in the United Kingdom and Ireland. Lancet 2, 383-387.
38. Nightingale J (ed.) (2001) Intestinal Failure. London: Greenwich Medical Media.
39. O'Hanrahan T & Irving MH (1992) Home parenteral nutrition in the United Kingdom and Ireland. Clin Nutr 11, 331-336.
40. Pironi L, Miglioli M, Ruggeri E, Longo N, Suriani U, Maselli S, Gnudi S & Barbara L (1993) Home parenteral nutrition for the management of chronic intestinal failure: a 34 patient-year experience. Ital J Gastr 25, 411-418.
41. Pironi L, Paganelli F, Labate AMM, Merli C, Guidetti C, Spinucci G & Miglioli M (2003) Safety and efficacy of home parenteral nutrition for chronic intestinal failure: a 16 year experience at a single centre. Dig & Liver Dis 35, 314-324.
42. Price BS & Levine EL (1979) Permanent total parenteral nutrition: psychological and social responses of the early stages. JPEN 3, 48-52.
43. Reddy P & Malone M (1998) Cost and outcome analysis of home parenteral and enteral nutrition. JPEN 22, 302-310.
44. Richards DM & Irving MH (1997) Assessing the quality of life of patients with intestinal failure on home parenteral nutrition. Gut 40, 218-222.
45. Richards DM, Scott N, Shaffer J & Irving M (1997) Opiate and sedative dependence predicts poor outcome for patients receiving home parenteral nutrition. JPEN 21, 336-338.
46. Rovera GM, DiMartini A, Graham TO, Hutson WR, Furukawa H, Todo S, Rakela J, Fung JJ & Abu-Elmagd K (1998) Quality of life after intestinal transplantation and on total parenteral nutrition. Transplant Proc 30, 2513-2514.
47. Scribner BH, Cole JJ, Christopher TG, Vizzo JE, Atkins RC & Blogg CR (1970) Long-term total parenteral nutrition. The concept of the artificial gut. J Am Med Assoc 212, 457-463.
48. Siepler JK, Diamantidis T & Okamato R (2003) Home parenteral nutrition in patients using specialised home care providers without complications has a higher quality of life than those using a general home care provider. Clin Nutr 22, S89.
49. Slevin ML, Plant H & Lynch D (1988) Who should measure quality of life, the doctor or the patient? Br J Cancer 57, 109-112.
50. Smith CE (1993) Quality of life in long term total parenteral nutrition patients and their family caregivers. JPEN 17, 501-506.
51. Smith CE, Curtas S, Kleinbeck S, Werkowitch M, Mosier M, Seidner DL & Steiger E (2003) Clinical trial of interactive and video taped educational interventions reduce infection, reactive depression and re-hospitalisations for sepsis in patients on home parenteral nutrition. JPEN 27, 137-146.
52. Smith CE, Curtas S, Werkowitch M, Kleinbeck S & Howard L (2002) Home parenteral nutrition: does affiliation with a national support and educational organisation improve patient outcomes? JPEN 26, 159-163.
53. Stokes MA, Almond DJ, Pettit SH, Mughal MM, Turner M, Shaffer JL & Irving MH (1988) Home parenteral nutrition: a review of treatment in 76 consecutive cases. Br J Surg 75, 481-483.
54. Thul P & Bauer K (2003) Quality of life under home parenteral nutrition with special emphasis on cancer patients. Clin Nutr 22, S61.
55. Ware JE Jr (1994) SF-36, Physical and Mental Health Summary Scales: A User Manual. Boston: Health Institute, NEMC.
56. WHOQOL Group (1993) Measuring Quality of Life: The Development of the World Health Organization Quality of Life Instrument (WHOQOL). Geneva: WHO.
57. Yates J, Chalmer B & McKegney P (1980) Evaluation of patients with advanced cancer using the Karnofsky Performance Status. Cancer 45, 2220-2224.