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

Published online by Cambridge University Press:  08 March 2007

Janet P. Baxter ,
Peter M. Fayers  and
Alastair W. McKinlay
Janet P. Baxter*
Affiliation:
Department of Digestive Disease and Clinical Nutrition, Ninewells Hospital and Medical School, Dundee, UK
Peter M. Fayers
Affiliation:
Department of Public Health, University of Aberdeen, Foresterhill, Aberdeen, UK
Alastair W. McKinlay
Affiliation:
Department of Gastroenterology, Aberdeen Royal Infirmary, Foresterhill, Aberdeen, UK
*
*Corresponding author: Mrs Janet Baxter, fax +44 1382 632317, email janet.p.baxter@tuht.scot.nhs.uk
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Abstract

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Home parenteral nutrition is an established method of supporting patients with intestinal failure, but this treatment may be life long and imposes severe restrictions on daily life. Impact on quality of life is an important outcome when considering the management of home parenteral nutrition patients. This paper reviews studies in which the quality of life of patients receiving home parenteral nutrition has been assessed. A systematic search of electronic databases and relevant publications was undertaken to identify generic or treatment-specific questionnaires used with home parenteral nutrition patients. Many of the thirty-four reports discovered were small studies. Nineteen used non-specific generic instruments, eight used non-validated questionnaires, four used a combination of both, and three did not use any formal tool. Few systematic patterns emerged. There are few available data on the quality of life of home parenteral nutrition patients, and there is a need for standardised, scientifically validated, treatment-specific instruments to measure quality of life in this population.

Keywords

Quality of lifeParenteral nutritionHomeIntestinal failure
Type
Research Article
Information
British Journal of Nutrition , Volume 94 , Issue 5 , November 2005 , pp. 633 - 638
Copyright
Copyright © The Nutrition Society 2005

References

Addington-Hall, J & Kalra, L (2001) Who should measure quality of life?. BMJ 322, 1417–1420.CrossRefGoogle ScholarPubMed
Baxter, JP, McKee, RF & Pennington, CR (2002) An accurate reflection of home parenteral nutrition in Scotland. Clin Nutr 4, 42.Google Scholar
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.CrossRefGoogle ScholarPubMed
Borgaonkar, MR & Irvine, EJ (2000) Quality of life measurement in gastrointestinal and liver disorders. Gut 47, 444–454.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
Brooks, R and the EuroQol Group (1996) EuroQol: the current state of play. Health Policy 37, 53–72.CrossRefGoogle ScholarPubMed
Broviac, JW & Scribner, BH (1974) Prolonged parenteral nutrition at home. Surg Gynaecol Obstet 139, 24–28.Google Scholar
Cameron, EAB, Binnie, JAH, Jamieson, NV, Pollard, S & Middleton, SJ (2002). Transplant Proc 34, 965–966.CrossRefGoogle Scholar
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.CrossRefGoogle ScholarPubMed
Carlsson, E, Bosaeus, I & Nordgren, S (2003) Quality of life and concerns in patients with short bowel syndrome. Clin Nutr 22, 445–452.CrossRefGoogle ScholarPubMed
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.Google Scholar
Cozzaglio, L, Balzola, F & Cosetino, F (1997) Outcome of cancer patients receiving home parenteral nutrition. JPEN 21, 339–342.CrossRefGoogle ScholarPubMed
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.Google Scholar
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.Google Scholar
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.Google Scholar
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.Google Scholar
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.Google ScholarPubMed
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.CrossRefGoogle ScholarPubMed
Elia, M ((2002)) Current Aspects of Artificial Nutrition Support in the UK Redditch, Worcestershire: BAPEN.Google Scholar
Ferrans, CE & Powers, MJ (1992) Psychometric assessment of quality of life index. Res Nurs Health 15, 29–38.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
Gaskamp, CD (2000) Changes in family economic resources and quality of life in long-term home parenteral nutrition care. PhD Thesis, University of Kansas.Google Scholar
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
Herfindal, ET, Bernstein, LR, Kudzia, K & Wong, A (1989) Survey of home nutritional support patients. JPEN 13, 255–261.CrossRefGoogle ScholarPubMed
Jeppesen, PJ, Langholz, E & Mortensen, PB (1999) Quality of life in patients receiving home parenteral nutrition. Gut 44, 844–852.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle Scholar
Ladefoged, K (1981) Quality of life in patients on home parenteral nutrition. JPEN 5, 132–137.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle Scholar
McRitchie, KJ (1978) Life without eating or drinking. Can Psych Assoc J 23, 373–378.Google Scholar
McRitchie, KJ (1980) Parenteral nutrition outside hospital. Can J Psychiatry 25, 308–313.CrossRefGoogle Scholar
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.Google Scholar
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.CrossRefGoogle ScholarPubMed
Messing, B, Landais, P, Goldfarb, B & Irving, M (1989) Home parenteral nutrition in adults: a muticentre survey in Europe. Clin Nutr 8, 3–9.CrossRefGoogle Scholar
Mughal, M & Irving, M (1986) Home parenteral nutrition in the United Kingdom and Ireland. Lancet 2, 383–387.CrossRefGoogle Scholar
Nightingale, J (2001) Intestinal Failure. London: Greenwich Medical Media.Google Scholar
O'Hanrahan, T & Irving, MH (1992) Home parenteral nutrition in the United Kingdom and Ireland. Clin Nutr 11, 331–336.CrossRefGoogle Scholar
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.Google ScholarPubMed
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.CrossRefGoogle ScholarPubMed
Price, BS & Levine, EL (1979) Permanent total parenteral nutrition: psychological and social responses of the early stages. JPEN 3, 48–52.CrossRefGoogle ScholarPubMed
Reddy, P & Malone, M (1998) Cost and outcome analysis of home parenteral and enteral nutrition. JPEN 22, 302–310.CrossRefGoogle ScholarPubMed
Richards, DM & Irving, MH (1997) Assessing the quality of life of patients with intestinal failure on home parenteral nutrition. Gut 40, 218–222.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle Scholar
Slevin, ML, Plant, H & Lynch, D (1988) Who should measure quality of life, the doctor or the patient?. Br J Cancer 57, 109–112.CrossRefGoogle ScholarPubMed
Smith, CE (1993) Quality of life in long term total parenteral nutrition patients and their family caregivers. JPEN 17, 501–506.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle Scholar
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.CrossRefGoogle Scholar
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.CrossRefGoogle ScholarPubMed
Thul, P & Bauer, K (2003) Quality of life under home parenteral nutrition with special emphasis on cancer patients. Clin Nutr 22, S61.CrossRefGoogle Scholar
Ware, JE Jr (1994) SF-36, Physical and Mental Health Summary Scales: A User Manual. Boston: Health Institute, NEMC.Google Scholar
WHOQOL Group (1993) Measuring Quality of Life: The Development of the World Health Organization Quality of Life Instrument (WHOQOL). Geneva: WHO.Google Scholar
Yates, J, Chalmer, B & McKegney, P (1980) Evaluation of patients with advanced cancer using the Karnofsky Performance Status. Cancer 45, 2220–2224.3.0.CO;2-Q>CrossRefGoogle ScholarPubMed