title: Functioning and health in patients with cancer on home-parenteral nutrition: a qualitative study.
abstract: BACKGROUND
  Malnutrition is a common problem in patients with cancer. One possible strategy to prevent malnutrition and further deterioration is to administer home-parenteral nutrition (HPN). While the effect on survival is still not clear, HPN presumably improves functioning and quality of life. Thus, patients' experiences concerning functioning and quality of life need to be considered when deciding on the provision of HPN. Currently used quality of life measures hardly reflect patients' perspectives and experiences. The objective of our study was to investigate the perspectives of patients with cancer on their experience of functioning and health in relation to HPN in order to get an item pool to develop a comprehensive measure to assess the impact of HPN in this population.
  
  
  METHODS
  We conducted a series of qualitative semi-structured interviews. The interviews were analysed to identify categories of the International Classification of Functioning, Disability and Health (ICF) addressed by patients' statements. Patients were consecutively included in the study until an additional patient did not yield any new information.
  
  
  RESULTS
  We extracted 94 different ICF-categories from 16 interviews representing patient-relevant aspects of functioning and health (32 categories from the ICF component 'Body Functions', 10 from 'Body Structures', 32 from 'Activities & Participation', 18 from 'Environmental Factors'). About 8% of the concepts derived from the interviews could not be linked to specific ICF categories because they were either too general, disease-specific or pertained to 'Personal Factors'. Patients referred to 22 different aspects of functioning improving due to HPN; mainly activities of daily living, mobility, sleep and emotional functions.
  
  
  CONCLUSIONS
  The ICF proved to be a satisfactory framework to standardize the response of patients with cancer on HPN. For most aspects reported by the patients, a matching concept and ICF category could be found. The development of categories of the component 'Personal Factors' should be promoted to close the existing gap when analyzing interviews using the ICF. The identification and standardization of concepts derived from individual interviews was the first step towards creating new measures based on patients' preferences and experiences which both catch the most relevant aspects of functioning and are sensitive enough to monitor change associated to an intervention such as HPN in a vulnerable population with cancer.
authors.affiliation: Institute for Health and Rehabilitation Sciences, Ludwig-Maximilians-University, Munich, Germany.
authors.forename: Martin
authors.initials: M
authors.lastname: Mueller
authors.forename: Stefanie
authors.initials: S
authors.lastname: Lohmann
authors.forename: Paul
authors.initials: P
authors.lastname: Thul
authors.forename: Arved
authors.initials: A
authors.lastname: Weimann
authors.forename: Eva
authors.initials: E
authors.lastname: Grill
mesh_terms: D000203:Activities of Daily Living; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D005858:Germany; D006305:Health Status Indicators; D006801:Humans; D007407:Interviews as Topic; D044342:Malnutrition / Q000517:prevention & control; D008875:Middle Aged; D009369:Neoplasms / Q000628:therapy*; D016331:Parenteral Nutrition, Home; D036301:Qualitative Research; D011788:Quality of Life
references.citation: Soc Sci Med. 2002 May;54(9):1309-21
references.pmid: 12058848
references.citation: Am J Clin Dermatol. 2006;7(1):45-63
references.pmid: 16489842
references.citation: Psychooncology. 1998 Mar-Apr;7(2):101-11
references.pmid: 9589508
references.citation: Support Care Cancer. 2000 May;8(3):175-9
references.pmid: 10789956
references.citation: Clin Nutr. 2007 Jun;26(3):275-88
references.pmid: 17161888
references.citation: Nutrition. 2000 Oct;16(10):1013-4
references.pmid: 11054609
references.citation: J Natl Cancer Inst. 1997 Dec 3;89(23):1763-73
references.pmid: 9392617
references.citation: Cancer. 2004 May 1;100(9):1967-77
references.pmid: 15112279
references.citation: Arthritis Rheum. 2005 Jun 15;53(3):431-9
references.pmid: 15934102
references.citation: Gynecol Oncol. 1993 Dec;51(3):377-82
references.pmid: 8112649
references.citation: J Pain Symptom Manage. 2009 Feb;37(2):196-205
references.pmid: 18619767
references.citation: J Pain Symptom Manage. 1996 Jul;12(1):3-10
references.pmid: 8718910
references.citation: Cancer. 2005 Feb 15;103(4):863-8
references.pmid: 15641035
references.citation: Appl Physiol Nutr Metab. 2008 Feb;33(1):1-11
references.pmid: 18347648
references.citation: J Rehabil Med. 2005 Jul;37(4):212-8
references.pmid: 16024476
references.citation: JPEN J Parenter Enteral Nutr. 1997 Nov-Dec;21(6):339-42
references.pmid: 9406131
references.citation: Dig Dis. 2003;21(3):198-213
references.pmid: 14571093
references.citation: Clin Nutr. 2002 Aug;21(4):281-8
references.pmid: 12135587
references.citation: Br J Cancer. 1997;75(1):106-9
references.pmid: 9000606
references.citation: Res Nurs Health. 2000 Aug;23(4):334-40
references.pmid: 10940958
references.citation: Eur J Cancer Care (Engl). 2008 May;17(3):290-7
references.pmid: 18419633
references.citation: Adv Intern Med. 1950;4:1-75
references.pmid: 14770961
references.citation: J Gastrointest Surg. 2008 Jul;12(7):1193-201
references.pmid: 18347879
references.citation: Support Care Cancer. 2004 Aug;12(8):543-9
references.pmid: 15221580
references.citation: Palliat Med. 2007 Dec;21(8):673-82
references.pmid: 18073253
references.citation: J Appl Physiol (1985). 2008 Jan;104(1):57-66
references.pmid: 17975124
references.citation: Curr Opin Clin Nutr Metab Care. 2007 May;10(3):318-23
references.pmid: 17414501
references.citation: JPEN J Parenter Enteral Nutr. 2006 May-Jun;30(3):222-30
references.pmid: 16639069
references.citation: Arthritis Res Ther. 2006;8(4):R84
references.pmid: 16684371
references.citation: Eur J Oncol Nurs. 2007 Jul;11(3):238-46
references.pmid: 17350337
references.citation: Int J Gynecol Cancer. 2002 Sep-Oct;12(5):424-8
references.pmid: 12366656
references.citation: Ann Oncol. 2005 Jul;16(7):1185-91
references.pmid: 15849218
references.citation: Cancer. 2004 May 1;100(9 Suppl):2026-46
references.pmid: 15108223
references.citation: Psychooncology. 2006 Jan;15(1):20-30
references.pmid: 15929055
references.citation: J Clin Oncol. 2002 Jan 15;20(2):567-73
references.pmid: 11786587
references.citation: Clin Nutr. 2005 Apr;24(2):304-13
references.pmid: 15784493
references.citation: J Clin Oncol. 2002 Jan 15;20(2):371-8
references.pmid: 11786563
references.citation: J Public Health Med. 2003 Dec;25(4):313-7
references.pmid: 14747590
references.citation: Support Care Cancer. 2004 May;12(5):355-9
references.pmid: 15064937
references.citation: J Pain Symptom Manage. 1995 Feb;10(2):131-41
references.pmid: 7730685