Functioning and health in patients with cancer on home-parenteral nutrition: a qualitative study

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.