title: The positive role of caregivers in terminal cancer patients' abilities: usefulness of the ICF framework.
abstract: BACKGROUND
  Among the purposes of palliative care, reducing perceived disability during the terminal stages of illness is of paramount importance.
  
  
  OBJECTIVE
  The aim of this study was to shed light on the possible role of the caregiver as a modulator of disability in patients with advanced cancer receiving end-of-life palliative care by means of the WHO International Classification of Functioning, Disability and Health (ICF).
  
  
  METHODS
  Observational prospective cross-sectional study.
  
  
  METHODS
  Inpatients of a Palliative Care Unit.
  
  
  METHODS
  Fifty consecutively-enrolled inpatients (aged 69.9±10.6), in bed on average for more than 50% of daily hours (Karnofsky Performance Status Scale: 31.2±10.0) and functionally severely compromised (Barthel Index: 45.3±19.7); the average estimated survival was 6 weeks or more (Palliative Prognostic Index: 5.5±2.4).
  
  
  METHODS
  Inpatients compiled a self-report questionnaire on quality of life (SF-12) and were interviewed on the ICF checklist.
  
  
  RESULTS
  Patients reported significantly lower quality of life scores (SF-12) than the normative sample for both the Physical Component Summary Score (29.2±8.1 vs. 50.0±9.4; Student's t-test P=0.00001) and the Mental Component Summary Score (39.7±11.8 vs. 50.0±9.9; P=0.01). As to ICF Activity and Participation delta (Δ) values, describing caregiver's impact on patient's life: 26 domains had a median Δ=0 (neutral caregiver's role), 10 domains had a median Δ>0 (caregiver as a positive modulator of the patient's disability); no negative Δ values were reported (caregiver never considered as a barrier). Environmental Factors were mainly facilitators.
  
  
  CONCLUSIONS
  Even if patients were mostly confined to bed, with reduced functional autonomy and marked dependency on others, their disability was reduced thanks to the caregiver's modulator role.
  
  
  CONCLUSIONS
  The ICF framework could also be extended to palliative care, because by integrating the standard functional assessment, it allows to identify two levels of intervention: one directly affecting patients' activity and participation, and one related to barriers and facilitators (i.e., caregivers, environmental factors).
authors.affiliation: Psychology Unit, "Salvatore Maugeri" Foundation IRCCS, Scientific Institute of Montescano, Pavia, Italy - anna.giardini@fsm.it.
authors.forename: Anna
authors.initials: A
authors.lastname: Giardini
authors.forename: Pietro
authors.initials: P
authors.lastname: Ferrari
authors.forename: Enrica M
authors.initials: EM
authors.lastname: Negri
authors.forename: Giuseppina
authors.initials: G
authors.lastname: Majani
authors.forename: Caterina
authors.initials: C
authors.lastname: Magnani
authors.forename: Pietro
authors.initials: P
authors.lastname: Preti
mesh_terms: D000203:Activities of Daily Living; D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers; D003430:Cross-Sectional Studies; D005260:Female; D006760:Hospitalization; D006801:Humans; D064702:International Classification of Functioning, Disability and Health; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000503:physiopathology* / Q000523:psychology / Q000628:therapy; D010166:Palliative Care; D011446:Prospective Studies; D013727:Terminal Care