The positive role of caregivers in terminal cancer patients' abilities: Usefulness of the ICF framework

BACKGROUND: Among the purposes of palliative care, reducing perceived disability during the terminal stages of illness is of paramount importance. AIM: 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). DESIGN: Observational prospective cross-sectional study. SETTING: Inpatients of a Palliative Care Unit. POPULATION : 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 (?) values, describing caregiver's impact on patient's life: 26 domains had a median ?=0 (neutral caregiver's role), 10 domains had a median ?>0 (caregiver as a positive modulator of the patient's disability); no negative ? 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. CLINICAL REHABILITATION IMPACT: 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).