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A Journal on Physical Medicine and Rehabilitation after Pathological Events

Official Journal of the Italian Society of Physical and Rehabilitation Medicine (SIMFER), European Society of Physical and Rehabilitation Medicine (ESPRM), European Union of Medical Specialists - Physical and Rehabilitation Medicine Section (UEMS-PRM), Mediterranean Forum of Physical and Rehabilitation Medicine (MFPRM), Hellenic Society of Physical and Rehabilitation Medicine (EEFIAP)
In association with International Society of Physical and Rehabilitation Medicine (ISPRM)
Indexed/Abstracted in: CINAHL, Current Contents/Clinical Medicine, EMBASE, PubMed/MEDLINE, Science Citation Index Expanded (SciSearch), Scopus
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European Journal of Physical and Rehabilitation Medicine 2016 April;52(2):214-22


language: English

The positive role of caregivers in terminal cancer patients’ abilities: usefulness of the ICF framework

Anna GIARDINI 1, 2, Pietro FERRARI 2, Enrica M. NEGRI 2, Giuseppina MAJANI 1, Caterina MAGNANI 1, 2, Pietro PRETI 2

1 Psychology Unit, “Salvatore Maugeri” Foundation IRCCS, Scientific Institute of Montescano, Pavia, Italy; 2 Palliative Care Unit, “Salvatore Maugeri” Foundation IRCCS, San Martino Hospital, Mede, Pavia, Italy


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 (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.
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).

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