From Active to Palliative Care: Emotional Burden and Self Efficacy in Patients and Caregivers

Psychological assessment of Alexithymia domain in patient and caregiver

Assessment of the emotional state of patient and caregiver at the time of transition from active care to palliative care. The evaluation will be done by Toronto Alexithymia Scale, TAS-20 (G.J. Taylor, R.M. Bagby, J.D.A. Parker, 1992) to measure patient's and caregiver's ability to explore and share emotions. TAS-20 is a self-assessment questionnaire on alexithymia. It provides a total score, and the score of three dimensions that define the construct of Alexithymia: difficulty in identifying feelings, difficulty in communicating feelings to others and externally oriented thinking (operative thinking). It consists of 20 items measured on a five-point Likert scale, ranging from 1 (strongly disagree) to 5 (strongly agree). A total score ranging from 20 to 100 is measured, plus three scores relating to the three dimensions of alexithymia. Clinical cut-off is from 60 to 100.

Time frame: Test administred just once, at Time 0 (up to 5 days after the clinical decision about the suspension of active tratements, and subsequently activation of Palliative Care Unit consultation).

Psychological assessment of caregiver's burden domain.

Assessment of the caregiver burden at the time of transition from active care to palliative care. Assessment will be done by the following instrument: \- Caregiver Inventory, CGI-I (S. Serpentini et al., 2021) to measure the caregiver's burden. It is a self-report tool for assessing the caring burden, it measures the self-efficacy of the caregiver in different aspects of caregiving such as managing medical information, taking care of the patient, take care of ownself and manage difficult interactions/emotions. The scoring scale is a Likert-type scale with a ranging from 1 (not at all confident) to 9 points (totally confident). Range scoring is from 9 to 189. The higher the score, the higher will be the caregiver's emotional and care burden.

Time frame: Test administred just once, at Time 0 (up to 5 days after the clinical decision about the suspension of active tratements, and subsequently activation of Palliative Care Unit consultation).

Assessment of patient and caregiver self-efficacy domain.

Analysis of the results of the General Self-Efficacy Scale (GSE). It is a 10-item self-report psychometric scale that aims to measure the level of perceived self-efficacy to face the difficulties that life presents. It is a 5-point Likert-type scale. Score range is between 10 and 50, higher scores mean higher levels of perceived self efficay.