Illness denial questionnaire for patients and caregivers.

PURPOSE: Interest in assessing denial is still present, despite the criticisms concerning its definition and measurement. We tried to develop a questionnaire (Illness Denial Questionnaire, IDQ) assessing patients' and caregivers' denial in relation to their illness/disturbance. PATIENTS AND METHODS: After a preliminary study, a final version of 24 dichotomous items (true/false) was selected. We hypothesized a theoretical model with three dimensions: denial of negative emotions, resistance to change, and conscious avoidance, the first two composing the actual Denial and the last representing an independent component of the illness denial behavior. The IDQ was administered to 400 subjects (219 patients and 181 caregivers) together with the Anxiety-Depression Questionnaire - Reduced form (AD-R), in order to assess concurrent validity. Confirmatory factor analysis (CFA), internal consistency indices (Cronbach's α and McDonald's ω), and test-retest analysis were performed. RESULTS: CFA and internal consistency indices (Cronbach's α: 0.87-0.96) indicated a clear and meaningful three-factor structure of IDQ, for both patients and caregivers. Further analyses showed good concurrent validity, with Denial and its subscale negatively associated with anxiety and depression and avoidance positively associated with anxiety and depression. The IDQ also showed a good stability (r from 0.71 to 0.87). CONCLUSION: The IDQ demonstrated good psychometric properties. Denial of negative emotions and resistance to change seem to contribute to a real expression of denial, and conscious avoidance seems to constitute a further step in the process of cognitive-affective elaboration of the illness.

Preliminary report on left-ventricular assist devices: are patients' and caregivers' psychosocial needs adequately addressed?.

OBJECTIVES: Patients implanted with a Left Ventricular Assist Device (LVAD) constitute a new population of chronic heart failure (HF) patients requiring continuous medical support and representing heavy costs - both direct and indirect - for the healthcare system. If there is consensus about the increased survival, the psychosocial outcomes, in terms of psychological wellbeing, behavioral and social functioning of both patients and caregivers, are still unclear. Overall, it is not clear if local health and social services are equipped to support them in their needs. We conducted an observational study on the psychosocial characteristics and needs of LVAD patients. METHODS: Twenty-seven patients admitted for rehabilitation after implantation, and their caregivers were recruited. On admission, patients and caregivers were administered questionnaires assessing anxiety, depression, quality of life, level of social complexity and were interviewed about their social resources. At discharge, patients were re-assessed by questionnaires and patients/caregivers received a follow-up phone-interview after 8-12 months. RESULTS: LVAD patients' emotional well-being and subjective quality of life improved during the rehabilitation stay and they confirmed their satisfaction with LVAD at follow-up. Problems emerged concerning the inadequate health and social assistance that LVAD patients receive once home. More than 50% of patients showed substantial social complexity, the burden of which fell on the caregivers, whose strain hardly declined over time, remaining at a level requiring psychological attention. CONCLUSIONS: Technological advances that improve LVAD patients' survival should be rapidly followed by adequate interventions by policy makers to improve also the local health/social assistance provided and to address patients and caregivers psychosocial needs over time.

When LVAD Patients Die: The Caregiver's Mourning.

Left ventricular assist devices (LVADs) have progressively evolved, particularly in the last 10 years, to serve patients affected by severe heart failure as a bridge to transplant or destination therapy. The survival rate and quality of life of pre- and postimplant patients, as well as caregivers' perceptions and distress, are under investigation by the scientific community. But what caregivers think and feel after the loss of their loved one has not so far been examined. We contacted 16 principal caregivers of deceased LVAD patients by telephone. They were asked to evaluate their experience with LVADs and were administered a specific questionnaire about their mourning, the Caregiver Mourning Questionnaire (CMQ), to evaluate their perceptions of the physical, emotional, and social support-related problems that they had experienced during the previous 3 months. Positive aspects reported by the caregivers were the patient's overall subjective well-being and increased survival. Negative aspects were the difficulty to manage infections and the driveline, and the incomplete autonomy of the patient. Half of the caregivers reported not being preadvised about many of the problems they would face. The CMQ revealed that numerous caregivers had health problems, difficulty in sleeping, eating disorders, lack of energy, and loneliness. Use of psychotropic drugs and regrets about how they assisted their loved one also emerged. In conclusion, caregivers of LVAD patients may experience complicated mourning. Our data support in particular the need for an early intervention of palliative care which could prevent or reduce complicated mourning.

[Left ventricular assist device: which emotional impact on the patient?]. / Assistenza ventricolare meccanica: quale impatto emozionale sul paziente?

BACKGROUND: Advanced heart failure is a challenging disease; the implantable Left Ventricular Assist Device (L-VAD) is becoming a good chance for relieving symptoms and prolong survival in most CHF patients. The emotional impact of L-VAD implantation is thought to be high but, at present, published data are scant about that. Aim of this study was to evaluate the modifications of perceived quality of life (QoL) in a group of patients recently treated with L-VAD implantation, admitted to a residential cardiac rehabilitation program, and to compare the results to those obtained in patients awaiting heart transplantation and recently transplanted. MATERIAL AND METHOD: We enrolled 66 patients (pts) with a recent implant of L-VAD, 51 with refractory heart failure awaiting heart transplantation (HT) and 55 recently treated with HT. On day two after admission, all patients underwent a complete psychometric assessment consisting in the compilation of: Minnesota Living with Heart Failure Questionnaire (MLHFQ). Beck Anxiety Inventory (BAI). Beck Depression Inventory-II (BDI-II). RESULTS: L-VAD recipients had significantly higher scores at MLHFQ. Both the total score and the 2 subscales scores (respectively physical and emotional disturbances) were statistically significant when compared with post-transplant patients. Posttransplant pts had the lowest scores regarding anxiety symptoms, while the bearers of device had the highest ones. The same results were obtained for depression scores (BDI-II), both in total score and in the subscales (somatic symptoms and affective symptoms). CONCLUSIONS: With an opening scoring, this study showed the development of more relevant psychological troubles in patients treated with L-VAD when compared to those awaiting for heart transplantation and those transplanted.

[Analysis of the vital exhaustion construct in a female population during cardiac rehabilitation]. / Analisi del costrutto di vital exhaustion in una popolazione femminile durante riabilitazione cardiologica.

BACKGROUND: Vital Exhaustion (VE) is a psychological construct that has been shown to be predictive for cardiac morbidity and mortality. There are not sufficient data which clarify whether the female population express this construct differentely comparing to males. This study aims to analyze the construct of Vital Exhaustion in a population of women admitted to a cardiac rehabilitation program. MATERIAL AND METHOD: The selected sample consisted of 854 women with an average age of 58 years (SD +/- 10.2). All patients were at their first hospitalization for a cardiac rehabilitation program. The tool used to analyze the construct of Vital Exhaustion was the B scale of the Cognitive Behavioural Assessment Hospital form (CBA-H). The study also analyzed the answers to the D scale of the CBA-H concerning aspects of lifestyle and behavioral habits. RESULTS: The percentage of women with considerable value of Vital Exhaustion was very high (67.7%). Moreover, the group of women with higher Vital Exhaustion showed more dysfunctional habits (smoking, poor physical activity, incorrect diet) and more referred psychological problems as well as job and/or family distress and insomnia. 207 women (24.2%) of the sample belonged to economically active population; 136 (69%) of these women presented a high value of VE and 61 (31%) a low one. Among the employed women, 24% of the group with high VE value reported to be unsatisfied, while the same condition lowered at 9.6% in the group with low VE value (p = .004); moreover, 41.7% versus 18.5% (p = .000) described their working life as a source of tension. CONCLUSIONS: Considering a sample of female cardiac patients, this study shows that the construct of Vital Exhaustion is particularly present. It also appears that the construct of Vital Exhaustion can be interpreted as an indicator of lifestyle problems in women, helping health-professionals in selecting efficient educational and/or psychological interventions.