Assessing palliative care need in left ventricular assist device patients and heart transplant recipients

Abstract

Objectives Palliative care (PC) has gained rising attention in a holistic treatment approach to chronic heart failure (HF). It is unclear whether there is a need for PC in left ventricular assist device (LVAD) patients or heart transplant recipients. Methods In a cross-sectional explorative pilot study, outpatients after heart transplantation (HTx, n = 69) or LVAD implantation (n = 21) underwent screening for palliative care (PC) need and evaluation of symptom burden and psychological distress using tools that emanated from palliative cancer care. Results The ‘Palliative Care Screening Tool for Heart Failure Patients’ revealed scores of 4.3 ± 2.2 in HTx and 6.0 ± 2.1 in LVAD patients (max. 12 points, P = 0.003), indicating the need for PC (≥5 points) in 32% of HTx and 67% of LVAD patients. Symptom burden, as assessed by MIDOS (‘Minimal Documentation System for Palliative Care’) scores was substantial in both groups (4.9 ± 4.7 in HTx vs 6.6 ± 5.3 in LVAD, max. 30 points, P = 0.181). ‘Fatigue’, ‘weakness’ and ‘pain’ were the most frequent symptoms. Using the ‘Distress-Thermometer’, ‘clinically relevant’ distress was detected in 57% of HTx and 47% of LVAD patients (P = 0.445). In the PHQ-4 (‘4-Item Patient Health Questionnaire’), 45% of LVAD patients, compared to only 10% of HTx patients, reported mild symptoms of anxiety and depression. Conclusions Findings reveal substantial need for PC in LVAD patients and, to a lesser extent, in heart transplant recipients, suggesting that multi-disciplinary PC should be introduced into routine aftercare.

Symptom burden, psychosocial distress and palliative care needs in heart failure – A cross-sectional explorative pilot study

“…Apart from the MIDOS, the tools used in this study’s cross-sectional approach could be a valuable addition to the assessment of PROMs in HF. They moreover proved easy and self-explanatory in use, allowing for assessments to be smoothly integrated into clinical routine in the setting of specialist HF care, which is in line with previous studies [ 32 , 38 ].…”

“…Comparing results of the current study with previously published studies from our tertiary care centre may help put the findings into perspective. PROMs employed in this study were previously applied in advanced HF patients on LVAD support and heart transplant recipients [ 38 ] and, naturally, terminal cancer inpatients [ 39 ]. While heart transplant recipients have the lowest MIDOS score [ 38 ], which can be expected and attributed to the nature of the received treatment, the MIDOS score of terminal cancer patients exceeds those of HF patients [ 39 ], even of those hospitalized.…”

“…PROMs employed in this study were previously applied in advanced HF patients on LVAD support and heart transplant recipients [ 38 ] and, naturally, terminal cancer inpatients [ 39 ]. While heart transplant recipients have the lowest MIDOS score [ 38 ], which can be expected and attributed to the nature of the received treatment, the MIDOS score of terminal cancer patients exceeds those of HF patients [ 39 ], even of those hospitalized. However, before prematurely concluding that the symptom burden in terminal cancer may ultimately be higher than in advanced HF, it should be taken into consideration that the MIDOS questionnaire may not ideally portray HF symptomatology.…”

“…The PCST showed that many HF patients fulfil criteria for “specialised PC”. Across different HF cohorts, LVAD patients, together with hospitalized HF patients, may have the greatest need for additional supportive treatment [ 38 ]. While benefits of PC interventions in HF have recently been demonstrated, evidence that patients judged as “being in need of PC” by the PCST profit from such care is so far lacking.…”

Inpatient Specialist Palliative Care in Patients With Left Ventricular Assist Devices (LVAD): A Retrospective Case Series

“…Besides improving symptom control, the integration of sPC has been shown to be beneficial concerning shared decision making, defining and documenting end-of-life wishes (advanced care planning), and reducing distress of patients and relatives along their care pathway ( 9 ). Despite the fact that LVAD therapy is challenging for patients and their families ( 10 ), integration of sPC remains low ( 11 ) and European data on sPC involvement in the care for patients with LVAD are scarce ( 12 , 13 ). Nevertheless, the European Society of Cardiology (ESC) generally recommends a palliative care consultation in all patients in the advanced stages of heart failure and for those considered for MCS or HTX before such interventions as a matter of protocol ( 3 ).…”