Publication
Demographic and clinical profile of children with congenital heart diseases receiving palliative care
Prabhu S, Dixit P, Dinand V, Khanna S, Sumitra V, Jain S, Mishra J, Panda B, Bodhanwala M · Cardiology in the Young · 2024
Background: The role of pediatric palliative care (PPC) is well described in oncology, however, its involvement in children with congenital heart disease (CHD) is not well explored. Method(s): This prospective interventional study was conducted on 100 patients below 18 years of age having CHD with no corrective surgical management available or who become inoperable or who required multiple surgical revisions with poor outcomes. The demographic profile and challenges faced by the parents were recorded. They were enrolled in a PPC unit and were provided counseling sessions for 1 month along with other palliative care provisions. For children between 2 and 18 years of age (N =20), an age-specific PedsQL cardiac module was used to assess their quality of life before and after 1 month of enrolment. Result(s): The challenges encountered by the parents (n=100) were categorized as - financial difficulty (93%), anxiety regarding outcome (94%), lack of communication (41%), and non-availability of specialty care (25%). On the age-specific PedsQL cardiac module, the 4 domains of physical, emotional, cognitive, and psychosocial were analyzed. The domain most affected in 2 to 4 years (n=11) was emotional, 5 to 7 years (n=4) physical, and all domains were equally affected in ages 8 to 12 (n=3), and 13 to 18 years (n=2). Incorporating PPC consultation showed improvement in all four domains, especially psychosocial. There was a statistically significant improvement in the quality of life in the physical (p<0.001) as most of the patients enrolled had undergone surgery during counseling. Emotional (p = 0.001), Cognitive (p = 0.032), although nonstatistically significant, an improvement in the Social (p = 0.145) was also observed. For children who had poor prognoses and were likely to succumb to disease, their families were counseled regarding end-of-life care, were provided with oxygen concentrators, and were introduced to the nearest referral center. As a result, the parents felt much more prepared and confident. Conclusion(s): Involvement of PPC teams in patients with CHD improves their overall quality of life and aids their families with advance care planning, goal setting, medical decision making and end-of-life care.
Synced from the TRENDS in Pediatric Palliative Care Zotero library, curated by The Siden Research Team. ICPCN does not host or verify the full text.