A survey demonstrates limited palliative care structures in paediatric nephrology from the perspective of a multidisciplinary healthcare team

Abstract

Aim Children and adolescents with end‐stage renal disease face a high morbidity and mortality. Palliative care provides a multidisciplinary approach to reduce disease burden and improve quality of life. This study evaluated concepts and current structures of palliative care from the perspective of a multidisciplinary paediatric nephrology team including physicians, nurses and psychosocial health professionals. Methods Evaluation was done by an online survey sent to the members of the German Society of Nephrology and to the nurse managers of German paediatric dialysis centres between April 9, 2018 and May 31, 2018. Results Out of the 52 respondents, 54% were physicians, 21% nurses and 25% psychosocial health professionals. The quality of actual palliative care service was rated as moderate (3.3 on a scale from one to six). Specialised palliative care teams (54%) and the caring paediatric nephrologist (50%) were considered as primarily responsible for palliative care. Two thirds wished for training in palliative care. In only 15% of the respondents’ centres, palliative care specialisation existed. Conclusion Palliative care structures in paediatric nephrology were not sufficient in the view of the multidisciplinary healthcare team. Therefore, efforts should be taken to integrate palliative care into the routine treatment of children and adolescents with chronic kidney diseases.

Adding Life to Their Years: The Current State of Pediatric Palliative Care in CKD

“…54 In a survey of multidisciplinary nephrology care team members, Thumfart et al found respondents identified a need for increased PPC resources but disagreed about which patients should routinely receive subspecialty PPC. 55 Both studies reinforce the need for integration of primary and subspecialty PPC in pediatric nephrology but highlight that nephrologists as stakeholders may be unsure how best to meet this need. Given the limited integration of PPC into pediatric nephrology, it is important to consider examples of successful integration including "kidney supportive care" and other pediatric chronic diseases.…”

“…Efforts must focus on nephrologists, as well as palliative care specialists, transplant surgeons, and other multidisciplinary team members. 11,12,23,54,55 In addition to continued study of burden, pain, HRQoL, and other outcomes, allowing patients and families to share experiences "in their own words," through qualitative research may provide the most persuasive means of achieving clinician recognition. 79 There is a need to further develop PPC capacity.…”

“…In a single-center analysis, Keefer et al found that fewer than half of specialist PPC consults for children with ESKD were requested by the nephrology service (55). In a survey of multidisciplinary nephrology care team members, Thumfart et al (56) found respondents identified a need for increased PPC resources, but disagreed about which patients should routinely receive subspecialty PPC. Both studies reinforce the need for integration of primary and subspecialty PPC in pediatric nephrology, but highlight that nephrologists, as stakeholders, may be unsure how best to meet this need.…”

Pediatric palliative care through the eyes of healthcare professionals, parents and communities: a narrative review

“…Studies from developed countries revealed that despite the adequate knowledge of PPC principles among pediatric professionals, there is confusion of PPC with hospice care or end-of-life care (16,39,51,62,66). Moreover, the level of PPC knowledge and attitudes are inconsistent among different care domains in PPC.…”

Enabling flourishing: novel approaches in palliative medicine for children with advanced kidney disease

“…Integrating a PPC approach affords an opportunity to mitigate suffering and support flourishing as envisioned by children with advanced kidney disease and their families [21 ▪ ]. To date within paediatric nephrology, PPC resources have been underutilized and the subsequent positive impacts of PPC therefore underrealized, making contributions to this work timely and influential [22–25]. In this review, we will highlight the need for palliative interventions within paediatric nephrology, explore recent research dedicated to centring the perspectives of children with advanced kidney disease and their families, describe palliative interventions recently developed in comparable disease states, and finally propose future directions for application of this work within paediatric nephrology…”