Quality Measures for End-Of-Life Care for Children with Cancer: A Modified Delphi Approach
pediatrics; end-of-life care; quality measures; modified Delphi
BACKGROUND: The quality of adult end-of-life (EOL) cancer care has benefited from quality measures, but corresponding pediatric measures are lacking. Therefore, the authors used a validated expert panel method to recommend EOL quality measures for pediatric oncology. METHODS: The authors used the modified Delphi method to assess potential quality measures. Panelists were selected on the basis of professional organization nominations and expert qualifications. Pediatric and adult oncology, pediatric palliative care, social work, nursing, and hospice were represented. The authors provided the panel with a literature review on 20 proposed measures derived from adult measures and bereaved family interviews. The panel first scored the importance of each measure on a 9-point scale and then discussed the measures via a conference call. The panel then rescored the measures. According to a priori standards, measures with median scores ≥ 7 with at least 7 of 9 experts ranking it as ≥4 were endorsed. RESULTS: The 16 endorsed measures included measures related to avoidance of medically intense care (eg, intensive care unit death and intubation in the last 14 days of life), death location (eg, death in the preferred location), hospital policies/programs (eg, the removal of visitor restrictions at EOL and the presence of a bereavement program), and supportive care services (eg, pediatric palliative care involvement and sibling needs assessment). Unendorsed measures included avoidance of chemotherapy at EOL and home death. CONCLUSIONS: Expert panel-endorsed quality measures have been developed for EOL care in pediatric oncology. The measures need validation with bereaved families and further refinement before they are ready for real-world application as a tool for standardizing EOL care in pediatric oncology. LAY SUMMARY: Quality measures for end-of-life care for children with cancer lag behind adult quality measures. Therefore, the authors have conducted an expert panel to develop an endorsed list of quality measures for end-of-life care for children with cancer. The 16 endorsed measures include measures related to avoidance of medically intense care (eg, intensive care unit death and intubation in the last 14 days of life), location of death (eg, death in the preferred location), hospital policies/programs (eg, the removal of visitor restrictions at the end of life and the presence of a bereavement program), and supportive care services (eg, pediatric palliative care involvement and sibling needs assessment).
Johnston EE; Martinez I; Wolfe J; Asch SM
Cancer
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1002/cncr.33546" target="_blank" rel="noreferrer noopener">10.1002/cncr.33546</a>
Development of Primary Palliative Care End-of-Life Quality Measures: A Modified Delphi Process
Delphi Study; Quality Measures
Children with complex chronic conditions (CCCs) and their families deserve high-quality pediatric palliative care (PPC) throughout their illness trajectory, including at end of life (EOL). Standard EOL quality measures (QM) have only recently been proposed, require surveys and/or manual chart review, and focus on children with cancer. Therefore, we aimed to develop expert-endorsed, hospital-based, primary PPC quality measures for EOL care for all children with CCCs that could be automatically abstracted from the electronic health record (EHR).We followed a modified Delphi approach for expert opinion gathering, including: (1) a comprehensive literature review of existing adult and pediatric measures (\textgreater200 measures); (2) formation of a multidisciplinary expert panel (n = 9); (3) development of a list of candidate measures (20 measures); (4) national survey to assess each QM’s importance and abstraction feasibility and propose new measures (respondents = 95); and (5) final expert panel endorsement.Seventeen EHR-abstractable QM were endorsed in 5 domains: (1) health care utilization: 4 measures (eg, \textless2 emergency department visits in the last 30 days of life); (2) interprofessional services: 4 measures (eg, PPC in the last 30 days of life); (3) medical intensity: 5 measures (eg, death outside the ICU); (4) symptom management: 2 measures (eg, documented pain score within 24 hours of admission); and (5) communication: 2 measures (eg, code status documentation).This study developed a list of EHR-abstractable, hospital-based primary PPC EOL QM, providing a foundation for quality improvement initiatives and further measure development in the future.
Bogetz JF; Johnston EE; Thienprayoon R; Patneaude A; Ananth P; Rosenberg AR; Workgroup Cambia Advisory
Pediatrics
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1542/peds.2022-058241" target="_blank" rel="noreferrer noopener">10.1542/peds.2022-058241</a>
Evaluation of a Quality Improvement Intervention to Improve Pediatric Palliative Care Consultation Processes
psychosocial; pediatrics; palliative care; Covid-19; interdisciplinary; quality improvement; Pdsa; quality measures
BACKGROUND: A critical aspect of pediatric palliative care consultations is the assessment and documentation of patient and family needs. While these assessments usually include a focus on physical pain, there is less standardization of assessments of other physical symptoms and psychosocial, emotional, or spiritual needs. AIMS: To improve the breadth of assessment of psychosocial and emotional needs, screen for symptoms other than pain among pediatric patients utilizing palliative care services, and to increase documentation of assessment data from 30%-40% to 80% through practice changes implemented in 2 Plan-Do-Study-Act (PDSA) cycles. METHODS: This quality improvement project involved implementing provider education and adapting the palliative care consultation template in the electronic health record to improve breadth and consistency of assessment and documentation during consultations by the interdisciplinary pediatric palliative care team. Two PDSA cycles were performed. Chi squared tests and statistical control charts were used for data analysis. RESULTS: There was statistically significant improvement in the inclusion of documentation of a pediatric palliative care social work note from baseline (32%) to Cycle 2 (57%). Physical symptom screening declined slightly, but not significantly (p = .32) and socio-emotional discussions also declined but not significantly (p = .05). CONCLUSIONS: Screening for physical symptoms and discussions with patients and families about psychosocial/emotional needs during the initial palliative care consultations are extremely important in providing effective, holistic, patient-centered care. There is a need for development of pediatric-centric guidelines and quality measures to evaluate pediatric palliative care programs; further research is indicated to determine methods for evaluating compliance with these guidelines.
Stoyell JF; Jordan M; Derouin A; Thompson J; Gall S; Jooste KR; Keskinyan VS; Lakis KR; Lee YA; Docherty S
American Journal of Hospital and Palliative Care
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/10499091211026675" target="_blank" rel="noreferrer noopener">10.1177/10499091211026675</a>