Feudtner Laboratory Resources

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Below are resources provided by the Feudtner Lab.

Children with advanced cancer are often not referred to palliative or hospice care before they die or are only referred close to the time of death. The Confronting Adversity through Regoaling Engagement (CARE) consisted of four stages:

Stage 1

We observed clinical team meetings and conducted interviews with individual interprofessional team members at the Children’s Hospital of Philadelphia (CHOP) to characterize team discussions about patients appropriate for initiation of palliative care in three oncology subspecialties (Bone Marrow Transplant (BMT), Solid Tumor and Neuro-Oncology) and to assess interprofessional team member perceptions of initiation of palliative care and subspeciality palliative care consultations.

References:

Szymczak JE, Schall T, Hill DL, Walter JK, Parikh S, DiDomenico C, Feudtner C. Pediatric Oncology Providers’ Perceptions of a Palliative Care Service: The Influence of Emotional Esteem and Emotional Labor. J Pain Symptom Manage. 2018 May;55(5):1260-1268. PMID: 29425881

Stage 2

We partnered with interprofessional team members to modify and tailor team-specific interventions for the three pediatric oncology teams (BMT, Solid Tumor and Neuro-Oncology).

References:

Hill DL, Walter JK, Casas JA, DiDomenico C, Szymczak JE, Feudtner C. The codesign of an interdisciplinary team-based intervention regarding initiating palliative care in pediatric oncology. Support Care Cancer. 2018 Sep;26(9):3249-3256. PMID: 29627863

CARE Codesign Materials

Stage  3

We assessed the feasibility of implementing the team-based interventions developed in the codesign process to: a) increase understanding of the scope of palliative care and variation in perceived timing appropriate for initiation of subspeciality consultation, b) how to manage clinical uncertainty regarding prognosis, c) best techniques for team communication and collaboration in challenging cases in which it is not clear which care options to offer patients and families, and d)best practices in discussing subspecialty palliative care consultation with families.

Stage 4

We conducted post-intervention interviews with codesign and intervention participants to assess interprofessional team member perceptions of initiation of palliative care and subspeciality palliative care consultations.

The Feudtner Lab has an abiding commitment to help improve the lives of children with complex chronic conditions (CCCs) and their families.

For certain research studies, we have needed to identify children with CCCs in large datasets that contain lists of diagnoses for each child.

SAS, Stata, and R Statistical Packages for CCC Version 2

Access the SAS Stata, and R statistical packages that will essentially examine all the diagnoses listed for a child and specify whether or not the child has any type of CCC diagnosis and then what specific category or categories of CCC diagnoses are listed.

Access SAS, Stata, and R statistical packages for CCC Version 2.

References

Feudtner C, Christakis DA, Connell FA. Pediatric deaths attributable tocomplex chronic conditions: a population-based study of Washington State,1980-1997. Pediatrics. 2000 Jul;106(1 Pt 2):205-9. PubMed PMID: 10888693.

Feudtner C, Hays RM, Haynes G, Geyer JR, Neff JM, Koepsell TD. Deaths attributed to pediatric complex chronic conditions: national trends and implications for supportive care services. Pediatrics. 2001 Jun;107(6):E99. PubMed PMID: 11389297.

Feudtner C, Feinstein JA, Zhong W, Hall M, Dai D. Pediatric complex chronic conditions classification system version 2: updated for ICD-10 and complexmedical technology dependence and transplantation. BMC Pediatr. 2014 Aug 8;14:199. doi: 10.1186/1471-2431-14-199. PubMed PMID: 25102958

Feinstein JA, Russell S, Dewitt PE, Feudtner C, Dai D, Bennett TD. R Package for Pediatric Complex Chronic Condition Classification. JAMA Pediatr. 2018 Jun 1;172(6):596-598. PMID: 29710063

Serious pediatric illness places great stress on families. Parents who learn coping skills may better manage these stressors. We developed a brief, flexible stress management intervention that could be made available to parents of children with serious illness at pediatric hospitals with minimal staff training or time commitment. In a pilot test, the majority of parents of children hospitalized with serious illness used the kit enthusiastically. Future work will assess the feasibility of having hospital staff (e.g. social workers, psychologists, or nurses) implement the Coping Kit in specific units of the hospital and determine whether the Coping Kit has a measurable impact in improving parent psychosocial state, stress, and parenting self-efficacy.

Coping Kit

Coping Kit Manual

Pediatric palliative care is intended to optimize the quality of life, promote healing, and provide comfort for patients and their families. Learn more about the network.

The Pediatric Palliative Care Research Network (PPCRN) is currently conducting the SHAred Data and REsearch (SHARE) study, a prospective cohort study being conducted with parents of children with serious illness at seven children’s hospitals across the United States. Please see the infographic below for more information.

SHARE Infographic

Clinicians deciding whether to refer a patient or family to specialty palliative care report facing high levels of uncertainty. Most research on medical uncertainty has focused on prognostic uncertainty.

We conducted a phenomenological qualitative analysis of “uncertainty” as experienced and described by interdisciplinary pediatric oncology team members regarding the introduction of palliative care. We found that clinicians caring for patients with advanced cancer confront seven broad categories of uncertainty: prognostic, informational, individual, communication, relational, collegial, and inter-institutional. Each of these kinds of uncertainty can contribute to delays in referring patients to palliative care. To manage these forms of uncertainty, providers need to develop strategies and techniques to handle professionally challenging situations, communicate bad news, manage difficult interactions with families and colleagues, and collaborate with other organizations.

For more information, please see the infographic or read the full paper.

Pediatric palliative and hospice care in the home setting (PPHC@Home) plays a critical role in the support of many children with serious illnesses and their families. Providing consistent, high-quality care that meets children’s and families’ most important needs and priorities requires the systematic measurement of care, although no previous family-reported experience instruments exist to specifically evaluate PPHC@Home in the U.S. Using a multi-method, multi-stakeholder phased approach, we have developed, and are currently testing, a measure of families’ experiences with PPHC@Home.

Phase 1

We first explored parents’ priorities for PPHC@Home using a discrete choice experiment with parents whose children have received PPHC@Home. We found that, in our sample of participants, the highest-rated domains included Physical aspects of care: Symptom management, Psychological/emotional aspects of care for the child, and Care coordination. In additional exploratory analyses, parents who had other children rated the Psychological/emotional aspects of care for the sibling(s) domain significantly higher than parents who did not have other children. Additionally, bereaved parents in our study rated the Caregiver support at the end of life domain significantly higher than parents who were currently caring for their child. No other significant differences in parents’ rating of the domains were observed.

Paper:

Boyden JY, Ersek M, Deatrick JA, Widger K, LaRagione G, Lord B, Feudtner C. What Do Parents Value Regarding Pediatric Palliative and Hospice Care in the Home Setting? J Pain Symptom Manage. 2021 Jan;61(1):12-23. Epub 2020 Jul 31. PMID: 32745574.

Infographic: PPHC@Home Infographic

Funding:

This research project was supported by the National Institute of Nursing Research of the National Institutes of Health under Award Number F31NR017554. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. Additional research funding was provided by the University of Pennsylvania School of Nursing Office of Nursing Research Student Research Grant, the Independence Blue Cross Foundation Nurses for Tomorrow Scholars Program, and the Sawtooth Software Academic Grant.

Phase 2

We next followed a phased instrument development process, which included item selection, item prioritization and reduction, and cognitive interviewing. Starting with a pool of 100 items derived from existing outcomes instruments in pediatric palliative care, standards of practice, and quality guidelines, we developed the EXPERIENCE@Home (Experiences of Palliative and Hospice Care for Children and Caregivers at Home) Questionnaire, which contained 22 high-priority items, as rated and evaluated by palliative care providers, researchers, parent advocates, bereaved parents, and parents currently caring for their child. These items span across domains and include “The care team treats my child’s physical symptoms so that my child has as good a quality of life as possible”, “I have regular access to on-call services from our care team”, and “The nurses have the knowledge, skills, and experience to support my child’s palliative or hospice care at home.”

Paper:

Boyden JY, Feudtner C, Deatrick JA, Widger K, LaRagione G, Lord B, Ersek M. Developing a family-reported measure of experiences with home-based pediatric palliative and hospice care: a multi-method, multi-stakeholder approach. BMC Palliat Care. 2021 Jan 14;20(1):17. PMID: 33446192; PMCID: PMC7809872.

Funding:

This research project was supported by the National Institute of Nursing Research of the National Institutes of Health under Award Number F31NR017554. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. Additional research funding was provided by the University of Pennsylvania School of Nursing Office of Nursing Research Student Research Grant, the Independence Blue Cross Foundation Nurses for Tomorrow Scholars Program, and the Sawtooth Software Academic Grant.

Phase 3

Our current study aims to evaluate the validity, reliability, acceptability, feasibility, and clinical utility of the EXPERIENCE@Home Questionnaire from the perspective of parents and pediatric palliative and hospice care providers. This study, funded by the National Institute of Nursing Research (Award Number F32NR019517), is in the active enrollment phase and will be completed by September 2022.