The Pediatric Palliative Improvement Network: A national Healthcare Learning Collaborative

Thienprayoon, Rachel; Jones, Emma; Humphrey, Lisa; Ragsdale, Lindsay; Williams, Conrad; Klick, Jeffrey

doi:10.1016/j.jpainsymman.2021.06.020

Cited by 9 publications

(5 citation statements)

References 33 publications

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“…However, the referral practices also depend on personal attitudes and motivation of the referrers from the medical specialties towards SPPC. Furthermore, the referrer's perception of evidence supporting SPPC can be considered as a contextual factor influencing referral practices [5] and it is well recognised that compelling scientific evidence on the effectiveness of SPPC is scarce [6][7][8].…”

Section: Introductionmentioning

confidence: 99%

Specialised Paediatric PAlliativE CaRe: Assessing family, healthcare professionals and health system outcomes in a multi-site context of various care settings: SPhAERA study protocol

Zimmermann

Simon²,

Scheinemann³

et al. 2022

BMC Palliat Care

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Background The number of children and adolescents living with life-limiting conditions and potentially in need for specialised paediatric palliative care (SPPC) is rising. Ideally, a specialised multiprofessional team responds to the complex healthcare needs of children and their families. The questions of, how SPPC is beneficial, for whom, and under what circumstances, remain largely unanswered in the current literature. This study’s overall target is to evaluate the effectiveness of a SPPC programme in Switzerland with respect to its potential to improve patient-, family-, health professional-, and healthcare-related outcomes. Methods This comparative effectiveness study applies a quasi-experimental design exploring the effectiveness of SPPC as a complex intervention at one treatment site in comparison with routine care provided in a generalised PPC environment at three comparison sites. As the key goal of palliative care, quality of life - assessed at the level of the patient-, the family- and the healthcare professional - will be the main outcome of this comparative effectiveness research. Other clinical, service, and economic outcomes will include patient symptom severity and distress, parental grief processes, healthcare resource utilisation and costs, direct and indirect health-related expenditure, place of death, and introduction of SPPC. Data will be mainly collected through questionnaire surveys and chart analysis. Discussion The need for SPPC has been demonstrated through numerous epidemiological and observational studies. However, in a healthcare environment focused on curative treatment and struggling with limited resources, the lack of evidence contributes to a lack of acceptance and financing of SPPC which is a major barrier against its sustainability. This study will contribute to current knowledge by reporting individual and child level outcomes at the family level and by collecting detailed contextual information on healthcare provision. We hope that the results of this study can help guiding the expansion and sustainability of SPPC and improve the quality of care for children with life-limiting conditions and their families internationally. Trial registration Registered prospectively on ClinicalTrials.gov on January 22, 2020. NCT04236180 Protocol version Amendment 2, March 01, 2021.

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Section: Introductionmentioning

confidence: 99%

Specialised Paediatric PAlliativE CaRe: Assessing family, healthcare professionals and health system outcomes in a multi-site context of various care settings: SPhAERA study protocol

Zimmermann

Simon²,

Scheinemann³

et al. 2022

BMC Palliat Care

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“…Delivery modality is critical to promoting provider access to education. A recent study, conducted by the national Pediatric Palliative Improvement Network (PPIN), adopted a fully online format for education related to the standardization of guidelines for continuing education of healthcare providers interested in pediatric palliative care and improving patient outcomes following pain assessment through quality improvement (QI) [37]. Due to the COVID-19 pandemic, all 2020 conferences were transitioned to a virtual format.…”

Section: Blended Learningmentioning

confidence: 99%

“…Proposing CoP as an appropriate guiding framework for medical education, Cruess et al [38] noted the frst application of the theory in medicine in Parboosingh's work on physician communities of practice [39]. Since then, the CoP framework has been applied broadly in medical and health professions education, both to guide formal didactic education and continuing medical education [16,37,40,41].…”

Section: Guiding Frameworkmentioning

confidence: 99%

Increasing Access to Care: Designing a Blended Curriculum to Educate Adult Hospice Nurses in Caring for Pediatric Patients

McDonald,

Abdallah,

Lyons

et al. 2024

Nursing Forum

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Access to care for pediatric hospice patients is inhibited by a lack of providers specifically educated to care for pediatric patients. Education that seeks to address this gap in care must develop the specific knowledge and skills required to care for pediatric patients, and this education must also be delivered in a format that enables convenient access to providers. This article describes the development of an innovative blended curriculum to build upon the existing knowledge base and skill set required by experienced adult hospice care providers to expand care for pediatric patients. The article elucidates how the community of practice framework and Bloom’s taxonomy informed the blended curriculum leveraging both online, asynchronous modules and virtual, synchronous precepting sessions and also informed the selection of content, activities, and assessment methods aligned to requisite competencies and skills. It also details the identification of requisite competencies and skills and the next steps in piloting this intervention.

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“…Although networks vary in form, size, shape and scope, they commonly: foster collaboration between healthcare professionals, patients and families, and researchers; connect people across geographic regions and clinical disciplines to share knowledge, resources, and best practices; drive goal‐directed actions toward a shared vision and mission; and provide systems for data sharing and knowledge dissemination. Participation in a learning health network can improve health outcomes 10‐15 …”

Section: Introductionmentioning

confidence: 99%

“…Participation in a learning health network can improve health outcomes. [10][11][12][13][14][15] The Cystic Fibrosis (CF) Care Center Network (CCN), accredited by the US CF Foundation (CFF), includes 286 programs that deliver care to nearly 40 000 patients. [16][17][18][19] Patient-level process and outcome measures are captured during all clinical encounters and entered into the CFF Patient Registry (CFFPR).…”

Section: Introductionmentioning

confidence: 99%

The Cystic Fibrosis Learning Network: A mixed methods evaluation of program goals, attributes, and impact

Citters

Buus‐Frank

King

et al. 2022

Learning Health Systems

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Introduction:The Cystic Fibrosis (CF) Foundation sponsored the design, pilot testing, and implementation of the CF Learning Network (CFLN) to explore how the Foundation's Care Center Network (CCN) could become a learning health system. Six years after the design, the Foundation commissioned a formative mixed methods evaluation of the CFLN to assess: CFLN participants' understanding of program goals, attributes, and perceptions of current and future impact.Methods: We performed semi-structured interviews with CFLN participants to identify perceived goals, attributes, and impact of the network. Following thematic analyses, we developed and distributed a survey to CFLN members and a matched sample of CCN programs to understand whether the themes were unique to the CFLN.Results: Interviews with 24 CFLN participants were conducted. Interviewees identified the primary CFLN goal as improving outcomes for people living with CF, with secondary goals of providing training in quality improvement (QI), creating a learning community, engaging all stakeholders in improvement, and spreading best practices to the CCN. Project management, use of data, common QI methods, and the learning community were seen as critical to success. Survey responses were collected from 103 CFLN members and 25 CCN members. The data revealed that CFLN respondents were more likely than CCN respondents to connect with other CF programs, routinely use data for QI, and engage patient and family partners in QI.Conclusions: Our study suggests that the CFLN provides value beyond that achieved by the CCN. Key questions remain about whether spread of the CFLN could improve outcomes for more people living with CF.

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The Pediatric Palliative Improvement Network: A national Healthcare Learning Collaborative

Cited by 9 publications

References 33 publications

Specialised Paediatric PAlliativE CaRe: Assessing family, healthcare professionals and health system outcomes in a multi-site context of various care settings: SPhAERA study protocol

Specialised Paediatric PAlliativE CaRe: Assessing family, healthcare professionals and health system outcomes in a multi-site context of various care settings: SPhAERA study protocol

Increasing Access to Care: Designing a Blended Curriculum to Educate Adult Hospice Nurses in Caring for Pediatric Patients

The Cystic Fibrosis Learning Network: A mixed methods evaluation of program goals, attributes, and impact

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