Developing a "toolkit" to measure implementation of concurrent palliative care in rural community cancer centers.

Lisa Zubkoff,Gisella A Mancarella,Marie A Bakitas,Imatullah Akyar,Keith M Swetz,Maria Pisu,J Nicholas Dionne-Odom,Margaret Murray Sullivan,Dilip Babu,Lucy Gansauer,Andres Azuero,Tasha Smith

doi:10.1017/s1478951517000323

Abstract

Despite national guidelines recommending early concurrent palliative care for individuals newly diagnosed with metastatic cancer, few community cancer centers, especially those in underserved rural areas do so. We are implementing an early concurrent palliative care model, ENABLE (Educate, Nurture, Advise, Before Life Ends) in four, rural-serving community cancer centers. Our objective was to develop a "toolkit" to assist community cancer centers that wish to integrate early palliative care for patients with newly diagnosed advanced cancer and their family caregivers. Guided by the RE-AIM (Reach, Effectiveness-Adoption, Implementation, Maintenance) framework, we undertook an instrument-development process based on the literature, expert and site stakeholder review and feedback, and pilot testing during site visits. We developed four instruments to measure ENABLE implementation: (1) the ENABLE RE-AIM Self-Assessment Tool to assess reach, adoption, implementation, and maintenance; (2) the ENABLE General Organizational Index to assess institutional implementation; (3) an Implementation Costs Tool; and (4) an Oncology Clinicians' Perceptions of Early Concurrent Oncology Palliative Care survey. We developed four measures to determine early palliative care implementation. These measures have been pilot-tested, and will be integrated into a comprehensive "toolkit" to assist community cancer centers to measure implementation outcomes. We describe the lessons learned and recommend strategies for promoting long-term program sustainability.

Highlights

We developed four instruments to measure ENABLE implementation: (1) the ENABLE RE-AIM Self-Assessment Tool to assess reach, adoption, implementation, and maintenance; (2) the ENABLE General Organizational Index to assess institutional implementation; (3) an Implementation Costs Tool; and (4) an Oncology Clinicians’ Perceptions of Early Concurrent Oncology Palliative Care survey
Significance of results: We developed four measures to determine early palliative care implementation
This tool was developed to collect information from sites to evaluate overall implementation costs. No such tool existed for early concurrent oncology palliative care prior to our work, so we developed an ENABLE-specific tool to capture information related to time spent by the site-specific staff to implement the program, and to participate in activities led by the study coordinating center, as well as other administrative costs

Summary

Introduction

Despite professional recommendations and a growing evidence base, the level of integration of early concurrent oncologic palliative care in advanced cancer remains poor. This is true even in health systems with established palliative care teams (Wentlandt et al, 2012; Smith et al, 2012). ENABLE (Educate, Nurture, Advise, Before Life Ends) (Bakitas et al, 2009a; 2009b; Dionne-Odom et al, 2016a; 2016b; 2015) is an early concurrent oncology palliative care telehealth model that was designed to be seamlessly integrated with usual oncology care at the time of an advanced cancer diagnosis, especially for rural-dwelling patients.

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Discussion

Conclusion