The Cutaneous Lymphoma International Nurses Network (CLINN) hosted its inaugural webinar on June 6, 2023. This milestone event did not come to fruition without a back story, of course. Four dedicated cutaneous oncology nursing professionals, along with Susan Thornton, CEO of the Cutaneous Lymphoma Foundation, clearly understood there was a scarcity of nursing centered resources and networking opportunities for our colleagues caring for this challenging disease, both within the United States and across the globe.
The timeline for the CLINN commenced around 2016 when Australian Lymphoma Nurse Practitioner, Odette Buelens, reached out to U.S. counterparts Marianne Tawa, RN, MSN, NP, and Sue McCann, MSN, RN, DNC, looking to connect for advice on a difficult CTCL case. She wanted to examine alternative therapeutic approaches to wound care, which are unique to the advanced tumors of cutaneous T-cell lymphoma (CTCL). It was at that moment that we all understood we needed to expand our reach.
In 2017, Marianne, Sue, and Susan Thornton designed and participated in a joint case-based educational program with British Dermatology and Oncology Nurses at the EORTC meeting in London. The thrill of sharing best practice for cutaneous lymphoma (CL) patients was a unifying theme. Since that time, the CLINN initial core of Marianne, Odette, and Sue has expanded with the addition of Claire Lusted, Advanced Nurse Practitioner from the United Kingdom. The group met virtually throughout the pandemic, culminating with a live webinar on June 6th.
In the summer of 2022, the CLINN group set out to develop a survey aimed at gathering data on clinical practice for nurses caring for cutaneous lymphoma patients, and to further understand gaps in education across the globe. Identifying nursing colleagues in CL practice proved to be a challenge, as many practice within their own individual disease centers, community or private practices, inpatient, phototherapy, photopheresis, radiation and research settings.
With the generous assistance of the Cutaneous Lymphoma Foundation, physicians, pharma partners, and word of mouth, we were able to create a mailing list for the survey. The survey landed in nurses’ inboxes in the fall of 2022.
We were thrilled to have 128 total respondents from the USA, UK, Australia, Switzerland, and Canada. Practice settings ranged from Dermatology/Hematology/Multi-Disciplinary, urban-academic to rural and home-based care. 25% of the respondents returned to participate in the live webinar.
Key insights derived from the survey were:
- Nurses desire to connect within an organized clinical community
- Nurses perceive limited education resources
- Nurses want to leverage and share skills, knowledge, and experience within the treating community
Key themes generated from the survey are that nurses are interested in expanding:
- essential disease-related education (pathogenesis/ therapies, clinical trials)
- acute and chronic nursing care
- symptom management
- skin and wound care
- patient education
- quality of life measurements
Additionally, they expressed a strong interest in creating an avenue for networking and engagement via access to in-person and online educational programming.
After careful review of the survey responses and feedback from key stakeholders, the CLINN priorities fell nicely into place. The consensus was to prioritize two projects:
- Creation of a repository for CL nursing education to include a collection of nursing guidelines/platform for evidence-based nursing literature and Powerpoints on disease state, quick reference guides on symptom management, and a forum for Q&A and problem solving.
- Wound care education package tailored to cutaneous lymphoma patient population, to address what literature is available, what an online wound care educational program looks like, and challenges inherent to the development of international guidelines.
The CLINN is endeavoring to collaborate with nursing organizations within the U.S. and internationally to promote this project. We have created an innovative “home base” via a web-based platform where nurses can connect, learn from their colleagues, and ultimately improve care for the cutaneous lymphoma patient community.
Download summary of CLINN history