A survey-based study to evaluate a specialized myeloproliferative neoplasm program from the patient and care partner perspective

Taylor Nye, Verna Cheung, Cristina Emanuele, Sagar Kothari, Jaime O. Claudio, Marta B. Davidson, Hassan Sibai, Aniket Bankar, Vikas Gupta, Dawn Maze

Abstract


Background: Myeloproliferative neoplasms (MPN) including essential thrombocythemia (ET), polycythemia vera (PV), and myelofibrosis (MF) are a group of chronic bone marrow malignancies. The incidence rate of MPNs in Canada is 2.71 cases per 100,000 person-years, highlighting the rarity of these conditions (Heppner et al., 2019). To support this unique patient population, a specialized MPN Program was established at the Princess Margaret (PM) Cancer Centre in 2014. Marking 10 years since the program’s inception, a formal survey-based evaluation was conducted.

Purpose: To evaluate key components of the PM MPN Program from the patient and care partner (CP) perspective, in order to identify areas for program improvement and future direction. 

Methods: Patients with MPN (N = 77) and their CPs (N = 33) completed a survey exploring key areas of the program, including symptom assessment, understanding of diagnosis, coping and support, clinical nurse specialist (CNS) involvement, experience with shared care, and overall satisfaction with the program. Participation in the study was voluntary and anonymous.

Results and Conclusions: Overall satisfaction in the program was ranked highly by both patients and their CPs. The current care delivery model, utilizing a shared care approach along with CNSs, has been well received. With regard to patient symptoms, fatigue is the most pervasive. In terms of MPN education, discussions surrounding prognosis can be complex and require thoughtful attention. Finally, targeted support for CPs and young patients with MPN will be areas for future consideration. 

Keywords: clinical nurse specialist, program evaluation, care partner, experiences

https://doi.org/10.5737/23688076362350


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References


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