Patient-driven research: Initial results from a prospective health-related quality of life study performed at the request of patients living with hairy cell leukemia.

A diagnosis of leukemia can have a profound effect on patients' health-related quality of life (HRQoL), however this has not been measured prospectively in patients with hairy cell leukemia (HCL). At the request of patients living with HCL who had identified this gap in knowledge about the disease, we conducted a longitudinal study of HRQoL among patients enrolled in the HCL Patient Data Registry (PDR). From September 1, 2018 to September 1, 2020, 165 patients were enrolled in the study and completed the baseline survey. The Functional Assessment of Cancer Therapy - Leukemia (FACT-Leu) was used to measure patients' HRQoL. Results show that newly diagnosed HCL patients reported the lowest HRQoL, followed by patients in relapse and those on "watch and wait." Factors associated with higher (better) FACT-Leu total scores in the multivariable analysis included older age, higher social support, and greater physical activity. These same factors were associated with lower levels of fatigue. In rare diseases where it is difficult to perform large prospective studies, patient/researcher collaborations are critical for the identification of studies that are of importance to patients and their families in order to maximize the benefits of the research and improve the lives of patients living with HCL.

Authentic caring occasions for patients in hairy cell leukemia clinical trials.

BACKGROUND: Rare diseases present challenges for patients, healthcare providers, and researchers. Rare disease communities exist for collaboration, dissemination of information, and to promote support for all community members. Patients with a rare disease desire to be supported through a rare disease community. Hairy cell leukemia (HCL) is a rare adult B-cell lymphocytic cancer that currently has no cure. OBJECTIVES: Patients with relapsed or refractory HCL may need to consider participation in a clinical trial. The research nurse can initiate a planned caring occasion based on Watson's Theory of Human Caring. The purpose of the planned caring occasion for patients with HCL in clinical trials is to establish authentic intentional caring encounters between the research nurse and patients and meaningful caring encounters between patients. OBSERVATIONS: Relapsed or refractory patients enrolled in an HCL clinical trial identify the trial as a microcommunity and the research nurse as an advocate and liaison. Patients seek support, empowerment, and the opportunity to connect with other patients with HCL. The planned caring occasion has the potential to provide a healing environment and facilitate shared experiences of living with HCL. The potential outcome for patients is strengthened holistic wellness.

Nursing student anxiety as a context for teaching/learning.

Experiential learning in nursing programs includes role-play, simulation, and live clinical experiences. Anxiety levels can heighten during experiential learning as students attempt to gain psychomotor skills and transfer knowledge into critical thinking. Nursing students may experience anxiety that can interfere with learning and critical thinking. However, the presence of student anxiety can be used to initiate a purposeful caring transaction between nursing faculty and student. The caring transaction is a way for faculty to model both caring and presence, create experiential learning of caring by students, and lead students to initiate self-care interventions to manage anxiety through the nursing program and beyond. Multiple learning outcomes can be achieved as the students integrate faculty-modeled concepts of caring and presence into simulated or real clinical situations, reduce or manage their anxiety, and improve their clinical judgment and critical thinking skills.