Abstract CN51
Background
Myeloproliferative neoplasms (MPN) are rare chronic haematological malignancies including polycythaemia vera (PV), essential thrombocythemia (ET), and myelofibrosis (MF). Given the chronic nature of these neoplasms, health professionals should encourage patients living with MPN to engage in self-care behaviours, including self-care maintenance, self-care monitoring, and self-care management. This study aimed to develop a self-report questionnaire measuring self-care behaviours according to the Middle-Range Theory of Self-Care of Chronic Illness.
Methods
This is a scale development project initiated by the Italian association of MPN patients (AIPAMM). We conducted two focus groups with 10 MPN patients and a literature search to identify the most recommended self-care behaviours. Then, we developed a conceptual model of self-care, including different dimensions for self-care maintenance, self-care monitoring, and self-care management. MPN experts, including 10 international haematologists and 10 clinical nurses, as well as 15 patients advocates were invited to evaluate whether the items were relevant and clear. The Content Validity Index (CVI) was calculated.
Results
Overall, 31 items yielded good content validity (CVI = 0.93). Self-care maintenance was expressed with items about adherence (e.g., taking medications), healthy lifestyle (e.g., drinking enough water), prevention (e.g., avoid smoking), and empowerment (e.g., keeping up-to-date). Self-care monitoring was expressed with items about screening (e.g., getting blood tests), symptom monitoring (e.g., monitoring the onset of new symptoms), and monitoring clinical parameters (e.g., checking body weight). Self-care management was expressed with items that relate to provider-directed behaviours (e.g., contacting healthcare providers), and spontaneous behaviours (e.g., taking practical and effective measures).
Conclusions
We developed a new tool measuring self-care in MPN patients, the Self-Care in MyeloProliferative Neoplasms Inventory (SC-MPNI), which showed good face and content validity. Future research could test its psychometric properties and assess self-care behaviours in patients living with MPN.
Clinical trial identification
Editorial acknowledgement
Legal entity responsible for the study
The authors.
Funding
Has not received any funding.
Disclosure
All authors have declared no conflicts of interest.