Haematological malignancy: are we measuring what is important to patients? A systematic review of quality of life instruments

The wide range of health‐related quality‐of‐life (HRQoL) instruments used in haematology makes it challenging for haematologists and other care team members in practice to select, use and understand the scoring system and finally interpret the results. The main objectives of this study were to: (a) provide a comprehensive list of quality‐of‐life issues important to patients suffering from haematological malignancies, identified through the literature; (b) provide a list of health‐related quality‐of‐life (HRQoL) instruments used in haematological malignancies in both daily clinical practice and research; and (c) evaluate the relevance and comprehensibility of the identified instruments in haematological malignancies. Systematic literature review of two databases, followed by addition of articles by manual searching, was carried out. The articles focusing on the primary studies, which have used semi‐structured/structured interviews or surveys to identify issues important to HM patients, and other studies describing the results of testing measurement properties, such as reliability, validity and responsiveness of the instruments currently used to evaluate the HRQoL in different HMs, were included. Fifty‐seven studies reported development and validation of 30 HRQoL instruments, which have been used in haematology. Twenty‐four studies were identified using qualitative methods to report HRQoL issues and symptoms from a patient's perspective. No identified instrument captured all the issues identified from the qualitative studies. None of the instruments reviewed appeared to have been developed for use in clinical practice and specifically for patients with HM, except MyPOS. Furthermore, measurement properties were established, largely, in clinical trial scenarios. There is a need for development of a new HRQoL instrument entirely based on involvement of patients with haematological malignancies.