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Haematological malignancy: are we measuring what is important to patients? A systematic review of quality of life instruments. / Goswami, Pushpendra; Khatib, Yasmin; Salek, Sam.

In: European Journal of Haematology, Vol. 102, No. 4, 01.04.2019, p. 279-311.

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@article{f4bda18ee75a4b94bd23109913608deb,
title = "Haematological malignancy: are we measuring what is important to patients? A systematic review of quality of life instruments",
abstract = "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.",
keywords = "HRQoL, PRO, QoL, clinical practice, clinical research, haematological malignancy",
author = "Pushpendra Goswami and Yasmin Khatib and Sam Salek",
note = "{\textcopyright} 2018 The Authors. This is an open access article under the terms of the Creative Commons Attribution‐NonCommercial License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited and is not used for commercial purposes.",
year = "2019",
month = apr,
day = "1",
doi = "10.1111/ejh.13203",
language = "English",
volume = "102",
pages = "279--311",
journal = "European Journal of Haematology",
issn = "1600-0609",
publisher = "Wiley-Blackwell Publishing Ltd",
number = "4",

}

RIS

TY - JOUR

T1 - Haematological malignancy: are we measuring what is important to patients? A systematic review of quality of life instruments

AU - Goswami, Pushpendra

AU - Khatib, Yasmin

AU - Salek, Sam

N1 - © 2018 The Authors. This is an open access article under the terms of the Creative Commons Attribution‐NonCommercial License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited and is not used for commercial purposes.

PY - 2019/4/1

Y1 - 2019/4/1

N2 - 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.

AB - 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.

KW - HRQoL

KW - PRO

KW - QoL

KW - clinical practice

KW - clinical research

KW - haematological malignancy

UR - http://www.scopus.com/inward/record.url?scp=85061618860&partnerID=8YFLogxK

U2 - 10.1111/ejh.13203

DO - 10.1111/ejh.13203

M3 - Review article

VL - 102

SP - 279

EP - 311

JO - European Journal of Haematology

JF - European Journal of Haematology

SN - 1600-0609

IS - 4

ER -