Measurement of the major ignored burden of multiple myeloma, pernicious anaemia and of other haematological conditions on partners and family members: A cross‐sectional study

Shah, R., Finlay, A. Y. ORCID: https://orcid.org/0000-0003-2143-1646, Ali, F. M., Allen, H., Nixon, S. J., Nixon, M., Otwombe, K., Ingram, J. R. ORCID: https://orcid.org/0000-0002-5257-1142 and Salek, M. S. 2024. Measurement of the major ignored burden of multiple myeloma, pernicious anaemia and of other haematological conditions on partners and family members: A cross‐sectional study. European Journal of Haematology 113 (1) , pp. 117-126. 10.1111/ejh.14206

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Abstract

Background: Having a haematological condition can adversely affect the quality of life (QoL) of family members/partners of patients. It is important to measure this often ignored burden in order to implement appropriate supportive interventions. Objective: To measure current impact of haematological conditions on the QoL of family members/partners of patients, using the Family Reported Outcome Measure‐16 (FROM‐16). Methods: A cross‐sectional study, recruited online through patient support groups, involved UK family members/partners of people with haematological conditions completing the FROM‐16. Results: 183 family members/partners (mean age = 60.5 years, SD = 13.2; females = 62.8%) of patients (mean age = 64.1, SD = 12.8; females = 46.4%) with 12 haematological conditions completed the FROM‐16. The FROM‐16 mean total score was 14.0 (SD = 7.2), meaning ‘a moderate effect on QoL’. The mean FROM‐16 scores of family members of people with multiple myeloma (mean = 15.8, SD = 6.3, n = 99) and other haematological malignancies (mean = 13.9, SD = 7.8, n = 29) were higher than of people with pernicious anaemia (mean = 10.7, SD = 7.5, n = 47) and other non‐malignant conditions (mean = 11, SD = 7.4, n = 56, p < .01). Over one third (36.1%, n = 183) of family members experienced a ‘very large effect’ (FROM‐16 score>16) on their quality of life. Conclusions: Haematological conditions, in particular those of malignant type, impact the QoL of family members/partners of patients. Healthcare professionals can now, using FROM‐16, identify those most affected and should consider how to provide appropriate holistic support within routine practice.

Item Type:	Article
Date Type:	Publication
Status:	Published
Schools:	Medicine
Additional Information:	License information from Publisher: LICENSE 1: URL: http://creativecommons.org/licenses/by/4.0/
Publisher:	Wiley
ISSN:	0902-4441
Date of First Compliant Deposit:	8 April 2024
Date of Acceptance:	12 February 2024
Last Modified:	04 Jul 2024 14:00
URI:	https://orca.cardiff.ac.uk/id/eprint/167797

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