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

Abstract

AbstractBackgroundHaving 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.ObjectiveTo measure current impact of haematological conditions on the QoL of family members/partners of patients, using the Family Reported Outcome Measure‐16 (FROM‐16).MethodsA cross‐sectional study, recruited online through patient support groups, involved UK family members/partners of people with haematological conditions completing the FROM‐16.Results183 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.ConclusionsHaematological 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.