Disease and treatment burden in patients with leukemia: family members/partner perspective

Esther Natalie Oliva^1*Tatyana I Ionova²Samantha Nier³Zack Pemberton-Whiteley^3,4Nick York⁵Denis Costello⁶Sam Salek⁷

• ¹U.O.C. di Ematologia, Grande Ospedale Metropolitano Bianchi Melacrino Morelli, Reggio Calabria, Italy
• ²Saint Petersburg State University Hospital, Saint Petersburg, Russia
• ³Acute Leukemia Advocates Network (ALAN), Leukemia Patient Advocates Foundation, Bern, Bern, Switzerland
• ⁴Novartis (Switzerland), Basel, Switzerland
• ⁵CLL Advocates Network, Leukemia Patient Advocates Foundation, Bern, Bern, Switzerland
• ⁶CML Advocates Network, Bern, Switzerland
• ⁷School of Life and Medical Sciences, University of Hertfordshire, Hatfield, Hertfordshire, United Kingdom

Background: Leukaemia patients require comprehensive care, including treatment, hospital visits, and family support. An awareness of the impact of leukaemia on family members is crucial. The Acute Leukemia Advocates Network, Chronic Lymphoid Leukemia (CLL) Advocates Network, and Chronic Myeloid Leukemia (CML) Advocates Network assessed the impact of leukaemia on patients and their families.Methods: A global anonymous online study ran from 18/09/21 to 07/01/2022, targeting leukaemia patients and their family members/partners. Demographics information, disease characteristics, treatment, and family members' experiences of caring for a relative with blood cancer were collected. Family members/partner assessed the disease impact on patients using the Hematological Malignancy-Patient Reported Outcome measure (HM-PRO) Part-A.Results: 571 family members/partners (70.9% female, aged 55 years) responded. They represented patients with CML (32.0%), CLL (26.3%), acute myeloid leukaemia (19.3%) acute lymphoblastic leukaemia (17.5%), and other leukaemias (4.9%). The majority (89.1%) lived with the patient, and 69.7% accompanied them to clinics. Daily support included household chores (60%), shopping (51.5%), transportation (37.1%), finances (28.9%), personal care (23.3%) and childcare (16.8%). About one-third (29.6%) felt that the diagnosis was insensitively conveyed and 81.3% sought prognosis information. Approximately 64% searched for alternative treatments. Approximately 40% Formatted: English (United Kingdom) Formatted: English (United Kingdom) Formatted: English (United Kingdom) of family members/partners (prevalently sons/daughters) expressed an impact on general quality of life, particularly on emotional behaviour and eating/drinking habits. The impact was greatest in family members representing patients aged <18 years with ALL and AML compared to CLL and CML.The burden on leukaemia patients' family members is significant but often overlooked.1 Deleted: is Deleted: However, less attention is given to the burden on families and caregivers(6-8).