The impact of classic Hodgkin lymphoma (cHL) on informal caregivers: Results from the cHL—Real-world observations from physicians, patients, and caregivers on the disease and its treatment (CONNECT) study.

Abstract

e24004 Background: The health and work productivity burden informal cHL patient (pt) caregivers face is unknown. As part of the US-based CONNECT study, we evaluated caregivers’ burden and role in treatment (tx) decisions by relation to the pt: spouse/partner (SP) vs other (parent, child, friend, other relative). Methods: The CONNECT caregiver survey was an IRB-approved online survey administered from Dec 2020-Mar 2021 to self-identified current or former adult cHL pt caregivers. Health-related quality of life (HRQoL, PROMIS-Global), work impact (WPAI), decision-making, tx selection, and physician communication were assessed. Statistical significance was at the 95% confidence level. Results: 209 caregivers (58% women; median age 47 yrs; 54% employed; 53% SP) completed the survey. At completion, 69% cared for pts diagnosed in the past 1-2 yrs; 48% of pts cared for had stage III/IV cHL and 58% were in remission/not receiving active tx. While caregiver HRQoL was similar to that of the general population on the PROMIS-Global, employed caregivers had work impairment (29%) from caregiving activities (Table) which was higher when the pt was on vs off tx. Caregiving began at pt symptom onset for more SP vs other caregivers (61 vs 27%), and after the pt’s first tx for more other vs SP caregivers (34 vs 5%). 88% of caregivers discussed tx options with the pt. Cure, caregivers’ top tx goal (49%), was rated higher by SP vs other caregivers (56 vs 42%). Tx decisions with the pt (54 vs 23%) and tx option discussions with the doctor (52 vs 28%) were more common for SP vs other caregivers. More SP vs other caregivers had extensive tx option discussions with the pt (88 vs 68%), said it was important the doctor discussed managing side effects (94 vs 84%), felt the doctor provided adequate information about side effects (91 vs 71%), and felt aligned with the pt’s tx goals (93 vs 79%). Caregivers noted COVID-19 impacts like limiting daily activities to reduce COVID-19 risks (72%). Conclusions: Although cHL pt caregivers reported good HRQoL, caregiving impacted their work productivity regardless of relation to the pt. Cure was caregivers’ top tx goal. SP vs other caregivers were more involved and earlier, reporting alignment with pt tx goals and decision-making.[Table: see text]

Patient preferences in the treatment of stage III/IV classic Hodgkin lymphoma: Results from the CONNECT cross‐sectional survey

“…Additionally, it is important to understand the relationships among patients, their caregivers and their physicians from all stakeholder viewpoints. Additional information on the CONNECT study caregiver and physician surveys is published separately 17–19 …”

“…The focus of this manuscript is the CONNECT patient survey. Results from the CONNECT physician 17,18 and caregiver 19 surveys have been published. The CONNECT patient survey was administered online from 30 December 2020 to 1 March 2021.…”