Symptom Distress and Quality of Life Among Middle-Age and Older Black Americans with Cancer and Their Caregivers

Background. Approximately 1 in 3 Black Americans will be diagnosed with cancer in their lifetime. Because cancer risk increases with age, middle-age and older Black Americans are more likely to be diagnosed with cancer than younger age groups. Cancer and medical interventions to treat the disease contribute to several symptoms that may cause distress (e.g., pain, fatigue and nausea) and influence quality of life (QOL). Individuals often manage symptoms with the help of family members or friends (i.e., caregivers), who may have health problems of their own. This may be particularly relevant for Black American caregivers, given the prevalence of chronic health conditions among Blacks in the United States. Few studies, however, have focused on the concurrent illness experiences of Black Americans with cancer and their caregivers. In this study, we examine independent and interdependent associations between symptom distress and QOL among Black American dyads following a cancer diagnosis.

Methods. We conducted secondary analysis of baseline data from three RCTs that enrolled Black Americans with breast, lung, colorectal or prostate cancers (i.e., patients) and their caregivers (N=124 dyads). We restricted our analysis to patients ages 50 and older. Symptom distress of each individual was assessed with 13 items from the Symptom Scale of the Risk for Distress Scale, which measures trouble managing physical and psychological symptoms during the past week as (0) no trouble, (1) some, and (2) a lot of trouble (patients: α = 0.780; caregivers: α = 0.779). QOL was assessed using the FACT-G, which measures physical, emotional, social and functional QOL (patient subscales: α = 0.767 - .892; caregiver subscales: α = 0.736 - .859). The actor-partner interdependence model (APIM) was used to our hypotheses that increased symptom distress among patients and caregivers would be negatively associated with their own QOL (actor effects) and the other dyad members’ QOL (partner effects). Data were analyzed using path analysis in MPlus. Model covariates included demographic, medical, and relationship factors.

Results. The most common symptoms were fatigue (66.9%), pain (62.1%), and sleep problems (61.3%) among patients and fatigue (56.5%), sleep problems (54.0%) and mental distress (53.2%) among caregivers. Symptom distress was higher (p<.001) among patients (= 7.20) than caregivers (= 3.79). We observed several actor and partner effects (p<.05). Increased symptom distress among patients was associated with poorer physical, emotional, and functional QOL (actor effects) and poorer emotional QOL among caregivers (partner effects). Increased symptom distress among caregivers was associated with their own poorer physical, emotional, and social QOL (actor effects), and poorer emotional QOL among patients (partner effects).

Conclusion. More symptom distress among Black Americans with cancer and their caregivers contributed to their own poorer QOL, particularly physical and emotional dimensions. Emotional QOL was also influenced by the other dyad member’s symptom distress. Supporting both Black middle-aged and older adults with cancer and their caregivers’ symptom management may improve their individual and dyadic outcomes. Documented racial disparities in symptom management suggest anti-racism frameworks may be useful for future research and interventions to improve outcomes in this population.