Work

Dyadic communication in rare cancer: a registry-based study of patients with Erdheim-Chester disease and their caregivers

Year: 2023

Type: article

Abstract: A cancer diagnosis causes distress and instability not only to the affected patient but also to the psychosocial ecosystem of the patient, most notably their family and friend caregivers.Caregivers support patients in all components of their disease trajectory, from navigating the diagnosis to discussing the symptoms, treatments and side effects, and even advanced care planning.Investigating the dyad, that is, the patient-caregiver pair, is of critical importance.Open dyadic communication between a patient with cancer and their caregiver is associated with positive elements of dyadic coping, such as increased intimacy and emotional acceptance, fewer physical symptoms, and less psychological distress.1,2 Conversely, avoidance of communication about illness is associated with adverse features of dyadic coping, such as decreased intimacy and relational satisfaction.3 Existing literature about dyadic communication in cancer has examined common cancers; there has been little examination of patient-caregiver communication about illness for dyads navigating a highly rare cancer.Although individual rare cancers are uncommon, rare cancers, in aggregate, constitute 20% of all cancer diagnoses in the United States, 4 rendering them an important and distinct entity to investigate from the viewpoint of patient, caregiver, and dyadic experience.Erdheim-Chester disease (ECD) is a very rare blood cancer, with ~1500 cases since 1930.It is a disease with protean manifestations that can affect any structure, including bones, skin, eyes, and brain.5 Additionally, it is nearly invariably defined by delayed diagnosis exceeding 2 years.6 We have demonstrated dense, widely varied, and poor symptomatology, including frequent fatigue, pain, sadness, and anxiety in patients with ECD.7,8 Among caregivers of individuals with ECD, we have identified a constellation of challenges emanating directly from the experience of providing support for a patient with a rare disease, such as heightened anxiety, distress, and unmet support needs related to protracted undiagnosed illness and scarcity of reliable information about ECD.Herein, we investigated communication about illness within the ECD patient-caregiver dyad; we hypothesized that factors salient to the experience of patients and caregivers with rare cancer would be associated with worse dyadic communication about illness.This study consists of an institutional review board-approved registry study and caregiver study maintained at Memorial Sloan Kettering Cancer Center (#NCT03329274 and #NCT03990428).All data are contained in Research Electronic Data Capture, a platform for collecting data in a secure webbased interface.Participants were patients with biopsy-confirmed ECD and their caregivers.Patient participants were self-referred or referred from within the Memorial Sloan Kettering Cancer Center cohort by their health care providers or from centers recognized by the ECD Global Alliance.Patients and caregivers provided informed consent to participate and complete self-reported assessments.Dyads of patient

Source: Blood Advances

DOI: 10.1182/bloodadvances.2023010827