Challenges and positive impact of rare cancer caregiving: A mixed-methods study of caregivers of patients with Erdheim-Chester disease and other histiocytic neoplasms

Mitchell, Hannah-Rose; Applebaum, Allison J.; Lynch, Kathleen; Reiner, Anne S.; Atkinson, Tom; Buthorn, Justin J.; Sigler, Allison S.; Bossert, Dana; Brewer, Kathleen; Corkran, Jessica; Fournier, Deanna; Panageas, Katherine S.; Diamond, Eli L.

doi:10.1016/j.eclinm.2022.101670

eClinicalMedicine

2022

DOI: 10.1016/j.eclinm.2022.101670

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Challenges and positive impact of rare cancer caregiving: A mixed-methods study of caregivers of patients with Erdheim-Chester disease and other histiocytic neoplasms

Hannah-Rose Mitchell¹,

Allison J. Applebaum²,

Kathleen Lynch³

et al.

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“… 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.…”

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confidence: 84%

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

et al. 2023

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confidence: 84%

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

et al. 2023

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Supportive care needs and associated factors among caregivers of patients with colorectal cancer: a cross-sectional study

Zhang,

Wang,

Shao

et al. 2024

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To assess the level of supportive care needs of caregivers of colorectal cancer patients and explore the related key influencing factors. Totaling 283 caregivers of patients with colorectal cancer were investigated in this study. Firstly, caregivers were invited to complete a set of questionnaires, including the general information questionnaire, the Supportive Care Needs Survey-Partners and the Caregivers of cancer patients, the Caregiver Preparedness Scale, the Benefit Finding Scale, and the Comprehensive Score for Financial Toxicity. Univariate and multivariate linear regression were performed to investigate the associated factors of supportive care needs. The caregivers of patients with colorectal cancer have a moderate level of needs, scored at 2.71 ± 0.42. Caregiver preparedness, benefit finding, and financial toxicity were significantly negatively associated with the supportive care needs of caregivers (r = − 0.555, P < 0.001; r = − 0.534, P < 0.001; and r = − 0.615, P < 0.001, respectively). Our multivariate regression analysis identified some factors that directly affected the supportive care needs of caregivers, including the duration of illness, tumor stage, the age and educational level of caregivers, caregiver preparedness, benefit finding, and financial toxicity (R2 = 0.574, F = 23.337, P < 0.001). Supportive care needs are common among caregivers of colorectal cancer patients. Higher caregiver preparedness, benefit finding, and financial toxicity tend to ease these needs. Healthcare workers should have an in-depth understanding of the needs of caregivers of colorectal cancer patients and actively provide targeted financial/informational/technical/emotional support to promote nursing skills and reduce caregivers’ burdens.

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Challenges and positive impact of rare cancer caregiving: A mixed-methods study of caregivers of patients with Erdheim-Chester disease and other histiocytic neoplasms

Cited by 2 publications

References 49 publications

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

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

Supportive care needs and associated factors among caregivers of patients with colorectal cancer: a cross-sectional study

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