Nationwide survey on family caregiver-perceived experiences of patients with cancer of unknown primary site.
Burden
Early diagnosis
Experience
Family caregivers
Uncertainty
Unknown primary tumors
Journal
Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer
ISSN: 1433-7339
Titre abrégé: Support Care Cancer
Pays: Germany
ID NLM: 9302957
Informations de publication
Date de publication:
Jul 2022
Jul 2022
Historique:
received:
15
12
2021
accepted:
13
04
2022
pubmed:
29
4
2022
medline:
31
5
2022
entrez:
28
4
2022
Statut:
ppublish
Résumé
Cancer of unknown primary site (CUP) is an aggressive disease with poor prognosis. As research on the experiences of CUP patients and their families is scarce, this study aimed to compare the family caregiver-perceived burden of CUP with that of common cancers (lung, colon, and stomach cancers). The association between family caregiver-perceived burden and CUP patients' quality of life (QOL) at end-of-life and family depression, respectively, was also explored. This was a pre-planned secondary analysis of nationwide cross-sectional survey data from the bereaved family caregivers of patients with cancer who died at 286 institutions. The major measurements were the eight-item family caregiver-perceived Burden scale (comprising specialist access, uncertainty, and prolonged diagnosis), Good Death Inventory, and Patient Health Questionnaire 9. Of 27,591 survey responses, we analyzed 97 and 717 responses from family caregivers of patients with CUP and common cancer, respectively. The families of CUP patients scored significantly higher on all three burden subscales than those of common cancer patients (effect sizes: specialist access subscale, 0.3; uncertainty subscale, 0.66; and prolonged diagnosis subscale, 0.69; adjusted P < 0.01). Greater family burden was significantly associated with lower patient QOL and higher family depression. Burden was significantly associated with being a spouse, second opinion consultation, and diagnosis period of > 1 month. The family caregivers of CUP patients experience poor specialist access, greater uncertainty, and a prolonged diagnosis. They should be cared for from the initial stages to establish access to specialists, obtain an early diagnosis, and reduce uncertainty.
Identifiants
pubmed: 35484314
doi: 10.1007/s00520-022-07070-x
pii: 10.1007/s00520-022-07070-x
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
6353-6363Subventions
Organisme : Japan Hospice Palliative Care Foundation
ID : No grant number
Informations de copyright
© 2022. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.
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