Kyoko Ishida1,2,3, Kazuki Sato4, Hirokazu Komatsu5, Tatsuya Morita6, Tatsuo Akechi7,8, Megumi Uchida7,8, Kento Masukawa9, Naoko Igarashi9, Yoshiyuki Kizawa10, Satoru Tsuneto11, Yasuo Shima12, Mitsunori Miyashita9, Shoko Ando4. 1. Department of Nursing, Doctoral Course, Nagoya University Graduate School of Medicine, Nagoya, Aichi, Japan. k_ishida@nagoya-u.jp. 2. Center for Psycho-Oncology and Palliative Care, Nagoya City University Hospital, 1-Kawasumi, Mizuho-cho, Mizuho-ku, Nagoya, 467-8601, Japan. k_ishida@nagoya-u.jp. 3. Department of Nursing, Nagoya City University Hospital, Nagoya, Aichi, Japan. k_ishida@nagoya-u.jp. 4. Nursing for Advanced Practice, Department of Integrated Health Sciences, Nagoya University Graduate School of Medicine, Nagoya, Aichi, Japan. 5. Department of Hematology and Oncology, Nagoya City University Graduate School of Medical Sciences, Nagoya, Aichi, Japan. 6. Department of Palliative and Supportive Care, Palliative Care Team, Seirei Mikatahara General Hospital, Hamamtsu, Shizuoka, Japan. 7. Center for Psycho-Oncology and Palliative Care, Nagoya City University Hospital, 1-Kawasumi, Mizuho-cho, Mizuho-ku, Nagoya, 467-8601, Japan. 8. Department of Psychiatry and Cognitive-Behavioral Medicine, Nagoya City University Graduate School of Medical Sciences, Nagoya, Aichi, Japan. 9. Department of Palliative Nursing, Health Sciences, Tohoku University Graduate School of Medicine, Sendai, Miyagi, Japan. 10. Department of Palliative Medicine, Kobe University Graduate School of Medicine, Kobe, Hyogo, Japan. 11. Department of Human Health Sciences, Kyoto University Graduate School of Medicine, Saikyo-ku, Kyoto, Japan. 12. Department of Palliative Medicine, Tsukuba Medical Center Hospital, Tsukuba, Ibaraki, Japan.
Abstract
PURPOSE: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.
PURPOSE: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.
Authors: A Richardson; R Wagland; R Foster; J Symons; C Davis; L Boyland; C Foster; J Addington-Hall Journal: BMJ Support Palliat Care Date: 2013-11-19 Impact factor: 3.568
Authors: F Losa; G Soler; A Casado; A Estival; I Fernández; S Giménez; F Longo; R Pazo-Cid; J Salgado; M Á Seguí Journal: Clin Transl Oncol Date: 2017-12-11 Impact factor: 3.405