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AIM Neuroendocrine tumors (NETs) are an uncommon cancer and difficult to diagnose and treat. Treatment is complicated by debilitating side effects, impacting quality of life. This Australia-wide survey aimed to increase our understanding of the impact and burden of NETs on patient quality of life (QoL) and to assess the benefit of a patient support program (eSHINE). METHOD Consented patients from the eSHINE mailing list (n = 267) were invited to participate in an electronic self-reported survey comprising 29 questions on clinical characteristics, diagnosis, sociodemographics, impact of living with NETs and benefits of a patient support program. No formal sample size was calculated. All analyses were descriptive. RESULTS A total of 144 participants (54%) responded. A total of 129 (48%) completed all questions. Approximately half of respondents were female, from metropolitan and rural areas, aged over 65 years and had a primary diagnosis of gastrointestinal NETs. Fifty-eight percent had been diagnosed over 5 years ago. Twenty-seven percent reported seeing four or more healthcare professionals prior to being diagnosed. Living with NETs had a large impact on patients\' QoL. 83.5% reported fatigue, 76% felt their emotional health was impacted by NETs and 75% reported reduced ability to participate in leisure activities. Access to a supportive network to manage and treat NETs was extremely important to participants. Eighty-five percent of respondents reported the eSHINE program had a positive impact on their QoL. CONCLUSION Patients value support from healthcare professionals and patient support programs such as eSHINE in managing NETs. The eSHINE Patient Support Program has a positive impact on patient QoL.
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Asia-Pacific_journal_of_clinical_oncology
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Patient reported experience of the burden of neuroendocrine tumors and impact of eSHINE Patient Support Program on patient quality of life.
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