The unmet supportive care needs, quality of life, and care experiences of patients with functioning and non-functioning Neuroendocrine tumours (NETs) at early diagnosis

Guccione, L; Gough, K; Drosdowsky, A; Price, T; Pavlakis, N; Wyld, D; Ransom, D; Michael, M; Schofield, P

Author(s): Guccione, L; Gough, K; Drosdowsky, A; Price, T; Pavlakis, N; Wyld, D; Ransom, D; Michael, M; Schofield, P;
Details: Publication Year 2022-01,Volume 105,Issue #1,Page 212-220
Journal Title: Patient Education and Counseling
Publication Type: Research article
Abstract: OBJECTIVE: Healthcare experiences, quality of life and psychosocial needs of patients with Neuroendocrine tumours (NETs) will be assessed to identify differences between NET sub-groups and inform the design of supportive care services. METHODS: This study constitutes phase one of a three-phase mixed-methods multi-site study with NET patients (n = 123). Demographic, clinical and patient reported outcome questionnaire data was collected. RESULTS: No differences in patient reported outcomes were found beyond symptoms of diarrhoea and flushing between NET sub-groups. For combined NET patients, the majority reported negative experiences in their understanding of the explanation of what was wrong with them (67%); receiving written information about their cancer (69%), their family/carer receiving all the information required to care for them (61%); and the usefulness of information about NETs online (66%). NET patients reported at least one moderate-to-high need for disease specific information (63%). Medium- to large-sized differences in quality of life subscales were also observed with the functioning group reporting more anxiety compared to population norms. CONCLUSIONS: There is a need to improve the current provision of information for people with NETs. PRACTICE IMPLICATIONS: These findings will inform the design and development of an informational resource to facilitate improved understanding for patients with NETs.
Keywords: Early Detection of Cancer; Humans; *Neuroendocrine Tumors/diagnosis/therapy; Patient Reported Outcome Measures; *Quality of Life/psychology; Surveys and Questionnaires; And supportive care; Cancer; Neuroendocrine cancer; Patient information; Patient reported outcomes; Quality of life; Unmet needs
Department(s): Health Services Research; Medical Oncology
PubMed ID: 34030927
Publisher's Version: https://doi.org/10.1016/j.pec.2021.05.006
Terms of Use/Rights Notice: Refer to copyright notice on published article.

Creation Date: 2024-11-01 12:10:46

Last Modified: 2024-11-01 12:11:37