The unmet information needs, quality of life, and care experiences of patients with neuroendocrine tumours (NETs) at follow-up: 6 months from 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 2023-09-15,Volume 31,Issue #10,Page 577
Journal Title: Supportive Care in Cancer
Publication Type: Research article
Abstract: OBJECTIVES: To identify changes in the healthcare preferences, patient experiences, and quality of life of patients with NETs at 6-month follow-up, informing the design of supportive care services. METHODS: This study presents 6-month follow-up data of a mixed-methods multi-site study. Demographic, clinical, and patient-reported outcome questionnaire data was collected. RESULTS: High percentages of suboptimal experiences of care were reported. Patients reported less positive experiences with being involved in decisions about their care and treatment; their family or someone close to them having the opportunity to talk to their cancer doctor, or having their family or someone close to them receive all the information they need to help care for them at home. Patients also reported negative experiences for on the information about their cancer accessible online and the usefulness of the information they accessed. Differences between baseline and follow-up scores were mostly not significant apart from anxiety and sleep disturbance scales, CONCLUSIONS: Patients with NETs report difficulties in accessing and understanding written information that is persistent over time. PRACTICE IMPLICATIONS: Outcomes will inform the design and development of an informational resource aimed at facilitating improved understanding for patients with NETs.
Publisher: Springer Nature
Keywords: Humans; *Neuroendocrine Tumors; Quality of Life; Anxiety/etiology; Anxiety Disorders; Patient Reported Outcome Measures; Healthcare preferences; Mixed-methods multi-site study; Patients; Supportive care services
Department(s): Health Services Research; Medical Oncology
PubMed ID: 37712997
Publisher's Version: https://doi.org/10.1007/s00520-023-08034-5
Open Access at Publisher's Site: https://doi.org/10.1007/s00520-023-08034-5
Terms of Use/Rights Notice: Refer to copyright notice on published article.

Creation Date: 2023-11-15 02:58:40

Last Modified: 2023-11-15 02:59:05