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Defining the supportive care needs and psychological morbidity of patients with functioning versus nonfunctioning neuroendocrine tumors: Protocol for a phase 1 trial of a nurse-led online and phone-based intervention

Guccione, Lisa, Gough, Karla, Drosdowsky, Allison, Fisher, Krista, Price, Timothy, Pavlakis, Nick, Khasraw, Mustafa, Wyld, David, Ransom, David, Kong, Grace, Rogers, Megan, Leyden, Simone, Leyden, John, Michael, Michael and Schofield, Penelope 2019, Defining the supportive care needs and psychological morbidity of patients with functioning versus nonfunctioning neuroendocrine tumors: Protocol for a phase 1 trial of a nurse-led online and phone-based intervention, Journal of Medical Internet Research, vol. 8, no. 12, pp. 1-12, doi: 10.2196/14361.

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Title Defining the supportive care needs and psychological morbidity of patients with functioning versus nonfunctioning neuroendocrine tumors: Protocol for a phase 1 trial of a nurse-led online and phone-based intervention
Author(s) Guccione, Lisa
Gough, Karla
Drosdowsky, Allison
Fisher, Krista
Price, Timothy
Pavlakis, Nick
Khasraw, MustafaORCID iD for Khasraw, Mustafa orcid.org/0000-0003-3249-9849
Wyld, David
Ransom, David
Kong, Grace
Rogers, Megan
Leyden, Simone
Leyden, John
Michael, Michael
Schofield, Penelope
Journal name Journal of Medical Internet Research
Volume number 8
Issue number 12
Article ID e14361
Start page 1
End page 12
Total pages 12
Publisher JMIR Publications
Place of publication Pittsburgh, Pa.
Publication date 2019-12
ISSN 1438-8871
Keyword(s) cancer
neuroendocrine tumors
NETs
supportive care interventions
telehealth
eHealth
Summary © 2019 Journal of Medical Internet Research. All rights reserved. Background: Online information resources and support have been demonstrated to positively influence the well-being of people diagnosed with cancer. This has been explored in past literature for more common cancers; however, for rare cancers, such as neuroendocrine tumors (NETs), there are little to no support or resources available. Despite relatively good prognoses, the quality of life (QoL) of patients with NETs is significantly lower compared with samples of mixed cancer patients and the general population. Patients with NETs also typically report unclear and difficult pathways of disease management and treatment, given the heterogeneity of the diagnosis. There is a vital need to improve the availability of disease-specific information for this patient group and provide supportive care that is tailored to the unique needs of the NET patient population. Objective: This study described the protocol of a study aimed to better understand the outcomes and experiences of patients diagnosed with NETs and to develop and pilot test a nurse-led online and phone-based intervention that will provide tailored supportive care targeted to NET subgroups (functioning vs nonfunctioning). Methods: This is a multisite cohort with 3 phases, incorporating both quantitative and qualitative data collection. Phase 1 is a mixed methods prospective cohort study of NET patients identifying differences in patient experiences and priority of needs between NET subgroups. Phase 2 utilizes results from phase 1 to develop an online and nurse-led phone-based intervention. Phase 3 is to pilot test and evaluate the intervention's acceptability, appropriateness, and feasibility. Results: Currently, the project is progressing through phase 1 and has completed recruitment. A total of 138 participants have been recruited to the study. To date, patient-reported outcome data from 123 participants at baseline and 87 participants at 6-month follow-up have been collected. Of these, qualitative data from semistructured interviews from 35 participants have also been obtained. Phase 2 and phase 3 of the project are yet to be completed. Conclusions: Limited research for patients with NETs suggests that QoL and patient experiences are significantly impaired compared with the general population. Furthermore, past research has failed to delineate how the clinical variability between those with functioning and nonfunctioning NETs impacts patient supportive care needs. This study will improve on the availability of disease-specific information as well as informing the design of a nurse-led online and phone-based supportive care intervention tailored for the unique needs of the NET patient population. International Registered Report Identifier (IRRID): DERR1-10.2196/14361.
Language eng
DOI 10.2196/14361
Indigenous content off
Field of Research 111299 Oncology and Carcinogenesis not elsewhere classified
08 Information and Computing Sciences
11 Medical and Health Sciences
17 Psychology and Cognitive Sciences
HERDC Research category C1 Refereed article in a scholarly journal
Free to Read? Yes
Persistent URL http://hdl.handle.net/10536/DRO/DU:30137576

Document type: Journal Article
Collections: Faculty of Health
School of Medicine
Open Access Collection
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Every reasonable effort has been made to ensure that permission has been obtained for items included in DRO. If you believe that your rights have been infringed by this repository, please contact drosupport@deakin.edu.au.