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Using an Interactive App for Symptom Reporting and Management Following Pancreatic Cancer Surgery to Facilitate Person-Centered Care: Descriptive Study

BACKGROUND: Pancreatic and periampullary cancers are rare but have high mortality rates. The only hope for cure is surgical removal of the tumor. Following pancreatic surgery, the patients have a great deal of responsibility for managing their symptoms. Patients report a lack of sufficient knowledge...

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Autores principales: Gustavell, Tina, Sundberg, Kay, Langius-Eklöf, Ann
Formato: Online Artículo Texto
Lenguaje:English
Publicado: JMIR Publications 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7330738/
https://www.ncbi.nlm.nih.gov/pubmed/32554375
http://dx.doi.org/10.2196/17855
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author Gustavell, Tina
Sundberg, Kay
Langius-Eklöf, Ann
author_facet Gustavell, Tina
Sundberg, Kay
Langius-Eklöf, Ann
author_sort Gustavell, Tina
collection PubMed
description BACKGROUND: Pancreatic and periampullary cancers are rare but have high mortality rates. The only hope for cure is surgical removal of the tumor. Following pancreatic surgery, the patients have a great deal of responsibility for managing their symptoms. Patients report a lack of sufficient knowledge of self-care and unmet supportive care needs. This necessitates a health care system responsive to these needs and health care professionals who pay close attention to symptoms. Person-centered care is widely encouraged and means a shift from a model in which the patient is the passive object of care to a model involving the patient as an active participant in their own care. To address the challenges in care following pancreatic cancer surgery, an interactive app (Interaktor) was developed in which patients regularly report symptoms and receive support for self-care. The app has been shown to reduce patients’ symptom burden and to increase their self-care activity levels following pancreaticoduodenectomy due to cancer. OBJECTIVE: The aim of the study was to describe how patients used the Interaktor app following pancreaticoduodenectomy due to cancer and their experience with doing so. METHODS: A total of 115 patients were invited to use Interaktor for 6 months following pancreaticoduodenectomy. Of those, 35 declined, 8 dropped out, and 46 did not meet the inclusion criteria after surgery, leaving 26 patients for inclusion in the analysis. The patients were instructed to report symptoms daily through the app for up to 6 months following surgery. In case of alerting symptoms, they were contacted by their nurse. Data on reported symptoms, alerts, and viewed self-care advice were logged and analyzed with descriptive statistics. Also, the patients were interviewed about their experiences, and the data were analyzed using thematic analysis. RESULTS: The patients’ median adherence to symptom reporting was 82%. Fatigue and pain were the most reported symptoms. Alerting symptoms were reported by 24 patients, and the most common alert was fever. There were variations in how many times the patients viewed the self-care advice (range 3-181 times). The most commonly viewed advice concerned pancreatic enzyme supplements. Through the interviews, the overarching theme was “Being seen as a person,” with the following 3 sub-themes: “Getting your voice heard,” “Having access to an extended arm of health care,” and “Learning about own health.” CONCLUSIONS: Interaktor proved to be well accepted. It made patients feel reassured at home and offered support for self-care. The app facilitated person-centered care by its multiple features targeting individual supportive care needs and enabled participation in their own care. This supports our recent studies showing that patients using the app had less symptom burden and higher self-care activity levels than patients receiving only standard care.
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spelling pubmed-73307382020-07-06 Using an Interactive App for Symptom Reporting and Management Following Pancreatic Cancer Surgery to Facilitate Person-Centered Care: Descriptive Study Gustavell, Tina Sundberg, Kay Langius-Eklöf, Ann JMIR Mhealth Uhealth Original Paper BACKGROUND: Pancreatic and periampullary cancers are rare but have high mortality rates. The only hope for cure is surgical removal of the tumor. Following pancreatic surgery, the patients have a great deal of responsibility for managing their symptoms. Patients report a lack of sufficient knowledge of self-care and unmet supportive care needs. This necessitates a health care system responsive to these needs and health care professionals who pay close attention to symptoms. Person-centered care is widely encouraged and means a shift from a model in which the patient is the passive object of care to a model involving the patient as an active participant in their own care. To address the challenges in care following pancreatic cancer surgery, an interactive app (Interaktor) was developed in which patients regularly report symptoms and receive support for self-care. The app has been shown to reduce patients’ symptom burden and to increase their self-care activity levels following pancreaticoduodenectomy due to cancer. OBJECTIVE: The aim of the study was to describe how patients used the Interaktor app following pancreaticoduodenectomy due to cancer and their experience with doing so. METHODS: A total of 115 patients were invited to use Interaktor for 6 months following pancreaticoduodenectomy. Of those, 35 declined, 8 dropped out, and 46 did not meet the inclusion criteria after surgery, leaving 26 patients for inclusion in the analysis. The patients were instructed to report symptoms daily through the app for up to 6 months following surgery. In case of alerting symptoms, they were contacted by their nurse. Data on reported symptoms, alerts, and viewed self-care advice were logged and analyzed with descriptive statistics. Also, the patients were interviewed about their experiences, and the data were analyzed using thematic analysis. RESULTS: The patients’ median adherence to symptom reporting was 82%. Fatigue and pain were the most reported symptoms. Alerting symptoms were reported by 24 patients, and the most common alert was fever. There were variations in how many times the patients viewed the self-care advice (range 3-181 times). The most commonly viewed advice concerned pancreatic enzyme supplements. Through the interviews, the overarching theme was “Being seen as a person,” with the following 3 sub-themes: “Getting your voice heard,” “Having access to an extended arm of health care,” and “Learning about own health.” CONCLUSIONS: Interaktor proved to be well accepted. It made patients feel reassured at home and offered support for self-care. The app facilitated person-centered care by its multiple features targeting individual supportive care needs and enabled participation in their own care. This supports our recent studies showing that patients using the app had less symptom burden and higher self-care activity levels than patients receiving only standard care. JMIR Publications 2020-06-17 /pmc/articles/PMC7330738/ /pubmed/32554375 http://dx.doi.org/10.2196/17855 Text en ©Tina Gustavell, Kay Sundberg, Ann Langius-Eklöf. Originally published in JMIR mHealth and uHealth (http://mhealth.jmir.org), 17.06.2020. https://creativecommons.org/licenses/by/4.0/ This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR mHealth and uHealth, is properly cited. The complete bibliographic information, a link to the original publication on http://mhealth.jmir.org/, as well as this copyright and license information must be included.
spellingShingle Original Paper
Gustavell, Tina
Sundberg, Kay
Langius-Eklöf, Ann
Using an Interactive App for Symptom Reporting and Management Following Pancreatic Cancer Surgery to Facilitate Person-Centered Care: Descriptive Study
title Using an Interactive App for Symptom Reporting and Management Following Pancreatic Cancer Surgery to Facilitate Person-Centered Care: Descriptive Study
title_full Using an Interactive App for Symptom Reporting and Management Following Pancreatic Cancer Surgery to Facilitate Person-Centered Care: Descriptive Study
title_fullStr Using an Interactive App for Symptom Reporting and Management Following Pancreatic Cancer Surgery to Facilitate Person-Centered Care: Descriptive Study
title_full_unstemmed Using an Interactive App for Symptom Reporting and Management Following Pancreatic Cancer Surgery to Facilitate Person-Centered Care: Descriptive Study
title_short Using an Interactive App for Symptom Reporting and Management Following Pancreatic Cancer Surgery to Facilitate Person-Centered Care: Descriptive Study
title_sort using an interactive app for symptom reporting and management following pancreatic cancer surgery to facilitate person-centered care: descriptive study
topic Original Paper
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7330738/
https://www.ncbi.nlm.nih.gov/pubmed/32554375
http://dx.doi.org/10.2196/17855
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