Web-based Personalised Information and Support for Patients with a Neuroendocrine Tumour: Randomised Controlled Trial

Overview

Journal Orphanet J Rare Dis

Publisher Biomed Central

Specialty General Medicine

Date 2019 Mar 2

PMID 30819238

Citations 7

Authors

L D de Hosson

G Bouma

J Stelwagen

H van Essen

G H de Bock

D J A de Groot

E G E de Vries

A M E Walenkamp

Affiliations

Soon will be listed here.

Abstract

Background: Patients with a neuroendocrine tumour (NET) frequently have physical and psychosocial complaints. Aim of this study is to determine whether a web-based, personalised information and support system (WINS) reduces distress and/or improves patients' perception of and satisfaction with information received.

Methods: Patients with NET, stratified for those newly diagnosed (< 6 months, n = 28) and with a longer history of disease (n = 74), were randomised between standard care (n = 49) and intervention, consisting of access to WINS (n = 53). Primary outcome was change of distress and satisfaction with perceived information measured with the distress thermometer and problem list and the QoL questionnaire (QLQ)-INFO25. The intervention group also completed a questionnaire based on the technical acceptance model (TAM).

Results: We observed no difference in distress slope and slope of median global score on perceived information and satisfaction between the intervention and control group. Interestingly, 55% of patients wished to receive more information at baseline.

Conclusions: In a population of NET patients, access to WINS did not improve indicators for distress, perception of information and satisfaction with information received, more than standard care only. Despite the need for more information, the WINS does not have added value to the information and care provided by health care professionals.

Clinical Trial Registration: ClinicalTrials.gov ( NCT02472678 ). Registered 6th Jan 2015. Retrospectively registered 1st May 2017.

Citing Articles

Assessing the effectiveness of measurement scales in evaluating the health-related quality of life in rare disease patients after treatment: a systematic review.

Dumbuya J, Ahmad B, Zeng C, Chen X, Lu J Health Qual Life Outcomes. 2024; 22(1):108.

PMID: 39696506 PMC: 11657302. DOI: 10.1186/s12955-024-02324-0.

Addressing cancer survivors' information needs and satisfaction: a systematic review of potential intervention components for survivors with a rare cancer type.

Farrugia T, Duijts S, Wilson C, Hemming L, Cockburn C, Spelten E Orphanet J Rare Dis. 2024; 19(1):387.

PMID: 39425097 PMC: 11488126. DOI: 10.1186/s13023-024-03403-7.

Understanding communication between patients and healthcare professionals regarding comprehensive biomarker testing in precision oncology: A scoping review.

Pichler T, Mumm F, Dehar N, Dickman E, Diez de Los Rios de la Serna C, Dinkel A Cancer Med. 2024; 13(3):e6913.

PMID: 38298115 PMC: 10905543. DOI: 10.1002/cam4.6913.

Non-pharmacological interventions to manage psychological distress in patients living with cancer: a systematic review.

Paley C, Boland J, Santarelli M, Murtagh F, Ziegler L, Chapman E BMC Palliat Care. 2023; 22(1):88.

PMID: 37407974 PMC: 10324164. DOI: 10.1186/s12904-023-01202-8.

Proposed Implementation of a Patient-Centered Self-Assessment Tool for Patients with Neuroendocrine Tumors among Academic and Community Practice Sites: The City of Hope Model.

Crook C, Yen L, Ta K, Karimi M, Nguyen D, Lee R J Clin Med. 2023; 12(3).

PMID: 36769875 PMC: 9917881. DOI: 10.3390/jcm12031229.

References

Tuinman M, Gazendam-Donofrio S, Hoekstra-Weebers J . Screening and referral for psychosocial distress in oncologic practice: use of the Distress Thermometer. Cancer. 2008; 113(4):870-8. DOI: 10.1002/cncr.23622. View

Faller H, Strahl A, Richard M, Niehues C, Meng K . The prospective relationship between satisfaction with information and symptoms of depression and anxiety in breast cancer: A structural equation modeling analysis. Psychooncology. 2016; 26(11):1741-1748. DOI: 10.1002/pon.4358. View

Feinberg Y, Law C, Singh S, Wright F . Patient experiences of having a neuroendocrine tumour: a qualitative study. Eur J Oncol Nurs. 2013; 17(5):541-5. DOI: 10.1016/j.ejon.2013.02.003. View

Ramage J, Ahmed A, Ardill J, Bax N, Breen D, Caplin M . Guidelines for the management of gastroenteropancreatic neuroendocrine (including carcinoid) tumours (NETs). Gut. 2011; 61(1):6-32. PMC: 3280861. DOI: 10.1136/gutjnl-2011-300831. View

Ruland C, Maffei R, Borosund E, Krahn A, Andersen T, Grimsbo G . Evaluation of different features of an eHealth application for personalized illness management support: cancer patients' use and appraisal of usefulness. Int J Med Inform. 2013; 82(7):593-603. DOI: 10.1016/j.ijmedinf.2013.02.007. View

Dasari A, Shen C, Halperin D, Zhao B, Zhou S, Xu Y . Trends in the Incidence, Prevalence, and Survival Outcomes in Patients With Neuroendocrine Tumors in the United States. JAMA Oncol. 2017; 3(10):1335-1342. PMC: 5824320. DOI: 10.1001/jamaoncol.2017.0589. View

Bouma G, de Hosson L, van Woerkom C, van Essen H, de Bock G, Admiraal J . Web-based information and support for patients with a newly diagnosed neuroendocrine tumor: a feasibility study. Support Care Cancer. 2017; 25(7):2075-2083. PMC: 5445166. DOI: 10.1007/s00520-017-3598-7. View

Matsuyama R, Kuhn L, Molisani A, Wilson-Genderson M . Cancer patients' information needs the first nine months after diagnosis. Patient Educ Couns. 2012; 90(1):96-102. DOI: 10.1016/j.pec.2012.09.009. View

Bouma G, Admiraal J, de Vries E, Schroder C, Walenkamp A, Reyners A . Internet-based support programs to alleviate psychosocial and physical symptoms in cancer patients: a literature analysis. Crit Rev Oncol Hematol. 2015; 95(1):26-37. DOI: 10.1016/j.critrevonc.2015.01.011. View

10.

Haugland T, Vatn M, Veenstra M, Wahl A, Natvig G . Health related quality of life in patients with neuroendocrine tumors compared with the general Norwegian population. Qual Life Res. 2009; 18(6):719-26. DOI: 10.1007/s11136-009-9487-x. View

11.

Basch E, Deal A, Dueck A, Scher H, Kris M, Hudis C . Overall Survival Results of a Trial Assessing Patient-Reported Outcomes for Symptom Monitoring During Routine Cancer Treatment. JAMA. 2017; 318(2):197-198. PMC: 5817466. DOI: 10.1001/jama.2017.7156. View

12.

Ruland C, Andersen T, Jeneson A, Moore S, Grimsbo G, Borosund E . Effects of an internet support system to assist cancer patients in reducing symptom distress: a randomized controlled trial. Cancer Nurs. 2012; 36(1):6-17. DOI: 10.1097/NCC.0b013e31824d90d4. View

13.

Varsi C, Gammon D, Wibe T, Ruland C . Patients' reported reasons for non-use of an internet-based patient-provider communication service: qualitative interview study. J Med Internet Res. 2013; 15(11):e246. PMC: 3841351. DOI: 10.2196/jmir.2683. View

14.

Arraras J, Greimel E, Sezer O, Chie W, Bergenmar M, Costantini A . An international validation study of the EORTC QLQ-INFO25 questionnaire: an instrument to assess the information given to cancer patients. Eur J Cancer. 2010; 46(15):2726-38. DOI: 10.1016/j.ejca.2010.06.118. View

15.

Husson O, Mols F, van de Poll-Franse L . The relation between information provision and health-related quality of life, anxiety and depression among cancer survivors: a systematic review. Ann Oncol. 2010; 22(4):761-772. PMC: 3065875. DOI: 10.1093/annonc/mdq413. View

16.

Aaronson N, Ahmedzai S, Bergman B, Bullinger M, Cull A, Duez N . The European Organization for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology. J Natl Cancer Inst. 1993; 85(5):365-76. DOI: 10.1093/jnci/85.5.365. View

17.

Kuenzel U, Monga Sindeu T, Schroth S, Huebner J, Herth N . Evaluation of the Quality of Online Information for Patients with Rare Cancers: Thyroid Cancer. J Cancer Educ. 2017; 33(5):960-966. DOI: 10.1007/s13187-017-1173-z. View

18.

Mattsson S, Olsson E, Johansson B, Carlsson M . Health-Related Internet Use in People With Cancer: Results From a Cross-Sectional Study in Two Outpatient Clinics in Sweden. J Med Internet Res. 2017; 19(5):e163. PMC: 5447824. DOI: 10.2196/jmir.6830. View

19.

Lawrence B, Gustafsson B, Chan A, Svejda B, Kidd M, Modlin I . The epidemiology of gastroenteropancreatic neuroendocrine tumors. Endocrinol Metab Clin North Am. 2011; 40(1):1-18, vii. DOI: 10.1016/j.ecl.2010.12.005. View

20.

Haugland T, DeVon H . Symptoms, Psychosocial Factors, and Health-Related Quality of Life in Patients With Neuroendocrine Tumors: An Integrative Review. Cancer Nurs. 2018; 42(4):E36-E46. DOI: 10.1097/NCC.0000000000000614. View