Usability of an online application for reporting the burden of side effects in cancer patients
- 34 Downloads
In the Netherlands, online patient reporting of side effects is a new phenomenon. The aim of this study was to gain insight into patients’ user experiences and the benefits of the web application BijKanker (‘AlongsideCancer’).
Patients in seven hospitals were asked to make entries in BijKanker at least once a week. On logging in to the application for the first time (T1), patients were asked to complete a questionnaire on information needs and Internet use. Four months after starting their treatment (T2), they were asked to complete a second questionnaire on their experiences with BijKanker and its four functions: information; reporting side effects; communication with oncology nurses and clinicians; and data feedback.
Ninety-nine patients logged in to BijKanker, 60 patients (61%) had completed the first questionnaire (T1) and 40 (40%) had also completed the second questionnaire (T2). In total, 1661 side effects were reported. Generally, patients experienced BijKanker as user-friendly and patients appreciated the attention given to their side effects.
The user-centred design gives ample insight into user experiences and usability. The results provide useful starting points for improvements to the online application. We recommend to put much effort into supporting oncology nurses in the implementation of the application.
KeywordsCancer Side effects Online application Patient-reported outcomes Chemotherapy
Common Terminology Criteria for Adverse Events
Health-related quality of life
The Netherlands Comprehensive Cancer Organisation
Nurse Problem Analysis
Patient-Reported Outcomes Common Terminology Criteria for Adverse Events
Randomised clinical trial
We wish to thank the patients and their nurses and doctors at the following hospitals in the Netherlands for their participation in this study: Bernhoven Uden, Elisabeth-TweeSteden Hospital Tilburg, Haven Hospital Rotterdam, Maastricht UMC, Medical Centre Alkmaar, Spaarne Hospital Haarlem, and ZorgSaam Terneuzen. Special thanks are due to Josca Heier-van Leerdam for her role as an advisor.
Compliance with ethical standards
A declaration of no objection was granted by the Medical Ethics Review Committee Midden-Brabant (NW2015-17). All participants provided informed consent online.
Conflict of interest
The authors declare that they have no conflict of interest.
All the authors have approved the contents of this manuscript. This manuscript is not being considered for publication elsewhere and its findings have not been previously published.
- 1.Mols F, Beijers T, Lemmens V, van den Hurk CJ, Vreugdenhil G, van de Poll-Franse LV (2013) Chemotherapy-induced neuropathy and its association with quality of life among 2- to 11-year colorectal cancer survivors: results from the population-based PROFILES registry. J Clin Oncol 31(21):2699–2707. https://doi.org/10.1200/JCO.2013.49.1514 CrossRefPubMedGoogle Scholar
- 2.Trajkovic-Vidakovic M, de Graeff A, Voest EE, Teunissen SC (2012) Symptoms tell it all: a systematic review of the value of symptom assessment to predict survival in advanced cancer patients. Crit Rev Oncol Hematol 84(1):130–148. https://doi.org/10.1016/j.critrevonc.2012.02.011 CrossRefPubMedGoogle Scholar
- 4.Goldhirsch A, Coates AS, Colleoni M, Castiglione-Gertsch M, Gelber RD (1998) Adjuvant chemoendocrine therapy in postmenopausal breast cancer: cyclophosphamide, methotrexate, and fluorouracil dose and schedule may make a difference. International Breast Cancer Study Group. J Clin Oncol 16(4):1358–1362. https://doi.org/10.1200/JCO.19188.8.131.528 CrossRefPubMedGoogle Scholar
- 7.Judson TJ, Bennett AV, Rogak LJ, Sit L, Barz A, Kris MG, Hudis CA, Scher HI, Sabattini P, Schrag D, Basch E (2013) Feasibility of long-term patient self-reporting of toxicities from home via the Internet during routine chemotherapy. J Clin Oncol 31(20):2580–2585. https://doi.org/10.1200/JCO.2012.47.6804 CrossRefPubMedPubMedCentralGoogle Scholar
- 8.Basch E, Deal AM, Kris MG, Scher HI, Hudis CA, Sabbatini P, Rogak L, Bennett AV, Dueck AC, Atkinson TM, Chou JF, Dulko D, Sit L, Barz A, Novotny P, Fruscione M, Sloan JA, Schrag D (2016) Symptom monitoring with patient-reported outcomes during routine cancer treatment: a randomized controlled trial. J Clin Oncol 34(6):557–565. https://doi.org/10.1200/JCO.2015.63.0830 CrossRefPubMedGoogle Scholar
- 9.Basch E, Iasonos A, Barz A, Culkin A, Kris MG, Artz D, Fearn P, Speakman J, Farquhar R, Scher HI, McCabe M, Schrag D (2007) Long-term toxicity monitoring via electronic patient-reported outcomes in patients receiving chemotherapy. J Clin Oncol 25(34):5374–5380. https://doi.org/10.1200/JCO.2007.11.2243 CrossRefPubMedGoogle Scholar
- 10.Pietanza MC, Basch EM, Lash A, Schwartz LH, Ginsberg MS, Zhao B, Shouery M, Shaw M, Rogak LJ, Wilson M, Gabow A, Latif M, Lin KH, Wu Q, Kass SL, Miller CP, Tyson L, Sumner DK, Berkowitz-Hergianto A, Sima CS, Kris MG (2013) Harnessing technology to improve clinical trials: study of real-time informatics to collect data, toxicities, image response assessments, and patient-reported outcomes in a phase II clinical trial. J Clin Oncol 31(16):2004–2009. https://doi.org/10.1200/JCO.2012.45.8117 CrossRefPubMedPubMedCentralGoogle Scholar
- 11.Denis F, Lethrosne C, Pourel N, Molinier O, Pointreau Y, Domont J et al. Overall survival in patients with lung cancer using a web-application-guided follow-up compared to standard modalities: results of phase III randomized trial. . 2016 ASCO Annual Meeting Chicago: J Clin Oncol 34, 2016 (suppl; abstr LBA9006); 2016Google Scholar
- 12.Denis F, Lethrosne C, Pourel N, Molinier O, Pointreau Y, Domont J et al. Randomized trial comparing a web-mediated follow-up with routine surveillance in lung cancer patients. Journal of the National Cancer Institute. 2017;109(9). https://doi.org/10.1093/jnci/djx029
- 13.Berry DL, Hong F, Halpenny B, Partridge A, Fox E, Fann JR, Wolpin S, Lober WB, Bush N, Parvathaneni U, Amtmann D, Ford R (2014) The electronic self report assessment and intervention for cancer: promoting patient verbal reporting of symptom and quality of life issues in a randomized controlled trial. BMC Cancer 14:513. https://doi.org/10.1186/1471-2407-14-513 CrossRefPubMedPubMedCentralGoogle Scholar
- 14.Ruland CM, Andersen T, Jeneson A, Moore S, Grimsbo GH, Borosund E et al (2013) Effects of an internet support system to assist cancer patients in reducing symptom distress: a randomized controlled trial. Cancer Nurs 36(1):6–17. https://doi.org/10.1097/NCC.0b013e31824d90d4 CrossRefPubMedGoogle Scholar
- 15.Bennett AV, Dueck AC, Mitchell SA, Mendoza TR, Reeve BB, Atkinson TM et al. Mode equivalence and acceptability of tablet computer-, interactive voice response system-, and paper-based administration of the U.S. National Cancer Institute’s Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE). Health and quality of life outcomes. 2016;14:24. https://doi.org/10.1186/s12955-016-0426-6
- 17.Nieuwlaat R, Wilczynski N, Navarro T, Hobson N, Jeffery R, Keepanasseril A, Agoritsas T, Mistry N, Iorio A, Jack S, Sivaramalingam B, Iserman E, Mustafa RA, Jedraszewski D, Cotoi C, Haynes RB, Cochrane Consumers and Communication Group (2014) Interventions for enhancing medication adherence. The Cochrane database of systematic reviews 11:CD000011. https://doi.org/10.1002/14651858.CD000011.pub4 CrossRefGoogle Scholar
- 19.Basch E, Artz D, Iasonos A, et al (2007) Evaluation of an online platform for cancer patient self-reporting of chemotherapy toxicities. J Am Med Inform Assoc.14(3):264–268. https://doi.org/10.1197/jamia.M2177
- 20.Kirkovits T, Schinkoethe T, Drewes C, Gehring C, Bauerfeind I, Harbeck N et al (2016) eHealth in modern patient-caregiver communication: high rate of acceptance among physicians for additional support of breast cancer patients during long-term therapy. J Med Internet Res Cancer(2):e14. https://doi.org/10.2196/cancer.5132 CrossRefGoogle Scholar
- 22.Hershman DL, Lacchetti C, Dworkin RH, Lavoie Smith EM, Bleeker J, Cavaletti G, Chauhan C, Gavin P, Lavino A, Lustberg MB, Paice J, Schneider B, Smith ML, Smith T, Terstriep S, Wagner-Johnston N, Bak K, Loprinzi CL, American Society of Clinical Oncology (2014) Prevention and management of chemotherapy-induced peripheral neuropathy in survivors of adult cancers: American Society of Clinical Oncology clinical practice guideline. J Clin Oncol 32(18):1941–1967. https://doi.org/10.1200/JCO.2013.54.0914 CrossRefPubMedGoogle Scholar
- 23.Cancer Therapy Evaluation Program. Common Toxicity Criteria (CTC). National Cancer Institute, Website National Cancer Institute. 2016. https://ctep.cancer.gov/protocolDevelopment/electronic_applications/ctc.htm
- 25.van de Poll-Franse LV, van Eenbergen MC (2008) Internet use by cancer survivors: current use and future wishes. Support Care CancerGoogle Scholar
- 27.Menning S, de Ruiter MB, Kieffer JM, Agelink van Rentergem J, Veltman DJ, Fruijtier A et al (2016) Cognitive impairment in a subset of breast cancer patients after systemic therapy-results from a longitudinal study. J Pain Symptom Manag 52(4):560–569 e1. https://doi.org/10.1016/j.jpainsymman.2016.04.012 CrossRefGoogle Scholar
- 29.Djamasbi S, Fruhling A, Loiacono E. The influence of affect, attitude and usefulness in the acceptance of telemedicine systems. J Inf Technol Theory Appl. 2009;10(1)Google Scholar
- 30.Nicolaije KA, Husson O, Ezendam NP, Vos MC, Kruitwagen RF, Lybeert ML et al (2012) Endometrial cancer survivors are unsatisfied with received information about diagnosis, treatment and follow-up: a study from the population-based PROFILES registry. Patient Educ Couns 88(3):427–435. https://doi.org/10.1016/j.pec.2012.05.002 CrossRefPubMedGoogle Scholar
- 31.Lamers RE, Cuypers M, Husson O, de Vries M, Kil PJ, Ruud Bosch JL et al (2016) Patients are dissatisfied with information provision: perceived information provision and quality of life in prostate cancer patients. Psycho-Oncology 25(6):633–640. https://doi.org/10.1002/pon.3981 CrossRefPubMedGoogle Scholar
- 32.Husson O, Mols F, Oranje WA, Haak HR, Nieuwlaat WA, Netea-Maier RT, Smit JWA, van de Poll-Franse LV (2014) Unmet information needs and impact of cancer in (long-term) thyroid cancer survivors: results of the PROFILES registry. Psycho-Oncology 23(8):946–952. https://doi.org/10.1002/pon.3514 CrossRefPubMedGoogle Scholar
- 34.Basch E, Wood WA, Schrag D, Sima CS, Shaw M, Rogak LJ, Kris MG, Shouery M, Bennett A, Atkinson T, Pietanza MC (2016) Feasibility and clinical impact of sharing patient-reported symptom toxicities and performance status with clinical investigators during a phase 2 cancer treatment trial. Clin Trials 13(3):331–337. https://doi.org/10.1177/1740774515615540 CrossRefPubMedGoogle Scholar
- 35.Basch E, Reeve BB, Mitchell SA, Clauser SB, Minasian LM, Dueck AC et al (2014) Development of the National Cancer Institute’s Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE). J Natl Cancer Inst 106(9). https://doi.org/10.1093/jnci/dju244
- 36.Bruner DW, Hanisch LJ, Reeve BB, Trotti AM, Schrag D, Sit L, Mendoza TR, Minasian L, O’Mara A, Denicoff AM, Rowland JH, Montello M, Geoghegan C, Abernethy AP, Clauser SB, Castro K, Mitchell SA, Burke L, Trentacosti AM, Basch EM (2011) Stakeholder perspectives on implementing the National Cancer Institute’s patient-reported outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE). Transl Behav Med 1(1):110–122. https://doi.org/10.1007/s13142-011-0025-3 CrossRefPubMedPubMedCentralGoogle Scholar
- 37.Dueck AC, Mendoza TR, Mitchell SA, Reeve BB, Castro KM, Rogak LJ, Atkinson TM, Bennett AV, Denicoff AM, O’Mara AM, Li Y, Clauser SB, Bryant DM, Bearden JD 3rd, Gillis TA, Harness JK, Siegel RD, Paul DB, Cleeland CS, Schrag D, Sloan JA, Abernethy AP, Bruner DW, Minasian LM, Basch E, National Cancer Institute PRO-CTCAE Study Group (2015) Validity and reliability of the US National Cancer Institute’s Patient-Reported Outcomes Version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE). JAMA Oncol 1(8):1051–1059. https://doi.org/10.1001/jamaoncol.2015.2639
- 38.Hay JL, Atkinson TM, Reeve BB, Mitchell SA, Mendoza TR, Willis G et al (2014) Cognitive interviewing of the US National Cancer Institute’s Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE). Qual Life Res 23(1):257–269. https://doi.org/10.1007/s11136-013-0470-1 CrossRefPubMedGoogle Scholar
- 39.Kluetz PG, Chingos DT, Basch EM, Mitchell SA (2016) Patient-reported outcomes in cancer clinical trials: measuring symptomatic adverse events with the National Cancer Institute’s Patient-Reported Outcomes Version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE). American Society of Clinical Oncology educational book / ASCO American Society of Clinical Oncology Meeting 35:67–73. https://doi.org/10.14694/EDBK_159514 CrossRefGoogle Scholar
- 40.Atkinson TM, Ryan SJ, Bennett AV, Stover AM, Saracino RM, Rogak LJ, Jewell ST, Matsoukas K, Li Y, Basch E (2016) The association between clinician-based common terminology criteria for adverse events (CTCAE) and patient-reported outcomes (PRO): a systematic review. Support Care Cancer 24(8):3669–3676. https://doi.org/10.1007/s00520-016-3297-9 CrossRefPubMedPubMedCentralGoogle Scholar
- 41.Basch E, Iasonos A, McDonough T, Barz A, Culkin A, Kris MG, Scher HI, Schrag D (2006) Patient versus clinician symptom reporting using the National Cancer Institute Common Terminology Criteria for Adverse Events: results of a questionnaire-based study. Lancet Oncol 7(11):903–909. https://doi.org/10.1016/S1470-2045(06)70910-X CrossRefPubMedGoogle Scholar
- 42.Cirillo M, Venturini M, Ciccarelli L, Coati F, Bortolami O, Verlato G (2009) Clinician versus nurse symptom reporting using the National Cancer Institute-Common Terminology Criteria for Adverse Events during chemotherapy: results of a comparison based on patient’s self-reported questionnaire. Ann Oncol 20(12):1929–1935. https://doi.org/10.1093/annonc/mdp287 CrossRefPubMedGoogle Scholar