Involving the patient: A prospective study on use, appreciation and effectiveness of an information system in head and neck cancer care
Introduction
Many researchers have argued that Information and Communication Technology (ICT), in principle, is able to solve the communication and co-ordination needs of health care [1], [2]. However, adequate evaluation of most ICT-projects in health care is lacking [3], and ‘research goals are often limited to proving the feasibility of implementing new technology’ [4]. Besides, evaluation of ICT in health care is generally considered as complex [5].
In head and neck (H&N) cancer care, many information and communication bottlenecks exist [6], [7]. A well-recognised problem in multidisciplinary H&N cancer care is that as many as twenty different disciplines may be involved in the management of a patient [6]. When many care providers are involved, inter professional communication often is sub-optimal [8]. As a result, care is rarely functionally integrated [9]. Especially the period following discharge is a communication ‘pitfall’: the patient is transferred from a well looked after hospital bed to the home environment, where the care providers usually have little experience in H&N cancer.
Based on an analysis of the information and communication bottlenecks in H&N cancer care we designed, and subsequently built, an electronic health information support system [10].
In this paper, we report the actual use of the system. We focus on two questions. First, we assessed patient involvement by investigating the use and appreciation of the system by the patients. Second, we explored whether the system enabled the early detection of potential health problems of patients who were discharged from the hospital after surgery for H&N cancer.
Section snippets
Functional description of the electronic health information support system
Prior to the study, we developed an electronic health information support system for H&N cancer patients and their health care providers. The system was designed to:
- 1.
facilitate communication between all involved health care providers and between health care providers and patients;
- 2.
provide information to health care providers and patients;
- 3.
facilitate contact with fellow sufferers;
- 4.
facilitate the early detection of patient problems by means of monitoring.
Access to the functions ‘communication’ and
Results
During the inclusion period, 59 patients met the inclusion criteria. From these 59 patients, 20 refused to participate (inclusion of 66%). Of the 20 patients who refused to participate 15 were male and 5 were female.
Table 1 lists the reasons for refusal. Three patients stopped shortly after inclusion, two were too tired to participate and one patient died. Thus, 36 patients remained for evaluation of the electronic health information support system.
Table 2 describes the patients’
Discussion
Involving the patient in the care process using ICT is an active area of research [11], [12], [13]. Internet sites with health information, including health discussion groups, are abundant [14], [15], [16]. Projects where patients access their electronic medical record [17], send e-mails to their doctors [18], [19], [20], or send data to be monitored [21], [22], have also been described.
In this paper, we evaluated an electronic health information support system that provides the patient with
Acknowledgements
We would like to acknowledge the skills and dedication in patient care of the members of the Head and Neck Group in the Erasmus MC. The authors wish to thank Professor L. Feenstra, Head of the Department of Otorhinolaryngology, Professor J. van der Lei, Head of the Department of Medical Informatics, and J.A. Borgstein, ENT surgeon, for their helpful comments during preparation of this paper. Ineke Elswijk, Helen de Graaf and Roel Streefkerk supported and instructed the patients. Software was
References (28)
- et al.
Continuity of information in cancer care: evaluation of a logbook
Patient Educ. Couns.
(1997) - et al.
A computerized cancer information system
Patient Educ. Couns.
(1992) - et al.
Effects of contact between cancer patients on their psychosocial problems
Patient Educ. Couns.
(1987) Coping with stress in cancer patients
Patient Educ. Couns.
(1983)- Committee on Quality of Health Care in America IoM, To Err Is Human: Building a Safer Health System, National Academy...
- Committee on Quality of Health Care in America IoM, Crossing the Quality Chasm: A New Health System for the 21st...
Reference standards in evaluating system performance
J. Am. Med. Inform. Assoc.
(2002)- W. Hersh, J. Wallace, P. Patterson, Telemedicine for the Medicare Population. Summary, Evidence Report/Technology...
- et al.
Evaluation Methods in Medical Informatics
(1997) - et al.
Knelpunten in de zorg voor hoofd-halstumorpatiënten (Bottlenecks in providing care to head and neck cancer patients)
Medisch Contact
(1991)
Shared care: a review of the literature
Fam. Pract.
Measuring the continuity and coordination of medical care in a system involving multiple providers
Med. Care
An information system to support the care for head and neck cancer patients
Support Care Cancer
CHESS: an interactive computer system for women with breast cancer piloted with an under-served population
Proc. Annu. Symp. Comput. Appl. Med. Care
Cited by (48)
Physician satisfaction with telemedicine and in-person visits in otolaryngology
2022, American Journal of Otolaryngology - Head and Neck Medicine and SurgeryCitation Excerpt :It is difficult to directly compare these scores to our results as there was significant heterogeneity in the study setting, type of telemedicine service provided, questions asked, and type of provider who filled out the satisfaction questionnaire [6,12,17–21,23]. Studies published prior to the COVID-19 pandemic examined satisfaction of various types of providers (i.e., general practitioners [18,19], speech pathologists [20], and rural otolaryngologists [6,21]) involved in the pilot implementation of a specific telemedicine service. A majority of these studies assessed physician satisfaction using 1–2 questions asking physicians [18,19,21,23] to rate the overall satisfaction with the telemedicine sessions and the quality of image and audio [2,6].
Digitalized healthcare for head and neck cancer patients
2021, Journal of Stomatology, Oral and Maxillofacial SurgeryCitation Excerpt :Rimmer et al., reported telemonitoring to be safe for the postoperative follow-up in a large population of patients (n = 255) [15]. Indeed, telemonitoring enabled early detection of the occurrence of health problems (pain, speech, swallowing, tracheostomy canula…) requiring direct intervention by different stakeholders (n = 36 HNC patients, n = 24 caregivers/patricians) [16]. Interestingly, Lyu et al., recently investigated the feasibility and benefits of the “WeChat” application, for the clinical follow‐up of 99 HNC patients [17].
Oral & Maxillofacial surgery is ready for patient-centred eHealth interventions − the outcomes of a scoping review
2019, International Journal of Oral and Maxillofacial SurgeryCitation Excerpt :All of these interventions facilitated interaction with fellow sufferers, in one case by means of a peer joining a teleconsultation session.23 According to the MRC framework, the majority of the papers (27 out of 41) fitted into the feasibility and piloting phase.6,22–26,28–30,32,34,35,39,41,44–54,56,57 Seven papers reported on the development of interventions.7,21,31,33,38,40,43
Fear of recurrence significantly influences quality of life in oral cancer patients
2012, Oral OncologyCitation Excerpt :For patients anxiety and experience of impairment of important life functions because of the illness and therapy weigh more heavily.3,11–13 Differences concerning the level of information of patients and doctors are to be seen in this connection.14–16 Anxiety, especially fear of recurrence of cancer, can have an influence on the patients’ level of information.
Evaluation of a remote monitoring app in head and neck cancer follow-up care
2023, Cancer Medicine