An information system to support the care for head and neck cancer patients

Abstract

The potential of Information and communication technology (ICT) as a method to improve care is widely acknowledged. However, before ICT can be used in a specific patient population, the needs of that population must first be made explicit. In this paper we aim to explore the feasibility and functionality of an electronic information system to support head and neck (H&N) cancer care. We describe communication and information bottlenecks in supportive care for H&N cancer patients. These bottlenecks were used to determine the functionality of an electronic health information support system. We discern three perspectives of problems in H&N cancer care: lacking communication among professionals, lacking information about the disease and its treatment, and lacking supportive measures to reduce uncertainty and fear in patients. To support care, an information support system can facilitate (1). communication among all professionals involved and between professionals and patients, (2). professionals' and patients' access to information, (3). contact with fellow sufferers, and (4). early detection of patient problems by means of monitoring. Based on these analyses we subsequently built such a system and established a setting for evaluation. Information and communication technology can be tailored to address the communication and information bottlenecks in supportive H&N cancer care. As we aim to investigate whether care for H&N cancer patients may benefit from ICT, we are currently performing a clinical evaluation study.

Implementation of the Vienna Hydrotherapy Group for Laryngectomees?a pilot study

“…The reasons for this lack might include fear of fatal aspiration and poor information on supportive devices [15,18,21,25]. However, it is well known that laryngectomized patients can safely pursue swimming provided they use appropriate aids [6,10,11,12,15,17,22,23].…”

“…For laryngectomized patients, contact with water in the absence of suitable aids can be fatal on account of the risk of aspiration. Thus, the risk of drowning while participating in aquatic activities is very real [15,18,21,25]. Laryngectomized patients who lack suitable aids are usually barred from swimming, bathing, basic measures of hygiene such as taking a bath in a bathtub, and from rehabilitation programs involving hydrotherapy.…”

Development of a Telehealth Intervention for Head and Neck Cancer Patients

“…The literature review preparatory to this research revealed one previous use of a telemedicine support system for head and neck cancer patients in the Netherlands, Between 1999 and 2002, investigators at the Erasmus Medical Center in Rotterdam, The Netherlands, conducted a controlled clinical trial evaluating the impact of a telemedicine application on the quality of life of patients undergoing surgery for head and neck cancer 29–31. Patients in the experimental group were able to access an electronic health information support system for 6 weeks after hospital discharge.…”

My Road Ahead study protocol: a randomised controlled trial of an online psychological intervention for men following treatment for localised prostate cancer

“…van den Brink [30] developed an online information and support intervention for head and neck cancer patients in the Netherlands with the aim of overcoming the communication and information bottlenecks in supportive head and neck cancer care. The authors reported that patient use and satisfaction with the intervention was very high despite patients having recently undergone intensive surgical treatment.…”

“…Patient age was not a barrier (mean age 59 years and range 38-78) and, despite 56% of participants having limited computer experience prior to the use of the intervention, consistently positive feedback was received. This online support intervention showed improved QoL outcomes in participants as compared to those in a control group who did not access the intervention [30]. However, the intervention focused on psycho-education and support rather than skills in coping with the experience of cancer diagnosis, treatment and recovery.…”