Managing chemotherapy symptoms via mobile phones
Maguire, R. et al (2008) Managing chemotherapy symptoms via mobile phones. This is an extended version of the article published in Nursing Times; 104: 22, 28-29.
BACKGROUND: Changes in cancer services to outpatient care have resulted in patients spending limited time in hospital. The use of IT within healthcare has seen the development of innovative ways to support patients in the community.
AIM: This study aimed to test the procedures and technical systems involved in using an advanced symptom management system (ASyMS-) in the home monitoring and symptom management of patients receiving chemotherapy.
METHOD: Ten patients were recruited from two centres in Scotland. Patients in the intervention group used the mobile phone to record and send their symptom reports to their hospital and receive self-care advice, while the control group received standard care. A risk model was developed which alerted healthcare professionals of symptoms that were severe or life-threatening. Patient and nurse perceptions were evaluated throughout.
RESULTS: Patients believed the system improved the management of symptoms and felt reassured they were being monitored at home. Nurses also found the system beneficial in managing symptoms and promoting timely interventions. The full randomised controlled trial is now underway.
CONCLUSION: The ASyMS system has the potential to improve the management of symptoms in patients with cancer receiving chemotherapy.
Roma Maguire, MSc, BN, RGN, is research fellow; Morven Miller, MSc, RGN, is senior research fellow; Lisa McCann, MSc, BS, is research assistant; Lesley Taylor, BN, is research assistant; Nora Kearney, MSc, RGN, is professor of cancer care; all at Cancer Care Research Centre, Department of Nursing and Midwifery, University of Stirling; Meurig Sage, PhD, BSc, is managing director at Kelvin Connect Ltd, Hillington Park Innovation Centre, Glasgow; John Norrie, MSc, is director at Centre for Healthcare Randomised Trials, Health Services Research Unit, University of Aberdeen.
Recent changes to the delivery of cancer services (Scottish Executive, 2005) mean that patients frequently receive chemotherapy as outpatients and need to manage the majority of side-effects at home without the direct support of healthcare professionals. As hospital stays are becoming shorter, many patients have less time to receive information and consequently are left feeling anxious and perceive themselves as having a lack of control over their illness and treatment.
Healthcare professionals caring for these patients have fewer opportunities to assess and monitor symptoms and so are less able to offer guidance on self-care strategies that may be employed (McCaughan and Thomson, 2000).
There is increasing interest in the development of innovative approaches to support patients in the community through the use of information technology (Department of Health, 2005; Scottish Executive, 2005).
Such technological applications may be well suited to the remote monitoring and management of chemotherapy-related toxicity, which includes side-effects such as nausea and vomiting, diarrhoea, mucositis, neutropenia, palmar-plantar erythrodysesthesia (hand/foot syndrome) and fatigue.
Current symptom management strategies in patients with cancer rely on retrospective reporting (National Cancer Institute, 2003). So the monitoring and reporting of ‘real time’ symptom information may improve the accuracy and completeness of symptom reports. This may ultimately improve the effectiveness of symptom management strategies in this patient group.
The results of a feasibility study conducted by some of the authors of this article (Kearney et al, 2006), highlighted the practicability and acceptability for both patients and healthcare professionals of the use of a handheld computer-based tool in the symptom assessment and management of chemotherapy-related toxicity. This current study builds on this preliminary work and aimed to evaluate the effectiveness of using an advanced symptom management system (ASyMS-) in the home monitoring and symptom management of patients receiving chemotherapy for colorectal, lung and breast cancer.
This article reports the findings of the pilot study in relation to patients’ and nurses’ perceptions of using the ASyMS system in the assessment and management of chemotherapy-related toxicity.
The aim of this pilot study was to test all aspects of a large, multicentre, randomised, controlled trial of a mobile phone-based advanced symptom management system (ASyMS) in the remote monitoring of chemotherapy-related toxicity with standard symptom management. This included testing of all related study procedures and adherence to agreed protocols as well as patient and nurse perceptions of using the system.
This pilot study was a randomised, controlled trial of ASyMS against standard symptom management. The 10 patients who had breast, lung or colorectal cancer were starting a new course of chemotherapy treatment and were deemed to be physically and psychologically fit to participate in the study.
Ethical approval was granted at each clinical site and all patients gave written informed consent before being recruited to the study.
A purposive sample of nurses involved in using the ASyMS system took part in the study to identify their expected and actual perceptions of using the system. A total of four nurses consented to participate.
Data collection instruments and procedures
Data collection took place between January and February 2006. Four patients were randomised to receive the study intervention and six patients to the control arm of the study. Symptom data was collected using an integration of the Common Toxicity Criteria Adverse Events (CTCAE) grading system (National Cancer Institute, 2003) and the Chemotherapy Symptom Assessment Scale (Brown et al, 2001).
Six common chemotherapy-related symptoms were selected for investigation: nausea, vomiting, mucositis, hand-foot syndrome, diarrhoea and fatigue. Patient and healthcare professional perceptions were evaluated using a combination of semi-structured questionnaires and interviews developed by the research team at the start and end of the study.
The ASyMS system was developed following evaluation of an earlier feasibility study of the use of handheld computers to monitor and support patients receiving chemotherapy (Kearney et al, 2006) and phase I (beta testing) of the current study. The beta phase was designed to identify and resolve issues or problems experienced by patients and professionals in relation to the symptom management system and tested data input, retrieval and connectivity issues.
Designated healthcare professionals from each site attended either a number of in-house sessions or were invited to attend a one-day organised ‘hands-on’ training day.
A team of dedicated nursing staff at the two sites provided patients with training on how to use the ASyMS system. Patients were encouraged to contact the project nurse if they experienced any problems, who in turn contacted the researchers if these issues could not be rectified.
On days 1-14 following their first cycle of chemotherapy (in the morning, evening and at any time they felt unwell), patients in the intervention group were asked to:
Complete an electronic copy of the symptom questionnaire on their mobile phone;
Take their temperature using an electronic thermometer and enter this value into the mobile phone as indicated;
Immediately send this ‘real time’ symptom information via a secured General Packet Radio Services (GPRS) connection to the study server.
A risk model was developed and incorporated into the study software, which was used to alert healthcare professionals based at the clinical site, via a dedicated 24-hour pager system, of any incoming readings that were of concern.
An ‘amber alert’ was used to alert clinicians of patients who were experiencing toxicities at home that were not severe or life-threatening, but in which early intervention may prove to be effective in preventing further progression of the symptoms reported.
A ‘red alert’ was used to inform clinicians that patients were pyrexial and/or experiencing toxicities at home that are severe or life-threatening and were advised to contact patients as soon as possible.
In the event of either an amber or red alert, healthcare professionals involved in the project had access to a secure web page in which to view the patient’s symptom reports and assist in their clinical decision-making.
After completing the electronic symptom questionnaire, patients also received tailored self-care advice on their mobile phone, which was directly related to the severity of their symptoms. See Fig 1 for details on how the ASyMS system works.
Patients in the control group received standard care. This was care provided according to local treatment guidelines and protocols. They were also asked to complete a paper copy of the electronic symptom questionnaire at baseline and at their pre-cycle 2 assessment.
Nurses involved in the study (n=4) were asked to complete a semi-structured questionnaire at baseline and at the end of the study to evaluate their perspectives of using the ASyMS system. They were also asked to participate in an interview at the end of the study to discuss their experiences of using the system. In addition, they were requested to:
Keep a log of all generated alerts and subsequent interventions for patients in the intervention group;
Grade the appropriateness of the alerts received;
Keep a log of relevant interventions and associated hospitalisation for patients in the control arm of the study.
Data analysis methods
Data collected was summarised using SPSS Version 12.0 for Windows. Descriptive statistics were used to analyse the closed questions of the perception questionnaires. Thematic content analyses of the open questions was undertaken with the aim of generating common themes concerning patients’ perspectives of their experiences during the study and through this, develop a more in-depth understanding of perceptions on ease and benefits of using the ASyMS system.
The research team read the responses several times to become highly familiar with their content and to categorise respondents’ accounts in a way that could be summarised. This was essentially a comparative process in which the various responses to the open questions were compared with each other to classify themes that recur or were common throughout.
A total of 10 patients, age range 44-74 years, were randomised to either the intervention (n=4) or control group (n=6). All the patients were female. Nine patients had breast cancer and one patient had lung cancer. Four nurses also consented to participate in the study, all of whom were also female.
Pre-study perception questionnaire: Patients’ perceptions (n=3) were explored through a semi-structured questionnaire. All patients felt the ASyMS system would help in the management of their symptoms and perceived they would feel comfortable in using the handset to report their chemotherapy symptoms. Two out of three thought the system would improve communication with doctors and nurses. Patients expected their overall experience of the study to be rewarding, valuable, interesting, time-consuming, challenging and educational.
Post-study perception questionnaire: Patients’ perceptions (n=4) were explored using a semi-structured questionnaire at the end of the study. All patients felt they had received adequate training with most (n=3) feeling very comfortable in using the handset.
Most patients accessed the self-care advice (n=3), with two reporting they did this every time they completed a symptom report. All patients found the ASyMS system helpful in monitoring and management of symptoms and that it assisted them in communicating with nurses and doctors.
No patients found the system interrupted their daily routine and all were satisfied with the care they received as a result of using the system. Most described their overall experience of being involved in the study as rewarding, valuable, educational and interesting.
Post-study: patient interviews: Semi-structured interviews were conducted at the end of the study with three patients who had received the intervention. A number of common themes were identified. As in the perception questionnaires, no patients reported any issues in relation to training in using the handset and felt the training they received was adequate.
Patients found the system reassuring and felt that it helped them in managing symptoms. In relation to the self-care advice, one talked about how she had used it to assist in symptom management. However, not all patients used this facility with one stating that she only used the symptom reporting part of the system.
Healthcare professionals’ perceptions
Pre-study perception questionnaire: Nurses’ perceptions (n=2) were explored using semi-structured questionnaires. Both felt that the ASyMS system would be helpful in monitoring patients’ symptoms and would enable them to be managed better. They anticipated that the system would help in the early detection of symptoms and one felt it would assist in implementing timely interventions.
Post-study: perception questionnaire: One nurse completed the post-study questionnaire. Overall, she felt she had received adequate training in relation to the ASyMS system. She felt it was helpful in managing symptoms and improved communication between patients and healthcare professionals.
Post-study interviews: Four nurses were interviewed about their experiences throughout the study. All participants perceived the training they received from the study organisers was adequate. However, the cascade of this to other staff (for example night staff) involved in the project appeared to be problematic.
When asked about the alerting system, the nurses described this as being too sensitive and too responsive to minor symptoms. Some healthcare professionals felt that contacting the patient at home would be bothersome to them.
Nurses appeared to be positive about the website as they could see symptoms developing and it provided them with information on the patient’s condition before contacting them.
In relation to the self-care advice, most participants thought this was adequate and acted as a resource for patients to use when required.
When asked about their overall experience of being involved in the study, nurses’ perceptions appeared to be positive with acknowledgement of the potential of the system in promoting timely interventions and improving overall symptom management.
The potential benefits to patients in rural areas and those suffering from severe toxicities were mentioned.
A number of small changes were made to the system on the basis of the results from the pilot phase. The first was an additional question to the symptom questionnaire that asks patients to indicate whether they are at home or in hospital. Second, patients will be reminded after completing 14 days of data collection that they should no longer use the device to collect symptom information until their next cycle of chemotherapy. Third, the alerting criteria for temperature values have been modified in relation to feedback from nurses throughout this phase of the study.
From this pilot study, it appears that overall, both patient and nurse perceptions of using the ASyMS system in the remote monitoring of chemotherapy-related toxicity are positive, with both groups acknowledging the potential benefits of the system in improving the symptom management of patients receiving chemotherapy.
Patients felt that they had received adequate training in using the handset and experienced no problems in its use. Furthermore, no patients stated they had any problems in viewing or completing the symptom questionnaire or that it had interrupted their daily routine. This is likely to have been due to the simple design of the questionnaire and patients’ perception of the study’s relevance to their needs. Patients felt the ASyMS system had contributed to the management of symptoms and facilitated communication between themselves and their healthcare professionals based at the hospital. Patients felt reassured and relaxed knowing that their symptoms were being monitored at home.
Those healthcare professionals involved, despite some being sceptical at the start of the study, could see the potential benefits of using the system in early detection and management of chemotherapy-related toxicity. They viewed content of the symptom questionnaire and self-care advice as adequate in relation to the sample of study participants. Furthermore, they experienced no problems in accessing patients’ symptom reports on the secure website and felt it displayed all the relevant clinical information they required. Overall perceptions of using the ASyMS system included the prevention of hospitalisations, seeing patients getting better, being able to reassure patients and being able to view patterns of emerging toxicities with ‘real time’ symptom information.
The study does have a number of limitations that the authors wish to acknowledge. First and foremost, a significant number of both pre and post-perception questionnaires were not completed by designated nurses involved in the project.
Only two participants completed the pre-study questionnaire and one participant completed the post-study questionnaire, despite a total of four nurses consenting to participate in the project.
Therefore, it must be acknowledged that the opinion of those participants who did not respond may differ from those reported in this article. Furthermore, no data was collected on participants who declined the study, which may have informed subsequent recruitment procedures.
The results of this study demonstrate that the ASyMS system has the potential to improve the management of symptoms in patients with breast, lung and colorectal cancer receiving chemotherapy. This tool allows patients to collect symptom information and send it directly to their clinical site, allowing healthcare professionals to monitor their condition in the community.
The system also provides patients with access to evidence-based, tailored self-care information, which may promote the management of symptoms by enhancing their knowledge, empowerment and control.
For healthcare professionals, the alerting system may promote the initiation of timely interventions and access to an electronic patient record, containing accurate and up-to-date information on patients’ symptoms, which may enhance their understanding of patients’ symptom experiences.
In terms of integrating IT and healthcare, the results highlight the potential of such a system to provide an extremely rich pool of symptom information, which can be collected easily and effectively in an electronic format. Following the outcomes of the study, a full randomised controlled trial is under way.
This work was first published in Clinical Effectiveness in Nursing. The reference is: Maguire et al (2006) Results of a UK based pilot study of a mobile phone-based advanced symptom management system (ASyMS) in the remote monitoring of chemotherapy-related toxicity; Clinical Effectiveness in Nursing; 9: 3-4, 202-10. This article is based on the research reported in the original publication.
Brown, V. et al (2001) The development of the Chemotherapy Symptom Assessment Scale (C-SAS): a scale for the routine clinical assessment of the symptom experiences of patients receiving cytotoxic chemotherapy. International Journal of Nursing Studies; 38: 5, 497-510.
Department of Health (2005) Supporting People with Long Term Conditions: An NHS and Social Care Model to Support Local Innovation and Integration. www.dh.gov.uk
Kearney, N. et al. (2006) Utilising handheld computers to monitor and support patients receiving chemotherapy - results of a UK based feasibility study. Supportive Care in Cancer; 14: 7, 742-52.
McCaughan, E., Thompson, K. (2000) Information needs of cancer patients receiving chemotherapy at a day-case unit in Northern Ireland. Journal of Clinical Nursing; 9: 6, 851-858.
National Cancer Institute (2003) Common Toxicity Criteria. Bethesda, MD, US: NCI, Division of Cancer Treatment.
Scottish Executive (2005) A National Framework for Service Change in the NHS in Scotland. www.scotland.gov.uk