Roma Maguire

Evaluation of a mobile phone-based, advanced symptom management system (ASyMS©) in the management of chemotherapy-related toxicity

ObjectivesTo evaluate the impact of a mobile phone-based, remote monitoring, advanced symptom management system (ASyMS©) on the incidence, severity and distress of six chemotherapy-related symptoms (nausea, vomiting, fatigue, mucositis, hand–foot syndrome and diarrhoea) in patients with lung, breast or colorectal cancer.DesignA two group (intervention and control) by five time points (baseline, pre-cycle 2, pre-cycle 3, pre-cycle 4 and pre-cycle 5) randomised controlled trial.SettingSeven clinical sites in the UK; five specialist cancer centres and two local district hospitals.ParticipantsOne hundred and twelve people with breast, lung or colorectal cancer receiving outpatient chemotherapy.InterventionsA mobile phone-based, remote monitoring, advanced symptom management system (ASyMS©).Main outcome measuresChemotherapy-related morbidity of six common chemotherapy-related symptoms (nausea, vomiting, fatigue, mucositis, hand–foot syndrome and diarrhoea).ResultsThere were significantly higher reports of fatigue in the control group compared to the intervention group (odds ratio = 2.29, 95%CI = 1.04 to 5.05, P = 0.040) and reports of hand–foot syndrome were on average lower in the control group (odds ratio control/intervention = 0.39, 95%CI = 0.17 to 0.92, P = 0.031).ConclusionThe study demonstrates that ASyMS© can support the management of symptoms in patients with lung, breast and colorectal cancer receiving chemotherapy.

Exercise intervention for patients surgically treated for Non-Small Cell Lung Cancer (NSCLC): a systematic review.

BACKGROUND Surgery remains the best curative option for appropriately selected patients with lung cancer. Evidence suggests that improving cardiovascular fitness and functional capacity can accelerate post-surgery recovery and reduce mortality. However, the effect of exercise intervention for patients surgically treated for Non-Small Cell Lung Cancer [NCSLC] has not been fully examined. PURPOSE This review examines the literature regarding exercise intervention for patients who are surgically treated for NSCLC focussing on three key areas: methodological quality, intervention design (e.g. duration, frequency, type) and outcomes measured. METHODS A search of Medline, EMBASE, CINAHL and PsychINFO was undertaken. Randomised Controlled Trials [RCTs] and non-RCTs including exercise training pre or post lung cancer resection were included. Descriptive characteristics were extracted and methodological quality assessed using Downs and Black appraisal checklist. RESULTS Twenty studies (eight RCTs) were included: nine pre-surgical, nine post-surgical and two pre to post-surgical. The quality of evidence is questionable with many limitations (e.g. small samples, inadequate allocation concealment and a lack of clear reporting on timing, adverse events and follow-up). Regarding design of exercise intervention and outcomes measured, there was much variation between studies producing a disparate set of data. An optimal programme is still to be determined; however, suggestions are made relating to type of exercise (i.e. mixing aerobic, resistance and breathing exercises). Preliminary work from this review suggests that exercise intervention compared with usual care both pre and post-surgery is associated with improved cardiopulmonary exercise capacity, increased muscle strength and reduced fatigue, post-operative complications and hospital length of stay. Results concerning pulmonary function, quality of life, and blood gas analysis were variable and inconsistent. CONCLUSION In order to implement exercise intervention appropriate for patients surgically treated for NCSLC, more high quality randomised controlled trials are required and more work concerning feasibility, acceptability and effectiveness of specific interventions on outcomes is warranted.

Involving health professionals in the development of an advanced symptom management system for young people: The ASyMS©-YG study

PURPOSE OF THE STUDY ASyMS is an advanced symptom management system utilising mobile phone technology for patients to report cancer chemotherapy-related symptoms. The aim of this paper is to present health professionals involvement in the development of ASyMS for use with young people (YG) and evaluate their perceptions of the system. STAGE 1: Health professionals reviewed the symptoms chosen by young people to be included on the personal digital assistant questionnaire to confirm they would have universal relevance. These included: mouth sores, nausea, diarrhoea, vomiting and weight loss. STAGE 2: Health professionals completed a questionnaire prior to the study commencing, which suggested they felt ASyMS-YG would give young people control and facilitate timely interventions when symptoms occur. Post-study perceptions were sought through semi-structured interviews and consultation sessions with 23 health professionals. These showed two over-arching themes: young peoples symptoms and perceptions of ASyMS-YG; and six sub-themes: increased control for young people; enhances communication between young people and health professionals; and helps with professional early intervention; increased support for young people; improve knowledge and understanding; technology appealing to young people. CONCLUSIONS This early development work indicates that ASyMS-YG is acceptable to health professionals and their perceptions of the system were overall very positive. Health professionals will continue to be involved in the study through developing self-care guidelines and alert system, which will be tested in an exploratory trial (stage 3) and randomised controlled trial (stage 4) in the future.

Utilization of the medical research council evaluation framework in the development of technology for symptom management: the ASyMS©-YG study

Background: Technology is becoming an important medium for supporting patients in health care. However, successful application depends on user acceptability. The Advanced Symptom Management System (ASyMS©) involves patients reporting cancer chemotherapy-related symptoms using mobile phone technology. Objective: The aim of this article was to report a study of how young people were involved in the development of ASyMS© using the Medical Research Council framework for evaluating complex interventions. Methods: A convenience sample of young people aged 13 to 18 years undergoing cancer chemotherapy were recruited from 2 principal cancer treatment centers in London. Results: In phase 1, young people selected 5 symptoms from an adapted version of the Memorial Symptom Assessment Scale that were most important to them. In phase 2, young people completed the ASyMS©-YG PDA (personal digital assistant) questionnaire daily on days 1 to 14 of a cycle of chemotherapy and pre/post-use questionnaires. In phase 1, 5 young people chose diarrhea, nausea, vomiting, constipation, and weight loss as the most important symptoms. In phase 2, 25 young people reported positively to using PDA technology, found ASyMS©-YG simple and easy to complete, and liked that they were monitored at home. In addition to the 5 core symptoms, the ASyMS©-YG reports showed the number (n = 37) of other symptoms young people experienced. Conclusions: This early development work indicates the acceptability of ASyMS©-YG and has informed an exploratory trial (phase 3) and randomized controlled trial (stage 4). Implications for Practice: This study reaffirms the importance of promoting communication between young people and health professionals.

A systematic review of the supportive care needs of women living with and beyond cervical cancer

BACKGROUND Women with cervical cancer constitute a patient population in need for ongoing, person-centred supportive care. Our aim was to synthesise current available evidence with regard to the supportive care needs of women living with and beyond cervical cancer. METHODS A systematic review was conducted according to the PRISMA Statement guidelines. Seven electronic databases (DARE, Cochrane, MEDLINE, CINAHL, BNI, PsychINFO and EMBASE) were searched to identify studies employing qualitative and/or quantitative methods. Pre-specified selection criteria were applied to all records published between 1990 and 2013. Methodological quality evaluation was conducted using the standardised QualSyst evaluation tool. Findings were integrated in a narrative synthesis. FINDINGS Of 4936 references initially retrieved, 15 articles (13 unique studies) met eligibility criteria. One study fell below a pre-specified 55% threshold of methodological quality and was excluded. Individual needs were classified into ten domains of need. Interpersonal/intimacy (10; 83.3%), health system/information (8; 66.7%), psychological/emotional (7; 58.3%) and physical needs (6; 50%) were those most frequently explored. Spiritual/existential (1; 8.3%), family-related (2; 16.7%), practical (2; 16.7%), and daily living needs (2; 16.7%) were only rarely explored. Patient-clinician communication needs and social needs were addressed in 4 studies (33.3%). Dealing with fear of cancer recurrence, concerns about appearance/body image, lack of sexual desire, requiring more sexuality-related information, dealing with pain, and dealing with difficulties in relationship with partner were the most frequently cited individual needs (≥4 studies). CONCLUSIONS Despite a host of additional needs experienced by women with cervical cancer, a predominant focus on sexuality/intimacy and information seeking issues is noted. Study limitations preclude drawing conclusions as to how these needs evolve over time from diagnosis to treatment and subsequently to survivorship. Whether demographic or clinical variables such as age, race/ethnicity, disease stage or treatment modality play a moderating role, only remains to be answered in future studies.

Cancer Survivors’ Experience With Telehealth: A Systematic Review and Thematic Synthesis

Background Net survival rates of cancer are increasing worldwide, placing a strain on health service provision. There is a drive to transfer the care of cancer survivors—individuals living with and beyond cancer—to the community and encourage them to play an active role in their own care. Telehealth, the use of technology in remote exchange of data and communication between patients and health care professionals (HCPs), is an important contributor to this evolving model of care. Telehealth interventions are “complex,” and understanding patient experiences of them is important in evaluating their impact. However, a wider view of patient experience is lacking as qualitative studies detailing cancer survivor engagement with telehealth are yet to be synthesized. Objective To systematically identify, appraise, and synthesize qualitative research evidence on the experiences of adult cancer survivors participating in telehealth interventions, to characterize the patient experience of telehealth interventions for this group. Methods Medline (PubMed), PsychINFO, Cumulative Index for Nursing and Allied Health Professionals (CINAHL), Embase, and Cochrane Central Register of Controlled Trials were searched on August 14, 2015, and March 8, 2016, for English-language papers published between 2006 and 2016. Inclusion criteria were as follows: adult cancer survivors aged 18 years and over, cancer diagnosis, experience of participating in a telehealth intervention (defined as remote communication or remote monitoring with an HCP delivered by telephone, Internet, or hand-held or mobile technology), and reporting qualitative data including verbatim quotes. An adapted Critical Appraisal Skill Programme (CASP) checklist for qualitative research was used to assess paper quality. The results section of each included article was coded line by line, and all papers underwent inductive analysis, involving comparison, reexamination, and grouping of codes to develop descriptive themes. Analytical themes were developed through an iterative process of reflection on, and interpretation of, the descriptive themes within and across studies. Results Across the 22 included papers, 3 analytical themes emerged, each with 3 descriptive subthemes: (1) influence of telehealth on the disrupted lives of cancer survivors (convenience, independence, and burden); (2) personalized care across physical distance (time, space, and the human factor); and (3) remote reassurance—a safety net of health care professional connection (active connection, passive connection, and slipping through the net). Telehealth interventions represent a convenient approach, which can potentially minimize treatment burden and disruption to cancer survivors’ lives. Telehealth interventions can facilitate an experience of personalized care and reassurance for those living with and beyond cancer; however, it is important to consider individual factors when tailoring interventions to ensure engagement promotes benefit rather than burden. Conclusions Telehealth interventions can provide cancer survivors with independence and reassurance. Future telehealth interventions need to be developed iteratively in collaboration with a broad range of cancer survivors to maximize engagement and benefit.

Development of a Novel Remote Patient Monitoring System: The Advanced Symptom Management System for Radiotherapy to Improve the Symptom Experience of Patients With Lung Cancer Receiving Radiotherapy

Background: The use of technology-enhanced patient-reported outcome measures to monitor the symptoms experienced by people with cancer is an effective way to offer timely care. Objective: This study aimed to (a) explore the feasibility and acceptability of the Advanced Symptom Management System with patients with lung cancer receiving radiotherapy and clinicians involved in their care and (b) assess changes in patient outcomes during implementation of the Advanced Symptom Management System with patients with lung cancer receiving radiotherapy in clinical practice. Methods: A repeated-measures, single-arm, mixed-methods study design was used involving poststudy interviews and completion of patient-reported outcome measures at baseline and end of treatment with 16 patients with lung cancer and 13 clinicians who used this mobile phone–based symptom monitoring system. Results: Only rarely did patients report problems in using the handset and they felt that the system covered all relevant symptoms and helped them to manage their symptoms and effectively communicate with clinicians. Clinical improvements in patient anxiety, drowsiness, and self-care self-efficacy were also observed. Clinicians perceived the use of “real-time” risk algorithms and automated self-care advice provided to patients as positively contributing to clinical care. Reducing the complexity of the system was seen as important to promote its utility. Conclusions: Although preliminary, these results suggest that monitoring patient symptoms using mobile technology in the context of radiotherapy for lung cancer is feasible and acceptable in clinical practice. Implications for practice: Future research would be most beneficial if the use of this technology was focused on the postradiotherapy phase and expanded the scope of the system to encompass a wider range of supportive care needs.

The eSMART study protocol: a randomised controlled trial to evaluate electronic symptom management using the advanced symptom management system (ASyMS) remote technology for patients with cancer

Introduction While some evidence exists that real-time remote symptom monitoring devices can decrease morbidity and prevent unplanned admissions in oncology patients, overall, these studies have significant methodological weaknesses. The electronic Symptom Management using the Advanced Symptom Management System (ASyMS) Remote Technology (eSMART) study is designed to specifically address these weaknesses with an appropriately powered, repeated-measures, parallel-group stratified randomised controlled trial of oncology patients. Methods and analysis A total of 1108 patients scheduled to commence first-line chemotherapy (CTX) for breast, colorectal or haematological cancer will be recruited from multiple sites across five European countries. Patients will be randomised (1:1) to the ASyMS intervention (intervention group) or to standard care currently available at each site (control group). Patients in the control and intervention groups will complete a demographic and clinical questionnaire, as well as a set of valid and reliable electronic patient-reported outcome measures at enrolment, after each of their CTX cycles (up to a maximum of six cycles) and at 3, 6, 9 and 12 months after completion of their sixth cycle of CTX. Outcomes that will be assessed include symptom burden (primary outcome), quality of life, supportive care needs, anxiety, self-care self-efficacy, work limitations and cost effectiveness and, from a health professional perspective, changes in clinical practice (secondary outcomes). Ethics and dissemination Ethical approval will be obtained prior to the implementation of all major study amendments. Applications will be submitted to all of the ethics committees that granted initial approval. eSMART received approval from the relevant ethics committees at all of the clinical sites across the five participating countries. In collaboration with the European Cancer Patient Coalition (ECPC), the trial results will be disseminated through publications in scientific journals, presentations at international conferences, and postings on the eSMART website and other relevant clinician and consumer websites; establishment of an eSMART website (www.esmartproject.eu) with publicly accessible general information; creation of an eSMART Twitter Handle, and production of a toolkit for implementing/utilising the ASyMS technology in a variety of clinical practices and other transferable health care contexts. Trial registration number NCT02356081.

The use of technology in cancer care: applying Foucault's ideas to explore the changing dynamics of power in health care

AIM This study is a report to identify the utility of a hand-held side-effect monitoring system for people receiving chemotherapy in the home care setting. BACKGROUND Increasingly, health care is being provided in peoples own homes and communities rather than in hospitals. This has driven the development of technologies which support patients in the home environment. The meaning of such technologies can be explored from a Foucauldian perspective to shed light on how they enable new forms of medical surveillance. METHOD An intervention study was performed in 2006 using new technologies for people receiving chemotherapy. Questionnaires were completed by 56 people affected by cancer who used the new technology; 12 of these people were then interviewed. Secondary analysis of the interview data is presented in this paper, drawing on Foucaults writing about surveillance and power in medical settings. FINDINGS The interview transcripts contain numerous examples of people affected by cancer reflecting on issues such as power and surveillance in cancer care. While these terms are ordinarily considered to reflect negative elements of care, they were used by participants in an empowering manner. CONCLUSION Theoretical insights can help nurses to think critically about the advances of technology. In particular, there are implications for how nurses consider the relationship of technology to patients and for power dynamics in healthcare relationships. We suggest that there is a need to problematize and celebrate the growth of technologically-driven health surveillance.

The development of a side effect risk assessment tool (ASyMS©-SERAT) for use in patients with breast cancer undergoing adjuvant chemotherapy

Abstract Patients with breast cancer receiving chemotherapy are at risk of developing toxicities which can be severe or life threatening. The aim of this study was to develop and test a side effect risk modeling tool (ASyMS©-SERAT) for use in patients with breast cancer undergoing adjuvant chemotherapy. The study was conducted in two phases. Phase 1 entailed the development of the ASyMS©-SERAT tool using a secondary data set and in collaboration with an expert group of clinicians and an advisory group of patients. In phase 2, the predictive accuracy of the tool was measured using a prospective data set of 24 patients with breast cancer undergoing adjuvant chemotherapy. A high level of accuracy was reported for four of the six symptoms measured (>70%) supporting the future development and application of ASyMS©-SERAT in the prediction of chemotherapy-related toxicity. For patients, such information can be used to target information on side effects that they are likely to experience thereby facilitating the provision of tailored information based on their individual needs. For clinicians, knowing the likelihood of potential side effects can assist them in identifying patients who are at greater risk of developing certain toxicities, facilitating more targeted and cost-effective interventions.