Lisa McCann

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.

The experiences, needs and concerns of younger women with breast cancer: a meta-ethnography

Objective: This meta‐ethnography synthesises the evidence on the experiences, needs and concerns of younger women with breast cancer.

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.

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.

Adults with intellectual disabilities affected by cancer: critical challenges for the involvement agenda

Cancer incidence and prevalence in people with intellectual disabilities are poorly documented. Changing demographic patterns, however, mirror those in the general population with increased longevity leading to higher numbers of people developing cancer in the future. Little is known about the service and support needs of this group, but there is a precedent to understand their experiences to inform research and service development if appropriately tailored approaches are to be adopted. This article outlines a project that sought to develop an advisory forum of adults with intellectual disabilities affected by cancer, to inform the development of a research agenda. The process of this work is described alongside a critical appraisal of the tensions in involving people with intellectual disabilities as advisors on cancer research and practice. We discuss and challenge the underlying ideologies, which lie in the path of fully engaging with marginalized patients.

Real-time management of chemotherapy toxicity using the Advanced Symptom Management System (ASyMS).

This paper describes an ongoing study of the Advanced Symptom Management System (ASyMS) for patients receiving chemotherapy for breast or colorectal cancer. We begin by detailing the ASyMS work to date, providing an overview of research conducted in the field over the last ten years. The current study, ASyMS-III, is then presented, highlighting the study methodology, multi-site involvement, the outcomes being measured, and discussion of the tool. The paper concludes with reflections on the progress of the ASyMS-III study to date, and discusses potential directions for future research.

It's just going to a new hospital…that's it. Or is it? An experiential perspective on moving from pediatric to adult cancer services

Background: Survivors of childhood cancer will, at some stage, move from pediatric to adult care and/or to a different model of care to continue to receive long-term follow-up. Literature relating to transitional care for childhood onset conditions exists, but little research has been undertaken into transition in a cancer context, specifically from an experiences perspective. Objective: The aim of this study was to report how the process of transition should be considered within the context of young people’s entire illness experience and how that experience can impact their transition readiness. Intervention/Methods: A qualitative, collective case study approach was adopted. Semistructured interviews were conducted with young people, parents, and healthcare professionals. Young people’s oncology case notes were also reviewed. Results: Data analysis generated a multidimensional and multiple-perspective understanding of the experience of the process of transition. A central orienting theme was identified: the experience of readiness in the context of transition. Conclusions: Understanding the multifaceted components of readiness is crucial; readiness should embody people’s illness experiences, the numerous and associated losses intertwined with a move from pediatric to adult care, and the simultaneous developmental changes occurring in people’s lives. Implications for Practice: The findings provide a meaningful framework to understand the experience of transition from the perspective of young people, parents, and healthcare professionals. These findings could help with the planning and preparation of individualized transitional care pathways for survivors of childhood cancer.

Congruence Between Latent Class and K-Modes Analyses in the Identification of Oncology Patients With Distinct Symptom Experiences

CONTEXT Risk profiling of oncology patients based on their symptom experience assists clinicians to provide more personalized symptom management interventions. Recent findings suggest that oncology patients with distinct symptom profiles can be identified using a variety of analytic methods. OBJECTIVES The objective of this study was to evaluate the concordance between the number and types of subgroups of patients with distinct symptom profiles using latent class analysis and K-modes analysis. METHODS Using data on the occurrence of 25 symptoms from the Memorial Symptom Assessment Scale, that 1329 patients completed prior to their next dose of chemotherapy (CTX), Cohens kappa coefficient was used to evaluate for concordance between the two analytic methods. For both latent class analysis and K-modes, differences among the subgroups in demographic, clinical, and symptom characteristics, as well as quality of life outcomes were determined using parametric and nonparametric statistics. RESULTS Using both analytic methods, four subgroups of patients with distinct symptom profiles were identified (i.e., all low, moderate physical and lower psychological, moderate physical and higher Psychological, and all high). The percent agreement between the two methods was 75.32%, which suggests a moderate level of agreement. In both analyses, patients in the all high group were significantly younger and had a higher comorbidity profile, worse Memorial Symptom Assessment Scale subscale scores, and poorer QOL outcomes. CONCLUSION Both analytic methods can be used to identify subgroups of oncology patients with distinct symptom profiles. Additional research is needed to determine which analytic methods and which dimension of the symptom experience provide the most sensitive and specific risk profiles.