Advanced Symptom Management System for Patients with Malignant Pleural Mesothelioma (ASyMSmeso): Mixed Methods Study

Abstract

Background Patients with malignant pleural mesothelioma (MPM) have a life-limiting illness and short prognosis and experience many debilitating symptoms from early in the illness. Innovations such as remote symptom monitoring are needed to enable patients to maintain wellbeing and manage symptoms in a proactive and timely manner. The Advanced Symptom Management System (ASyMS) has been successfully used to monitor symptoms associated with cancer. Objective This study aimed to determine the feasibility and acceptability of using an ASyMS adapted for use by patients with MPM, called ASyMSmeso, enabling the remote monitoring of symptoms using a smartphone. Methods This was a convergent mixed methods study using patient-reported outcome measures (PROMs) at key time points over a period of 2-3 months with 18 patients. The Sheffield Profile for Assessment and Referral for Care (SPARC), Technology Acceptance Model (TAM) measure for eHealth, and Lung Cancer Symptom Scale-Mesothelioma (LCSS-Meso) were the PROMs used in the study. Patients were also asked to complete a daily symptom questionnaire on a smartphone throughout the study. At the end of the study, semistructured interviews with 11 health professionals, 8 patients, and 3 carers were conducted to collect their experience with using ASyMSmeso. Results Eighteen patients with MPM agreed to participate in the study (33.3% response rate). The completion rates of study PROMs were high (97.2%-100%), and completion rates of the daily symptom questionnaire were also high, at 88.5%. There were no significant changes in quality of life, as measured by LCSS-Meso. There were statistically significant improvements in the SPARC psychological need domain (P=.049) and in the “Usefulness” domain of the TAM (P=.022). End-of-study interviews identified that both patients and clinicians found the system quick and easy to use. For patients, in particular, the system provided reassurance about symptom experience and the feeling of being listened to. The clinicians largely viewed the system as feasible and acceptable, and areas that were mentioned included the early management of symptoms and connectivity between patients and clinicians, leading to enhanced communication. Conclusions This study demonstrates that remote monitoring and management of symptoms of people with MPM using a mobile phone are feasible and acceptable. The evidence supports future trials using remote symptom monitoring to support patients with MPM at home.

Real time remote symptom monitoring during chemotherapy for cancer: European multicentre randomised controlled trial (eSMART)

“…ASyMS was associated with statistically significant improvements in anxiety. Our findings may differ from relatively small post-intervention effects on psychological symptoms reported in literature pertinent to routine use of patient reported outcome measures43; however, they are consistent with earlier studies of ASyMS in which participants reported feelings of enhanced safety and reassurance 20212344. Anxiety is the most common psychological symptom after a diagnosis of cancer and is higher among people with cancer than in the general population,4546 so these effects may benefit a large proportion of oncology patients; however, this needs to be confirmed in future studies.…”

People with cancer and their family caregivers’ personal experience of using supportive eHealth technology: A narrative review

“…eHealth technology was recognised for its ability to help develop new or build upon existing relationships with healthcare providers, family members and peers diagnosed with cancer. Symptom reporting technologies promoted a belief that participants with cancer were working in collaboration with their healthcare team and appreciated the transparent dialogue regarding their experience and care needs (Högberg et al, 2015;Gustavell et al, 2020;Maguire et al, 2020;McCann et al, 2009;Mirkovic et al, 2014). This sense of connection was also evident in Moshen and colleagues' ( 2021) study of people with cancer and their access to education and personal medical information using eHealth technology.…”

“…Some partners of people with breast cancer referred to it as an obligation which could invoke guilt if they did not complete their assigned activities. Conversely, other studies found that technology was easily embedded in their daily routine and personal schedule (Maguire et al, 2020;Ngo et al, 2020;Hauffman et al, 2020), appreciating the option to engage at a time and pace that suited them (Song et al, 2015;Smith et al, 2020a;Drott et al, 2016) and enabled the person with cancer to plan their schedule (Mohsen et al, 2021;Crafoord et al, 2020). Participants with cancer also found benefit from eHealth technology in that they gained time in their own lives and did not have to travel to their treatment centre for supportive care, whereby people with cancer perceived an additionalreduced burden on their family caregivers (Dalby et al, 2021;Ownsworth et al, 2020).…”

“…However, this perceived benefit can lessen over time as participants become accustomed to treatment and its related symptoms (Ngo et al, 2020). Remote symptom management and self-report technology in conjunction with healthcare professional feedback meant that patients felt that they were being cared for by their healthcare team, even if they had no evident symptoms or need for care (Crafoord et al, 2020;Gustavell et al, 2020;Högberg et al, 2015;McCann et al, 2009;Maguire et al, 2020;Whitehead et al, 2020). This reassurance appears to be related to the belief that their healthcare team were responsible for their care and if they did not receive communication following reporting their symptoms, they understood that they were physically well or did not require treatment (Gustavell et al, 2020;Maguire et al, 2020).…”

“…Several studies cited how people with cancer and family caregivers' use of eHealth technology helped them to process and navigate their emotions during their cancer experience and cope with stressors (Hauffman et al, 2020;Högberg et al, 2015;Lambert et al, 2020;MacDonald et al, 2020;Mirkovic et al, 2014;Ownsworth et al, 2020;Smith et al, 2020a;Ure et al, 2020). Gustavell et al's (2020) study showed that participants with cancer appreciated how they were viewed as people, not patients, while other studies showed that using eHealth technology can foster feelings of being listened to, understood and taken seriously by their healthcare team (Hauffman et al, 2020;Högberg et al, 2015;Maguire et al, 2020;Mirkovic et al, 2014). Participants with cancer were also empowered and motivated in a number of ways: seeking information beyond the technology (Grimsbø et al, 2012;Lambert et al, 2020), engage in self-care activities (MacDonald et al, 2020;McCann et al, 2009), set goals for physical activity and push their personal limits (Brennan et al, 2020;Lambert et al, 2020;Martin et al, 2021), advocate for themselves (Ure et al, 2020), self-reflect on their experience (Crafoord et al, 2020) and develop long-term healthy lifestyle changes (Wang et al, 2020).…”