Cancer rehabilitation at home - the potential of telehealthcare to support functional recovery of lung cancer survivors
Josien Timmerman is a PhD student in the research group Biomedical Signals and Systems. Her supervisors are prof.dr. M.M.R. Vollenbroek-Hutten and prof.dr.ir. H.J. Hermens from the Faculty of Electrical Engineering, Mathematics and Computer Science.
Lung cancer is the most commonly diagnosed malignancy among adults worldwide. Curative lung resection is the preferred treatment for early-stage lung cancer, significantly improving 5-years survival rates in this population. Although being the preferred treatment, patients report persistent disability in daily functioning such as mobility, sleeping, breathing, and quality of life following lung resection.
Cancer rehabilitation comprising exercise rehabilitation or physical activity programs have shown to improve treatment- and health-related outcomes in lung cancer survivors undergoing lung resection. Increasing physical activity may especially benefit lung cancer survivors to prevent or break through a vicious circle of deterioration of physical activity levels, functional capacity and symptom burden, which is often observed following diagnosis and treatment of lung cancer .
Since its introduction, the accessibility and tailoring of rehabilitation programs for cancer survivors have been discussed. With the coming of internet and mobile technologies it is considered that rehabilitation for cancer survivors can be provided more tailored and timely using this technology, also called telehealthcare. Using the internet, smartphones and sensors, telehealthcare services are accessible on patients’ demand, wherever and whenever they need, providing continuous monitoring of health and behaviors, timely support, and easy access to specialized professionals. Despite the potential of telehealthcare to improve cancer rehabilitation, the use of tailored telehealthcare services in lung cancer survivors to provide personalized rehabilitation at home has been limited.
The overall aim of this thesis was to gain knowledge on how to improve the quality and accessibility of home-based cancer rehabilitation that aims to support functional recovery following lung resection using telehealthcare. To do so, this thesis consecutively addressed the design, evaluation and adoption of a telehealthcare service for lung cancer survivors undergoing lung resection.
The first part of this thesis (chapters 2,3 and 4) described the design of the telehealthcare service for which a user-centered, iterative design approach was used to come to proper functional requirements for the telehealthcare service that fit the actual needs of the users.
Chapter 2 established the advantage of ambulatory monitoring methods and outcomes of physical activity behavior and fatigue for personalized cancer rehabilitation in long-term cancer survivors. In this study, daily physical activity behavior was measured objectively and subjectively in cancer survivors and healthy controls using accelerometry and a Visual Analogue Scale implemented on a smartphone, respectively. Also, fatigue was assessed in the cancer survivors on a smartphone using the Visual Analogue Scale, and retrospectively using the Multidimensional Fatigue Inventory (MFI) questionnaire. Results demonstrated imbalanced physical activity patterns throughout the day in cancer survivors as captured with the accelerometer. Also, patterns of fatigue throughout the day in cancer survivors were associated with survivors’ objective daytime patterns of physical activity behavior. That is, the more a survivor felt fatigued, the greater the decline in physical activity throughout the day. A low correlation between objective and subjective physical activity measures was observed, suggesting low awareness in cancer survivors about their daily physical activity performed.
In chapter 3 the usefulness of ambulatory monitoring for post-surgery rehabilitation of lung cancer survivors was addressed by providing insight in the physical activity behavior patterns of operable lung cancer survivors from preoperative to six months postoperative, and evaluating the association between physical activity behavior early following surgery with perceived symptoms and quality of life at six months post-surgery. Using accelerometry, significant changes in physical activity behavior over time were captured in resected lung cancer survivors. Also, variability in physical activity behavior between patients in both amount as well as change over time were demonstrated, suggesting clinical relevance of the use of ambulant monitoring as well as the need for physical activity behavior ‘profiling’. Regarding clinical relevance of physical activity behavior for recovery, patients who were more active in the first month following surgery reported better health outcome six months postoperative.
In chapter 4 the perceived need and value of both operable lung cancer patients and their healthcare professionals regarding technology-supported cancer rehabilitation were captured through a user-centered design approach. Both survivors and professionals perceived a need for supportive care post-surgery. Highest needs were reported for ambulant monitoring of health status, a web-based exercise program, and tailored information regarding disease, treatment and lifestyle. The use of technology to provide supportive care was not seen as a barrier by survivors, under the prerequisite that the technology, such as sensors, would be user-friendly for home-based use and that their use informs healthcare professionals’ treatment and actions. For healthcare professionals, integration of data from the telehealthcare service with existing electronic health records in a sensible and easy-to-view manner was rated critical for feasibility. These findings culminated in a list of functional requirements and a first prototype of the telehealthcare application consisting of: 1) self-monitoring of symptoms and physical activity using on-body sensors and a smartphone, and 2) a web based physical exercise program.
The second part of this thesis (chapters 4, 5 and 6) focused on the evaluation and adoption of telehealthcare in clinical practice. As a first step, the usability of both modules of the telehealthcare application was investigated in chapter 4. The results showed that the majority of lung cancer survivors and healthcare professionals were willing to use the application as part of lung cancer treatment. Accessibility of the data via electronic patient records was essential for healthcare professionals. Lung cancer survivors regarded a positive attitude of the healthcare professionals towards the application vital. Overall, the usability of the modules was rated acceptable.
Chapter 5 continued with an evaluation of acceptability and feasibility of the developed telehealthcare application in clinical practice using a two-stage mixed methods design. Expectations, experiences and actual use of the service by 22 lung cancer survivors and their healthcare professionals were evaluated with the service being offered as an addition to standard post-surgery follow-up care from pre- to six months post-surgery. Expectations prior to use were high and all survivors indicated positive intention to use the modules. Seventeen lung cancer survivors actively used the modules. Use of the ambulant monitoring module varied from 1 to 11 monitoring days prior to each outpatient consultations. Survivors used the web-based exercise module most frequently during the first five weeks, with an average of four logins a week. Fifty-eight percent used the web-based exercise module beyond seven weeks. No adverse situations occurred, and patients felt confident using the modules. Perceived added value included active lifestyle promotion, decreased anxiety, and accessibility to specialized healthcare professionals. Physiotherapists used the web-based exercise module as intended. Contrarily, physicians scarcely used information from the physical activity and symptom monitoring module.
In chapter 6, the barriers and facilitators for successful adoption of telehealthcare services by healthcare professionals were identified, providing guidance to promote acceptance, adoption and, thereby, successful implementation of telehealthcare services in clinical practice. In this study, an online survey was conducted in users of telehealthcare (n=70) and non-users (n=77) to measure behavioral intention to use (BIU) telehealthcare services and factors from the individual (compatibility with workplace values and work processes), technological (perceived usefulness and perceived ease of use), and context for implementation (organizational facilitating and social influence) domains. The results of this study showed that barriers and facilitators for healthcare professionals’ adoption of telehealthcare can exist on different domains, that is the individual, technological and context for implementation, and can be present from pre-adoption until post initial adoption. Healthcare professionals who actively used telehealthcare in clinical practice (the users) perceived better compatibility of telehealthcare with workplace values and work processes, and also experienced better support from the social domain compared to non-users. Non-users showed a lack of knowledge regarding the organizational facilitating domain and significantly lower acceptance than users. Of the non-users, 51% scored positive acceptance, which was associated with significantly better scores on factors from all three domains compared to the non-users with negative acceptance. Some users (11%) indicated negative acceptance following initial adoption, which was significantly related to lower scores on several items of the individual domain compared to the users with positive acceptance.
In the final chapter (chapter 7), the results of the studies were integrated, and their relevance for clinical practice as well as needs and possibilities for future research were discussed. To summarize, throughout this project we increased knowledge of the clinical relevance of ambulant monitoring to improve post-surgery outcomes in cancer survivors and its potential for personalized support. Also, in-depth insight in the needs and requirements for post-surgery supportive care of lung cancer survivors and the healthcare professionals involved in this care trajectory was gained. In close cooperation with these survivors and professionals an ambulant monitoring system and a web-based exercise module were developed, which monitors and supports functional recovery at home. We also discovered that the use of these kinds of technologies, being on-body sensors and web-based portals, are acceptable for survivors.
Contrary to these advances, we have to conclude that not all efforts were successful. First of all, further improvement of the technology is necessary for optimizing its applicability and effectiveness. That is, to improve uptake and effectiveness of telehealthcare in cancer rehabilitation, we should strive for a holistic, personalized approach using multimodal sensing and intelligent reasoning. Second, to improve the fit with users’ and other stakeholders’ needs, the design process might benefit from a less technology-driven and a more value-driven approach. Lastly, in the end we have not reached wide-scale, sustainable adoption and implementation of the developed modules (being symptom and physical activity monitoring and web-based exercise), thereby failing to improve quality and accessibility of cancer rehabilitation. Sustainable implementation of telehealthcare services requires a whole-system approach, addressing the micro-, meso-, macro-level of the healthcare system. To deliver integrated rehabilitation services in the homes of cancer survivors a holistic approach for design and evaluation is necessary to reach alignment and consensus between all relevant stakeholders – that is, any party involved with the design, purchase, financing, provision or use of the service – regarding aims and responsibilities in the usage of telehealthcare services. Next to that, adoption does not ‘just happen’ but needs attention and targeted activities to address the barriers present. Therefore, rather than seeing implementation as a post-design activity, implementation conditions should be considered from the beginning and be intertwined with design and evaluation.
Together, this will bring the promise of home-based, personalized cancer rehabilitation for lung cancer survivors within reach.
