Introduction: Health-related quality of life (HR-QoL) as a parameter for patient well-being is becoming increasingly important.[1] Nevertheless, it is mainly used as an endpoint in studies rather than as an indicator for adjustments in therapy. In this paper we will present an approach to gradually integrate quality of life (QoL) as a control element into the care delivery of oncology. Concept: Acceptance, usability, interoperability and data protection were identified and integrated as key indicators for the development. As an initial approach, a questionnaire tool was developed to provide patients a simplified answering of questionnaires and physicians a clearer presentation of the results. Implementation: As communication standard HL7 FHIR was used and known security concepts like OpenID Concept were integrated. In a usability study, first results were achieved by asking patients in the waiting room to answer a questionnaire, which will be discussed with the physician in the appointment. This study was conducted in 2019 at theSLK Clinics Heilbronn and achieved 86% participation of all respondents with an average age of 67 years. Discussion: Although the evaluation study could prove positive results in usability and acceptance, it is necessary to aim for longitudinal surveys in order to include QoL as a control element in the therapy. However, a longitudinal survey through questionnaires leads to decreasing compliance and increasing response bias. [2] For this reason, the concept needs to be expanded. With sensors a continuous monitoring can be carried out and the data can be mapped to the individual, interpreted by machine learning. Conclusion: Questionnaires are a concept that has been successfully applied in studies for years. However, since care delivery poses different challenges, the integration of new concepts is inevitable. The authors are currently working on an extension of the use of questionnaires with patient generated data through sensors.
Quality of life (QoL) is affected by environmental influences and varies between patients. A combined measurement through Patient Reported Outcomes (PROs) and Patient Generated Data (PGD) may enhance the detection of QoL impairments by a longitudinal survey. Leveraging different approaches of QoL measurement techniques, the challenge is to combine data in a standardized, interoperable way. We developed an app (Lion-App) to semantically annotate data from sensor systems as well as PROs to be merged in an overall analysis of QoL. A FHIR implementation guide was defined for a standardized assessment. To access sensor data the interfaces of Apple Health or Google Fit are used instead of integrating various provider directly into the system. Since QoL cannot be collected exclusively via sensor values, a combination of PROs and PGD is necessary. PGD enable a progression of QoL which offers more insight into personal limitations whereas PROs give insight about personal burden. The use of FHIR enables structured exchange of data while personalized analyses might improve therapy and outcome.
BACKGROUND The cure for cancer can not only have a negative impact on physical wellbeing, but also on mental health and quality of life (QoL). Health apps enable the monitoring of different parameters, but to date there are only few which support cancer patients and none that focus on QoL. Furthermore, patients as stakeholders are often only integrated at late stage of the development process, if at all. OBJECTIVE The aim of this research was to develop and evaluate a smartphone app (Lion-App) to enable cancer patients to autonomously measure QoL with an iterative, user-centered approach. The goal was to closely integrate end users into every stage of the development process, in order to be able to use the information gained for further development cycles to implement an applicable solution tailored to the needs of end-users. METHODS Cancer patients were included from conceptualization through different development phases in a three-staging process: First, focus groups with cancer support-groups were conducted to understand their expectations and needs. Thereafter, individual tests were performed. After developing a prototype that incorporated first findings, a second test was conducted followed by a beta test lasting several weeks. Participants could download a beta version and test it on their private devices. Lion-App assesses QoL via a patient diary and integrated questionnaires. Through all stages usability was evaluated through the modular User Experience Questionnaire (UEQ+), including the calculation of a key performance indicator (KPI). If possible, the impact of sex on the results was assessed. In the beta test, usage rates as well as age dependent differences were evaluated. RESULTS A total of 21 participants took part in the first focus groups. For the subsequent user test, 17 participants rated their impression through the UEQ+ questionnaire with a KPI [-3,3] of 2.12. In the second usability test, the KPI increased to 2.28. Within the beta test, the usage rate of 19 participants could be evaluated, of whom 14 also answered the UEQ+ (KPI=1.46). An influence of age for the number of questionnaire responses within the app were seen with a decrease of responses with increasing age (P=.02). Sex dependent analysis were only possible for the first - and beta test. CONCLUSIONS The iterative, user-centered approach for development and usability testing has been reflected in positive end-user evaluations. We have successfully developed an App suitable for everyday use to monitor QoL of cancer patients. First results indicated that sex or age of participants seem to play only a minor role. Our approach as well as the findings can be applied to other projects to develop solutions tailored to the end-user.
e13559 Background: To practice precision medicine, the inclusion of patients in therapy is becoming increasingly important. Terms such as ‘patient empowerment’ (PE), ‘patient reported outcome’, and ‘patient generated data’ (PGD) are becoming quite present in current research. In order to implement PE consistently and integrate PGD in therapy, it is necessary to provide patients with specific tools. Methods: In order to develop such a corresponding system, challenges for implementation were identified as well as the current state of PGD in oncology. The aim was to design a system suitable for everyday use that allows the measurement of individual effects like quality of life (QoL) directly at the patient. Based on the positive experience of a previous developed questionnaire tool (EQU) to support physician-patient communication and the findings of the methodology a new patient-centered system was conceptualized with an automated data collection using sensor systems. A decisive factor was to support patients in self-management between treatment periods. This solution was then discussed extensively with stakeholders in order to identify and prioritize functionality and therefore incorporate specific user needs of oncological patients. Results: A great acceptance and need for tools to support patients especially between appointments was identified. In order to enable the recognition of individual characteristics, a continuous survey is essential. Based thereon an application called Lion-App for longitudinal QoL assessment in oncology was developed. A user-centered development aligns the app with the needs of the patients while HL7 FHIR provides the framework for an interoperable exchange. To reduce the burden of continuous interaction, sensors are used for data collection. With an interpretation of this data in the context of QoL, patients are able to visualize their personal course to gain an even better understanding of their disease. With the possibility to perform self-management between appointments, patients are lifted to another level of empowerment. In addition, the gained knowledge may then be used to focus on the effects of the disease in the next appointment and thus take a self-determined role in treatment. First evaluations of the app have been started. Conclusions: There are many ways to use PGD in the manner of precision medicine. The main factor is to create awareness among patients, collect data in an exchangeable way and involve end users early into development. A great opportunity to reduce user interactions and therefore enable long-term usage is the integration of sensor technologies. As a secondary use, algorithms can be extended via the expanded data base to become even more individualized to the patient. Thus, in the long run, such a system may help to further strengthen the cooperation between patient and physician and thus to enable a personalized, QoL-based treatment in oncology.
e24044 Background: Since cancer treatment and disease itself may cause chronic limitations, the challenge of reducing symptom burden during therapy and achieving good Quality of Life (QoL) for longevity with cancer becomes increasingly important. Research already shows that including QoL during treatment increases compliance, survivorship and outcome, but the transition of these concepts into regular care are mostly not implemented. Nevertheless, do regular measurements give a good insight to personal deviations and may enable a harmonious transition from clinical - to post treatment and into everyday life. Methods: For this research assessment of QoL was carried out within a registry study of gastrointestinal patients at the SLK Clinics Heilbronn (DRKS00018788). As a registry study, research is not bound to a fixed deadline, therefore we're still recruiting. First, we deployed a process for a continuous, digital measurement of QoL at clinical visits through the QLQ-C30. Parallel, a separate project implemented an app to measure QoL independently from home. Both ways, data is then structured to visualize the course of events for the identification of deviations or trends. Results: Up to now we included almost 100 patients with over 600 assessment points in our study. It could be shown that our process is applicable in the real world setting of clinical routine and accepted by patients. The study has been running for about 36 months and we were able to visualize QoL charts over several data collection points per patient. Trends within data indicate a relation of the clinical course to changes in QoL. Thus, a possible correlation of the decrease in tumor markers with an increase in QoL is shown. Also, progressions usually result in a significant decrease of QoL. Nevertheless, data also showed that one should be careful to relate the course exclusively to therapy or disease, since environmental influences such as injuries, infections or multimorbidity’s did also result in declines. Here, not only the interpretation of the overall QoL is important, but also the consideration of individual dimensions. Thereby specific limitations of how the patient experiences therapy or possible long-term consequences for survivors get more tangible. To better assess these factors, monitoring of QoL is necessary, not only at visits, but also at home. The developed app for assessing QoL independently was able to show that such a survey can be implemented and applied. Uniform data structure via HL7 FHIR ensures interoperability of the data for both systems. Conclusions: It could be shown that a standardized survey of QoL is possible both in clinical use and independently through patients at home. To close information gaps between clinical visits, both concepts should be merged next to enable an independent survey with a continuous measurement across all therapy stages. With that, adjustments or transitions in therapy could be tailored by limitations in a patients’ QoL.
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