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      Multidisciplinary Software Design for the Routine Monitoring and Assessment of Pain in Palliative Care Services: The Development of PainCheck

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          Abstract

          PURPOSE

          The use of health information technology (HIT) to support patient and health professional communication is emerging as a core component of modern cancer care. Approaches to HIT development for cancer care are often underreported, despite their implementation in complex, multidisciplinary environments, typically supporting patients with multifaceted needs. We describe the development and evaluation of an e-health tool for pain management in patients with advanced cancer, arising from collaboration between health researchers and a commercial software development company.

          METHODS

          We adopted a research-led development process, involving patients with advanced cancer and their health professionals, focusing on use within real clinical settings. A software development approach (disciplined agile delivery) was combined with health science research methods (ie, diary studies, face-to-face interviews, questionnaires, prototyping, think aloud, process reviews, and pilots). Three software iterations were managed through three disciplined agile delivery phases to develop PainCheck and prepare it for use in a clinical trial.

          RESULTS

          Findings from development phases (inception, elaboration, and construction) informed the design and implementation of PainCheck. During the transition phase, where PainCheck was evaluated in a randomized clinical trial, there was variation in the extent of engagement by patients and health professionals. Prior personal experience and confidence with HIT led to a gatekeeping effect among health professionals, who were reluctant to introduce PainCheck to patients. Patients who did use PainCheck seemed to benefit, and no usability issues were reported.

          CONCLUSION

          Health science research methods seemed to help in the development of PainCheck, although a more rigorous application of implementation science methodologies might help to elucidate further the barriers and facilitators to adoption and inform an evidence-based plan for future implementation.

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          Most cited references32

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          Quality of cancer pain management: an update of a systematic review of undertreatment of patients with cancer.

          Pain is a frequent symptom in patients with cancer, with substantial impact. Despite the availability of opioids and updated guidelines from reliable leading societies, undertreatment is still frequent.
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            Overcoming barriers in cancer pain management.

            Jung Kwon (2014)
            Pain is a devastating symptom of cancer that affects the quality of life of patients, families, and caregivers. It is a multidimensional symptom that includes physical, psychosocial, emotional, and spiritual components. Despite the development of novel analgesics and updated pain guidelines, cancer pain remains undermanaged, and some patients with moderate to severe pain do not receive adequate pain treatment. Inadequate pain management can be attributed to barriers related to health care professionals, patients, and the health care system. Common professional-related barriers include poor pain assessment, lack of knowledge and skill, and the reluctance of physicians to prescribe opioids. Patient-related barriers include cognitive factors, affective factors, and adherence to analgesic regimens. System-related barriers such as limits on access to opioids and the availability of pain and palliative care specialists present additional challenges, particularly in resource-poor regions. Given the multidimensional nature of cancer pain and the multifaceted barriers involved, effective pain control mandates multidisciplinary interventions from interprofessional teams. Educational interventions for patients and health care professionals may improve the success of pain management.
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              A decade of agile methodologies: Towards explaining agile software development

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                Author and article information

                Journal
                JCO Clin Cancer Inform
                JCO Clin Cancer Inform
                cci
                cci
                CCI
                JCO Clinical Cancer Informatics
                American Society of Clinical Oncology
                2473-4276
                2019
                2 October 2019
                : 3
                : CCI.18.00120
                Affiliations
                [ 1 ]University of Leeds, Leeds, United Kingdom
                [ 2 ]X-Lab, Leeds, United Kingdom
                Author notes
                [†]

                Deceased.

                Matthew J. Allsop, PhD, St Gemma’s Academic Unit of Palliative Care, Leeds Institute of Health Sciences, University of Leeds, Leeds, UK, LS2 9LJ; Twitter: @matthewallsop, @UniversityLeeds; e-mail: m.j.allsop@ 123456leeds.ac.uk .
                Article
                1800120
                10.1200/CCI.18.00120
                6873922
                31577449
                c7296564-9320-4d60-9c6f-0b04d4866211
                © 2019 by American Society of Clinical Oncology

                Licensed under the Creative Commons Attribution 4.0 License https://creativecommons.org/licenses/by/4.0/

                History
                : 22 August 2019
                Page count
                Figures: 3, Tables: 3, Equations: 0, References: 50, Pages: 17
                Categories
                , Health Services Research: Quality of Care
                , Patient and Survivor Care: End of Life
                , Patient and Survivor Care: Outcomes Research
                , Patient and Survivor Care: Pain Control
                , Patient and Survivor Care: Palliative Care
                , Patient and Survivor Care: Supportive Care
                Original Reports
                Custom metadata
                v1

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