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Design and introduction of a quality of life assessment and practice support system: perspectives from palliative care settings

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  • Background: Quality of life (QOL) assessment instruments, including patient-reported outcome measures (PROMs)
    and patient-reported experience measures (PREMs), are increasingly promoted as a means of enabling clinicians to
    enhance person-centered care. However, integration of these instruments into palliative care clinical practice has
    been inconsistent. This study focused on the design of an electronic Quality of Life and Practice Support System
    (QPSS) prototype and its initial use in palliative inpatient and home care settings. Our objectives were to ascertain
    desired features of a QPSS prototype and the experiences of clinicians, patients, and family caregivers in regard
    to the initial introduction of a QPSS in palliative care, interpreting them in context.
    Methods: We applied an integrated knowledge translation approach in two stages by engaging a total of 71
    clinicians, 18 patients, and 17 family caregivers in palliative inpatient and home care settings. Data for Stage I were
    collected via 12 focus groups with clinicians to ascertain desirable features of a QPSS. Stage II involved 5 focus
    groups and 24 interviews with clinicians and 35 interviews with patients or family caregivers during initial
    implementation of a QPSS. The focus groups and interviews were recorded, transcribed, and analyzed using the
    qualitative methodology of interpretive description.
    Results: Desirable features focused on hardware (lightweight, durable, and easy to disinfect), software (simple, userfriendly
    interface, multi-linguistic, integration with e-health systems), and choice of assessment instruments that
    would facilitate a holistic assessment. Although patient and family caregiver participants were predominantly
    enthusiastic, clinicians expressed a mixture of enthusiasm, receptivity, and concern regarding the use of a QPSS. The
    analyses revealed important contextual considerations, including: (a) logistical, technical, and aesthetic
    considerations regarding the QPSS as a technology, (b) diversity in knowledge, skills, and attitudes of clinicians,
    patients, and family caregivers regarding the integration of electronic QOL assessments in care, and (c) the need to
    understand organizational context and priorities in using QOL assessment data.
    Conclusion: The process of designing and integrating a QPSS in palliative care for patients with life-limiting
    conditions and their family caregivers is complex and requires extensive consultation with clinicians, administrators,
    patients, and family caregivers to inform successful implementation.

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    Article (Published)
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    Attribution-NonCommercial 4.0 International
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    • Sawatzky, R., Laforest, E., Schick-Makaroff, K., Stajduhar, K., Reimer-Kirkham, S., Krawczyk, M., Öhlén, J., McLeod, B., Hilliard, N., Tayler, C., & Cohen, S. R. (2018). Design and introduction of a quality of life assessment and practice support system: perspectives from palliative care settings. Journal of patient-reported outcomes, 2(1), 36.