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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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          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.


          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.


          Desirable features focused on hardware (lightweight, durable, and easy to disinfect), software (simple, user-friendly 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.


          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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          Most cited references 37

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          The impact of measuring patient-reported outcomes in clinical practice: a systematic review of the literature.

          The purpose of this paper is to summarize the best evidence regarding the impact of providing patient-reported outcomes (PRO) information to health care professionals in daily clinical practice. Systematic review of randomized clinical trials (Medline, Cochrane Library; reference lists of previous systematic reviews; and requests to authors and experts in the field). Out of 1,861 identified references published between 1978 and 2007, 34 articles corresponding to 28 original studies proved eligible. Most trials (19) were conducted in primary care settings performed in the USA (21) and assessed adult patients (25). Information provided to professionals included generic health status (10), mental health (14), and other (6). Most studies suffered from methodologic limitations, including analysis that did not correspond with the unit of allocation. In most trials, the impact of PRO was limited. Fifteen of 23 studies (65%) measuring process of care observed at least one significant result favoring the intervention, as did eight of 17 (47%) that measured outcomes of care. Methodological concerns limit the strength of inference regarding the impact of providing PRO information to clinicians. Results suggest great heterogeneity of impact; contexts and interventions that will yield important benefits remain to be clearly defined.
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            The applications of PROs in clinical practice: what are they, do they work, and why?

            Precisely defining the different applications of patient-reported outcome measures (PROs) in clinical practice can be difficult. This is because the intervention is complex and varies amongst different studies in terms of the type of PRO used, how the PRO is fed back, and to whom it is fed back. A theory-driven approach is used to describe six different applications of PROs in clinical practice. The evidence for the impact of these applications on the process and outcomes of care are summarised. Possible explanations for the limited impact of PROs on patient management are then discussed and directions for future research are highlighted. The applications of PROs in clinical practice include screening tools, monitoring tools, as a method of promoting patient-centred care, as a decision aid, as a method of facilitating communication amongst multidisciplinary teams (MDTs), and as a means of monitoring the quality of patient care. Evidence from randomised controlled trials suggests that the use of PROs in clinical practice is valuable in improving the discussion and detection of HRQoL problems but has less of an impact on how clinicians manage patient problems or on subsequent patient outcomes. Many of the reasons for this may lie in the ways in which PROs fit (or do not fit) into the routine ways in which patients and clinicians communicate with each other, how clinicians make decisions, and how healthcare as a whole is organised. Future research needs to identify ways in with PROs can be better incorporated into the routine care of patients by combining qualitative and quantitative methods and adopting appropriate trial designs.
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              Patients' experiences and satisfaction with health care: results of a questionnaire study of specific aspects of care.

              To determine what aspects of healthcare provision are most likely to influence satisfaction with care and willingness to recommend hospital services to others and, secondly, to explore the extent to which satisfaction is a meaningful indicator of patient experience of healthcare services. Postal survey of a sample of patients who underwent a period of inpatient care. Patients were asked to evaluate their overall experience of this episode of care and to complete the Picker Inpatient Survey questionnaire on specific aspects of their care. Patients aged 18 and over presenting at five hospitals within one NHS trust in Scotland. 3592 questionnaires were mailed to patients' homes within 1 month of discharge from hospital during a 12 month period. Two reminders were sent to non-responders; 2249 (65%) questionnaires were returned. Almost 90% of respondents indicated that they were satisfied with their period of inpatient care. Age and overall self-assessed health were only weakly associated with satisfaction. A multiple linear regression indicated that the major determinants of patient satisfaction were physical comfort, emotional support, and respect for patient preferences. However, many patients who reported their satisfaction with the care they received also indicated problems with their inpatient care as measured on the Picker Inpatient Survey; 55% of respondents who rated their inpatient episode as "excellent" indicated problems on 10% of the issues measured on the Picker questionnaire. The evidence suggests that patient satisfaction scores present a limited and optimistic picture. Detailed questions about specific aspects of patients' experiences are likely to be more useful for monitoring the performance of various hospital departments and wards and could point to ways in which delivery of health care could be improved.

                Author and article information

                +1(604)513-2121 , rick.sawatzky@twu.ca
                J Patient Rep Outcomes
                J Patient Rep Outcomes
                Journal of Patient-Reported Outcomes
                Springer International Publishing (Cham )
                22 August 2018
                22 August 2018
                : 2
                [1 ]ISNI 0000 0000 9062 8563, GRID grid.265179.e, School of Nursing, , Trinity Western University, ; 7600 Glover Road, Langley, BC V2Y 1Y1 Canada
                [2 ]ISNI 0000 0004 0633 9101, GRID grid.415289.3, Centre for Health Evaluation and Outcome Sciences, Providence Health Care, ; 588 – 1081 Burrard Street, St. Paul’s Hospital, Vancouver, BC V6Z 1Y6 Canada
                [3 ]ISNI 0000 0004 1936 8649, GRID grid.14709.3b, Ingram School of Nursing, , McGill University, ; 680 Sherbrooke Street West, Montreal, QC H3A 2M7 Canada
                [4 ]GRID grid.17089.37, Faculty of Nursing, , University of Alberta, ; Level 3, Edmonton Clinic Health Academy, 11405-87 Avenue, Edmonton, AB T6G 1C9 Canada
                [5 ]ISNI 0000 0004 1936 9465, GRID grid.143640.4, School of Nursing and Institute on Aging & Lifelong Health, (IALH), , University of Victoria, ; PO Box 1700, STN CSC, Victoria, BC V8W 2Y2 Canada
                [6 ]ISNI 0000 0004 0480 265X, GRID grid.421577.2, Palliative Care, Fraser Health, ; 100 – 2296 McCallum Road, Abbotsford, BC V2S 3P4 Canada
                [7 ]ISNI 0000 0004 1936 7697, GRID grid.22072.35, Faculty of Graduate Studies, , University of Calgary, ; MacKimmie Tower, Room 213, 2500 University Drive NW, Calgary, AB T2N 1N4 Canada
                [8 ]ISNI 0000 0004 1936 9465, GRID grid.143640.4, Faculty of Graduate Studies, , University of Victoria, ; PO Box 3025 STN CSC, Victoria, BC V8W 3P2 Canada
                [9 ]ISNI 0000 0000 9919 9582, GRID grid.8761.8, Center for Person-Centered Care, Institute of Health and Care Sciences, Salgrenska Academy, , University of Gothenburg, ; Box 457, 405 30 Göteborg, Sweden
                [10 ]BC Centre for Palliative Care, 300 – 601 Sixth St., New Westminster, BC V3L 3C1 Canada
                [11 ]ISNI 0000 0004 1936 8649, GRID grid.14709.3b, Departments of Oncology and Medicine, , McGill University, ; Montreal, QC, Canada
                [12 ]ISNI 0000 0000 9401 2774, GRID grid.414980.0, Lady Davis Research Institute of the Jewish General Hospital, ; 3755 Côte Ste. Catherine Road, Montreal, QC H3T 1E2 Canada
                [13 ]ISNI 0000 0000 9919 9582, GRID grid.8761.8, Salgrenska Academy, , University of Gothenburg, ; Box 457, 405 30 Göteborg, Sweden
                [14 ]ISNI 000000009445082X, GRID grid.1649.a, Palliative Centre, , Sahlgrenska University Hospital, ; Box 30110, 400 43 Göteborg, Sweden
                © The Author(s) 2018

                Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made.

                Funded by: Canadian Frailty Network
                Award ID: CAT2013-51
                Award ID: CAT2014-17
                Award Recipient :
                Funded by: FundRef http://dx.doi.org/10.13039/501100001804, Canada Research Chairs;
                Award ID: 950-232053
                Award Recipient :
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