Patient Perspectives on the Completion and Use of Patient-Reported Outcome Surveys in Routine Clinical Care for Heart Failure

IntroductionPatients undergoing haemodialysis (HD) for end-stage kidney disease often report a poor quality of life (QoL) and identify that improving QoL has a higher priority for them than improvements in long-term survival. Research suggests that regular collection and usage of patient-reported outcome measures (PROMs) in patients with chronic conditions may reduce hospitalisation, improve QoL and overall survival. In the UK, despite increased use within research settings, PROMs have not been introduced into the routine clinical care for patients undergoing HD.We report the protocol for ‘Using patient reported outcome measures (PROMs) to promote quality of care in the management of patients with established kidney disease requiring treatment with haemodialysis in the UK—PROM-HD’. The study aim is to investigate the methodological basis for the use of routine PROMs assessment, particularly using electronic formats (ePROMs) within clinical and research settings, to maximise the potential of PROM use in the management of the care of this patient group.Methods and analysisThe project will use qualitative methodology to explore, by thematic analysis, the views, perceptions and experiences of patients receiving HD and members of the HD multidisciplinary team regarding the collection and use of PROMs in routine clinical care, particularly ePROMs. This will involve interviews with up to 30 patients or until saturation is achieved and three focus group sessions with approximately 18 members of the clinical team delivering care to this patient group, which will be interpreted broadly to include both professional and non-professional staff.

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Information is a key prerequisite for perceived relevance of patient reported outcome data (PRO data): A multicenter questionnaire study

Journal of Nursing Education and Practice ◽

10.5430/jnep.v9n6p107 ◽

2019 ◽

Vol 9 (6) ◽

pp. 107

Author(s):

Malene Kildemand ◽

Hanne Merete Lindegaard ◽

Mette Juel Rothmann ◽

Birgitte Nørgaard

Keyword(s):

Patient Involvement ◽

Healthcare Professionals ◽

Clinical Care ◽

Patient Reported Outcome ◽

Outcome Data ◽

Outpatient Clinics ◽

Routine Clinical Care ◽

Patient Reported ◽

Perceived Relevance ◽

Danish Hospital

Objective: The aim of this study was to investigate the relevance of patient reported outcome data (PRO data) as assessed by arthritis patients in a Danish hospital setting.Methods: The study was conducted as a multicenter questionnaire survey comprising patients with rheumatoid arthritis, ankylosing spondylitis, and psoriatic arthritis at three rheumatology outpatient clinics. Respondents with experience of reporting PRO data were recruited. The recruitment took place in March 2017.Results: A total of 98 respondents were included. We found significant correlation between respondents’ level of information about PRO data and the perceived relevance of PRO data questions. Remarkably, a third of the respondents stated that PRO data prepared neither themselves nor the healthcare professionals for the consultation, while 40% found that their PRO data responses were not used during consultations with healthcare professionals.Conclusions: The respondents’ assessment of the relevance of PRO data depended on the information offered to them. In recognition of its potential as a tool for patient involvement, the use of PRO data should be formally integrated in routine clinical care.

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SP677IMPLEMENTING A PATIENT-REPORTED OUTCOME MEASURE FOR HEMODIALYSIS PATIENTS IN ROUTINE CLINICAL CARE: PERSPECTIVES OF PATIENTS AND CLINICIANS

Nephrology Dialysis Transplantation ◽

10.1093/ndt/gfz103.sp677 ◽

2019 ◽

Vol 34 (Supplement_1) ◽

Author(s):

Jenna Evans ◽

Alysha Glazer ◽

Rebecca Lum ◽

Esti Heale ◽

Marnie Mackinnon ◽

...

Keyword(s):

Outcome Measure ◽

Clinical Care ◽

Patient Reported Outcome ◽

Hemodialysis Patients ◽

Routine Clinical Care ◽

Patient Reported Outcome Measure ◽

Patient Reported

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Implementing PROMs in routine clinical care: a qualitative exploration of GP perspectives

BJGP Open ◽

10.3399/bjgpopen20x101135 ◽

2020 ◽

pp. bjgpopen20X101135

Author(s):

Ian Litchfield ◽

Sheila Greenfield ◽

Grace M Turner ◽

Samuel Finnikin ◽

Melanie J Calvert

Keyword(s):

Primary Care ◽

Care Service ◽

Clinical Care ◽

Chronically Ill ◽

Patient Reported Outcome Measures ◽

Patient Reported Outcome ◽

Telephone Interviews ◽

Routine Clinical Care ◽

Current Implementation ◽

Patient Reported

BackgroundThe recently announced long-term plan for the NHS is based on a model of person-centred care, which relies on the sustained engagement of patients, shared decision making, and capability for self-management. For a primary care service under increasing pressure from an ageing and chronically ill population, Patient Reported Outcome Measures (PROMs) appear capable of supporting many of the requirements for person-centred care, yet little is known of the circumstances of their current implementation or how their use might be optimised.AimTo begin the conversation about how successfully PROMs have been integrated into primary care and how their use might be supported.Design & settingA qualitative investigation of the perspectives of GPs exploring the use of PROMs as part of routine clinical care in England.MethodSemi-structured telephone interviews were conducted with GPs from across England. The data were analysed using the Consolidated Framework for Implementation Research (CFIR).ResultsA total of 25 interviews were conducted and GPs described the potential benefit of PROMs in a range of circumstances, but also voiced concerns about their reliability and their potential to constrain consultations. Their flexibility meant they had the potential to be incorporated into existing care processes but only with the requisite logistical support.ConclusionAreas that need to be addressed include the creation of a compelling body of evidence of the benefit of PROMs, appropriate training for staff and patients, and a coherent implementation strategy from policymakers and funding bodies.

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Facilitators and Barriers For Implementing Patient-Reported Outcome Measures in Clinical Care: an Academic Center's Initial Experience

Health Policy ◽

10.1016/j.healthpol.2021.07.001 ◽

2021 ◽

Author(s):

Marzyeh Amini ◽

Arvind Oemrawsingh ◽

Lisanne M. Verweij ◽

Hester F. Lingsma ◽

Jan A. Hazelzet ◽

...

Keyword(s):

Outcome Measures ◽

Clinical Care ◽

Patient Reported Outcome Measures ◽

Patient Reported Outcome ◽

Initial Experience ◽

Patient Reported ◽

Facilitators And Barriers

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Patient perspectives on recall period and response options in patient reported outcome measures for chronic rhinosinusitis symptomatology

Clinical Otolaryngology ◽

10.1111/coa.13774 ◽

2021 ◽

Author(s):

Isabelle Gengler ◽

Tazheh A. Kavoosi ◽

Adam C. McCann ◽

Michal Trope ◽

Brentley A. Lindsey ◽

...

Keyword(s):

Chronic Rhinosinusitis ◽

Outcome Measures ◽

Patient Reported Outcome Measures ◽

Patient Reported Outcome ◽

Recall Period ◽

Patient Perspectives ◽

Response Options ◽

Patient Reported

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Understanding how a palliative-specific patient-reported outcome intervention works to facilitate patient-centred care in advanced heart failure: A qualitative study

Palliative Medicine ◽

10.1177/0269216317738161 ◽

2017 ◽

Vol 32 (1) ◽

pp. 143-155 ◽

Cited By ~ 16

Author(s):

Pauline M Kane ◽

Clare I Ellis-Smith ◽

Barbara A Daveson ◽

Karen Ryan ◽

Niall G Mahon ◽

...

Keyword(s):

Heart Failure ◽

Palliative Care ◽

Chronic Heart Failure ◽

Unmet Needs ◽

Patient Reported Outcome Measures ◽

Patient Reported Outcome ◽

Specific Patient ◽

Patient Centred Care ◽

Palliative Care Outcome Scale ◽

Patient Reported

Background: Palliative care needs of patients with chronic heart failure are poorly recognised. Policy makers advise a patient-centred approach to holistically assess patients’ needs and care goals. Patient-reported outcome measures are proposed to facilitate patient-centred care. Aim: To explore whether and how a palliative care–specific patient-reported outcome intervention involving the Integrated Palliative care Outcome Scale influences patients’ experience of patient-centred care in nurse-led chronic heart failure disease management clinics. Design: A feasibility study using a parallel mixed-methods embedded design was undertaken. The qualitative component which examined patients and nurses experience of the intervention is reported here. Semi-structured interviews were conducted and analysed using framework analysis. Setting/participants: Eligible patients attended nurse-led chronic heart failure disease management clinics in two tertiary referral centres in Ireland with New York Heart Association functional class II–IV. Nurses who led these clinics were eligible for inclusion. Results: In all, 18 patients and all 4 nurses involved in the nurse-led clinics were interviewed. Three key themes were identified: identification of unmet needs, holistic assessment and patient empowerment. The intervention impacted on processes of care by enabling a shared understanding of patients’ symptoms and concerns, facilitating patient–nurse communication by focusing on these unmet needs and empowering patients to become more involved in clinical discussions. Conclusion: This Integrated Palliative care Outcome Scale–based intervention empowered patients to become more engaged in the clinical consultation and to highlight their unmet needs. This study adds to the evidence for the mechanism of action of patient-reported outcome measures to improve patient-centred care and will help inform outcome selection for future patient-reported outcome measure research.

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