scholarly journals Development of a conceptual model and patient-reported outcome measures for assessing symptoms and functioning in patients with heart failure

2020 ◽  
Vol 29 (10) ◽  
pp. 2835-2848
Author(s):  
Olga Moshkovich ◽  
Katy Benjamin ◽  
Katie Hall ◽  
Ryan Murphy ◽  
Robyn von Maltzahn ◽  
...  
Keyword(s):  
Heart Failure ◽  
Literature Review ◽  
Conceptual Model ◽  
Phase 1 ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Cognitive Testing ◽  
Expert Interviews ◽  
Cognitive Changes ◽  
Patient Reported

Abstract Purpose Heart failure (HF) is a common condition that places considerable burden on patients. We aimed to develop a patient-reported outcome (PRO) measure to assess the symptoms and impacts of HF. Methods Phase 1: a targeted literature review, expert interviews, and concept elicitation (CE) interviews with patients with HF (n = 26) were used to develop a conceptual model of the core symptoms and impacts of HF. To capture these concepts, three new fit-for-purpose PRO questionnaires were constructed in accordance with US Food and Drug Administration PRO guidance. Phase 2: three ‘waves’ of cognitive interviews were conducted with patients with HF (n = 28) to validate and refine the questionnaires. Results Three key symptoms—shortness of breath, oedema, and fatigue—were identified across the literature review, expert interviews and CE interviews. Several additional symptoms, cognitive changes and impacts of HF were reported in the CE interviews and included in the conceptual model. A 10-item symptom questionnaire (Heart Failure-Daily Symptom Diary) was constructed; cognitive testing showed that the final PRO measure was easy to understand/complete and relevant to patients with HF, confirming content validity. Two HF impact questionnaires were developed (Assessing Dyspnoea’s Impact on Mobility and Sleep and Heart Failure-Functional Status Assessment), but required refinement to ensure patient understanding. Conclusions Patient input contributed to the development of a PRO instrument for assessing physical and cognitive symptoms important to patients with HF using novel measurement strategies. Inclusion of daily metrics offers differentiation from other qualified instruments and may provide clinical insight for improving lifestyles. Additionally, two draft PRO measures may, after further validation, be useful to assess the impacts of HF.

scholarly journals Correction to: Development of a conceptual model and patient-reported outcome measures for assessing symptoms and functioning in patients with heart failure

2020 ◽  
Vol 29 (10) ◽  
pp. 2849-2849
Author(s):  
Olga Moshkovich ◽  
Katy Benjamin ◽  
Katie Hall ◽  
Ryan Murphy ◽  
Robyn von Maltzahn ◽  
...  
Keyword(s):  
Heart Failure ◽  
Conceptual Model ◽  
Outcome Measures ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Patient Reported ◽  
Patients With Heart Failure

The article Development of a conceptual model and patient-reported outcome measures for assessing symptoms and functioning in patients with heart failure.

scholarly journals Patient-Reported Cognitive Outcomes Following Cardiac Surgery: A Descriptive Review

2021 ◽  
Vol 8 ◽  
pp. 237437352198925
Author(s):  
Amanda Robinson ◽  
Edith Pituskin ◽  
Colleen M Norris
Keyword(s):  
Cardiac Surgery ◽  
Cognitive Function ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Cognitive Outcomes ◽  
Patient Centered ◽  
Cognitive Changes ◽  
Practice Nurses ◽  
Patient Reported ◽  
Related Quality

A descriptive review was conducted to evaluate the evidence of cognitive patient-reported outcome measures (PROMs) following cardiac surgery. The search of electronic databases resulted in 400 unique manuscripts. Nine studies met the criteria to be part of the final review. Results of the review suggest that there are few validated PROMs that assess cognitive function in the cardiac surgical population. Furthermore, PROMs have not been used to assess overall cognitive function following cardiac surgery within the past decade. However, one domain of cognitive function—memory—was described, with up to half of patients reporting a decline postoperatively. Perceived changes in cognitive function may impact health-related quality of life and a patient’s overall view of the success of their surgery. Early identification of cognitive changes measured with PROMs may encourage earlier intervention and improve patient-centered care. In clinical practice, nurses may be in the best position to administer PROMs preoperatively and postoperatively.

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

2017 ◽  
Vol 32 (1) ◽  
pp. 143-155 ◽  
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.

scholarly journals Piloting a web-based systematic collection and reporting of patient-reported outcome measures and patient-reported experience measures in chronic heart failure

BMJ Open ◽  
2020 ◽  
Vol 10 (10) ◽  
pp. e037754
Author(s):  
Francesca Pennucci ◽  
Sabina De Rosis ◽  
Claudio Passino
Keyword(s):  
Heart Failure ◽  
Chronic Heart Failure ◽  
Outcome Measures ◽  
Health Workers ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Population Characteristics ◽  
Web Based ◽  
Patient Reported ◽  
Systematic Collection

ObjectivesTo evaluate the feasibility of a digital and continuous collection and reporting of patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) for chronic heart failure (CHF).DesignA single-site pilot study was settled for evaluating the feasibility of the intervention, both using qualitative and quantitative data (ie, workshop, surveys).SettingThe pilot has been implemented in a Tuscan specialised hospital (Italy).Participants162 patients were involved. Inclusion criteria were: a previous diagnosis of HF, age ≥18 years, absence of cognitive impairment or active tumours, ability to provide informed consent to study participation.InterventionThe continuous collection and reporting of PROMs and PREMs has been designed and implemented in 2018. PREMs questionnaires for patients were developed, while Kansas City Cardiomyopathy Questionnaire-12 was used for assessing PROMs. Questionnaires are administered at specific time points: discharge; 30 days, 7 and 12 months after the discharge. Enrolment of patients, administration and real-time reporting of questionnaires are carried on through a digital platform.Outcome measuresEnrolment, response and drop-out rates were considered to assess the feasibility of the intervention. Qualitative data were collected during meetings and workshops with health workers. The representativeness of the recruited sample with respect to the population characteristics was also evaluated.ResultsThe system has been successfully implemented during 2018. Response rates have been consistently above 50%, demonstrating patients’ transversal willingness to participate. All the involved stakeholders acknowledged the feasibility of the design. The recruited sample is significantly different in terms of age and educational level compared with the overall population characteristics.ConclusionIt is possible to run a web-based systematic collection and reporting system for CHF patient-reported data. Systematic collection and reporting of PROMs and PREMs data allows professionals to increasingly assume CHF patient perspective in their daily work. Limitations will be used to improve the system.

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