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.

scholarly journals Translation and cultural adaptation of IPOS (integrated palliative care outcome scale) in Estonia

2021 ◽  
Vol 5 (1) ◽  
Author(s):  
Merli Laissaar ◽  
Riina Hallik ◽  
Pille Sillaste ◽  
Ulvi Ragun ◽  
Mari-Leen Pärn ◽  
...  
Keyword(s):  
Palliative Care ◽  
Well Being ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Cognitive Interviews ◽  
Adaptation Process ◽  
Team Members ◽  
Palliative Care Outcome Scale ◽  
Patient Reported ◽  
Care Outcome

Abstract Background Patient Reported Outcome Measures (PROMs) are questionnaires that could be used in palliative care (PC) to evaluate patient well-being and monitor their care. PROMs enable a focus on what is important to patients by putting the patient at the center of care. Adapting an existing PROM requires considering cultural differences, general usability and understandability of translated terms. Aim To translate and culturally adapt both the patient and staff three and seven day versions of the Integrated Palliative care Outcome Scale (IPOS) into Estonian. The IPOS consist of 10 questions (staff versions 9 questions) and 17 close ended items. The sub aim is to describe the differences and discrepancies found during the adaptation process and compare the results with previous research. Methods The translation and adaptation process of IPOS was conducted using recommended guidelines consisting of six phases and included cognitive interviews with patients (n = 11) and palliative care multidisciplinary team members (n = 8). The study was conducted in two major Estonian hospitals. Results The Estonian IPOS demonstrated face and content validity, acceptance by patients and staff. As a result of expert group review and cognitive interviews with patients and staff, 9 semantic changes were implemented. Conclusions Patient and staff versions of the IPOS with a recall of 3 or 7 days were translated and culturally adapted for Estonia. The Estonian IPOS four versions are ready for use in Estonia.

scholarly journals Feasibility and acceptability of a patient-reported outcome intervention in chronic heart failure

2017 ◽  
Vol 7 (4) ◽  
pp. 470-479 ◽  
Author(s):  
Pauline M Kane ◽  
Barbara A Daveson ◽  
Karen Ryan ◽  
Clare I Ellis-Smith ◽  
Niall G Mahon ◽  
...  
Keyword(s):  
Heart Failure ◽  
Chronic Heart Failure ◽  
Patient Reported Outcome ◽  
Patient Reported

scholarly journals Development and Validation of a Novel Knee-Specific Patient-Reported Outcomes Measure

2020 ◽  
pp. 1-11
Author(s):  
James L. Farnsworth ◽  
Todd Evans ◽  
Helen Binkley ◽  
Minsoo Kang
Keyword(s):  
Outcome Measures ◽  
Patient Reported Outcomes ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Measurement Properties ◽  
Partial Credit Model ◽  
Partial Credit ◽  
Specific Patient ◽  
Patient Reported ◽  
Full Study

Context: Previous research suggests that several knee-specific patient-reported outcome measures have poor measurement properties. The patient-reported outcomes knee assessment tool (PROKAT) was created to improve assessment of knee-specific function. Examination of the measurement properties of this new measure is critical to determine its clinical value. Objective: Examine the measurement properties of the PROKAT. Design: Cross-sectional study. Setting: Clinical athletic training setting. Patients or Other Participants: The pilot study included 32 student-athletes (mean age = 20.78 [1.01], males = 56.30%). The full study included 203 student-athletes (mean age = 21.46 [4.64], males = 54.70%) from 3 separate institutions. The participants were recruited for both the pilot and full study using face-to-face and electronic (eg, email and social media sites) communications. Intervention(s): Evaluation of the measurement properties of the PROKAT occurred using the Rasch partial-credit model. Main Outcome Measures: Infit and outfit statistics, item step difficulties, person ability parameters, category function, item and test information functions, and Cronbach alpha. An independent samples t test was used to evaluate the differences in injured and noninjured athletes’ scores. Results: The Rasch partial-credit model analysis of pilot test items and qualitative participant feedback were used to modify the initial PROKAT. Evaluation of the revised PROKAT (32 items) indicated 27 items had acceptable model–data fit. The injured athletes scored significantly worse than the noninjured athletes (t188 = 12.89; P < .01). The ceiling effects for the PROKAT were minimal (3.9%). Conclusions: A major advantage of this study was the use of the Rasch measurement and the targeted population. Compared with alternative knee-specific patient-reported outcome measures (eg, Knee Injury Osteoarthritis Outcome Score, International Knee Documentation Committee Subjective Knee Form), the PROKAT has low ceiling effects in athletic populations. In addition, evidence suggests the measure may be capable of distinguishing between injured and noninjured athletes.

Systematic Review of Cross-cultural Adaptations of Hip-specific Patient-reported Outcome Measures in Spanish

2018 ◽  
Vol 14 (6) ◽  
pp. 372-378
Author(s):  
Sara Gómez-Valero ◽  
Fernando García-Pérez ◽  
Mariano Tomás Flórez-García ◽  
Juan Carlos Miangolarra-Page
Keyword(s):  
Systematic Review ◽  
Outcome Measures ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Cross Cultural ◽  
Cultural Adaptations ◽  
Specific Patient ◽  
Patient Reported

Using routine databases to evaluate Electronic Palliative Care Co-ordination Systems (EPaCCS)

2021 ◽  
pp. bmjebm-2019-111332
Author(s):  
Christina Sian Chu
Keyword(s):  
Palliative Care ◽  
End Of Life Care ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Research Quality ◽  
Patient Reported ◽  
Quasi Experimental ◽  
Randomised Controlled ◽  
Study Designs

In response to the government’s drive to expand Electronic Palliative Care Co-ordination Systems (EPaCCS) across England by 2020, further evidence for this intervention needs to be established quickly. With palliative and end-of-life care research being an underfunded area, the availability and lower costs of routine databases make it an attractive resource to integrate into studies evaluating EPaCCS without jeopardising research quality. This article describes how routine databases can be used to address the current paucity of high-quality evidence; they can be used in a range of study designs, including randomised controlled trials and quasi-experimental designs, and may also be able to contribute quality of life or patient-reported outcome measures.

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