Experience of Care from the Perspectives of Inpatients with Palliative Care Needs: a Cross-sectional Study Using a Patient Reported Experience Measure (PREM)

Overview

Journal BMC Palliat Care

Publisher Biomed Central

Specialty Critical Care

Date 2024 Jul 18

PMID 39026237

Authors

Gursharan K Singh

Alison Mudge

Robyn Matthews

Patsy Yates

Jane L Phillips

Claudia Virdun

Affiliations

Soon will be listed here.

Abstract

Background: Improving palliative care for inpatients is urgently needed. Data from patient-reported experience measures (PREM) can assist in identifying areas for focused improvement. This study aimed to describe patient reported experience of care in inpatients with palliative care needs, to inform a baseline understanding of care experience and identify key areas for improvement.

Methods: Cross-sectional study design where inpatients with palliative care needs were invited to complete 'consideRATE,' a patient reported experience measure of care, over six months in 2022. Inpatients with palliative care needs receiving care on an oncology, general medicine/renal and general medicine/respiratory ward (n = 3) at an Australian metropolitan hospital were screened for eligibility. Carers could provide proxy responses where inpatients were unable to participate. Descriptive statistics were used to analyse quantitative ratings, whilst free text responses were analysed using integrated thematic analysis.

Results: One-hundred and twenty participants (108 patients and 12 carers) completed consideRATE. The questions with the highest number of 'very good' responses were attention to symptoms, attention to feelings and attention to what matters most; the questions with the lowest number of 'very good' responses was attention to patients' affairs, what to expect, and the environment of care. Almost half (n = 57, 48%) indicated that attention to patients' affairs 'did not apply' to their inpatient stay. Analysis of 532 free text responses across 8 questions highlighted the importance of feeling supported, feeling informed, feeling heard and navigating the clinical environment.

Conclusion: Enabling inpatients with palliative care needs to provide feedback about their experience of care is one method of ensuring improvements matter to patients. Supporting clinical teams to understand and use these data to make tailored improvements is the next step in this multi-phase research.

References

Virdun C, Garcia M, Phillips J, Luckett T . Description of patient reported experience measures (PREMs) for hospitalised patients with palliative care needs and their families, and how these map to noted areas of importance for quality care: A systematic review. Palliat Med. 2023; 37(7):898-914. PMC: 10320712. DOI: 10.1177/02692163231169319. View

Virdun C, Luckett T, Lorenz K, Davidson P, Phillips J . Preferences of patients with palliative care needs and their families for engagement with service improvement work within the hospital setting: A qualitative study. Palliat Med. 2022; 36(7):1129-1139. DOI: 10.1177/02692163221100108. View

To T, Greene A, Agar M, Currow D . A point prevalence survey of hospital inpatients to define the proportion with palliation as the primary goal of care and the need for specialist palliative care. Intern Med J. 2011; 41(5):430-3. DOI: 10.1111/j.1445-5994.2011.02484.x. View

Kwame A, Petrucka P . A literature-based study of patient-centered care and communication in nurse-patient interactions: barriers, facilitators, and the way forward. BMC Nurs. 2021; 20(1):158. PMC: 8414690. DOI: 10.1186/s12912-021-00684-2. View

Bull C, Teede H, Watson D, Callander E . Selecting and Implementing Patient-Reported Outcome and Experience Measures to Assess Health System Performance. JAMA Health Forum. 2022; 3(4):e220326. DOI: 10.1001/jamahealthforum.2022.0326. View

Virdun C, Luckett T, Lorenz K, Davidson P, Phillips J . Hospital patients' perspectives on what is essential to enable optimal palliative care: A qualitative study. Palliat Med. 2020; 34(10):1402-1415. DOI: 10.1177/0269216320947570. View

Haskard Zolnierek K, DiMatteo M . Physician communication and patient adherence to treatment: a meta-analysis. Med Care. 2009; 47(8):826-34. PMC: 2728700. DOI: 10.1097/MLR.0b013e31819a5acc. View

Mudge A, Douglas C, Sansome X, Tresillian M, Murray S, Finnigan S . Risk of 12-month mortality among hospital inpatients using the surprise question and SPICT criteria: a prospective study. BMJ Support Palliat Care. 2018; 8(2):213-220. DOI: 10.1136/bmjspcare-2017-001441. View

Lingard L . Beyond the default colon: Effective use of quotes in qualitative research. Perspect Med Educ. 2019; 8(6):360-364. PMC: 6904374. DOI: 10.1007/s40037-019-00550-7. View

10.

Bernhardt J, Lipson-Smith R, Davis A, White M, Zeeman H, Pitt N . Why hospital design matters: A narrative review of built environments research relevant to stroke care. Int J Stroke. 2021; 17(4):370-377. PMC: 8969212. DOI: 10.1177/17474930211042485. View

11.

Luckett T, Virdun C, Rao A, Daly L, Hackl N, Willems A . Improving the methods for patient-reported experience measures in palliative care: findings from a cognitive interview study. Ann Palliat Med. 2022; 11(7):2275-2284. DOI: 10.21037/apm-22-9. View

12.

Virdun C, Luckett T, Lorenz K, Davidson P, Phillips J . Dying in the hospital setting: A meta-synthesis identifying the elements of end-of-life care that patients and their families describe as being important. Palliat Med. 2016; 31(7):587-601. DOI: 10.1177/0269216316673547. View

13.

Hillman K . End-of-life care in acute hospitals. Aust Health Rev. 2011; 35(2):176-7. DOI: 10.1071/AH10963. View

14.

Carfora L, Foley C, Hagi-Diakou P, Lesty P, Sandstrom M, Ramsey I . Patients' experiences and perspectives of patient-reported outcome measures in clinical care: A systematic review and qualitative meta-synthesis. PLoS One. 2022; 17(4):e0267030. PMC: 9022863. DOI: 10.1371/journal.pone.0267030. View

15.

Saunders C, Durand M, Scalia P, Kirkland K, MacMartin M, Barnato A . User-Centered Design of the consideRATE Questions, a Measure of People's Experiences When They Are Seriously Ill. J Pain Symptom Manage. 2020; 61(3):555-565.e5. PMC: 9162500. DOI: 10.1016/j.jpainsymman.2020.08.002. View

16.

Virdun C, Luckett T, Davidson P, Phillips J . Dying in the hospital setting: A systematic review of quantitative studies identifying the elements of end-of-life care that patients and their families rank as being most important. Palliat Med. 2015; 29(9):774-96. PMC: 4572388. DOI: 10.1177/0269216315583032. View

17.

Anhang Price R, Elliott M, Zaslavsky A, Hays R, Lehrman W, Rybowski L . Examining the role of patient experience surveys in measuring health care quality. Med Care Res Rev. 2014; 71(5):522-54. PMC: 4349195. DOI: 10.1177/1077558714541480. View

18.

Black N, Jenkinson C . Measuring patients' experiences and outcomes. BMJ. 2009; 339:b2495. DOI: 10.1136/bmj.b2495. View

19.

Saunders C, Durand M, Kirkland K, MacMartin M, Barnato A, Elwyn G . Psychometric assessment of the consideRATE questions, a new measure of serious illness experience, with an online simulation study. Patient Educ Couns. 2022; 105(7):2581-2589. PMC: 11487583. DOI: 10.1016/j.pec.2022.01.002. View

20.

Virdun C, Luckett T, Davidson P, Lorenz K, Phillips J . Generating key practice points that enable optimal palliative care in acute hospitals: Results from the OPAL project's mid-point meta-inference. Int J Nurs Stud Adv. 2024; 3:100035. PMC: 11080346. DOI: 10.1016/j.ijnsa.2021.100035. View