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

Abstract

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 patientcentred 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 patientreported outcome measures to improve patient-centred care and will help inform outcome selection for future patient-reported outcome measure research.

Patients’ experiences of using the Integrated Palliative care Outcome Scale for a person‐centered care: A qualitative study in the specialized palliative home‐care context

“…It also provided a structured way for them to reflect on how and to what extent their illness affected them. This finding is in line with those of Kane et al () who found that patients affected by heart failure found IPOS to be helpful for them to understand and articulate their experience of illness. Theoretically, one dimension of person‐centered care is to enter another person's world by listening emphatically and attentively (Leplege et al, ).…”

“…The results of the present study revealed that, when IPOS was used as a basis for conversation, this facilitated discussions about care needs between patients and nurses, and is confirmed by Kane et al () and Pinto et al () who show that IPOS, when used in palliative care and heart failure care, can initiate discussions about difficult problems. Further, such discussions mostly concerned patients’ psychological issues.…”

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

“…Since this was a feasibility study that was not adequately powered to detect the effect of the intervention, we nevertheless, conducted qualitative interviews to explore the potential mechanism of action of the intervention. This is reported separately 36. Patients with CHF need a holistic patient-centred approach28 to better understand, identify and address their symptoms and concerns 48.…”

“…The potential mechanism of action of the intervention was also examined. These findings are reported separately 36. Qualitative data were analysed using framework analysis 37…”

Support Needs Approach for Patients (SNAP) tool: a validation study

“…A range of tools have been recommended for use with patients in clinical practice7–11; however, most focus primarily on measuring disease burden, patient functionality or patient concerns. These tools can be valuable indicators of need but do not directly identify areas where patients need more support to manage life with their condition (their unmet support needs).…”