Developing a care pathway for heart failure with preserved ejection fraction: patient perceptions of existing care and their needs

Type of funding sources: Other. Main funding source(s): Scottish Government

The Heart Disease Action Plan’s vision is that everyone in Scotland receives care that supports them in living well with their heart condition [1]. In 2021 NHS Ayrshire and Arran (NHS A&A) was successful in attaining Scottish Government funding to develop and pilot a care pathway for those with heart failure with preserved ejection fraction (HFpEF). HFpEF is not widely understood by the wider healthcare community, and access to care for this population is limited. To help inform development of this pathway, a scoping exercise was undertaken to fully understand the needs of those with HFpEF, and to provide baseline data for evaluation of the new pathway.

As part of the scoping exercise, patient interviews were conducted. The purpose of these was to establish patient perceptions of existing care for HFpEF and to ascertain how closely this aligned with their needs.

Five telephone interviews were conducted with individuals recently diagnosed and admitted to hospital with HFpEF within NHSA&A.

Interviews focused upon the following questions, with prompts on ‘what went well?’ and ‘what could have gone better?’:

- What brought you to hospital?

- How was your in-patient care?

- What was the support like after discharge?

- How is your current management of your medications?

All interviews were conducted by the HFpEF Project Lead Nurse and took approximately 20-30 minutes.

Care experience varied widely and three main themes were identified: support, communication, and continuity. Patients highlighted the importance of feeling listened to, and of having clear communication around the HFpEF diagnosis and care plan, with an appropriate channel available for them to ask questions and access relevant support. Continuity of care was dependent upon good multidisciplinary communication and integrated working, and upon staffing levels. There was a desire for ongoing clinical support for self- and medical management of their HFpEF at home.

"No one is supporting....I manage myself"

[someone] "…should contact you on discharge….[because]…you get an explanation in hospital but then there are questions that arise after discharge…."

"I think they could have explained things better to me….just to have an opportunity to have questions answered and my heart condition discussed"

"…I would say that there was a breakdown in the service [after discharge]."

The interviews demonstrate a clear need for a pathway for HFpEF that provides support, communication and continuity of care. It is hoped that evaluation of the pathway will demonstrate a positive impact upon these data.