Unmet needs of heart failure patients across the different domains of palliative care - a qualitative interview study.

BACKGROUND

Currently, palliative care provision for patients with heart failure (HF) is limited and usually not tailored to the specific needs they might have. In this study, we sought to gain a better understanding of the needs and expectations expressed by patients with HF regarding palliative care.

METHODS

We conducted semi-structured interviews with inpatients and outpatients across the entire HF trajectory. The interview guide was developed in a multidisciplinary team with input from patient representatives and covered all eight domains of palliative care according to the National Consensus Project Guidelines on Quality Palliative Care. Interviews were digitally recorded, transcribed, coded and analyzed based on the thematic analysis approach by Braun and Clarke.

RESULTS

A total of 18 interviews were conducted with patients spanning NYHA classes I-IV and INTERMACS profiles 2-7. Six patients were currently on durable and three on temporary mechanical circulatory support. Participants expressed needs and expectations across all eight domains of palliative care. Some needs were specific to HF, e.g. for more HF expertise among all healthcare providers. Other needs were more generally associated with serious illnesses, e.g. long term access to psychological counselling for patients and caregivers, help with coming to terms with limited life expectancy, or provision of information in accessible language.

CONCLUSION

Patients with HF express a host of unmet needs, many of which could be addressed by palliative care. Our study offers a nuanced description of patient needs that can inform the development of services and interventions in the future.

TRIAL REGISTRATION NUMBER: German Clinical Trials Registry DRKS000334836.