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Burdensome Transitions of Care for Patients with End-Stage Liver Disease and Their Caregivers

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Abstract

Background

Patients with end-stage liver disease (ESLD) experience frequent readmissions; however, studies focused on patients’ and caregivers’ perceptions of their transitional care experiences to identify root causes of burdensome transitions of care are lacking.

Aim

To explore the transitional care experiences of patients with ESLD and their caregivers in order to identify their supportive care needs.

Methods

We conducted interviews with 15 patients with ESLD and 14 informal caregivers. We used semi-structured interview guides to explore their experiences since the diagnosis of ESLD including their care transitions. Two raters coded interviews independently (κ = 0.95) using template analysis.

Results

Participants reported feeling unprepared to manage their informational, psychosocial, and practical care needs as they transitioned from hospital to home after the diagnosis of ESLD. Delay in the timely receipt of supportive care services addressing these care needs resulted in hospital readmissions, emotional distress, caregiver burnout, reduced work capacity, and financial hardship. Participants shared the following resources that they perceived would improve their quality of care: (1) discharge checklist, (2) online resources, (3) mental health support, (4) caregiver support and training, and (5) financial navigation.

Conclusion

Transitional care models that attend to the informational, psychosocial, and practical domains of care are needed to better support patients with ESLD and their caregivers at the time of diagnosis and beyond. Without attending to the multidimensional care needs of newly diagnosed patients with ESLD and their caregivers, they are at risk of burdensome transitions of care, high healthcare utilization, and poor health-related quality of life.

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Abbreviations

ESLD:

End-stage liver disease

CHF:

Congestive heart failure

COPD:

Chronic obstructive pulmonary disease

ICU:

Intensive care unit

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Acknowledgment

The authors are deeply grateful to the patients and caregivers who participated in this study and shared their life experiences both openly and honestly.

Funding

RTC was supported by the Massachusetts General Hospital Research Scholars Program. AE-J is a Scholar in Clinical Research of the Leukemia & Lymphoma Society.

Author information

Author notes

  1. Lara Traeger and Areej El-Jawahri have contributed equally to this work.

Authors and Affiliations

  1. Liver Center, Gastrointestinal Division, Massachusetts General Hospital, Harvard Medical School, 55 Fruit Street, Boston, MA, 02114, USA

    Nneka N. Ufere, John Donlan, Teresa Indriolo, James Richter & Raymond T. Chung

  2. Department of Medicine, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA

    Ryan Thompson

  3. Division of Palliative Care and Geriatric Medicine, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA

    Vicki Jackson

  4. Section of General Internal Medicine, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA

    Angelo Volandes

  5. Department of Psychiatry, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA

    Lara Traeger

  6. Division of Hematology and Oncology, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA

    Areej El-Jawahri

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  1. Nneka N. Ufere
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  2. John Donlan
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Contributions

Each author approved the final submitted draft of this manuscript. NNU, JD, TI, JR, RT, VJ, AV, RTC, LT, and AE-J were involved in study concept and design. NNU, JD, TI, and AE-J analyzed and interpreted the data. NNU and JD drafted the manuscript. NNU, JD, TI, JR, RT, VJ, AV, RTC, LT, and AE-J were involved in critical revision of the manuscript for important intellectual content.

Corresponding author

Correspondence to Nneka N. Ufere.

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Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards.

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Informed consent was obtained from all individual participants included in the study.

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Appendices

Appendices

Appendix 1: Semi-structured Interview Guide for Patients

figure a

Appendix 2: Semi-structured Interview Guide for Patients

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Ufere, N.N., Donlan, J., Indriolo, T. et al. Burdensome Transitions of Care for Patients with End-Stage Liver Disease and Their Caregivers. Dig Dis Sci 66, 2942–2955 (2021). https://doi.org/10.1007/s10620-020-06617-4

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