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The Use of a Digital Application for Reporting Pain and Pain Management in Home Hospice

Research Team

Masako Mayahara - Principal Investigator - RUSH University College of Nursing
Louis Fogg - Co-investigator - RUSH University College of Nursing
Arlene Miller - Co-investigator - RUSH University College of Nursing
JoEllen Wilbur - Co-investigator - RUSH University College of Nursing

Award Period

8/11/2020 – 7/31/2022

Funding Source

NIH National Institute of Nursing Research


High pain intensity is a common symptom experienced by patients with serious advanced illness. However, pain management for patients in home hospice is less than optimal. Impediments to improving pain intensity are poor adherence to pain management regimen due in part to caregiver lack of knowledge (a barrier to reporting pain and using analgesics) and lack of self-efficacy (confidence) in administering analgesics. Digital applications may facilitate pain management by: (1) delivering education to increase knowledge and self-efficacy, (2) expediting pain reporting to nurses, and (3) improving adherence to pain management. e-PainSupport is a self-administered, digital pain management application developed in collaboration with hospice nurses and caregivers. It is directly linked to a patient’s medical record and enhanced by an evidence-based educational module. It has three elements: (a) Educational Module, (b) Patient Pain Record, and (c) Pain Summary for Nurses.

The purpose of this study is to test the effects of e-PainSupport on home hospice patient pain intensity when used by patients, caregivers and nurses. Specific aims are: Aim 1. Compare the effects of e-PainSupport to a standard care condition, controlling for covariates (role [patient or caregiver], age, sex, ethnicity and education of the patient and the caregiver and patient’s diagnosis) on hospice patient minimally important clinical improvement in pain intensity (at least 10% improvement on the pain intensity scale)11 (primary outcome) and significant improvement in the continuous score of the pain intensity scale (secondary outcome). Aim 2. Examine the mediating effects of hospice patient and caregiver knowledge of pain management, self-efficacy, and adherence to pain management on change in patient pain intensity over a two-week period, controlling for covariates (role [patient or caregiver], age, sex, ethnicity, education of the patient and the caregiver, and patient’s diagnosis) and treatment condition. Aim 3. Identify hospice nurses’ perceptions of their actions based on using e-PainSupport, including: (a) facilitators and barriers to integrating the app into the agency workflow and (b) benefits of e-PainSupport for pain management of patients in home hospice.

Participants (132 triads of patient, caregiver, and the hospice nurse assigned to the patient) will be recruited from one large Midwest hospice agency. Patient and caregiver outcomes will be assessed at baseline and 2 weeks post baseline. Data will be analyzed with multi-level modeling. Post-intervention semi-structured interviews will be conducted with nurses who provided care to patients in the e-PainSupport condition. Qualitative content analysis will be used to identify themes related to perceived practice changes after using e-PainSupport. e-PainSupport has potential as a useful tool to advance home hospice care by enhancing the quality of caregiver pain management, facilitating nurse-patient communication, and improving management of patient pain intensity.