Creating a Smartphone App for Use in an Outpatient Palliative Care Setting Öffentlichkeit
Ray, Dana M. (Summer 2018)
Published
Abstract
Background: Palliative care is specialized medical care that focuses on preventing and relieving suffering for patients and their families facing illness. It is an interdisciplinary medical specialty that concentrates on optimizing quality of life through symptom management, and provides personalized relief from symptoms caused by serious, chronic or fatal disease and associated side effects from treatment of the disease. While there is an increasing demand for palliative care services, there is also a shortage of palliative care professionals, as well as a need to extend palliative care services beyond traditional boundaries. Outpatient palliative care is emerging as the next frontier in palliative medicine, and can enable patients to better manage the treatments they are receiving or have completed, with the potential to improve their quality of life and contribute to the efficacy of care. Still, many Americans living in certain geographic regions have limited access to palliative care services when confronted with serious illness. However, a mobile health revolution is changing how patients, families and caregivers manage their health and wellness, through the promotion of healthy living, education and management of disease, and remote monitoring of patients. A smartphone mobile health app has the potential to be the new delivery model for extending outpatient palliative care services, with the potential to improve healthcare delivery and efficiency, and conceivably improving patient outcomes.
Purpose: The purpose of this thesis was to design a framework for an outpatient palliative care smartphone app. The intended solution will be used by patients, family members and caregivers and should complement existing outpatient palliative care services in a traditional setting.
Methods: Using a systematic and informed approach, an evidence-based framework was selected and applied, identifying potential outpatient palliative care components that could be included in a smartphone app. A two-part mixed methods feasibility study was conducted to assess whether the palliative care components could be translated into an app. First, input on component design, functionality and use was sought through an anonymous research survey conducted in a cohort of palliative care professionals. Second, subject matter experts were identified and their input obtained through in-depth discussions on a theoretical design of an outpatient palliative care smartphone app.
Results: The research survey collected user preferences on selection of components. In the second part of the study, a cohort of five subject matter experts provided feedback on use and integration of the components. Results from these two sets of stakeholders produced a greater understanding of desired features, content and functionality, and helped answer the study’s research hypothesis regarding design of a palliative care smartphone app.
Conclusions: This research study established perceptions of use and functionality of a smartphone app to be used in an outpatient palliative care setting. It identified some components that were desirous and some that were not, and additional features and functionalities that should be approached with more attention and care. The initial design of the app would be changed significantly after implementing these revisions, laying the groundwork for the next stage of development.
Table of Contents
CHAPTER 1: INTRODUCTION AND LITERATURE REVIEW 1
Introduction 1
Problem Statement 1
Purpose Statement 2
Significance 2
Research Questions 4
Literature Review 4
Background: What is palliative care? 4
How palliative care is different from hospice care 5
Palliative medicine – a relatively new medical field 6
Population, disease trends and their potential impact on palliative care services 7
Impact of palliative care on health and outcomes 8
Integration of palliative care into good clinical practice guidelines 9
Effectiveness of Palliative Care delivered through Outpatient Services 10
Smartphone Ubiquity 12
Mobile Health and Smartphone Apps 13
Intersection of Palliative Care with Technology - Palliative Care Smartphone Apps 14
CHAPTER 2: METHODOLOGY 16
Introduction 16
Research Questions 16
Framework and Methodologies 16
Methods 18
Review of evidence-based guidelines 18
Selection of Key Components 21
Stakeholder Identification 22
Research Survey Design 23
Stakeholder Consultations 23
Analysis of Findings 24
CHAPTER 3: RESULTS 25
Introduction 25
Survey Results 26
Quantitative Questions 26
Qualitative (Open-ended) Survey Questions 33
Qualitative Discussions with Subject Matter Experts 36
Ethical Domain 37
Socio-Cultural Domain 38
Technology Domain 39
Economic Domain 41
Legal Domain 42
CHAPTER 4: ANALYSIS AND DISCUSSION OF RESULTS 44
Introduction 44
Analysis of Findings 44
Respondent Distribution and Exposure to Mobile Technology 44
Ranking of components most desirable for use by patients 45
Level of importance to potential advantages using a palliative care smartphone app 47
Level of concern regarding smartphone app use 48
Likelihood of recommending the smart phone app 49
Recommendations and Advice 49
Discussions with Subject Matter Experts 50
Discussion 56
Strengths 56
Study Limitations 57
Future Directions 58
Conclusion and Recommendations 59
REFERENCES 61
GLOSSARY OF TERMS 65
APPENDIX 1: Survey 66
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