Creating a Smartphone App for Use in an Outpatient Palliative Care Setting Open Access

Ray, Dana M. (Summer 2018)

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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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