The purpose of this research study is to determine the feasibility, acceptability, and evidence for clinical impact of a mobile app-based program called Palliative Care Planner (PCplanner) in addressing needs and promoting advance care planning discussions among patients with idiopathic pulmonary fibrosis and their clinicians.
Interstitial lung disease (ILD) affects roughly 6.3 to 76 per 100,000 people of predominantly older adult patients worldwide and is associated with high morbidity and mortality. Patients with such idiopathic pulmonary fibrosis suffer symptom burdens similar to patients with cancer and commonly experience long, costly hospitalizations that often include care in an intensive care unit (ICU). Despite the presence of numerous unmet needs, ILD patients uncommonly receive palliative care because of lack of symptom recognition, supports to provide advanced care planning (ACP) and symptom control, and processes to promote collaboration between primary teams and palliative care specialists to deliver the appropriate level of care. To address this important clinical gap, we propose adapting our existing needs-targeted PCplanner (Palliative Care planner) mobile app platform to the outpatient setting. PCplanner Outpatient will allow patients to report their needs, provide video content to stimulate knowledge of and discussion about more advanced care planning, and assist primary physicians in recognizing the optimal timing of specialist palliative care referral.
Study Type
INTERVENTIONAL
Allocation
RANDOMIZED
Purpose
SUPPORTIVE_CARE
Masking
NONE
Enrollment
43
A mobile app platform that will display participant survey results to clinicians to facilitate communication on specific needs as well as provide resources on advance care planning to participants.
Duke University Medical Center
Durham, North Carolina, United States
Feasibility of intervention
Number of participants who stated intervention was easy to use as measured by patient survey.
Time frame: Up to 16 weeks
Acceptability of intervention
Number of participants who stated they were satisfied with the intervention as measured by patient survey.
Time frame: Up to 16 weeks
Completion of intervention
Number of participants who completed all three surveys and intervention telephone visits.
Time frame: Up to 16 weeks
Change in Needs; Existential concerns; Symptoms; and Therapeutic interaction (NEST) scale
Scale ranges from 0 to 130 with lower score indicates less unmet needs and higher score indicates more unmet needs on issues such as communication, symptoms, social support, and financial stress.
Time frame: Baseline to week 8
Documentation of advance care planning in electronic health record
Includes all or any of the following: code status, healthcare power of attorney, advance directive
Time frame: Up to 16 weeks
Change in Needs; Existential concerns; Symptoms; and Therapeutic interaction (NEST) scale
Scale ranges from 0 to 130 with lower score indicates less unmet needs and higher score indicates more unmet needs on issues such as communication, symptoms, social support, and financial stress.
Time frame: Baseline to week 16
Change in Patient Health Questionnaire-9 (PHQ-9) score
Score ranges from 0 to 27 with lower score indicates no or mild depression and higher score indicates more severe depression.
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Time frame: Baseline to week 8
Change in Patient Health Questionnaire-9 (PHQ-9) score
Score ranges from 0 to 27 with lower score indicates no or mild depression and higher score indicates more severe depression.
Time frame: Baseline to week 16
Change in General Anxiety Disorder-7 (GAD-7) score
Score ranges from 0 to 21 with lower score indicates no or mild anxiety and higher score indicates more severe generalized anxiety.
Time frame: Baseline to week 8
Change in General Anxiety Disorder-7 (GAD-7) score
Score ranges from 0 to 21 with lower score indicates no or mild anxiety and higher score indicates more severe generalized anxiety.
Time frame: Baseline to week 16
Change in Patient Health Questionnaire-10 (PHQ-10) score
Scores range from 0 to 20 with lower score indicates less bothersome symptoms and higher score indicates more bothersome symptoms.
Time frame: Baseline to week 8
Change in Patient Health Questionnaire-10 (PHQ-10) score
Scores range from 0 to 20 with lower score indicates less bothersome symptoms and higher score indicates more bothersome symptoms.
Time frame: Baseline to week 16
Change in EuroQol - 5 Dimension (EQ-5D) score
Scores generally range from 0 (poor quality of life) to 1 (best quality of life possible)
Time frame: Baseline to week 8
Change in EuroQol - 5 Dimension (EQ-5D) score
Scores generally range from 0 (poor quality of life) to 1 (best quality of life possible)
Time frame: Baseline to week 16
Change in Quality of Life Visual Analogue Scale (QOL VAS)
Scores range from 0 to 100 with lower score indicates worse imaginable quality of life and higher score indicates better imaginable quality of life.
Time frame: Baseline to week 8
Change in Quality of Life Visual Analogue Scale (QOL VAS)
Scores range from 0 to 100 with lower score indicates worse imaginable quality of life and higher score indicates better imaginable quality of life.
Time frame: Baseline to week 16
Change in Therapeutic Alliance score
Score ranges from 16 to 64 with lower score indicates lower perceived alliance between patient and their provider and higher score indicates better therapeutic alliance.
Time frame: Baseline to week 8
Change in Therapeutic Alliance score
Score ranges from 16 to 64 with lower score indicates lower perceived alliance between patient and their provider and higher score indicates better therapeutic alliance.
Time frame: Baseline to week 16