Maine Medical Center, Medical Education, Maine Medical Center Research Institute, Critical Care
Cystic Fibrosis, Feasibility Studies, Maine, Cohort Studies, Rural Population
Background: One of the hallmarks of cystic fibrosis (CF) pulmonary exacerbations is a drop in lung function, as measured by forced expiratory volume in 1 second (FEV1) on spirometry. A single center study performed at a large urban center found that telehealth intervention including home spirometry was associated with more frequent identification of exacerbations in the home setting but did not show a difference in FEV1 at one year, though overall adherence to the study protocol was poor (1). Adherence to a CF telehealth program was reportedly better in another study (2). We sought to determine feasibility, patient adherence, and attitudes toward a home telehealth services in a pilot program at the Maine Medical Center Adult CF Clinic, which serves many patients in rural areas of the state.
Methods: Patients who had experienced >2 exacerbations/year and lived more than 2 hours from our center were invited to participate in this pilot project based on provider prediction of adherence and available electronic resources. Participants were provided a home spirometer and internet-enabled tablet after demonstration of appropriate use. The demonstration included comparison between spirometry measurements obtained on home and hospital-based equipment for each participant. They were instructed to upload spirometry data and answers to a HIPAA-compliant questionnaire on a weekly basis for 12 weeks, and they were called weekly, if necessary, to prompt data collection. After 12 weeks, each participant completed a Telehealth Usability Questionnaire (TUQ). Qualitative impressions from patients and clinic staff were also collected.
Results: In this provider-selected group of 5 participants, 4 completed the pilot. 64% of total potential weekly spirometry uploads were obtained (patient specific adherence range 21-92%). Spirometry obtained in the clinic and at home were highly correlated (r = 0.99). Questionnaire responses were obtained at only 14% of designated time points (adherence range 0-50%). Lack of cellular reception prevented data transmission for 2 patients. Reminder calls from clinic staff were both needed and performed in 64% of weeks. On the TUQ, 4 of 5 of participants agreed or strongly agreed that telehealth improved access to healthcare services and saved time traveling to clinic. Two CF exacerbations in two separate patients were treated with outpatient antibiotics and one patient then required admission after failure of outpatient therapy.
Conclusion: Home spirometry was generally well-accepted by our cohort and FEV1 measurement quality was good. Study participants reported that both immediate access to lung function measurements and ability to visualize trends were useful adjuncts to their self-care. Consistent with prior reports, overall adherence was quite variable. Prior to broader rollout of home telehealth monitoring of CF patients in Maine, it will be important to better understand barriers to patient use of this technology, such as inconsistent cell phone reception in certain regions of the state. A larger study would be necessary to assess whether telehealth leads to differences in key clinical outcomes, including exacerbation or hospital admission rates. References 1. Lechtzin N, et al. Home Monitoring of Patients with Cystic Fibrosis to Identify and Treat Acute Pulmonary Exacerbations. eICE Study Results. AJRCCM 2017; 196: 1144-1151. 2. Grzincich G, et al. Evaluation of a home telemonitoring service for adult patients with cystic fibrosis: a pilot study. Jour Telemed Telehealth 2010; 16: 359-362.
Sears, Edmund; Stone, Philip; Murray, Alicia; and Desjardins, Thomas, "Cystic Fibrosis Telemonitoring in a Small Rural Maine Cohort: A Feasibility Study" (2020). Costas T. Lambrew Research Retreat 2020. 111.