Background Benefits of tele-monitoring (TM) of home non-invasive ventilation (NIV) in MND have been reported. Question sets for other respiratory conditions may not be transferrable. This work sought to develop questions transmitted via tablet device (Docobo Careportal®) allowing patients to inform clinicians of respiratory status, illness progression and NIV issues.
Methods Modified Delphi methodology was used involving 4 stages: initial expert panel with clinicians (EP1), trial of questions and feedback sessions (FS) with patients, second panel with professionals (EP2). 21 questions were developed at EP1 and trialled with 9 patients (male = 7; mean = 58 years; mean illness duration = 52 months) for 8 weeks. FS were conducted after the trial to examine face validity, clarity and relevance. Each question was deemed clear if at least there was 80% agreement.18 questions were retained, 3 modified, 2 deleted and 5 added. EP2 repeated the process, the resulting final question set contained 26 items of which 17 generate a notification. Patients completed questions weekly, appropriateness of alerts was checked by phone call; the panel specified some notifications to be of greater clinical importance requiring intervention or further observation. It was possible to review reported issues against overnight oximetry and patient ventilation interaction data.
Results For 12 weeks, 10 patients using NIV male = 7; mean (SD) age = 62 (8) years; median illness duration = 16.5 months, completed the final question set weekly. 210 alerts (geometric mean 15.3, IQ range 11–24.) were generated for; sleep quality, alertness, tiredness, NIV compliance, secretion clearance difficulty, increased secretions, and increased dyspnoea. 34 interventions resulted as described in the bar chart: the median number of interventions per patient was 2 (range = 0–9).
Discussion To date the questions appear valid with no misunderstanding revealed. Appropriate and timely treatment adjustment and clinical review was facilitated. Prompt interventions may reduce psychological distress for patients and caregivers. This patient group are normally followed up three-monthly under the current NICE guidance; this question validation work suggests value in more frequent contact. Tele-monitoring, including symptom monitoring with a validated question set, may offer an alternative approach to following these complex patients.