None listed
Conditions
Brief summary
This project aims evaluate a way of delivering care that allows people with cystic fibrosis to receive approximately half of their outpatient care in their own home. The study will use telehealth, a system where the hospital staff and the patient each log into a video call and all questions and assessments are performed online. By using telehealth, patients will not need to travel, which may lead to increased satisfaction as well as cost savings for individuals and the healthcare system. The study aims to measure how satisfied patients are with receiving care in their own home. The study will also determine the costs to the patient and how much of a burden it is on patients to have their appointments at home compared to travelling to the hospital. This is an important study because, as technology improves and the healthcare system has the ability to provide more care without seeing patients in person, there is a responsibility to carefully study if using technology is beneficial to the patient or if this may be detrimental to the patient. Patients that choose to be part of the study will be randomly divided into two groups. One group, named the ‘usual care group’ will continue to attend the hospital for all of their appointments, this represents no change to their usual care. The second group, named the ‘telehealth group), will attend the hospital for approximately half of their appointments only and will remain home for approximately half of their appointments with the hospital staff conducting the appointment via telehealth.
Interventions
Multi-disciplinary Telehealth appointments directly to the patient home.
Telehealth appointments will be a replacement of face to face appointments which occur every 1-3 months on average, depending on the clinical need.
Each multi-disciplinary appointment is 30-120 minutes in duration depending on the number of team members needing to see the individual and the waiting times to see the various health professionals
Participants in the intervention group will receive a minimum of 50% of their o
Multi-disciplinary Telehealth appointments directly to the patient home. Telehealth appointments will be a replacement of face to face appointments which occur every 1-3 months on average, depending on the clinical need. Each multi-disciplinary appointment is 30-120 minutes in duration depending on the number of team members needing to see the individual and the waiting times to see the various health professionals Participants in the intervention group will receive a minimum of 50% of their outpatient appointments via telehealth for a period of twelve months. At the discretion of the participant and their treating CF team, a higher percentage of appointments may be delivered via telehealth. The participant will be reviewed by all members of the multi-disciplinary team that would otherwise be reviewing the participant if they were physically present at the clinic. The health professionals involved include; respiratory physician, nurse, dietitian, physiotherapist, gastroenterologist, endocrine nurse, social worker, clinical psychologist. Not all multi-disciplinary team members are required to see the individual at every appointment.
Sponsors
Macquarie University
Study design
Allocation
Randomised controlled trial
Primary purpose
Treatment
Eligibility
Sex/Gender
All
Age
6 Months to No maximum
Healthy volunteers
No
Inclusion criteria
- Adults and children with diagnosis of CF confirmed with sweat test, abnormal nasal potential difference and/or genetic testing - Clinical care managed by a CF specialist multidisciplinary team at one of the participating hospitals - Age > 6 months - Participants with resting SpO2 < 95% on room air will require a home SpO2 monitor for inclusion in the trial (as SpO2 measurement would form part of usual clinical care in this group) - Clinically stable without antibiotic treatment for a pulmonary exacerbation in the two weeks prior to the screening visit
Exclusion criteria
- FEV1 <30% - Unable to receive all prescribed medications without physically attending CF centre - Lack of internet availability in the home or other reason for inability to connect to NSW Health teleconferencing platform - Technological limitation to use of portable spirometer (e.g. incompatible device) - Inability to speak and read the English language well enough to complete questionnaires
Outcome results
None listed