Abstract
Introduction
A significant proportion (15%, n = 28) of the adults with cystic fibrosis (CF) in Western Australia (WA) live in rural and remote areas and have difficulty accessing specialist care at the state adult CF centre, located in Perth. We aimed to increase access by offering telehealth clinics, and evaluate the impact on health outcomes.
Methods
Telehealth clinics were offered via videoconference over a 12-month period, with uptake and satisfaction measured at the end of the intervention. Participants could still attend in person clinics at the CF centre if requested. Other outcomes comprised healthcare utilisation (HCU), spirometry, weight and health-related quality of life.
Results
In 21 participants, total clinic visits increased from 46 (median (range) per participant 2 (0–6)) in the 12-month period preceding the study to 100 (5 (2–8), p < 0.001) during the intervention. Of the 100 clinics in total, 66 were delivered via telehealth. Satisfaction with telehealth was high and most (94%) participants agreed that telehealth is a good way to deliver CF care. An increase in intravenous antibiotic days (incident rate ratio (IRR) 2.3, p = 0.03) and hospital admission days (IRR 3.7, p = 0.01) was observed. There was an improvement in the vitality domain of the Cystic Fibrosis Questionnaire – Revised (p < 0.05).
Discussion
Telehealth had good uptake and increased clinic attendance in adults with CF living in rural and remote WA, and had high satisfaction amongst participants. The increase in HCU, resulting from increased detection and treatment of exacerbations, may improve long-term outcomes in this population.
Introduction
Individuals living in areas of low population density, such as rural and remote areas of Australia, have poorer health outcomes when compared with those living in metropolitan areas. 1 A key contributor to this is reduced access to care, being the inability of an individual to utilise health services that are necessary to improve or maintain their health. This is due in part to the lower numbers of skilled health professionals in these areas, and the large distances needed to travel to specialist healthcare facilities. 2 Of note, earlier work has demonstrated that individuals with cystic fibrosis (CF), who have complex healthcare needs, 3 have poorer health outcomes when not managed in specialist CF centres.4,5
In Western Australia (WA), the state adult specialist CF centre is at Sir Charles Gairdner Hospital (SCGH), in Perth. Of the 190 adults with CF who attend this centre, 28 (15%) live outside Perth, with distances to the centre ranging between 100 and 2567 km. Due to limited specialist CF resources in these rural and remote areas, adults with CF have previously travelled long distances (via car or plane) to attend their scheduled routine clinics at SCGH. The travel and financial burden for these individuals is a major contributor to their low rates of attendance at clinics. The Australian CF Standards of Care recommend a minimum of four clinic visits per patient per year; 6 however, in the year preceding this study, an internal audit revealed that only 22% of adults living in rural and remote WA met this recommendation. Therefore, we sought to explore the use of telehealth in the provision of clinics for adults with CF living in rural and remote WA to improve access to our specialist centre.
Telehealth utilises audio-visual and medical technology to enable remote healthcare, monitoring and rehabilitation of individuals in their home or at a local medical centre. Although previous studies have shown that individuals with CF are willing to utilise telehealth technology, 7 to the best of our knowledge there are no published studies on the feasibility or efficacy of providing clinics via telehealth as part of routine outpatient care in adults with CF living in rural and remote areas. Therefore, the aim of this study was to report on the uptake and participant satisfaction with telehealth clinics for adults with CF living in rural and remote WA, and to evaluate the effect of this service on health outcomes such as healthcare utilisation (HCU), spirometry, weight and health-related quality of life (HRQoL).
Such information is likely to be important because increased clinic attendance at a specialist CF centre by adults with CF who live in rural and remote WA may assist with earlier detection and treatment of respiratory exacerbations, which in turn may slow the rate of decline in spirometry and optimise HRQoL.
Methods
Study design
This was a single group study in which adults with CF who lived in rural and remote WA were invited to utilise telehealth clinics as part of routine care over a 12-month intervention period. Participants were recruited between July 2013 and August 2014. Approval was obtained from the Sir Charles Gairdner Group and Curtin University and all participants provided written informed consent prior to data collection.
Participants
Adults with CF aged 18 years or more and living a minimum of 100 km from the specialist CF centre were eligible to participate in this study. Exclusion criteria were pregnancy, previous lung transplantation or current listing for lung transplantation, as individuals meeting these criteria were already required to travel to Perth more frequently for medical care.
Telehealth clinics
We aimed to provide telehealth clinics approximately every three months, or sooner if clinically indicated, for reasons including self-reported acute deterioration in respiratory status or early follow up after a course of intravenous antibiotics (IVAB). Telehealth clinics were scheduled to suit the participants, specialist CF team, regional telehealth coordinators and a health professional local to the participant (physiotherapist, nurse or general practitioner).
On the day of the telehealth clinic, participants attended their nearest regional hospital. The participant’s height, weight and spirometry were measured by a designated health professional beforehand. Telehealth clinics were held via videoconference using Polycom HDX® series (Polycom, San Jose, USA) equipment at both SCGH and hospitals throughout rural and remote WA. During telehealth clinics, the participant chose whether to be reviewed by each member of the multidisciplinary CF team individually (i.e. consultant physician, nurse practitioner, physiotherapist and dietician) or by the whole team together. A CF pharmacist and social worker were also available to provide input via telephone at a later date if requested by the participant or the team. Following the telehealth clinic, prescriptions were faxed or medications were couriered to the participant’s local pharmacy.
Traditional in-person clinics at SCGH were still provided if requested by the participant or if clinically indicated as previously described. We encouraged participants to attend one in-person clinic during the intervention to allow more comprehensive annual review of their clinical status. If a participant required admission to hospital at any time during the study, this was arranged at the specialist CF centre in Perth. Courses of home IVAB were also commenced at the CF centre before the participant returned home. This allowed for intensive medical and allied health input to be provided, as well as access to specialist secondary services such as intravenous access, endocrinology, gastroenterology and immunology.
Outcomes
Uptake of telehealth was measured via the number of telehealth clinic visits. Clinic attendance data, recorded in the participant’s medical record, were extracted at the end of the 12-month intervention period and compared with the 12-month period preceding recruitment to the study.
Participant satisfaction with telehealth clinics was measured at the end of the intervention period using two questionnaires: the Telehealth Satisfaction Scale (TeSS) and a purpose developed satisfaction survey. 8 The TeSS is a 10-item questionnaire originally developed to assess patient satisfaction with telehealth in a rural memory clinic. 8 For the purposes of this study, the term ‘memory clinic team’ was replaced with ‘CF team’ and the final question “How well the staff answered your questions about the equipment”, was omitted as the participants in this study were not required to operate the telehealth equipment. The second survey contained six questions that were answered using a five-point Likert scale (responses ranging from strongly agree to strongly disagree), and provided the participant with the opportunity to provide further feedback on the telehealth clinics including preference for either telehealth or traditional in-person clinics. This survey was piloted in adults with CF (n = 5) living in the metropolitan area and minor changes were made to optimise its readability. Both surveys were mailed to participants, and were returned by mail in pre-addressed, postage paid envelopes. The content of the surveys did not allow the researchers to identify the participants.
Healthcare utilisation data (total number of clinics, courses and days of IVAB, courses of inhaled and oral antibiotics [AB], hospital admissions and admission days) were extracted from each participant’s medical record at the end of the intervention period and compared with the 12-month period preceding recruitment to the study.
Spirometry (FEV1 and FVC) was measured according to accepted guidelines using either CPFS/D USB™ (MGC Diagnostics Corporation, St Paul, USA) or Easyone™ (NDD Medical Technologies, Andover, USA) spirometers. 9 Health professionals who performed spirometry had previously received training from a certified respiratory technician. Weight and height were used to calculate body mass index (BMI). Health-related quality of life was collected at each clinic using the Cystic Fibrosis Questionnaire – Revised (CFQ-R). 10
Analyses
Statistical analyses were conducted using Stata® (StataCorp. 2015. Stata Statistical Software: Release 14. College Station, TX: StataCorp LP). All data were checked for normality. Satisfaction data were reported using descriptive statistics. Healthcare utilisation data were compared pre- and during the 12-month intervention period with Poisson or negative binomial regression. Paired t-tests and Wilcoxon signed rank tests were used to compare spirometry, weight, BMI and HRQoL data pre- and during the 12-month intervention period as appropriate. Repeated measures analyses of these secondary outcomes were not undertaken as the study was not powered to detect differences. A p-value of < 0.05 was used to denote statistical significance. As the primary aim of this study was to report the uptake of telehealth clinics amongst all individuals with CF living in rural and remote WA, no sample size calculations were undertaken.
Results
Participant (n = 23) characteristics at baseline.
Data are presented as mean (SD) unless otherwise stated.
Data are presented as median (range).
Uptake of the telehealth clinics
Healthcare utilisation data for participants (n = 21) who completed the intervention, comparing the 12-month periods pre- and during telehealth.
Data are presented as number (No.) and median (range). IRR = incidence rate ratio. Std. err. = standard error. Analyses performed using Poisson regression or anegative binomial regression. bData are presented as mean (range).
Satisfaction
Participant (n = 17) responses to questions from the TeSS.
Data are presented as median (range). Questions were answered using a four-point scale: Excellent = 4, Good = 3, Fair = 2, Poor = 1.
Participant (n = 17) responses to questions from the purpose developed satisfaction survey, with data presented as percentage of participants.
Questions were answered using a five-point Likert scale: SA = Strongly agree, A = Agree, U = Unsure, D = Disagree, SD = Strongly disagree.
Healthcare utilisation
During the intervention period, there was an increase in IVAB days, hospital admissions and admission days per participant (Table 2) (all p < 0.05). The number of courses of IVAB, oral AB and inhaled AB per participant also increased, however this was not significant (Table 4). Of the 25 exacerbations requiring IVAB during the intervention period, 20 (80%) were detected during telehealth clinics.
Spirometry, BMI and HRQoL
Participant (n = 21) responses to the CFQ-R pre- and post-telehealth intervention.
Data are presented as mean (SD) (normally distributed data) or amedian [IQR] (non-normally distributed data). An increase in score represents improvement, with a maximum score of 100. Analysis performed using paired t test or bWilcoxon signed rank test. cData are presented as mean (95% CI).
Discussion
This study is the first to evaluate the uptake of telehealth clinics implemented as part of routine outpatient care in individuals with CF living in rural and remote areas. We have demonstrated that telehealth technology increases access to care for these individuals and resulted in 90% of participants meeting the recommended number of clinic visits during the intervention period. 6 Although both telehealth and traditional in-person clinics were offered during the intervention period, participants chose the telehealth option for more than two-thirds of their clinics. One participant did not attend the CF centre (for a clinic or hospital admission) as it was not convenient for them during the intervention period. This is a potential limitation of telehealth, as certain assessments (e.g. bone mineral density, general respiratory function testing and chest computed tomography) are not readily available in all rural and remote areas. While one participant chose not to use the telehealth intervention, the inclusion of their data in measures related to healthcare utilisation provides a more conservative and real world estimate of the effect telehealth had on these outcomes.
The observed increase in antibiotic use and hospital admissions reflects increased surveillance of the participants, and a corresponding increased detection of respiratory exacerbations. Although this short-term increase in HCU was observed, the increased frequency of clinic visits and contact with the clinical team as a result of this telehealth intervention may lead to increased patient adherence and improved longer term health outcomes. Specifically, more frequent contact with the CF team, 11 and earlier detection of exacerbations that will allow treatment to be initiated sooner, 12 is likely to slow the rate of decline of FEV1, and potentially improve nutritional status and HRQoL.
Recruitment for this study was good (over 80%), with only five potential participants not enrolling because they were required to travel to Perth for other medical reasons, or had intentions to move during the intervention period. The most likely explanation for the high recruitment rate is the reduction in travel burden as a result of telehealth, as most of the participants travelled many hours by car or plane to Perth to attend in-person clinics in Perth. It is also likely that our recruitment was influenced by the mean age (31.4 years) of the study sample, as younger adults may be more open to the idea of integrating modern technology into their care. Our study adds support to previous studies reporting that individuals with CF are willing to utilise telehealth technology. 7
Responses to the TeSS reflected an excellent level of satisfaction with telehealth clinics. The only item given a score less than three (out of four) by a participant was regarding the voice quality of the equipment, which could be attributed to the voice delay occasionally experienced with the system. The TeSS responses demonstrated that participants perceived telehealth clinics to be a highly acceptable method to provide regular healthcare review. However, responses to the purpose developed participant satisfaction survey indicated that some participants (12%) preferred traditional in-person clinics over telehealth clinics and some had no preference (29%). This is understandable given that in-person clinics have been offered for many years and have advantages such as the ability for physical examination, access to on-site specialist secondary services (e.g. intravenous access, endocrinology, immunology and hepatology) and immediate admission to hospital if required.
In keeping with this finding, a meta-analysis of telehealth for chronic obstructive pulmonary disease found that individuals were largely satisfied with receiving care via telehealth at home, as long as face to face consultations were still available on request. 13 The positive view of telehealth among our participants is consistent with previous telehealth studies in CF, 7 and provides merit to the continuation of its use as part routine CF care. In a home monitoring study measuring feasibility and satisfaction, 14 80% of participants with CF stated they would opt to continue recording of spirometry, oxygen saturation and symptoms on a daily basis for routine management.
It is difficult to make comparisons between the HCU results of this study and other telehealth studies in CF due to the differences in the interventions and study designs. Weekly videoconferencing with the CF team has previously been utilised by a small number of individuals with CF (n = 7) awaiting lung transplantation over a six-month period, and no differences in HCU were found when compared to usual care. 15 Videoconferencing has also been used effectively as a means of assessing functional exercise capacity. 16 In 19 individuals with CF from adult and paediatric centres, the monitoring of spirometry and symptoms on a daily basis at home over a six-month resulted in no difference in the number of exacerbations per participant when compared to the same period prior to the study; however an increase in courses of oral AB was noted during the intervention. 17 Another intervention comparing daily monitoring of spirometry and oximetry (n = 17) to usual care (n = 28) over seven months found no difference in the rate of hospitalisation, 18 but an increase in clinic visits during the intervention period was observed. Despite the differences in study designs across these studies, many share an observed increase in certain measures of HCU.
This study was not powered to detect changes in spirometry (FEV1 and FVC), and therefore the lack of significant difference in these measures was not unexpected. The increased treatment of exacerbations may explain the improvement in the vitality domain of the CFQ-R, which consists of four questions relating to energy levels. Although the minimal clinically important difference for the vitality domain of the CFQ-R has not been established, the magnitude of change in this domain demonstrated in our study (11 out of 100 points) exceeded the magnitude of change (8 points) reported following 28 days of inhaled aztreonam lysine in individuals with CF colonised with Pseudomonas aeruginosa. As the change in HRQoL alongside the improvement in pulmonary function was considered to be clinically meaningful to the participants in this earlier study, it is likely that the improvement seen in our study would also to be perceived as clinically meangingful. 19 The trend towards improvement in the weight domain of the CFQ-R, alongside the weight gain in fourteen (67%) of the participants may reflect an increase in dietetic input delivered during the intervention period, as well as the improved management of respiratory exacerbations. It is well established that in individuals with CF, a loss of appetite and weight are associated with exacerbations, 20 and earlier management of such episodes may have minimised weight loss during the intervention period.
This study demonstrated that telehealth clinics are a feasible way to deliver care for individuals with CF living in rural and remote areas, and as a result this service will continue to be offered to adults living in Western Australia. Adults with CF in these areas are willing to utilise this technology and most prefer telehealth clinics over traditional in-person clinics offered at the specialist CF centre at SCGH. There are limitations to our study, such as a small sample and lack of control group, which are also common among many of the published telehealth studies in CF to date. 7 Furthermore, other clinical measures commonly used in CF care such as sputum microbiology, inflammatory and diabetic markers, and chest radiography were not included as outcomes as they were beyond the scope of this study. Given the differences in geography, CF centre resources and government health service provision between states and countries throughout the world, it would be difficult to conduct a multi-centre randomised controlled trial in this area. Therefore, future studies can focus on the evaluation of the longer term implementation of telehealth services as part of routine care, and their impact on a wider range of health outcomes.
Footnotes
Acknowledgements
We would like to acknowledge the participants in this study, North Metropolitan Health Service Telehealth Department and WA Country Health Service.
Declaration of conflicting interests
The author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: Mr. Wood reports grants from Institute for Respiratory Health, during the conduct of the study; grants from Technipro Pulmomed, non-financial support from Novartis, non-financial support from Pharmaxis, outside the submitted work. Clin A/Prof Mulrennan reports grants from Institute for Respiratory Health, during the conduct of the study; personal fees from Vertex, non-financial support from Novartis, outside the submitted work. A/Prof Hill has nothing to disclose. Mrs. Cecins has nothing to disclose. Mrs. Morey has nothing to disclose. A/Prof Jenkins reports grants from Institute for Respiratory Health, during the conduct of the study.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was partially funded by the Institute for Respiratory Health Glenn Brown Memorial Grant.
