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Page 1: Delivering telemedicine - European Respiratory Society › content › breathe › 10 › 3 › 198.full.pdf · for respiratory patient care. However, ICT has been shown to be effective
Page 2: Delivering telemedicine - European Respiratory Society › content › breathe › 10 › 3 › 198.full.pdf · for respiratory patient care. However, ICT has been shown to be effective

Delivering telemedicineinterventions in chronicrespiratory disease

Educational AimsN To explain the basic principles of telemedicine applicable to chronic respiratory

diseasesN To review telemedicine interventions for patients with chronic respiratory diseasesN To outline the advantages and limitations (including cost and barriers to

implementation) of telemedicine for patients with chronic respiratory diseases

N To propose recommendations for clinical management of patients receivingtelemedicine for chronic respiratory diseases

The potential of ICT forrespiratory patient care

Information and communication technologies(ICT) have great potential to support organisa-tional changes for enhancing chronic caremanagement. Neither ICT alone nor monitor-ing by itself can drive successful outcomesfor respiratory patient care. However, ICThas been shown to be effective as a sup-port for professionals to improve care. Thechronic care model using integrated careservices (ICS) with the support of ICT has

demonstrated potential to improve respiratorypatient care.

The World Health Organization (WHO),in establishing the Global Observatory for e-Health, has developed a disease-orienteddefinition of telemedicine: ‘‘The delivery ofhealthcare services, where distance is acritical factor, by all health professionalsusing ICT for the exchange of valid informa-tion for diagnosis, treatment and preventionof disease and injuries, research and evalu-ation, and for the continuing education ofhealthcare providers, all in the interest ofadvancing the health of individuals and their

Statement of InterestG.L. Narsavage reportsNIH funding receivedfor telemonitoringresearch (as a PI withCo-PI Y-J Chen). NIH/NCI R15-AREA (ARRA).‘‘Pilot: HomeTelemonitoring for Self-ManagementEducation of Patientswith Lung Cancer’’(1R15CA150999-01)2010-2013 ($366,250).J. Mallow was sup-ported by the WVCTSIthrough the NationalInstitute of GeneralMedical NIH/NIGMSAward NumberU54GM104942.

ERS 2014

HERMES syllabus link:module B.1.1, B.1.4,B.5.2, B.5.3, B.15.1,E.1.12 , F.6

Breathe | September 2014 | Volume 10 | No 3 199DOI: 10.1183/20734735.008314

Carme Hernandez1,

Jennifer Mallow2,

Georgia L.

Narsavage3

1Integrated Care Unit, HospitalClinic, Barcelona Spain2School of Nursing and West VirginiaClinical Translational ScienceInstitute (WVCTSI), West VirginiaUniversity (WVU), Morgantown, WV,USA3Robert C. Byrd Health SciencesCenter, Mary Babb Randolph CancerCenter, and WVCTSI, West VirginiaUniversity, Morgantown, WV, USA

Georgia L. Narsavage, WestVirginia University, 3602Health Sciences Center,P.O. Box 9600,Morgantown, WV26506-9600, USA

[email protected]

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communities’’ [1]. In addition to traditionalinformational technologies (IT) activities, ICTtoday includes services such as telephonetransmission with or without wires, otherbroadcast media and multiple methods ofproviding audio–visual transmission ofinformation [2]. A more recent definitionstates that telemedicine ‘‘seeks to improve apatient’s health by permitting two-way, real-time interactive communication between thepatient, and the physician or practitioner atthe distant site. This electronic communica-tion means the use of interactive telecommu-nications equipment that includes, at aminimum, audio and video equipment’’ [3].

Support tools and systems designed toassist clinical decisions using research evid-ence, guidelines and patient information,remotely accessed using electronic healthrecords and web-based portals are avail-able across the globe. Patient-level andpopulation-level clinical and administrativedata can be accessed at a distance byclinicians to provide healthcare and can beeasily stored and managed. These services,known as ‘‘telemedicine’’ or ‘‘telehealth’’have been used interchangeably and involvesecure transmission of medical and otherhealthcare data and information as text,sound, images or other media as needed forthe prevention, diagnosis and treatment ofdisease and the follow-up of patients. Thisarticle will use both terms as appropriate tohealth and disease care. Biometric devices,such as equipment measuring heart rate,blood pressure, forced spirometry and symp-tom diaries, can be used remotely to monitorand manage patients with chronic respiratorydiseases (CRDs). Telemedicine can transformthe delivery of healthcare services by migrat-ing healthcare delivery away from hospitalsand into patient homes [4].

Telemedicine services have been classifiedinto two broad categories: 1) professional-leveltelemedicine occurring between health profes-sionals (e.g. clinician-to-clinician, doctor-to-doctor, nurse-to-doctor), including teleconsult-ation, teleradiology and telepathology; and 2)professional–patient care between cliniciansand patients including telemonitoring, teleho-mecare, assisted-emergency care (e.g. foremergency medical technician support) andinternet-based consultations. Professional-level interactions may include advice or caseconferencing, as well as remote access to thepatients’ health records and support among

clinicians about the case. Professional–patientcommunication through telemedicine pro-motes the use of self-care at home, throughself-monitoring and education with supportfrom the professional. The remote monitoringof the patient allows for the collection ofroutine information on the patient’s healthstatus outside of the locale of the clinician,i.e. at a distance from their office or hospital.Telemedicine offers a two-way transfer ofinformation as evidence-based care can besupported using inbuilt clinical pathways,electronic protocols and guidelines and cansubsequently be used as a foundation forpolicy making based on the data collectedbefore, during and after each care episode.

Chronic conditions,comorbidity andtelemonitoring

Helping people decrease their risk for chronicdiseases and improving a patient’s ability tolive with chronic conditions are internationalconcerns. The increasing incidence of chronicconditions is approaching epidemic levels andfinding evidence-based and effective strategiesto promote health and for the prevention andmanagement of these conditions is essential.Multiple studies have demonstrated thattransforming care for this population requiresa fundamental shift towards care that iscoordinated around a range of services [5].Using models that provide a structure tohealthcare for individuals with chronic diseasesand comorbidities, such as the chronic caremodel, within an integrated care system hasgreat potential to improve patient care andoutcomes [6].

Patients suffering with multiple chronicconditions are particularly vulnerable to sub-optimal quality care and coordination of careis more difficult in patients with multiplechronic conditions taking more medicationwho are more likely to suffer adverse drugevents. Comorbidities with respiratory dis-eases have a high impact on hospital admis-sions. The presence of comorbidity influenceshealthcare decisions, including the preventionof disease, complexity of treatment and serviceutilisation, as well as influencing outcomes,such as activity limitations, participationrestriction and mortality. Multiple chronicconditions also make it more challenging for

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patients to effectively engage in self-care. Forchronically ill patients, it is estimated that 90%of the care must be self-managed or managedin coordination with the healthcare systemwithout burdening it. HERNANDEZ et al. [7]provided an overview of care coordination andits challenges pointing to the potential fortelemedicine in patients with chronic condi-tions, including respiratory diseases.

Improving the care of chronic respiratorypatients with multiple chronic conditionsis indeed a challenge. Care delivery mustinclude prevention, early diagnosis, thera-peutic education empowerment to maintainhealth and assistance in managing theirchronic diseases. Telemedicine can helpindividuals acquire the skills to manage theirhealth and maintain an active life as well asenhance health-service capacity due to itsaccessibility and increasing acceptance byboth providers and patients with CRDs [8].Targeted web pages have also helped toimprove health behaviours and raise aware-ness about healthy living.

Effective CRD management, with appro-priate coordination and monitoring of care,can assist in reducing the long-term con-sequences of respiratory diseases and reducethe impact of chronic conditions [9,10].Home telemonitoring of chronic diseasesseems to be a promising patient-manage-ment approach, which is able to produceaccurate and reliable data as well as empowerpatients by influencing their behaviour toeventually potentially improve their condition.By incorporating self-management practicesand appropriate telemedicine case manage-ment, the use of emergency care andunplanned hospital admissions/readmissionshave been reduced [9, 10].

Types of telemedicine systems

Interactive telemedicine services

Interactive telemedicine services offer concur-rent interactions between patients and clini-cians/doctors. This service includes telephoneand web-based communication as well as homevisits. An example of the basic components of atelemedicine system is shown in figure 1.

Remote monitoring

Remote monitoring allows clinicians anddoctors to check a patient remotely using

varied telemedicine equipment throughself-monitoring/testing systems. ‘‘Telecare’’(a combination of alarms and sensors) or‘‘telehealth’’ (equipment for monitoringphysiological signs and symptoms, such asspirometers) may be used.

Store-and-forward telemedicine

Store-and-forward telemedicine involves thetransmission of data regarding the disease,such as medical images, biological readings,etc., to a medical specialist for evaluationoffline. This type of telemedicine is asyn-chronous, meaning that both parties do notneed to be online at the same time.

Specialist and primary-care consultations

Specialist and primary-care consultationsinvolve patient and doctor and/or other profes-sionals interactions using live video technologyor through sending diagnostic media andpatient data to a specialist for assessment.

Imaging services

Imaging services (e.g. radiology) continue tocreate protocols for maximum use of tele-medicine from remote locations with thou-sands of images ‘‘read’’ or interpreted byspecialist providers annually.

1) Professional: Monitoring programme from the hospital

2) The patient receives monitoring on phone and acts

4) The HCP group receives data and evaluates them

3) Sends it

Figure 1Basic components of a telemedicine system.

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Types of interventions

Telephone counselling

Although not a highly technical form oftelemedicine, telephone counselling forsmoking cessation was an early interventionreviewed by the Cochrane Collaboration [11].The review concluded that proactive tele-phone counselling helps smokers who seek itfrom ‘‘quitlines’’. Telephone quitlines provideimportant access to support for smokers, andthe use of call-back counselling makes themeven more useful. There are, however, limiteddata regarding how many calls are optimal;additionally, in settings other than smokingcessation, whether there is benefit to thisproactive telephone counselling. Thereappears to be a dose response, with one ortwo brief calls being less likely to provide ameasurable benefit; however, three or morecalls increases the cessation success com-pared with a minimal intervention in the formof standard self-help materials or brief advice,or with pharmacotherapy alone. Currentevidence has also shown a benefit of smokingcessation interventions on long-term out-comes through the use of mobile telephones(predominantly text messaging), thoughresults were heterogeneous, with three outof five studies crossing the line of no effect.More research is required into other forms ofmobile telephone-based interventions forsmoking cessation, including cost effective-ness, in other contexts such as low incomecountries.

Forced spirometry

The challenge of early diagnosis and man-agement of CRD is seen in those with greaterprevalence, like chronic obstructive pulmo-nary disease (COPD) and asthma. Forcedspirometry is important for diagnosis andmanagement of respiratory diseases. A web-based application was tested for developmentof high-quality spirometry skills in commun-ity/primary-care settings. BURGOS et al. [12]examined the efficacy, acceptability andusability of a web-based application coveringthree main functions: 1) accessibility toeducational material for continuous profes-sional development; 2) remote support forquality assurance of tests performed by non-experts; and 3) remote assistance for lungfunction interpretation. This research indi-cated sustained benefit of online intervention

by increasing high-quality spirometry tests,and professionals acknowledged the useful-ness of a web-based tool for remote assist-ance with interpretation of the results as wellas to increase non-expert professionals’ skillsfor performing high-quality forced spirometryin primary care. The study expands thepotential of primary care for the diagnosisand management of patients with pulmonarydiseases.

Computed tomography and diagnosticsupport

A chest computed tomography (CT) scan, apainless noninvasive test, is often used tofollow-up chest radiography to diagnose arespiratory problem or to identify the causeof exacerbation of lung symptoms, suchas increasing shortness of breath [13].Understanding and interpreting CT scansrequires specialised training, and teleradi-ology offers the ability for healthcare providersto send CT images from one location toanother [14]. In order to use teleradiology forCT review, three things are needed: 1) accessto a CT scan machine; 2) a transmissionnetwork in order to securely send patient CTimages; and 3) a receiving computer with ahigh-quality display screen for reviewing theimage. This allows the local doctor to staywith the patient, and can be cost-effective inspecialist clinicians’ practices.

Integrated care programmes for chronicrespiratory patients through the employmentof advanced nurses and other care providers

Delivering healthcare to populations withlimited access to care and a high level offrailty are some of the most advantageousaspects of telemedicine. Figure 2 showsmultiple functional areas for the technolo-gical platforms used in telemedicine. A callcentre and a web-based application used inthe integrated care unit in the Clinic Hospital,Barcelona, Spain, for example, facilitatedpatient accessibility and interactions amongprofessionals working at different levels of thesystem. Advanced practice nurses (APRNs)have been leading the movement to providequality, affordable and timely care to patients,in systems that face the challenge of limitednumbers of healthcare providers [15]. As mostAPRNS are care providers, using APRNs in atelemedicine initiative is common. Studies

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that have examined telemedicine in recentyears have supported the feasibility of theAPRN role [16, 17]. Types of telemedicine thathave been used by nurses can be as low-techas providing advice, education and testresults over the telephone; however, astechnology advances, APRNs are usingmobile devices including phones and tablets,video communication and wearableBluetooth-enabled patient self-monitoringsystems to deliver healthcare remotely [18].While the use of telemedicine has enabledAPRNs to provide care across geographicaldistances, the practice of APRNs is boundby a state-based licensing system within theUSA and some European countries, suchthat the ability to practice across bordersmay be prohibited; a policy barrier needingresolution.

Monitoring health status and makingassociated care decisions

The use of telemedicine can enhance clinicaldecision-making related to patient care.Standard practice guidelines for the amountof self-management activity and changes toindividual care plans based on these readingsparallel traditional care; however, the lack ofclarity in supporting clinician decision-mak-ing may be, in large part, why healthcareprofessionals are often averse or indifferentto adopting telemedicine applications [19].Decisions related to the extension of the mostpromising telemedicine applications are com-plex and should include multiple stakeholderssuch as practitioners, healthcare regulatorsand governments [20]. Key elements for

monitoring patients with CRD via telemedi-cine are shown in figure 3.

Telemedicine and asthma

Asthma is one of the most prevalent non-communicable chronic respiratory conditions[21], occurring throughout the lifespan. Morethan 14% of children have been diagnosedwith asthma [21]. However, asthma is under-diagnosed and under-treated [22, 23]. Under-diagnosis and ineffective therapy are majorfactors in morbidity and mortality [24].Uncontrolled breathlessness/wheezing, lead-ing to significant morbidity and mortality,often occurs in low- and lower-middle incomecountries [24].

Management of asthma requires anaccurate diagnosis, assessment and monitor-ing of interventions and responses, edu-cation, controlling environmental factorsand pharmacological therapy [25].Medication and avoiding asthma triggerscan reduce the severity of asthma and enableindividuals to have a good quality of life [26].Targeted management using best-practiceguidelines and ongoing patient educationand support are needed.

Call centre

Patient management unit

Home monitoring

Nurse’s portable unit

Educational material

Telenetworking tools

Home rehabilitation

Figure 2Telemedicine technological platform: functional areas.

Patient

Healthcareprofessionals

Advice DataTelephone

Video conference

Mobile

Email

Internet

Text

Electronic

Monitors

Devices

Figure 3Key elements for chronic respiratory disease management via telemedicine.

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Description of telemedicineinterventions for patients with asthma

The use of telehealthcare in asthma manage-ment is complex and has been offered inmultiple ways including through patienteducation and counselling, replacing face-to-face nursing/physician visits, sending remind-ers regarding adherence to medications andother treatment regimens and the remotemonitoring of patients’ health parameters[27]. The purpose of these telehealth inter-ventions is to enable early detection ofdisease exacerbation, provide timely interven-tion for early symptom management, reduceunscheduled visits to the emergency roomand prevent hospitalisations [27]. RYAN et al.[28] compared paper-based monitoring totwice-daily mobile telephone-based transmis-sion of symptoms, drug use and peak flowwith immediate feedback prompting actionsaccording to an agreed plan for asthma care.However, the mobile telephone-based modelof monitoring did not result in any clinicaladvantages over paper-based care whenguideline-standard clinical support serviceswere provided to both groups, but clinicallyrelevant improvements were seen in bothgroups, suggesting that the telemonitoringwas not the crucial ingredient in improvingoutcomes; however, the mobile telephone-based model of asthma care was moreexpensive than the paper-based model. Amajor limitation of this study was the lack ofcontrol for severity of asthma. A systematicmeta-analysis of telehealth for asthma inter-ventions revealed interventions were unlikelyto result in clinically relevant improvementsin health outcomes in those with relativelymild asthma, but they may have a role inmanaging those with more severe diseasewho are at high risk of hospital admission.The lack of an efficacy comparison betweenthe different types of telehealth interventionspoint to the need for further trials, evaluatingthe comparative effectiveness of telemedicine-based educational interventions, pulmonaryfunction interventions, interactive telemedi-cine and remote monitoring with cost-effectiveness for the wide range of telehealthinterventions [27].

Telemedicine and COPD

The European Commission has recognisedthe potential of telemedicine for monitoring

patients from their homes in the manage-ment of COPD [29]. COPD, includingemphysema and bronchitis, consists of air-flow blockage that restricts breathing andnegatively impacts functioning. Tobaccosmoke, exposure to air pollutants in thehome and workplace, genetics and respir-atory infections are all factors in the devel-opment and progression of COPD worldwide.The WHO estimates that 65 million peoplehave moderate-to-severe COPD. More than50% of adults with low pulmonary functionare not aware that they have COPD and onein 20 deaths worldwide (.3 million people)are related to COPD with approximately 90%of COPD-related deaths occurring in low- andmiddle-income countries.

Management of COPD is multi-faceted inorder to assess and monitor the disease,reduce risk factors, such as smoking and airpollution, stabilise care to prevent diseaseprogression and manage exacerbations andcomorbid conditions. Treatment focuses onmonitoring changes and relieving symptoms,improving function/exercise tolerance andongoing vigilance [7]. Targeted managementusing best-practice guidelines (patientoriented) and ongoing patient educationand support are needed with adaptation tocomorbid conditions. Teleassistance hasbeen shown to prevent hospitalisation aswell as to be cost-effective in patients onoxygen or home mechanical ventilation.Teleassistance has been well accepted bypatients with CRD and caregivers [30].

Description of telemedicineinterventions for patients with COPD

A multi-parametric remote monitoring sys-tem reduced the rate of COPD exacerbations[31] in a randomised clinical trial of 100 COPDpatients in Global Initiative for ChronicObstructive Lung Disease (GOLD) stage II–III, aged o65 years over a 9-month period.The intervention group measured oxygensaturation, heart rate, temperature and phys-ical activity using a telemedicine commercialcellular phone plus specific software. Real-time outcomes were number of exacerbationsand hospitalisations. The telemedicine grouphad a lower rate of exacerbations andhospitalisations. A similar study used asmartphone for daily symptom recordingand detection of exacerbations [32]. Thepatients were COPD GOLD level I–IV

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(IV, n511) patients and participants transmitteddaily symptom diaries. Symptom changes,missed diary transmissions or medical carefor a respiratory problem triggered alerts andparticipant encounters were initiated at thetime of suspected COPD exacerbations.Returns to normal breathing were alsoreported. Compliance was excellent, with99.9% of 28 514 possible daily diaries trans-mitted successfully. All 191 (2.5 per particip-ant–year) COPD exacerbations were detected.During 148 (78%; 1.97 per participant–year)of the 191 exacerbations, patients werehospitalised and/or administered prednisone,an antibiotic or both. This smartphone-basedcollection of COPD symptom diaries allowedfor near-complete exacerbation identificationat inception. Another study using the smart-phone collected patient-reported outcomes[33]. This 4-month randomised clinical trialused clinical criteria and the EXACT PRO(Exacerbations of Chronic Pulmonary DiseaseTool, Patient-Reported Outcomes) question-naire to identify exacerbations. All patientscompleted a diary questionnaire on thesmartphone each day and they were con-tacted and assessed if they appeared to behaving an exacerbation. The platform used fortelemedicine allowed a wide variety of func-tionalities and was supported by a centralclinic-based call centre. A web-based applica-tion facilitated patient accessibility and inter-actions among professionals working atdifferent levels of the system.

Remote healthcare technologies havebeen shown to reduce the number ofemergency admissions to hospitals inpatients with long-term conditions, includingCOPD. The sample included 6000 partici-pants who had a social care needs, COPD,heart failure or diabetes. Telecare or tele-medicine that relay data to nurses or doctorswere installed in the participants’ homes. Theprogramme cost £31 million (J36 million; $51million) and collected data for more than2 years; however, it was cost-effective and thestudy concluded by stating that ‘‘The ques-tion is whether these outcomes will remainand continue in the long term in clinicalpractice’’ [34].

Integrating a tailored telehealth self-man-agement application for COPD patients intoprimary care was conducted as a pilot studyin 2014. Changes in reimbursement com-pelled Dutch primary-care practices to apply adisease-management approach for patients

with COPD. This approach includes indi-vidual patient consultations with a nurse,who coaches patients in COPD management.Adding a web-based self-management sup-port application that assessed patients’health status, the impact on the organisationof care and the level of application use andappreciation moved the standard care intothe realm of telemedicine. Results suggestthat it is possible to integrate a web-basedCOPD self-management application into thecurrent primary-care disease-managementprocess. The pilot study also revealed oppor-tunities to improve the application andreports, in order to increase technology useand appreciation [35].

Another perspective on the limitations ofmeasuring the effectiveness of telemedicinein caring for patients with COPD wasreported by PINNOCK et al. [36] in a random-ised trial study of 256 patients. Patientswho began the study with a history ofexacerbations and readmissions did notexperience a significant difference in post-poned readmissions or improved quality oflife when compared with the conventionalself-monitoring comparison group. They sug-gest that ‘‘the positive effect of telemonitor-ing seen in previous trials could be due toenhancement of the underpinning clinicalservice rather than the telemonitoring com-munication’’ [36].

Several clinical trials reported on inte-grated care for patients with COPD andmultiple comorbidities (PICCOPD+). A casemanager provided weekly phone contact tothe patients. Short-term telehealth follow-upafter hospital discharge for COPD involvedplacing telemedicine equipment at thepatient’s home. Each morning the COPDAssessment Test questionnaire was assessedusing the telemedicine equipment as well asrecorded extra use of COPD relief medica-tions. Also telespirometry and teleoximetry at4 and 12 weeks were performed in the home.When a clinical worsening was detected, thepatient was contacted and asked to performad hoc telespirometry and teleoximetry and tosend the data to the telehealth centre.Advanced e-Health for COPD in Colorado(USA) involved telehealthcare with an APRNand usual homecare. Nurse teleconsultationswith discharged COPD patients reduced thenumbers of readmissions. Telemonitoringvideo conferences using APRNs successfullymonitored COPD patient care.

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Additional studies have examined theimportance of cognitive function in patientswith COPD who receive telemedicine [37].Cognitive function, especially memory andattention, is more impaired in COPD patientsthan in healthy controls [38]. A recent studypublished by SCHOU et al. [38], from Denmark,investigated whether cognitive performancein patients with severe COPD and a mild-to-moderate exacerbation is better after tele-medicine-based treatment (‘‘virtual admis-sion’’) compared with conventional hospitaladmission. The study included patientsadmitted to a medical emergency departmentwith COPD exacerbations. Within 24 hoursafter admission, patients were randomised tocontinued treatment either in their own homewith telemedicine or in the hospital. Patientswere excluded if they had a Mini MentalState Examination (MMSE) score of lessthan 24 points and/or current severe psychi-atric disease. The authors concluded thatpatients with severe COPD suffering frommild-to-moderate exacerbations were able tomanage the telemedicine-based treatmentdespite the reduced cognitive function oftenseen in COPD patients and, more impor-tantly, practitioners operating telemedicinesystem should be aware of COPD patients’reduced cognitive function when consideringsystems that need a high level of self-management [39].

Regions of Europe Working Together forHealth

Patients with COPD were included in RenewingHealth (Regions of Europe Working Togetherfor Health), a large scale project carried out innine European regions targeting patients withdifferent chronic conditions. In the regionsof southern Denmark, Catalonia and centralGreece, the prevention of early hospital re-admissions of COPD patients were studied. Theoverall aim of Renewing Health was to confirmwhether ICS with the support of ICT (ICS–ICT)improve quality of life and user satisfaction,enable patient empowerment and have poten-tial for cost containment by reducing healthcareservice use. The details of the telemedicineinterventions and the technologies used differbetween the regions and ICS assessment.Detailed information at regional levels can befound at the Renewing Health website (www.renewinghealth.eu).

The study in Catalonia, Spain, evaluatedthe effects of a telehealth intervention forhome-based follow-up of COPD patientsdischarged from hospital after acute exacer-bation. Eight hospitals in Barcelona partici-pated in the study. A randomised controlledtrial design was performed, which included380 COPD patients allocated to interventionor usual care. Intervention was tailoredaccording to the patient’s clinical complexityand included: video-teleconsultations, dailyremote monitoring with sensors and accessto a call centre and to a web-based patienthealth portal. Assessment was performedat discharge and after a 3-month follow-up period. Economical and organisationalimpacts of the service were also evaluated.Assessment was based on the Model forAssessment of Telemedicine applications(MAST). The analysis of the data at clusterlevel is still ongoing.

A Cochrane systematic review of tele-healthcare for COPD [40] was performed,including only high-quality evidence fromrandomised trials, and found evidence ofpossible quality of life benefits of telehealth-care, as well as decreased emergency depart-ment visits and hospital admissions. Most ofthe interventions evaluated, however, werenot teleconsultation, but were a mixture oftelehealthcare as part of a complex interven-tion that also included case management by anurse or other interventions, which makesisolating the effect of the telemedicinecomponent difficult.

Telemedicine and cysticfibrosis

Cystic fibrosis (CF) is a severe genetic diseasewhich primarily affects the lungs and digest-ive system. In CF sufferers, a defective geneand its protein product cause the bodyto produce unusually thick, sticky mucus,obstructing the lungs and leading to lunginfections. An estimated 70 000 children andadults worldwide have CF. More than 75% ofpeople with CF are diagnosed by the age of2 years and, today, about half of the CFpopulation is aged 18 years or older. In the1950s, the life expectancy of children with CFwas so low that many did not reach primaryschool. However, tremendous progress in thefield of CF has led to dramatic improvementsin the length and quality of life for patients,

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extending life expectancy into the 30s, 40sand beyond. The technology skills of thesefamilies and young adults suggest thattelemedicine could be an important compo-nent of their treatment.

Children and adults with CF today havemore therapy options than they have ever hadbefore: medications to clear the mucus fromairways and reduce inflammation; aerosolisedantibiotics; and, recently, breakthrough gen-etic therapy to address the underlying causeof CF. Telemedicine is being used to trackpatient lung function daily in order toanticipate problems and adjust treatments,such as increasing breathing treatments orantibiotics, before they need to be hospital-ised. Telemedicine has been successfullyimplemented in schools to continue tomonitor the children.

Description of telemedicineinterventions for patients with CF

A feasibility study of home telemedicine forpatients with CF awaiting transplantationstudied 16 terminally ill patients with CF.Videoconferencing units connected to theirhome televisions were used for weekly con-ferences that included a clinical assessment,psychological counselling and discussionswith members of the multi-disciplinary team.Although there was no significant differencein psychological parameters of anxiety anddepression, patients liked and valued theservice and showed significant improvementin body image.

Assessing exercise capacity using tele-health for 10 adults with CF [41] demon-strated that exercise capacity assessmentusing the 3-min step test was feasible andaccurate using remote videoconferencing.Oxyhaemoglobin saturation and heart ratewere monitored accurately, although therewere no significant changes over time.Participants found the system easy to use,but metronome acoustics were reported to beproblematic for the clinician at the remotesite. Further study of the ability to anticipateexacerbations based on exercise capacityassessment is ongoing.

When CF patients using telemedicinewere compared with COPD patients alsousing telemedicine in the same study [42],exacerbations were detectable in both groups.However, the COPD patients were more

compliant, had relatively fewer hospitalisa-tions and reduced exacerbations. Thus,adherence appears to be an issue for CFpatients [43].

A systematic review of telehealth in CF

[44] found eight studies, of which seven

were feasibility studies, pointing to the rela-

tive novelty of using telemedicine in CF.

Significant findings in the intervention study

related to increased use of antibiotics and

improved spirometry stability. One challenge

in assessing feasibility was the relatively

high level of participant non-compliance (43%

to 63%) with transmission of spirometry data,

even though participants reported they were

able to use the equipment. The use of tele-

medicine for patients with CF is a promising

technology deserving further study.

Telemedicine andpulmonary hypertension

Pulmonary hypertension (PH) is a rare

(estimated prevalence of 15–50 cases per

million [45]) haemodynamic condition de-

fined as an increase in mean pulmonary

arterial pressure (PAP) of 25 mmHg at rest

determined by right heart catheterisation.

The prevalence of PH is most common in

patients with sickle cell disease, systemic

sclerosis and HIV [46–48] and symptoms are

shortness of breath, dizziness and fatigue

[49]. Due to the non-specific nature of

symptoms, PH is most frequently diagnosed

when patients are in advanced stages of the

disease [50].

Currently, there is no cure for PH and

treatment is solely aimed at improving

symptoms and exercise tolerance, long-term

outcomes and quality of life, as well as

slowing the rate of deterioration [51].

Disease management in PH is complex

involving a range of treatment options

including prevention and prompt treatment

of chest infections, as well as supportive

oxygen therapy and medication. As such,

there is no specific telemonitoring for at

home care of PH patients; however, support

for clinical decision making has been inves-

tigated. Telemedicine assessment supporting

lifestyle changes, medicines and post-

hospital care may alter the progression of

the disease [52].

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Description of telemedicineinterventions in PH

Diagnostic studies to obtain the final diagnosismay be remotely interpreted by the limitednumber of PH disease specialists. Complextreatment (pharmacological and non-phar-macological) regimens may be monitored bytelemedicine. Therapeutic education has amajor role to play in management of complexdiseases. The importance of therapeutic adher-ence in PH management suggests that self-monitoring systems could be as useful as theyhave been in other chronic diseases.Videoconferencing and monitoring of symp-toms and signs could improve outcomes.However, more research is needed in this area,using integrated care with the support of ICT.

What are the main reasonsto use telemonitors forpatients with CRD (andcomorbidities)?

PatientBecause of the concomitant chronic conditions,single disease-oriented clinical guidelines arenot adequate for management of comorbidconditions. There is a need for patient-centredcare to achieve an optimal management interms of biomedical requirements, especiallycandidates for homecare and rehabilitation.Caregivers appreciated telemedicine use andcontact with nurses in monitoring patients athome and patients were satisfied that telemedi-cine helps them feel supported after hospitaldischarge giving them confidence, so care isongoing and self-management can be improved.

ClinicianTelemonitoring supported pulmonary care athome and was a prevention strategy for acuteproblems through low-intensity home-basedservices coordinated by the clinical team withthe support of a specialised nurse casemanager. Home-based services could becoordinated with the potential support ofpulmonary nurses and oxygen services, withnurse coaching based on telemonitoring datafollowing guidelines prepared by physicians.

SystemIntegrated care services with the support oftelemonitoring integrates key components in

improving care for patients with chronicrespiratory diseases. Information sharingacross the healthcare system is a crucialelement to avoid duplication and extensiveuse of acute care resources (such as emer-gency rooms) in these patients.

What are the limitations oftelemonitors inmanagement of patientswith chronic respiratorydisease (and comorbidities)?

PatientIt can be more difficult to develop trust ofcare providers who are not actually present inthe home, and technology (especially forolder adults) may be intimidating, so tele-monitoring systems must be easy to use andnot be strenuous to use. Also, using tele-monitors may raise concerns for ‘‘medicalconsultation’’ privacy.

ClinicianRisk management from a distance has beena concern, often dependent on the level oftraining for the individual reviewing thedata. Clinician–patient relationships poten-tially can be further complicated by com-munication technology, especially when thedelivery system does not include visualcontact with the clinician. Clinicians at adistance may have difficulty communicatingif the patient develops dementia andimpaired senses.

SystemTelemedicine needs specific policies andprocedures to address risk of liability.Technological support may be limited in ruralareas so systems must be tested prior to full-scale implementation. Costs may increase asequipment changes and is updated. A ques-tion that continually impacts the system levelis how calculation of cost–benefit can bestbe approached. Telemedicine can alter thedoctor–patient relationship. Careful assess-ment of effectiveness, cost effectivenessand safety considerations is needed beforeintroduction. Potential pitfalls include userinterface problems, technical problems andsafety concerns, such as data loss andconfidentiality.

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What are the challenges oftelemedicine?

A major telemedicine cost-effectiveness studywas funded as the European Project, NEXES[16]. It was designed to explore the determi-nants of capacity building of innovative ICS–ICT systems across European Regions. Themain objective of NEXES was to validate fourICT-enabled ICS in large-scale trials, in thesetting of the chronic conditions: COPD,congestive heart failure and type II diabetesmellitus. The four integrated care systemsassessed in the NEXES project were:1) Wellness and Rehabilitation (n5337);2) Enhanced Care (n51340); 3) HomeHospitalization (n52404); and 4) Supportprogram to remote diagnosis (n58139).These studies were conducted in threedifferent sites, Barcelona (Spain), Athens(Greece) and Trondheim (Norway), usingboth randomised controlled trials and prag-matic study designs. Two ICT platforms wereused to support the ICS: 1) a healthinformation exchange platform (i.e. the‘‘Elin’’ platform) in Trondheim; and 2) ahealth information sharing platform (i.e.Linkcare) in Barcelona, and in Athens usinga service-oriented approach. The model forassessment of telemedicine applications wasadopted for evaluation purposes and theNEXES project was an example of goodpractice. The success lay in the translationof hospital complexity to the communityusing ICT as a supporting tool. NEXESformulated specific strategies for imple-mentation of these ICS at European level.

Best practices to develop telemedicine asa component of an ICS

Assessment

Screening via questionnaire can be built intothe system with patients prompted to com-plete the data. The nurse clinician can have

access to the clinical view using an officeplatform screen with easily accesible pastreports.

Intervention

Self-management supporting presence can bea virtual presence to respond to nonverbalcues, as well as when a patient feels the needfor contact. It is critical to have a plan and torespond with evidence-based interventionswhen risks are highlighted. Self-monitoringcan act as relapse prevention and result inpatients becoming more aware of their risksand responses.

Telemonitoring and telenursing (usingdata on patient knowledge, symptoms andbehaviour) can prevent derailment, supportdaily functioning, answer and monitor ques-tions, including anticipatory guidance and therecognition of ‘‘missed’’ symptoms.

Care provided includes specialisedinformation on demand via telephone orwebsite, advice for social needs, triage forappropriate care, and self-managementadvice or second opinions can be obtainedusing data records and visuals.

Lessons learned

Systems that can operate interchangeably(e.g. technical, languages) are key factorswhen moving from testing a telemedicinesystem to practical applications on a largerscale. Although geographic aspects mustbe considered in the ability of systems totransmit data, the ability to communicatewith other data sources must be considered.

Challenges of telemedicine

N Legal issues surrounding physicianlicensing and patient confidentiality

N LiabilityN CostN Reimbursement

Summary of the European Economicand Social Committee’s opinion ontelemedicine

N Telemedicine activity must be of at leastequivalent quality to a traditional activity

N The patient must be able to give theirfree consent

N User-friendly software is essentialN Medical confidentiality must be ensuredN Resulting documents must be secure

and recorded in the medical fileN Continuity of care must be ensured

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Prior to implementation, there should be areview of needs for clinical care, experimentaldata collection, different informational needsfrom providers and academia and, perhapsmost importantly, interoperability at organ-isational levels.

Another challenge to consider is reim-bursement in order to have financial sustain-ability. Consider the alignment between whatreimbursement is possible and how theprocesses included in the telemedicine careprogrammes (services) can be reportedcongruent with reimbursement requirements.For actualisation of telemedicine by clini-cians/practices, financial factors that can beused as incentives will be needed to supportutilisation and sustainable adoption.

Evidence of benefits is needed to developsystems and policy changes. Strong evidencehas been lacking due to heterogeneity oftelemedicine studies; societal perspectiveson preferring ‘‘high touch rather than high

tech’’; limited use of appropriate methodologyto show efficacy in terms of clinical outcomes,cost containment, satisfaction of patients andpotential for generalisation. Assessment mod-els such as MAST, although not withoutlimitations, are essential to document value.

Regulatory issues must be considered asnew roles for professionals are developed.Licensing to provide care in areas with differentlaws can limit the ability to provide telemedi-cine care across borders. Structural changes inorganisations who are the key stakeholders maybe needed to support data sharing. Informationsharing and transfer of responsibilities amonglevels of care and among providers must bedesigned into telemedicine care protocols.Novel uses of equipment and software applica-tions have different implications at inter-national levels, and national/regional levels.As telemedicine systems are planned andimplemented, there will be a constant need tore-evaluate and investigate new options. Finally,implementing a telemedicine service requiresconsideration of human factors and relatedorganisational characteristics that involve cul-tural, educational and motivational aspects ofthe patient and clinician who are at differentlevels of the healthcare systems.

Conclusions

The development of telemedicine has beendriven partly by technological advances. Itspotential role has been highlighted by theEuropean Commission for more than adecade in order to address the issues ofan ageing population, chronic conditionsand rising healthcare costs. The EuropeanCommission’s action plan for a European ‘‘e-Health area’’ states several goals to itsmember states and has set a deadline forthe widespread deployment of telemedicineservice of 2020. A recent consultation on ane-Health action plan for 2012–2020 reportedthat there was a need to support deploymentof research results and that more flexiblefinancing mechanisms for research andinnovation needed to be provided. Theresearch should outline the benefits andcosts, and the effectiveness and usefulnessof telemedicine solutions. Studies of factorsthat could limit adoption of systems sup-ported by ICT are also needed [53]. A recentpaper provided a literature review of the valueof telemedicine in the management of five

Educational questions

1. All of the following are components of the definition of telemedicineexcept:

a. Advanced information and communication technologies used totransmit information electronically.b. Patient keeps a record of self-monitored information in a daily logand brings it to the clinician at the next visit for review.c. Electronic medical devices to support the delivery of clinical cared. Electronic medical devices to support the delivery of professionaleducatione. Electronic medical devices to support the delivery of health relatedadministrative services

2. Many patients living at home could benefit from telemedicine.Organised screening is important to identify those patients who wouldbenefit from telemonitoring. Screening would include at a minimum thepatient/family’s ability to use the equipment, safety of usingtelemedicine in the home, and the availability of local service forsending information.

a. Trueb. False

3. The European Economic and Social Committee’s opinion ontelemedicine includes all except:

a. The medical act must be of at least equivalent quality to atraditional act.b. The patient must be able to read the formsc. Medical confidentiality must be ensuredd. Resulting documents must be secure and recorded in the medicalfilee. Continuity of care must be ensuredf. User-friendly software

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common chronic diseases (asthma, COPD,diabetes, heart failure and hypertension) overthe past 20 years [4]. The review concluded thatthe evidence base for the value of telemedicinein managing chronic diseases is, on the whole,weak and contradictory, and may be related tothe fact that most studies were conducted overa period of 6 months or less; it is challenging toshow a change in chronic disease managementover such a short time period. Nevertheless,studying telemedicine solutions amongpatients with chronic respiratory diseasesdemonstrates high levels of acceptance ofthese applications, such as appointment book-ing, prescription renewal and access toinformation (laboratory test results, edu-cational resources, etc.), and a challenge insupporting the comparative effectiveness ofsolutions directly related to medical care(communication with healthcare providers,disease monitoring, patient outcomes, etc.) [54].

Using telemedicine, patient satisfaction ishigh, while provider satisfaction is mixed.Research on clinical efficacy has mixedresults. Unequivocal evidence of the relativeefficacy or cost-effectiveness of telemedicinehas not yet materialised despite many yearsof effort across perhaps 1500 individualstudies. Nevertheless, the application oftelemedicine in practice has been usefulwhen best practices are followed in designand implementation with a system changeapproach. Considering the value of improvedquality of life and productivity, there havebeen great returns on investments in applyinghealth technology to respiratory care.

AcknowledgementsWe are grateful to Dr. Josep Roca of theHospital Clinic, Barcelona Spain for hisassistance in preparation of this article.

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