We performed a trial with Internet-enabled programmes based on home groups for comprehensive pulmonary rehabilitation and diabetes self-management education. The purpose of this feasibility study was to assess patient acceptability of the delivery form and the components of the home programmes.
Pulmonary rehabilitation programme at home
The home-based pulmonary rehabilitation programme we developed was based on an existing comprehensive and multidisciplinary outpatient programme at the University Hospital of North Norway. The outpatient programme encompassed supervised group-based exercise training, individual exercising, group education and patient outcome assessment. The programme lasted eight weeks, the participants enrolled at the same time, and they participated twice a week at the rehabilitation centre.
The home programme was tailored to people with very severe COPD, GOLD stage IV, receiving long-term oxygen therapy (LTOT), due to their need for adequate patient education . The burden of oxygen therapy itself has also been found to be a factor associated with non-attendance at pulmonary rehabilitation . The home-based rehabilitation programme included weekly group education, group exercising, and individual consultations, lasting six weeks.
A multidisciplinary team of health professionals including a pulmonary nurse, physiotherapist, specialist and nutritionist delivered the group education. The education sessions focused on general themes in COPD as well as themes specific to LTOT, such as oxygen use while travelling. The healthcare personnel had the role of mediators in the education sessions. In preparation for each session, the participants were requested to watch one or more tailored educational videos we made on the subject. The videos, featuring the healthcare personnel delivering the education sessions, were not of professional TV broadcasting quality, and varied in length from 10 to 40 minutes.
A physiotherapist supervised the group exercise sessions, and a video featuring the same physiotherapist was intended for additional exercising at home during the week. The home exercise programme was based on the exercise programme at the rehabilitation centre, and was intended to strengthen upper and lower extremities and to increase thorax flexibility. Background music was used, and the physiotherapist guided and monitored the group exercise sessions based on visual feedback. The exercise sessions lasted half an hour.
The pulmonary nurse and physiotherapist alternated between giving the individual consultations, which were intended for elaboration upon individual health issues that were not suitable to discuss in the presence of peers. A digital health diary on TV, to be updated daily, was intended both as background information for the consultations and for self-management purposes. The digital health diary included questions on oxygen usage, medication, oxygen saturation, physical activity, well-being, and nutrition.
As part of the programme, an in-person start-up meeting was arranged. Our assumption was that the participants would be more comfortable as a videoconferencing group if they had first met in person. The meeting included a supervised group exercise session, a LTOT specific lecture, and a presentation and demonstration of the technology.
For practical and financial reasons, the home programme was two weeks shorter than the outpatient rehabilitation programme. We considered the duration adequate to provide insight into patient acceptability.
Diabetes group education at home
The home education programme for diabetes self-management was developed based on two existing programmes at the University Hospital of North Norway: 1) A group-based outpatient programme in diabetes self-management education given by a multidisciplinary team of health professionals over two consecutive days and 2) a phone support line for individual consultations run by the diabetes nurse coordinating the outpatient programme.
The diabetes home programme included weekly group education and individual consultations. We wanted to assess patient acceptance of a home-group education programme lasting several weeks, and six weeks was chosen for practical and financial reasons.
A multidisciplinary team of health professionals including a diabetes nurse, a nutritionist and a physiotherapist provided the group education sessions, where they also had the role of mediators. In preparation for each session, the participants were expected to watch one or more tailored educational videos we had made. As for the COPD programme, the videos were not of professional TV broadcasting quality, they varied in length from 10 to 40 minutes, and they featured the same healthcare personnel who delivered the education sessions.
There were weekly individual consultations with the diabetes nurse. Each participant had a digital health diary on TV. As for the COPD programme, the diabetes diary was to be updated daily, for self-management purposes and to provide background information for the individual consultations. It included blood glucose readings and questions on physical activity, well-being and nutrition.
For this group, too, there was an in-person start-up meeting so that the participants could get to know each other before the videoconferencing group sessions. The in-person start-up meeting included lectures, and a presentation and demonstration of the technology.
The technical platform
The prototype technical platform consisted of the user’s own TV connected to a computer, the Residential Patient Device, and a remote control, dedicated to this purpose [10, 11]. We used a small form-factor computer (Soltek Qbic) running Slackware Linux as the Residential Patient Device, and implemented the software system using web technologies and open-source software components. The Residential Patient Device provides local data storage, a secure and reliable communication channel over the Internet between the home and the public health service, and functionality for orchestrating comprehensive home-based health services. This includes the possibility of text- and video-based educational material, multiparty videoconferencing, and a health diary with disease-related questions and wireless transmission or manual entry of sensor data (in our case oxygen saturation, heartbeat and blood glucose values). The questions in the diary were multiple-choice with predefined answers.
For the audiovisual communication, a web camera and a wired headset with a microphone were used. The health diary information was transferred to the hospital information system in advance of the weekly individual consultation. The patient did this by explicitly pressing a ‘send’ button. Automatic transfer of the health diary information would also have been possible; however, from a self-management perspective, we decided to give the user explicit control of the health diary.
The healthcare professionals were located at the hospital outpatient clinic. A commercial stand-alone videoconferencing system (Tandberg Maestro) was used in the group sessions, with a large image projected onto the wall. A computer-based open-source videoconferencing system (GnomeMeeting) was used for the individual consultations.
With the commercial stand-alone videoconferencing system, six sites could be connected simultaneously. In the group sessions, the participants could see each other on the TV screen. The screen was divided into one large and five smaller images. In the education sessions, the largest image was that of the person speaking, and the other participants were visible in the smaller images. In the exercise sessions, the physiotherapist was always allocated the largest image. During exercising, the loudspeaker on TV was used for accompanying music, and the participants removed their headset in order to avoid breathing noise.
The users’ broadband Internet connections had an upload bandwidth of 250–400 kbps, and downlink bandwidth of 1000–2000 kbps. This was the fastest available to the participants at that time. Information security measures in the system included encryption (storage and transmission), authentication and automatic logout after a period of non-usage.
Five participants with COPD in GOLD stage IV receiving LTOT were recruited; two were female and three male. All were over 40, which is the most common age range in which people are diagnosed with COPD . One participant was in the age group 45–54, two were in the age group 55–64, and two were in the age group 65–74. They all lived in the county of Troms (an area of 25,000 square km with a scattered population). For three participants, the distance between home and the outpatient clinic was in the range 0.5–9 km, and for two participants it was in the range 80–90 km. The participants had previously participated in pulmonary rehabilitation, three of them at the hospital outpatient clinic. Four were living alone, and one with family. All were retired. Two of the participants were non-computer users, two used the Internet at least once a week but not every day, and one used the Internet daily or nearly every day.
Five participants with diabetes were recruited, three female and two male. One of them was in the age group 35–44, two were in the age group 45–54, one was in the age group 55–64 and one in the age group 65–74. None had attended an education programme for diabetes self-management previously. However, several had used other sources for information on diabetes. One of the participants was living alone, and the other four with family. Three of the participants were retired. They all lived in the county of Troms. The distance from the outpatient clinic was around 5 km for two of them; for the other three it was in the range 90–160 km. One of the participants was a non-computer user, two used the Internet at least once a week but not every day, and two used the Internet daily or nearly every day.
We considered a group size of five adequate to provide insight into acceptability, even though this was a limitation imposed by the specific videoconferencing technology.
Healthcare personnel at the hospital outpatient clinic recruited the participants. The participants received written and oral information about the project, and gave written informed consent for the study.
Ethical and legal issues
An application for approval was sent to the regional ethics committee. The committee decided that ethical approval was not needed for the study. To fulfil the requirements of Norwegian legislation on processing of personal data, risk assessment was performed.
Training and technical support
Both participant groups were given a demonstration of the system at the in-person start-up meeting, and had an additional technical walk-through when the system was installed at their homes. They also had a short user manual, and could call technical support during the trial period. A videoconferencing test session was held with each of the patient groups before the first group session. This served both as a technical test at all sites, and as an opportunity for the participants to become more familiar with the technology.
The healthcare staff participating in the trial were offered an introductory session, lasting approximately an hour, to familiarise themselves with the videoconferencing system. During the videoconferencing sessions, technical support staff were available to provide help if needed. All the healthcare professionals had extensive experience of providing hospital-based outpatient pulmonary rehabilitation and diabetes education. One of them had extensive experience of using videoconferencing, while the others had little or no experience. Both genders were represented.
Data collection and analysis
We developed and used a semi-structured interview guide common to both diabetes and COPD, with additional questions on exercising for the COPD participants. The interview guide contained principal open-ended questions developed to assess patient acceptability of the home programme delivery and of the different programme components. The primary themes were the general impression of the home programme and user perceptions of the in-person start-up meeting, the education sessions, the educational videos, the exercising sessions and the exercise video (COPD only), the individual consultations and the digital health diary.
The participants were interviewed individually by one of the authors, face to face at home for approximately one hour, after the trials in late 2005. The interviews were taped and transcribed. The interview quotes in this article were translated into English from the informants’ native language, Norwegian. They are labelled P1-P5 for the COPD participants and P6-P10 for the diabetes participants.
Three of the authors read through and structured the transcribed material, and an additional two authors participated in the further analysis. Structuring was performed by means of a “meaning categorization” , in which the material was categorised according to the study's main themes and relevant sub-categories. This structuring functioned as a sorting and preparation of the material before extraction of positive and negative aspects regarding the issues raised and responded to by the participants. The coded material was organised in a matrix to provide an overview of the categories and make it easier to study the relationships between them . Thus an “issue-focused” analysis was performed , aimed at compiling and comparing the respective participants' responses, a so-called cross-case analysis .