Background: GOLD 2023 defines an exacerbation of COPD (ECOPD) by a deterioration of breathlessness at rest (BaR), mucus and cough. The severity of an ECOPD is determined by the degree of BaR, ranging from 0 to 10. However, it is not known which symptom is the most important one to detect early of an ECOPD, and which symptom that predicts future ECOPDs best. Thus, the purpose of the present study was to find out which symptom is the most important one to monitor.Methods: We analysed data on COPD symptoms from the telehealth study The eHealth Diary. Frequent exacerbators (n = 27) were asked to daily monitor BaR and breathlessness at physical activity (BaPA), mucus and cough, employing a digital pen and symptom scales (0-10). Twenty-seven patients with 105 ECOPDs were analysed. The association between symptom development and the occurrence of exacerbations was evaluated using the Andersen-Gill formulation of the Cox proportional hazards model for the analysis of recurrent time-to-event data with time-varying predictors.Results: According to the criteria proposed by GOLD 2023, 42% ECOPDs were mild, 48% were moderate and 5% were severe, while 6% were undefinable. Mucus and cough improved over study time, while BaR and BaPA deteriorated. Mucus appeared earliest, which was the most prominent feature of the average exacerbation, and worsening of mucus increased the risk for a future ECOPD. There was a 58% increase in the risk of exacerbation per unit increase in mucus score.Conclusion: This study suggests that mucus worsening is the most important COPD symptom to monitor to detect ECOPDs early and to predict future risk for ECOPDs. In the present study, we also noticed a pronounced difference between GOLD 2022 and 2023. Hence, GOLD 2023 defined the ECOPD severity much lower than GOLD 2022 did.

Introduction: In this article, we explore to what extent it is possible to leverage on very small data to build machine learning (ML) models that predict acute exacerbations of chronic obstructive pulmonary disease (AECOPD).Methods: We build ML models using the small data collected during the eHealth Diary telemonitoring study between 2013 and 2017 in Sweden. This data refers to a group of multimorbid patients, namely 18 patients with chronic obstructive pulmonary disease (COPD) as the major reason behind previous hospitalisations. The telemonitoring was supervised by a specialised hospital-based home care (HBHC) unit, which also was responsible for the medical actions needed.Results: We implement two different ML approaches, one based on time-dependent covariates and the other one based on time-independent covariates. We compare the first approach with standard COX Proportional Hazards (CPH). For the second one, we use different proportions of synthetic data to build models and then evaluate the best model against authentic data.Discussion: To the best of our knowledge, the present ML study shows for the first time that the most important variable for an increased risk of future AECOPDs is "maintenance medication changes by HBHC". This finding is clinically relevant since a sub-optimal maintenance treatment, requiring medication changes, puts the patient in risk for future AECOPDs.Conclusion: The experiments return useful insights about the use of small data for ML.

Introduction Growing populations of elderly patients with chronic obstructive pulmonary disease (COPD) or heart failure (HF) require more healthcare. A four-year telehealth intervention - the Health Diary system based on digital pen technology - was implemented. We hypothesized that study patients with advanced COPD or HF would have lower rates of hospitalization when using the Health Diary. The aim was to investigate the effects of the intervention on healthcare costs and the number of hospitalizations, as well as other care required in COPD and HF patients. Methods Patients were introduced to the telemonitoring system which was supervised by a specialized hospital-based home care (HBHC) unit. Staff associated with this unit were responsible for the healthcare provided. The study included patients with COPD or HF, aged amp;gt;= 65 years who were frequently hospitalized due to exacerbations - at least two inpatient episodes within the last 12 months. Observed number of hospitalizations and total healthcare costs were compared with the expected values, which were calculated using the generalized estimating equations (GEE) method. Results A total of 36 COPD and 58 HF patients with advanced stages of disease were included. The number of hospitalizations was significantly reduced for both HF and COPD patients participating in telemonitoring. Accordingly, hospitalization costs were significantly reduced for both groups, but the total healthcare cost was not significantly different from the expected costs. Conclusion A telemonitoring system, the Health Diary, combined with a specialized HBHC unit significantly decreases the need for hospital care in elderly patients with advanced HF or COPD without increasing total healthcare costs.

Background: Elderly, multimorbid patients with advanced chronic obstructive pulmonary disease (COPD) and/or chronic heart failure (CHF) exhibit poor health-related quality of life (HRQoL). Telemonitoring, based on digital pen technology, supported by hospital-based home care (HBHC) significantly reduces the number of hospitalizations. We hypothesized that the same intervention would prevent the deterioration of HRQoL that follows upon disease progression. Methods: Elderly computer-illiterate subjects with amp;gt;= 2 hospitalizations the previous year were included. HRQoL was assessed at inclusion (baseline) and at 1, 6 and 12 months employing EuroQol-5 Dimensions (EQ-5D) and RAND-36 for general HRQoL, and Minnesota Living with Heart Failure Questionnaire (MLHFQ) and St. Georges Respiratory Questionnaire (SGRQ) for disease-specific HRQoL. Healthcare contacts, hospitalizations, as-needed medications, prescription changes and healthcare costs were registered. Results: Ninety-four patients were enrolled of which 53 subjects completed the 12-month study period. Compared to baseline, most domains of RAND-36 were improved significantly at 1 time-point or more. Only among COPD subjects, the disease-specific HRQoL was worsened at the 12 month evaluation. Measures of healthcare dependency were associated with poor HRQoL. Conclusion: The Health Diary system and HBHC together improve general HRQoL, and measures of healthcare dependency are associated with HRQoL variables.

In the era of data-driven science, corpus-based language technology is an essential part of cyber physical systems. In this chapter, the authors describe the design and the development of an extensible domain-specific web corpus to be used in a distributed social application for the care of the elderly at home. The domain of interest is the medical field of chronic diseases. The corpus is conceived as a flexible and extensible textual resource, where additional documents and additional languages will be appended over time. The main purpose of the corpus is to be used for building and training language technology applications for the “layfication” of the specialized medical jargon. “Layfication” refers to the automatic identification of more intuitive linguistic expressions that can help laypeople (e.g., patients, family caregivers, and home care aides) understand medical terms, which often appear opaque. Exploratory experiments are presented and discussed.

Background: Elderly patients with advanced stages of COPD or chronic heart failure (CHF) often require hospitalization due to exacerbations. We hypothesized that telemonitoring supported by hospital-based home care (HBHC) would detect exacerbations early, thus, reducing the number of hospitalization. We also speculated that patients with advanced COPD or CHF would present differences regarding exacerbation frequency and the need of HBHC. Methods: The Health Diary system, based on digital pen technology, was employed. Patients aged amp;gt;= 65 years with amp;gt;= 2 hospitalizations the previous year were included. Exacerbations were categorized and treated as either COPD or CHF exacerbation by an experienced physician. All HBHC contacts (home visits or telephone consultations) were registered. Results: Ninety-four patients with advanced diseases were enrolled (36 COPD and 58 CHF subjects) of which 53 subjects (19 COPD and 34 CHF subjects) completed the 1-year study period. Death was the major reason for not finalizing the study. Compared to the 1-year prior inclusion, the intervention significantly reduced hospitalization. Although COPD subjects were younger with less comorbidity, exacerbations and HBHC contacts were significantly greater in this group. Conclusions: COPD subjects exhibit exacerbations more frequently, mainly due to disease characteristics, thus, demanding much more HBHC.

RSP-QL was developed by the W3C RDF Stream Processing (RSP) community group as a common way to express and query RDF streams. However, RSP-QL does not provide any way of annotating data on the statement level, for example, to express the uncertainty that is often associated with streaming information. Instead, the only way to provide such information has been to use RDF reification, which adds additional complexity to query processing, and is syntactically verbose. In this paper, we define an extension of RSP-QL, called RSP-QL*, that provides an intuitive way for supporting statement-level annotations in RSP. The approach leverages the concepts previously described for RDF* and SPARQL*. We illustrate the proposed approach based on a scenario from a research project in e-health. An open-source implementation of the proposal is provided and compared to the baseline approach of using RDF reification. The results show that this way of dealing with statement-level annotations offers advantages with respect to both data transfer bandwidth and query execution performance.

Background: Populations of elderly patients with chronic obstructive pulmonary disease (COPD) or heart failure (HF) are growing. To prevent exacerbations leading to inpatient care, a 4 year (2013-2017) telehealth intervention non-randomized single-centre clinical study was performed. We hypothesized that the patients, grouped by advanced COPD or HF, would exhibit decreased need of hospital admissions.

Objective: To study hospital admissions in patients with COPD or HF using a telemonitoring system, the Health Diary.

Methods: A telemonitoring system, the Health Diary, based on digital pen technology, was employed. Patients with COPD or HF treated at the University Hospital in Linköping were included if they had at least 2 hospital admissions the previous year. Data on hospital admissions was obtained from the administrative healthcare database. Expected number of hospital admissions for the study year was calculated using 5-year data for a group of patients with matching diagnosis and history of hospital admissions and was compared to the actual value in the intervention group using Poisson regression.

Results: Together with the included patients, 159 HF and 136 COPD non-intervention patients was used to calculate the expected values for hospital admissions. For the 58 included HF patients, the average number of hospital admissions of 0.81 was 32.8 percent (p=0.04) lower than expected. For the 36 included COPD patients, the average number of hospital admissions of 1.44 was 37.0 percent (p=0.02) lower than expected.

Conclusions: Use of the telemonitoring system, the Health Diary, decreases hospital admissions in elderly with COPD and HF.

Background: Populations of elderly patients with advanced stages of chronic obstructive pulmonary disease (COPD) or heart failure (HF) are growing, urging the need for specialized health care in the patients’ home. A 4 year (2013-2017) telehealth intervention single-centre clinical study has been completed. We hypothesized that the two groups of patients, advanced COPD or HF, would exhibit differences regarding exacerbations and the need of health care.

Objective: To study exacerbations of COPD or HF, and patients’ need of health care.

Methods: A telemonitoring system, the Health Diary, which is based on digital pen technology, was employed. Patients with at least 2 hospital admissions the previous year were included. Responsible nurses and physicians at a specialized home care unit at a university hospital checked all daily patient reports. Physicians identified exacerbations using information provided through the telemonitoring system and patient contacts. Consumed health care was assessed as the number of patient contacts (home visits or telephone consultations).

Results: Totally, 94 patients with advanced disease were enrolled (36 COPD and 58 HF patients) of which 53 patients (19 COPD and 34 HF patients) completed the 1-yr study period. The major reason for not completing the study was death (13 COPD, 15 HF patients). Average numbers of exacerbations were 3.1 and 0.8 and patient contacts were 94 and 67 per COPD and HF patient, respectively.

Conclusions: Compared to HF patients, COPD patients exhibit exacerbations more frequently and demand much more home health care. This difference of health care consumption is mainly due to disease characteristics.

This paper presents the motivation and challenges to developing semantic interoperability for an internet of things network that is used in the context of home based care. The paper describes a research environment which examines these challenges and illustrates the motivation through a scenario whereby a network of devices in the home is used to provide high-level information about elderly patients by leveraging from techniques in context awareness, automated reasoning, and configuration planning.

Telehealth programs for heart failure have been studied using a variety of techniques. Because currently a majority of the elderly are nonusers of computers and Internet, we developed a home telehealth system based on digital pen technology. Fourteen patients (mean age, 84 years [median, 83 years]) with severe heart failure participated in a 13-month pilot study in specialized homecare. Participants communicated patient-reported outcome measures daily using the digital pen and health diary forms, submitting a total of 3 520 reports. The reports generated a total of 632 notifications when reports indicated worsening health. Healthcare professionals reviewed reports frequently, more than 4700 times throughout the study, and acted on the information provided. Patients answered questionnaires and were observed in their home environment when using the system. Results showed that the technology was accepted by participants: patients experienced an improved contact with clinicians; they felt more compliant with healthcare professionals advice, and they felt more secure and more involved in their own care. Via the system, the healthcare professionals detected heart failure-related deteriorations at an earlier stage, and as a consequence, none of the patients were admitted into hospital care during the study.

Background: Growing populations of elderly patients with advanced stages of COPD or heart failure (HF) urge the need for specialized health care in the patients' home. A telemonitoring study has been initiated including patients using digital pens. Health care was provided by the specialized home care unit at a university hospital. Through an IT system the staff checked all daily patient reports. We hypothesized that the two groups of patients, advanced COPD or HF, would exhibit differences regarding exacerbations and the need of health care.

Objective: To study exacerbations of COPD or HF, and patient health care consumption.

Methods: A tele-monitoring system, the Health diary, which is based on digital pen technology, was employed. Exacerbations were identified using information provided through the telemonitoring system. Consumed health care was assessed as the number of patient contacts (home visits or telephone consultations).

Results: Presently, 33 patients with advanced disease are enrolled (13 COPD and 20 HF patients) of which 11 patients (6 COPD and 5 HF patients) have completed the 1-yr study period or have died during the study period (2 COPD and 4 HF patients). Exacerbations were 2.8 and 0.8 and patient contacts were 96 and 42 per COPD and HF patient, respectively. While HF patients were significantly older than COPD patients, the two groups demonstrated no difference regarding gender distribution and comorbidity.

Conclusions: COPD patients exhibit exacerbations more frequently and demand much more home health care than patients with HF do. It seems that this difference of health care consumption is mainly due to disease characteristics.

Telehealth solutions should be available also for elderly patients with nointerest in using, or capacity to use, computers and smartphones. Fourteen elderly,severely ill heart failure patients in home care participated in a telehealth study andused digital pens for daily reporting of their health state—a technology never usedbefore by this patient group. After the study seven patients and two spouses wereinterviewed face-to-face. A qualitative content analysis of the interview materialwas performed. The informants had no experience of computers or the Internet andno interest in learning. Still, patients found the digital pen and the health diaryform easy to use, thus effortlessly adopting to changes in care provision. Theyexperienced an improved contact with the caregivers and had a sense of increasedsecurity despite a multimorbid state. Our study shows that, given that technologiesare tailored to specific patient groups, even “the digital illiterate” may use theInternet.

Considering that a majority of elderlies are non-users of computers and Internet we developed a telemonitoring system for elderly heart failure (HF) home care patients based on digital pen technology - a technology never used before by this patient group. We implemented the system in clinical use in a 13 months long study. Fourteen patients (mean/median age 84 years) with severe HF participated. They accepted the technology and performed daily reports of their health state using the digital pen and a Health Diary form. Via the system the clinicians detected all HF-related deteriorations at an early stage and thereby prevented hospital re-admissions for all patients during the study, implying improved symptom control and large cost savings.

Good symptom control in palliative end-of-life home care requires adequateaccess to patients’ symptom assessments. The aim of the study was to investigatethe feasibility of an electronic symptom assessment reporting system tosupport symptom control. A randomised controlled study was performedduring April 2008–December 2009. The intervention consisted of a networkeddigital-pen-based information system. The primary outcome measure chosenwas the time span from the patient’s reporting of a symptom to the careproviders’ noticing this assessment. Patients with at least moderately severesymptoms were invited to participate in the study. Eighteen (11 intervention,seven control) patients from four home care centres participated, submittinga total of 330 symptom assessments. There was a significantly shorter mediantime span from reporting to noticing for assessments in the intervention group.The system used allowed both frequent and regular symptom reporting frompatients that can contribute to more correct and prompt medical decisions inpalliative end-of-life home care. Trial registration number: ISRCTN09750271.Health Systems (2013) 2, 171–180. doi:10.1057/hs.2013.4;published online 17 May 2013; corrected online 4 June 2013

In order to counteract the digital divide and to enable the society to reach all its citizens with various kinds of e-services, there is a need to develop access methods and terminal technologies suited also for groups with weak access to the Internet, not the least elderly and people needing care in their homes. In this chapter, the authors will describe technologies for using digital pen and paper as data input media for e-services and computing applications, refer a number of applications together with studies and evaluations of their usability, and finally comment upon future prospects for integrating digital pen and paper as an effortless technique for data capture, especially in order to counteract and diminish the digital divide. The use of digital pen and paper technologies is exemplified with applications demonstrating its appropriateness in home care for elderly, for free-form recording of data on paper such as maps, and as a remote control for a TV set or other electronic appliances with rich functionality in the home.

An information system supporting pain assessment in palliative home healthcare was implemented at the hospital-based home care clinic of University Hospital in Linkoping, Sweden. Using digital pens and pain diaries, pain assessments were sent from the patients home to the professional caregiver. A total of 12 patients participated in the study. Patients, spouses and professional caregivers were interviewed. Qualitative content analyses were performed on the study material. All patients managed to use the pain assessment method, they experienced an improved contact with the caregivers and had a sense of increased security. After an initial cautious outlook the caregivers experienced positive outcomes for themselves and their patients. The medical records showed that the method had had impact on treatment. In conclusion, the home healthcare solution provided an effortless method for pain assessment with a high degree of user acceptance for palliative patients and had positive influences on the care.

Background: Appropriate pain assessment is a necessary prerequisite for adequate pain control. A way to follow-up on the pain is to let patients use paper-based or electronic pain diaries.

Purpose: The aim was to explore and describe palliative home care patients’ experiences of assessing their pain by using a pain diary together with digital pen and mobile Internet technology.

Methods: A system for the follow-up of pain treatment was developed and evaluated by means of a qualitative cross-case content analysis. From December 2002 until September 2003 12 palliative patients, who initially assessed VAS pain ≥ 35 mm (VAS 0–100 mm), used the system. Patients reported their momentary pain intensity and the number of consumed extra doses of analgesics three times per day. Analysis data were collected from interviews with patients and spouses, questionnaires, medical records, and the system log.

Results: In spite of severe illness and difficulties in comprehending the technology and system intervention, patients found the pain diary and digital pen easy to use for pain assessment. Patients took a greater part in their own care and experienced an improved contact with their caregivers, which led to a sense of increased security. The medical records showed a quick response to variations in the patients’ health status by means of changes in medical treatment.

Conclusions: The pain assessment system for palliative patients using pain diaries together with digital pen and wireless Internet technology constitutes an effortless method and has positive influences on the care.

Frequent pain assessment by the use of pain diaries for the follow-up of pain treatment can facilitate the caregivers' work with pain control in home health care. The aim was to explore and describe professional caregivers' experiences of palliative home health-care patients' use of pain diaries and digital pen technology for frequent pain assessment. A system for the follow-up of pain treatment was implemented in routine care and evaluated by means of a qualitative content analysis. Three nurses, two physicians and one secretary were interviewed. Additional analysis data were collected from patients' medical records, and the system log. The caregivers showed a shifting outlook towards the pain-assessment method, an initial cautious outlook due to low expectations of the patients' abilities to use the pain assessment method. Despite this, the caregivers experienced positive outcomes in terms of an increased awareness of pain, and positive patient influences including increased participation in their care, increased security, and improved changes in pain treatment as a response to reported pain assessments. Pain assessment by the use of pain diaries and digital pen technology has positive influences on palliative home-care patients and supports the caregivers' focus on the pain.

When care is moved from the hospital to the home the demands for high quality care still remain. For problems arising from the geographical separation of patients and professional caregivers, information and communication technology may offer important solutions. The overall aim of this thesis was to describe relevant requirements, to design and implement an IT-based system, and finally to evaluate the system’s influence on symptom control and support for both patients/next-of-kin and professional caregivers in advanced home healthcare. Of importance were needs in basic as well as advanced home healthcare, as were usability perspectives of both patients and professional caregivers. Requirement areas such as security, mobility, and responsibility, which should be considered when monitoring patients in the home, were identified. A prototype system for everyday assistance for diabetes patients was designed, and a system for frequent pain assessment for palliative home healthcare patients using a pain diary, digital pen and mobile Internet technology, was developed and evaluated through a qualitative content analysis approach. Twelve palliative cancer patients and six professional caregivers participated. The data collected included an ease-of-use questionnaire, and interviews with patients, spouses and professional caregivers. Patients expressed increased and improved contact with the caregivers, increased participation in their own care, a sense of increased security, and easiness in using the equipment in spite of severe illness and difficulties in comprehending the technology and system intervention. The professional caregivers showed a shifting outlook towards the pain assessment method; an initial cautious outlook due to low expectations of the patients’ abilities to use the pain assessment method and the caregivers’ own reluctance to use the system and change their way-of-working. Despite this, the professional caregivers experienced positive outcomes in terms of an increased awareness of pain, and positive patient influences including increased participation in their care, increased security and improved changes in pain treatment as a response to reported pain assessments. In conclusion, the networked digital pen system provided an effortless method for pain assessment and had positive influences on the care. The results imply that digital pen technology is suitable for the assessment of symptoms by palliative patients since these patients often have a limited capacity to handle technology due to their state of health.

Symptom control is one of the most important components of delivering effective palliative care, and adequate symptom assessment is a prerequisite for good symptom control. Patients receiving treatment in palliative home healthcare is geographically separated from the caregivers making symptom control a challenge, a challenge that could be met by the use of information and communication technology. Technologies of today offer different ways for patients to assess their symptoms at home and send the assessments to the healthcare provider. Examples are the use of a PC, a touch-tone telephone, and a digital pen, which require different kinds of infrastructure in the patient's home, and which differ in strengths and weaknesses. As part of an ongoing quality assurance work within the hospital-based home care clinic at Linköping University Hospital, the project has designed, developed and implemented an IT-support system for pain assessments for patients at home using digital pen and mobile Internet technology. A questionnaire study indicated that pain assessment using digital pens was accepted by patients and that problems mainly arose from the use of the visual-analogue scale.

The growing number of the elderly in industrialised countries is increasing the pressure on respective health care systems. This is one reason for recent trends in the development and expansion of home health care organisations. With Internet access available to everyone and the advent of wireless technologies, advanced telehomecare is a possibility for a large proportion of the population.

In the near future, one of the authors plans to implement a home health care infrastructure for patients with congestive heart failure and patients with chronic obstructive pulmonary disease. The system is meant to support regular and ad-hoc measurements of medical parameters in patient homes and transmission of measurement data to the home health care provider.

In this paper we look at network technologies that connect sensors and input devices in the patient home to a home health care provider. We consider wireless and Internet technologies from functional and security-related perspectives and arrive at a recommendation for our system.

Security and usability aspects of the proposed network infrastructures are explored with special focus on their impact on the patient home.

The population's wish to receive care in the own home instead of at a hospital fits well with the Health Services' development in the direction of increasing home healthcare even when severe illness is involved. However, when care is moved from the hospital to the home the demands for high quality care still remain. Information and telecommunication technologies used in applications which are tailored to support caregivers and patients in home healthcare, can be part of the facilitation of this development towards an increasing home healthcare service. Remote monitoring of the patient in the home can support assuring this quality of care but such monitoring involves considering several requirement areas.

This thesis describes problem areas in both basic and advanced home healthcare where information technology can be a part of the solution. Further, the thesis describes requirement areas to be considered when monitoring patients in the home, both in regard to subjective and objective variables. The requirement areas, which are described in the thesis, include security, mobility, and responsibility. Network solutions for home healthcare are discussed and two information technology applications in home healthcare are described. The first application concerns diabetes care and the second application concerns the use of digital pen technology for symptom assessments in advanced palliative home healthcare.

IT support for home health care is an expanding area within health care IT development. Home health care differs from other in- or outpatient care delivery forms in a number of ways, and thus, the introduction of home health care applications must be based on a rigorous analysis of necessary requirements to secure safe and reliable health care. This article reports early experiences from the development of a home health care application based on emerging technologies. A prototype application for the follow-up of diabetes patients is presented and discussed in relation to a list of general requirements on home health care applications.

Symptom control is one of the most important components of delivering effective palliative care, and adequate symptom assessment is a prerequisite for good symptom control. Patient receiving treatment in palliative home healthcare is geographically separated from the caregivers making symptom control a challenge, a challenge that could be met by the use of information and communication technology.

This paper describes experiences from a project focused on symptom assessment using digital pen technology in advanced palliative home healthcare. As part of an ongoing quality assurance work within the hospital-based home care clinic at Linköping University Hospital, the project has designed, developed and implemented an IT-support system for pain assessments for patients at home using digital pen technology. The system uses mobile Internet technology together with digital pen technology from Anoto™ AB. From December 2002 to August 2003 the system was in use at the hospital-based home care clinic. Alternative techniques, for example the use of a PC or a touch-tone telephone for symptom assessment, are discussed.