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Over the last two decades, the number of studies on electronic symptom reporting has increased greatly. However, the field is very heterogeneous: the choices of patient groups, health service innovations, and research targets seem to involve a broad range of foci. To move the field forward, it is necessary to build on work that has been done and direct further research to the areas holding most promise. Therefore, we conducted a comprehensive review of randomized controlled trials (RCTs) focusing on electronic communication between patient and provider to improve health care service quality, presented in two parts. Part 2 investigates the methodological quality and effects of the RCTs, and demonstrates some promising benefits of electronic symptom reporting.
To give a comprehensive overview of the most mature part of this emerging field regarding (1) patient groups, (2) health service innovations, and (3) research targets relevant to electronic symptom reporting.
We searched Medline, EMBASE, PsycINFO, Cochrane Central Register of Controlled Trials, and IEEE Xplore for original studies presented in English-language articles published from 1990 to November 2011. Inclusion criteria were RCTs of interventions where patients or parents reported health information electronically to the health care system for health care purposes and were given feedback.
Of 642 records identified, we included 32 articles representing 29 studies. The included articles were published from 2002, with 24 published during the last 5 years. The following five patient groups were represented: respiratory and lung diseases (12 studies), cancer (6), psychiatry (6), cardiovascular (3), and diabetes (1). In addition to these, 1 study had a mix of three groups. All included studies, except 1, focused on long-term conditions. We identified four categories of health service innovations: consultation support (7 studies), monitoring with clinician support (12), self-management with clinician support (9), and therapy (1). Most of the research (21/29, 72%) was conducted within four combinations: consultation support innovation in the cancer group (5/29, 17%), monitoring innovation in the respiratory and lung diseases group (8/29, 28%), and self-management innovations in psychiatry (4/29, 14%) and in the respiratory and lung diseases group (4/29, 14%). Research targets in the consultation support studies focused on increased patient centeredness, while monitoring and self-management mainly aimed at documenting health benefits. All except 1 study aiming for reduced health care costs were in the monitoring group.
RCT-based research on electronic symptom reporting has developed enormously since 2002. Research including additional patient groups or new combinations of patient groups with the four identified health service innovations can be expected in the near future. We suggest that developing a generic model (not diagnosis specific) for electronic patient symptom reporting for long-term conditions may benefit the field.
This paper presents the first part of a comprehensive review of randomized controlled trials (RCTs) focusing on electronic communication between patient and provider to improve health care service quality. Part 1 presents an overview of patient groups, health service innovations, and research targets relevant to electronic symptom reporting. Part 2 examines the methodological quality of the RCTs and summarizes effects and benefits of electronic symptom reporting of the methodologically best RCT studies from the reported data [
Patients today, including the elderly and less-educated [
Patients support the idea of previsit reporting electronically [
A preliminary review conducted in 2010, based on abstracts, found that most studies in the field were small in terms of number of patients involved and are best described as feasibility studies [
However, the health service innovations and research targets seem to involve a broad range of foci with regard to choices of patient groups, technology, organizational implementation, and outcome measures [
The overall aim of the review was to systematically assemble the knowledge focusing on electronic communication between patient and provider to improve health care service quality. We wanted to limit our work to the most mature stage of a complex intervention before taking a service into ordinary use, the RCTs [
The objective for this first part of the review was to create a comprehensive overview of the most mature part of the field and to clarify what has been investigated so far with regard to different patient groups, health service innovations, and research targets relevant to electronic symptom reporting. Patient groups refers to either health conditions or to health services in cases where the trial did not focus on a specific diagnosis.
The review in general followed the Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) recommendations [
Studies had to meet the following inclusion criteria: (1) it had to be an original study, (2) patients or parents in the intervention group had to report symptoms or health information electronically, either to clinical health care personnel or to a system, where the receiver processed and interpreted the data for health care purposes and provided feedback (we accepted that the feedback did not have to be given electronically; the focus was on asynchronous systems that can be established within the health care system, including e-diaries and personal health records accessible to health care providers), (3) the information reported had to be about the patient symptoms and health status at the time of reporting or during the preceding few days, and (4) it had to be an RCT comparing electronic symptom reporting versus a control group where symptom or health information was not received by the health care professionals or systems. This means that the control group may have varied from standard care or waiting lists to control groups where patients reported their symptoms or health information electronically but where this health information was not received by the health care professionals or the interpreting systems.
Studies fulfilling one or more of the following criteria were excluded: (1) retrospective questionnaires, prevalence surveys, general screening on the Internet, and tests of medications, (2) electronic communication requiring the patient and health care personnel to be present simultaneously, for instance in a video conference or through instant messaging, (3) automatic biometric measurements, since these are defined as reporting of signs, not symptoms, and 4) voice diary.
We searched the following electronic literature databases: Medline, EMBASE, PsycINFO, the Cochrane Central Register of Controlled Trials, and IEEE Xplore. The search was limited to publications from 1990 (due to no knowledge of older publication within this field), human medicine, English language, and RCTs (for PsycINFO: Treatment Outcome/Randomized Clinical Trial). We restricted EMBASE searches to exclude records imported from Medline. The first search was conducted in May 2011, and the search was last updated in October and November 2011.
We reviewed known eligible publications to identify possible indexing terms and relevant search words. It was necessary to establish a comprehensive search for two reasons. First, this is a new area without any established terms defining the field. Second, medical and medical informatics expressions evolve over time, where new terms appear and traditional terms are replaced by more specific ones [
We accessed Medline, EMBASE, and PsycINFO through the Ovid interface. Cochrane and the Ovid searches were built around four search files (What, Who, Why, and How), with a logical OR within the files, and an AND between the files. The Medline search was based on medical subject headings (MeSH) and the Text Words (TW) field to search titles and abstract information. The What file consisted of 22 search terms, including 3 MeSH terms, for symptoms and synonyms, such as “health data” or “health information*”. The Who file searched for “patient*” and “parent*” plus 16 relevant MeSH terms. The Why file included 51 search terms, of which only 3 were MeSH terms, for “self-report*”, “pre-report*”, and synonyms. Finally, the How file contained 38 search terms, including 11 MeSH terms, for the possible technologies involved. The search strategies were pilot tested and modified several times to ensure that they identified eligible publications. The Medline search strategy and search terms can be found in
The IEEE Xplore search had to be constructed in a different way because the limitation to a maximum of 10 search terms and 6 wildcards made it impossible to reuse the advanced Ovid searches. Since IEEE Xplore in general included few RCT metadata, we conducted a search for “RCT* OR (randomi* AND control* AND trial*)”.
We did not include articles based on hand searches of reference lists, due to the Cochrane warning that “positive studies are more likely to be cited” and that “retrieving literature by scanning reference lists may thus produce a biased sample of studies” [
Search results were exported to EndNote X3 (Thomson Reuters, Carlsbad, CA, USA) for merging of databases, identification and deletion of duplicates, and review management. Abstract and full-text review were conducted independently, as presented in
Process for searching and selecting randomized controlled trials (RCTs) of electronic symptom reporting. The study flow diagram distinguishes between records and studies. A record is a source providing information about a study, presenting at a minimum an article title and abstract. Studies are the overall research projects themselves (here the RCTs), which may be represented by more than 1 article.
Sometimes authors reported primary and secondary analyses from the same RCT in 2 separate articles. Other authors conducted a small RCT pilot before the main RCT. In these cases, we allowed both articles, if we judged both to be relevant, to be separately included and evaluated in the review. However, we counted and present them as 1 RCT study and 2 articles.
We linked articles deemed not to be relevant, but that published design, methodological, or theoretical information for an included study, to the included article when we extracted data and when presenting the characteristics of each study.
From each included article, authors MAJ or EH extracted variables, guided by the Cochrane data collection checklist [
Due to the heterogeneity and complexity of the studies regarding patient groups, health service innovations, and research targets, and to provide a richer source of evidence, we chose an approach combining quantitative and qualitative narrative evaluation of the selected articles [
The resulting patient groups depended on whether we found articles focusing on health services types without focusing on specific diagnoses. If we found only articles focusing on specific diagnoses, we defined the resulting patient groups by their health condition and categorized them as in our preliminary review [
The research targets were classified according to the six areas of health service quality defined by the Institute of Medicine (IOM), which state that health care should be safe, effective in terms of health benefits (mortality, morbidity, and quality of life), patient centered, timely, efficient, and equitable [
Research target typology: extracted outcomes grouped by who benefits from the intervention and Institute of Medicine (IOM) quality areas for health care [
Outcomes benefitting | Extracted outcome variables | IOM quality area |
Patients | Clinical outcomes |
Patient centeredness |
Health care professionals | Improved health care service for doctors and others |
Efficiency: resource utilization (for health professionals) |
Health care system | Avoided consultations |
Efficiency: health care costs |
Of 642 records identified through the search and 444 abstracts reviewed, 32 articles and 29 studies were included (
The full-text review resulted in agreement on 49 articles, while we discussed 21 articles to reach consensus. Of these, 7 were finally included and 14 were excluded. The third author was involved in the discussion of 9 articles, where 3 were finally included and 6 excluded. Classification of abstracts from the database searches as not relevant or potentially relevant can be found in
The 32 articles were published over 10 years, from 2002 to November 2011, with most (n = 24) published in the last 5 years. All 29 studies, except 2, were conducted in Western countries: 12 in the United States, 4 in the United Kingdom, 3 in the Netherlands, 2 in Sweden, 2 in Switzerland, and 1 each in Australia, Denmark, Norway, Singapore, Spain, and Taiwan. Four of the parallel studies had three arms [
We found no articles that did not focus on specific diagnoses. Thus, resulting patient groups were all defined by their health condition and categorized as in our preliminary review [
The included articles resulted in five specific patient groups and one mixed group. Of the total of 29 studies, respiratory and lung diseases are clearly the largest group, with 12 studies (see
All of the included studies, except that of Yardley et al [
In the content analysis of the included studies, we identified the following four categories of health service innovations: (1) consultation support, (2) monitoring with clinician support, (3) self-management with clinician support, and (4) therapy.
We categorized studies that were difficult to categorize because they included elements from both monitoring and self-management according to our interpretation of the studies’ main purpose. The following studies were categorized as monitoring but included some self-management elements: Chan et al [
Most of the consultation support innovations were conducted in the cancer patient group (5/7), and most of the monitoring studies were in the respiratory and lung diseases group (8/12). In self-management, nearly half (4/9) of the studies were conducted in the field of psychiatry or in the respiratory and lung diseases patient group (4/9).
Reviewed randomized controlled trials of electronic symptom reporting, by health service innovation category and patient groupa.
Patient group | Consultation |
Monitoring with |
Self-management |
Therapy |
Total |
Cancer | 5 studies: Berry et al [ |
1 study: Kearney et al [ |
0 | 0 | 6 |
Respiratory and lung diseases: asthma | 0 | 6 studies in 7 articles: Willems et al [ |
1 study: van der Meer et al [ |
0 | 7 |
Respiratory and lung diseases: chronic obstructive pulmonary disease | 0 | 2 studies in 3 articles: Lewis et al [ |
1 study: Nguyen et al [ |
0 | 3 |
Respiratory and lung diseases: other | 0 | 0 | 2 studies: DeVito Dabbs [ |
0 | 2 |
Cardiovascular diseases | 0 | 3 studies: Carrasco et al [ |
0 | 0 | 3 |
Psychiatry | 1 study: Stevens et al [ |
0 | 4 studies: Berger et al [ |
1 study: Wagner et al [ |
6 |
Diabetes | 0 | 0 | 1 study in 2 articles: Williams et al [ |
0 | 1 |
Mixed | 1 study: Leveille et al [ |
0 | 0 | 0 | 1 |
Total studies | 7 | 12 | 9 | 1 | 29 |
a Articles were identified in a comprehensive search in Medline, EMBASE, PsycINFO, Cochrane Central Register of Controlled Trials, and IEEE Xplore from 1990 to November 2011, and were published in the time period 2002–2011. References with
In the group of consultation support articles, symptom reporting was conducted at the clinic (one exception), and the physician, or both a physician and a nurse, was the main communication partner for the patient. In all the monitoring, self-management, and therapy articles, the patient was at home when reporting. The main communication partner was the nurse in monitoring studies (7 studies). In psychiatry self-management, psychologists were the main communication partners. A total of 3 self-management and 3 monitoring studies mainly used computer-tailored feedback to the patients, 5 with and 1 without nurse or physician support.
Topic of reviewed randomized controlled trials of electronic symptom reporting, by patient’s location at time of symptom reporting and main communication partnera.
Main communication partner | Location of patient | |
Inside health care |
Outside health care |
|
Unclear | 0 | 1 study: lung diseases [ |
Physician at hospital | 3 studies: cancer [ |
1 study: cardiovascular [ |
Physician and nurse | 3 studies: cancer [ |
0 |
General practitioner or primary care physician | 0 | 1 study: cardiovascular [ |
Psychologist | 0 | 5 studies: psychiatry [ |
Nurse | 0 | 9 studies: cancer [ |
CTFe only | 0 | 1 study: lung diseases [ |
CTF and physician | 0 | 2 studies: asthma [ |
CTF and nurse | 0 | 3 studies: asthma [ |
a Articles were identified in a comprehensive search in Medline, EMBASE, PsycINFO, Cochrane Central Register of Controlled Trials, and IEEE Xplore from 1990 to November 2011, and were published in the time period 2002–2011.
b Patients communicated with a transplant team, a transplant provider, a coordinator, and a transplant coordinator at the hospital. The professions of these actors are not clearly defined [
c Articles 78, 79, and 80 were deemed not to be relevant, but included information necessary to understand the study in question.
d Conducted mainly by students [
e Computer-tailored feedback.
The included studies are presented according to the resulting health service innovation categories (
The 7 consultation studies involved more patients per study than did the monitoring and self-management support studies: 2342 patients (range 52–878, median 241). The 12 monitoring studies included a total of 1824 patients (range 17–321, median 120). The 9 self-management studies included 2242 patients (range 50–886, median 88), and the therapy study included 55 patients; 10 studies included fewer than 100 patients.
Consultation studies generally followed patients through one consultation only, while the duration of other interventions varied from 1 to 12 months, where more than half lasted 4 months or less, 6 lasted between 6 and 8 months, and only 4 lasted as long as 12 months.
Summary description of studies on consultation support in the reviewed randomized controlled trials of electronic symptom reportinga.
Patient |
Trial and |
Participant |
Study |
Health service innovation: |
Main findings and research targetse |
|
|||||
Berry et al [ |
262 clinicians from 2 clinics; 660 cancer patients, 18–86 (mean 54) years; female % not reported | Design: P + 2; inside clinic |
Enhancing patient–provider communication with electronic self-report assessment for cancer |
|
|
Boyes et al [ |
80 cancer patients, 20–85 years (mean not reported); female 59.5% | Design: P + 2; inside clinic |
Effect of giving oncologist a summary of the cancer patient’s self-reported psychosocial well-being |
|
|
Ruland et al [ |
14 physicians, 14 nurse practitioners; 52 cancer patients; 23–77 (mean 56.3) years; female 59% | Design: P + 2; inside clinic |
Supporting shared decision making |
|
|
Ruland et al [ |
145 cancer patients (leukemia or lymphoma); ≥18 (mean in intervention: 50, in control: 49) years; female 38% | Design: P + 2; inside clinic |
Effects of a computer-supported interactive tailored patient assessment tool |
|
|
Velikova et al [ |
28 physicians, 286 oncology patients; age range not reported; mean age 54.9 years; female 73% | Design: P + 3; inside clinic |
Improving communication and patient well-being |
|
|
|
Stevens et al [ |
878 potential behavioral concern patients from 9 clinics; 11–20 (mean 13.9) years; female 54% | Design: C + 2; inside clinic |
Does screening increase clinicians’ recognition of behavior concerns? |
|
|
Leveille et al [ |
34 physicians, 241 patients (depression, chronic pain, and mobility difficulty); 22–86 years (mean not reported); female 57% | Design: P+ 2; outside, probably at home |
Nurse coaching to promote patient–primary care physician discussion |
|
a Articles were identified in a comprehensive search in Medline, EMBASE, PsycINFO, Cochrane Central Register of Controlled Trials, and IEEE Xplore from 1990 to November 2011, and were published in the time period 2002–2011.
b Main author, main reference. References in parentheses contributed relevant study information on the study in question.
c Number of clinicians, number of patients with diagnosis, age range (mean) of patients, percentage female patients.
d Design (P = parallel group design, CO = crossover, C = cluster, F = factorial, O = other, U = unclear; + number of study arms), where symptom reporting took place (outside or in the home; or inside a clinic), and duration of intervention.
e Main findings are in general presented as in the original article and refer to primary outcome if clearly defined and secondary outcomes considered relevant for the scope of the study. Research targets refers to the six areas of health service quality defined by the Institute of Medicine [
f Electronic Self-Report Assessment-Cancer.
g Health-related quality of life.
Summary description of studies on monitoring in the reviewed randomized controlled trials of electronic symptom reportinga.
Patient |
Trial and |
Participant |
Study |
Health service innovation: |
Main findings and research targetse |
|
|||||
Kearney et al [ |
112 breast, lung, or colorectal cancer patients; >18 (mean 56) years; female 76.8% | Design: P + 2; outside/home |
Management of chemotherapy-related toxicity |
|
|
|
|||||
Chan et al [ |
120 children with persistent asthma; 6-17 (mean in intervention: 10.2, in control: 9.0) years; female 37.5% (Chan et al [ |
Design: P + 2; outside/home |
Internet-based monitoring and education of children with asthma |
|
|
Guendelman et al [ |
134 children with asthma; 8–16 (mean in intervention: 12, in control: 12.2) years; female in intervention: 60%; in control: 63% | Design: P + 2; outside/home |
Asthma outcomes and self-management behaviors |
|
|
Jan et al [ |
164 children with persistent asthma; 6–12 (mean in intervention: 10.9, in control: 9.9) years; female in intervention: 60.3%, in control: 63.2% | Design: P + 2; outside/home |
Interactive asthma monitoring |
|
|
Prabhakaran et al [ |
120 asthma patients; mean age in intervention: 37, in control: 40 years); female in intervention: 65%, in control: 53% | Design: P + 2; outside/home |
Asthma monitoring |
|
|
Rasmussen et al [ |
300 asthma patients; 18–45 (mean 29.5) years; female 69% | Design: P + 3; outside/home |
Asthma monitoring |
|
|
Willems et al [ |
109 patients with mild to moderate asthma; 56 children 7–18 (mean 11) years, 53 adults ≥18 (mean 46) years; female 55.6% | Design: P + 2; outside/home |
Nurse-led telemonitoring |
|
|
Lewis et al [ |
40 patients with moderate to severe COPDh who had completed at least 12 sessions of outpatient pulmonary rehabilitation; mean age in [ |
Design: P + 2; outside/home |
Home telemonitors to reduce health care use [ |
|
|
Nguyen et al [ |
17 patients with moderate to severe and stable COPD; mean 68 (SD 11) years; female 65% | Design: P + 2; outside/home |
A cell phone-based exercise persistence intervention postrehabilitation for COPD |
|
|
|
|||||
Carrasco et al [ |
38 GPs, 285 hypertensive patients; (age range not reported), mean 62 years; female 40% | Design: P + 2; outside/home |
Text message-based Patient–GP interaction on control of hypertension |
|
|
Santamore et al [ |
321 cardiovascular disease patients; 18–85 (mean in intervention: 62, in control: 63.2) years; female % not reported | Design: P + 2; outside/home |
Telemedicine System to Decrease Cardiovascular Disease Risk |
|
|
Schwarz et al [ |
102 heart failure patients; 65–94 (mean 78.1) years; female 52% | Design: P + 2; outside/home |
Telemonitoring of heart failure patients and their caregivers |
|
a Articles were identified in a comprehensive search in Medline, EMBASE, PsycINFO, Cochrane Central Register of Controlled Trials, and IEEE Xplore from 1990 to November 2011, and were published in the time period 2002–2011.
b Main author, main reference. References with
c Number of clinicians, number of patients with diagnosis, age range (mean) of patients, percentage female patients.
d Design (P = parallel group design, CO = crossover, C = cluster, F = factorial, O = other, U = unclear; + number of study arms), where symptom reporting took place (outside or in the home; or inside a clinic), and duration of intervention.
e Main findings are in general presented as in the original article and refer to primary outcome if clearly defined and secondary outcomes considered relevant for the scope of the study. Research targets refers to the six areas of health service quality defined by the Institute of Medicine [
f Peak expiratory flow rate.
g General practitioner.
h Chronic obstructive pulmonary disease.
Summary description of studies on self-management in the reviewed randomized controlled trials of electronic symptom reportinga.
Patient group | Trial and |
Participant |
Study |
Health service innovation: |
Main findings and research targetse |
|
|||||
DeVito Dabbs et al [ |
34 lung transplant recipients; >18 (mean 56) years; female 40% | Design: P + 2; outside/home |
Early self-care behaviors and follow-up after lung transplant |
|
|
Yardley et al [ |
714 participants with minor respiratory symptoms; 18–79 years (62.1% were <25); female 72.3% | Design: P + 2; outside/home |
Web-based intervention providing tailored advice for self-management of minor respiratory symptoms |
|
|
van der Meer et al [ |
200 asthma patients from 37 general practices and 1 academic outpatient department; 18–50 (mean in intervention: 36, in control: 37) years; females 69.5% | Design: P + 2; outside/home |
Internet-based self-management plus education compared with usual care |
|
|
Nguyen et al [ |
50 patients with moderate to severe chronic obstructive pulmonary disease; mean 69.5 years, range ± 8.5; female 44% | Design: P + 2; outside/home |
Dyspnea self-management |
|
|
|
|||||
Berger et al [ |
81 patients with social phobia; 19–62 (mean 37.2) years; female 53.1% | Design: P + 3; outside/home |
Internet-based treatments of social phobia |
Significant symptom reductions in all 3 treatment groups with large effect sizes for |
|
Bergstrom et al [ |
113 patients with panic disorder; >18 (mean in intervention: 33.8, in control: 34.6) years; female 61.5% | Design: P + 2; outside/home |
Internet-based CBTg for patients with panic disorder |
|
|
Vernmark et al [ |
88 patients with major depression; age range not reported (mean 37); female 68% | Design: P + 3; outside/home |
Internet-administered guided self-help versus individualized email therapy versus waiting lists |
|
|
Oerlemans et al [ |
76 irritable bowel syndrome patients; age range not reported; mean in intervention: 35.9, for control: 40.6 years; female in intervention: 91.9%, in control: 76.9% | Design: P + 2; outside/mobile |
Intervening on cognitions and behavior in irritable bowel syndrome |
|
|
|
Glasgow et al [ |
52 primary care physicians, 886 type 2 diabetes patients; >25 (mean in intervention: 61.48, in control: 64.63) years; female in intervention: 52.3%, in control: 50% ([ |
Design: C + 2; inside clinic |
Interactive computer technology to assist patients and clinicians in emphasizing patient-centered communication and improved quality of care |
|
a Articles were identified in a comprehensive search in Medline, EMBASE, PsycINFO, Cochrane Central Register of Controlled Trials, and IEEE Xplore from 1990 to November 2011, and were published in the time period 2002–2011.
b Main author, main reference. References with
c Number of clinicians, number of patients with diagnosis, age range (mean) of patients, percentage female patients.
d Design (P = parallel group design, CO = crossover, C = cluster, F = factorial, O = other, U = unclear; + number of study arms), where symptom reporting took place (outside or in the home; or inside a clinic), and duration of intervention.
e Main findings are in general presented as in the original article and refer to primary outcome if clearly defined and secondary outcomes considered relevant for the scope of the study. Research targets refers to the six areas of health service quality defined by the Institute of Medicine [
f Personal digital assistant.
g Cognitive behavioral therapy.
Summary description of study on therapy in the reviewed randomized controlled trials of electronic symptom reportinga
Trial and |
Participant |
Study |
Health service innovation: |
Main findings and research targetse |
Wagner et al [ |
55 people with complicated grief; 19–68 (mean 37) years; female 93% |
Design: P + 2; outside/home |
Internet-based cognitive behavioral therapy for complicated grief. |
|
a Articles were identified in a comprehensive search in Medline, EMBASE, PsycINFO, Cochrane Central Register of Controlled Trials, and IEEE Xplore from 1990 to November 2011, and were published in the time period 2002–2011.
b Main author, main reference.
c Number of clinicians, number of patients with diagnosis, age range (mean) of patients, percentage female patients.
d Design (P = parallel group design, CO = crossover, C = cluster, F = factorial, O = other, U = unclear; + number of study arms), where symptom reporting took place (outside or in the home; or inside a clinic), and duration of intervention.
e Main findings are in general presented as in the original article and refer to primary outcome if clearly defined and secondary outcomes considered relevant for the scope of the study. Research targets refers to the six areas of health service quality defined by the Institute of Medicine [
According to the IOM categories of health service outcomes [
The main research focus is presented according to the resulting health service innovations and patient groups in
Of 642 records identified, 32 articles representing 29 studies were included. The articles were published from 2002, most (24/32, 75%) during the last 5 years. Nearly two-thirds of the articles had a female first author.
We categorized the studies into five patient groups: respiratory and lung diseases, cancer, psychiatry, cardiovascular diseases, diabetes, or a mix of these. All included studies, except 1 [
The content analysis identified four categories of health service innovations: consultation support, monitoring with clinician support, self-management with clinician support, and therapy.
The research targets in the group of articles on consultation support were mainly patient-centered outcomes, while the articles on monitoring and self-management mainly aimed to demonstrate health benefits. The studies aiming for reduced health care costs were all in the subgroup of monitoring articles, except for 1 study on self-management
We found that 75% of the articles were published during the last 5 years, which indicates that this is a growing field. The fact that all studies, except 2, were conducted in Western countries is not surprising, since these are the countries with the highest e-readiness [
It is no surprise, either, that nearly all the included studies focused on long-term conditions. In emergency or acute conditions, the time frame for decision making is short, and health professionals often need to make decisions on behalf of patients. In long-term conditions, however, the time frame is longer, and the decision process is often shared between the patient and the health care professional. Partnership or shared decision making is essential to improve the pathways for patients with long-term conditions who face complex and repeated decision making processes [
Most of the consultation support innovation studies were conducted in the cancer patient group (5/7), most of the monitoring studies were in the respiratory and lung diseases (8/12), and the self-management studies were conducted mainly in psychiatry (4/9) or respiratory and lung diseases (4/9). Cancer patients who receive chemotherapy or radiation therapy (or both) for a period from 6 months to a year could theoretically benefit from both monitoring and self-management approaches, in the same way as patients with chronic obstructive pulmonary disease or asthma. Yet, electronic symptom reporting for this group of patients has mostly been studied in the context of consultation support. Likewise, electronic consultation support has not been studied in patients with chronic conditions such as chronic obstructive pulmonary disease and asthma. We can see no theoretical or practical reason to believe that these groups would not benefit in the same way as those with other long-term conditions. Thus, we are puzzled by the obvious blanks in our cross-tables of patient group by health service innovation, and that electronic symptom reporting systems seems to reflect the conventional approach in each health service field. We are concerned that health service innovations that may benefit all patients with long-term conditions are being introduced in a diagnosis-specific context. This makes it difficult for researchers and clinicians to glean more general lessons from the field. As we discuss further in the next paragraph, systems deviating from this conventional approach might benefit health care service quality. Based on this, we suggest that the field would benefit from the identification of general theoretical principles that are relevant to all electronic symptom reporting interventions, across diagnostic patient groups.
We identified four types of health service interventions, and we believe these four represent the full spectrum of services associated with electronic symptom reporting. One of the health service innovations groups, the consultation support group, was very different from the other three, while the monitoring, self-management support, and therapy groups partly overlapped. These three represent a continuum with increasing focus on treatment through electronic communication, and decreasing face-to-face or telephone contact. The ideal electronic symptom reporting service should provide both consultation support and elements of monitoring and self-management support, and when this is not enough, to support the therapeutic relationship whenever this is feasible.
The studies aiming at reduced health care costs were all in the monitoring category, except for 1 self-management study. The 4 studies defined as equivalence studies in part 2 of this review [
This is the first review to address this emerging field and to provide a systematic overview. One of the main strengths of this review is the comprehensive search. We searched all the databases recommended by Cochrane [
Another main strength is that the selection and data extraction strategies were based on the Cochrane recommendations.
That the review was based on the most mature research in the field, the RCT trials [
Despite using a very comprehensive search strategy, we might have lost articles in the adaptation and translation of the search strategies for the different databases. In addition, we may have missed search words, resulting in overlooked articles. When designing this review, we decided not to include articles based on hand searching of reference lists, due to the Cochrane warning [
We included the 6 psychiatry studies, as we identified them in our originally designed search strategy. If they had not been included, the self-management category would have been reduced, and been less convincing, and the focus for self-management would mainly have been on respiratory and lung diseases. On the other hand, if we had conducted a search that had covered the psychiatry field better, we hypothesize, based on the studies from the reference lists, that the psychiatry studies would have been a mix of self-management and therapy studies. However, further research will have to confirm this hypothesis.
The finding that nearly two-thirds of the articles had a female first author was surprising and actually something we did not look for, but was immediately obvious. This is much higher than is common in medicine, where only a few American journals have up to 30% female authors, while all others have less [
As mentioned above, health service innovations in this area have so far mainly been developed and tested in the context of a given diagnosis. However, many possible ICPC-based patient groups are not represented in our findings. This is probably only a question of time, since the prereview, which was not limited to RCTs, identified 15 studies on musculoskeletal disease, 8 on gastrointestinal diseases, 8 on neurological diseases, 6 on human immunodeficiency syndrome/acquired immunodeficiency syndrome, and a large group that was not possible to categorize based on the information in the abstract [
What we have today is a highly heterogeneous field, where authors rarely seem to build on the experiences gained in other diagnostic settings. The fact that almost all of the patient groups had long-term conditions suggests that long-term conditions have commonalities that make this kind of intervention desirable. Future research should examine whether a common generic approach to electronic symptom reporting, regardless of diagnosis, could be useful.
A total of 3 self-management studies (4 articles) [
In this regard, the Yardley et al study deserves some special attention [
In addition to the possible health cost benefits, giving the patient the opportunity to register symptoms continually and providing an interactive-feedback learning mechanism can provide the stimulus for the patient to build the necessary confidence to handle symptoms and self-management, and in this way support patient centeredness. We support Guendelman and colleagues’ suggestion that easy-to-use electronic devices “may be useful tools to empower children to provide their own care while reducing asthma symptoms and health care use in pediatric settings” [
Systematic use or reuse of electronically reported symptoms might also be useful in syndromic surveillance [
Investigating what the opportunity to easily contact care providers means to patients with long-term conditions, in terms of feeling secure, appears necessary, as nearly all of the patients who contacted the e-coach in the study of Leveille and colleagues were interested in further coaching [
With regard to research targets, the most interesting finding may be that none of the trials focused on safety, timeliness, and equity. Timeliness—that is, reducing delays for both providers and receivers of health care, for example, avoiding cancellation of surgery—is an area where we expect electronic symptom reporting to have a positive impact. As the mobile phone seems to narrow the digital divide [
The recent large increase in studies being conducted in electronic symptom reporting, as also shown in our preliminary review [
The RCT-based research on electronic symptom reporting has developed enormously since 2002, with 75% of the articles published during the last 5 years. This indicates that a new concept to improve patient centeredness is being established. So far, the research has focused on five specific patient groups and health conditions: cancer, respiratory and lung diseases, cardiovascular disease, psychiatry, and diabetes. The evidence from RCTs can be structured into four health service innovation categories: consultation support, monitoring with clinician support, self-management with clinician support, and therapy. Most of the research (72%) has been conducted within the following four combinations: consultation support innovation in the cancer patient group (5/29, 17%), monitoring innovation in the respiratory and lung diseases patient group (8/29, 28%), and self-management innovation in the psychiatry patient group (4/29, 14%) and in the respiratory and lung diseases patient group (4/29, 14%). New patient groups, and combinations of patient groups and the four identified health service innovations, are expected in the near future. We suggest that the development of a generic (not diagnosis-specific) model for electronic patient symptom reporting for long-term conditions may benefit the development of this field.
Medline search strategy and search terms.
The classification process based on abstracts from the database searches.
The main focus of the research targets presented according to health service innovations and patient groups.
International Classification of Primary Care
Institute of Medicine
Medical Subject Headings
Preferred Reporting Items for Systematic Reviews and Meta-analyses
Randomized Controlled Trial
This study was partly funded by grants from the Health North Authorities (TFP-661-07), Norwegian Research Council grants (1749349), and The Norwegian Centre for Integrated Care and Telemedicine (NST). We want to express our thanks to colleagues at NST for useful advice, support, and feedback.
None declared.