People with chronic obstructive pulmonary disease (COPD) continue to experience dyspnea with activities of daily living (ADL) despite optimal medical management. Information and communication technologies may facilitate collaborative symptom management and could potentially increase the reach of such interventions to those who are unable to attend face-to-face pulmonary rehabilitation or self-management programs.
The purpose of this randomized study was to test the efficacy of two 6-month dyspnea self-management programs, Internet-based (eDSMP) and face-to-face (fDSMP), on dyspnea with ADL in people living with COPD.
We randomly assigned 50 participants with moderate to severe COPD who were current Internet users to either the eDSMP (n = 26) or fDSMP (n = 24) group. The content of the two programs was similar, focusing on education, skills training, and ongoing support for dyspnea self-management, including independent exercise. The only difference was the mode (Internet/personal digital assistant [PDA] or face-to-face) in which the education sessions, reinforcement contacts, and peer interactions took place. Participants returned to one of two academic clinical sites for evaluation at 3 and 6 months. The primary outcome of dyspnea with ADL was measured with the Chronic Respiratory Questionnaire. Secondary outcomes of exercise behavior, exercise performance, COPD exacerbations, and mediators, such as self-efficacy and social support, were also measured. A satisfaction survey was administered and a semistructured exit interview was conducted at the final visit.
The study was stopped early due to multiple technical challenges with the eDSMP, but follow-up was completed on all enrolled participants. Data were available for 39 participants who completed the study (female: 44%; age: 69.5 ± 8.5 years; percent predicted forced expiratory volume in 1 s: 49.6 ± 17.0%). The fDSMP and eDSMP showed similar clinically meaningful changes in dyspnea with ADL from baseline to 3 months (fDSMP: + 3.3 points; eDSMP: + 3.5 points) and sustained these improvements at 6 months (fDSMP: + 4.0 points; eDSMP: + 2.5 points; time effects
Although there were numerous technical challenges with the eDSMP, both dyspnea self-management programs were effective in reducing dyspnea with ADL in the short term. Our findings will need to be confirmed in a larger randomized trial with more mature Web and personal digital assistant tools, use of a control group, and longer follow-up.
clinicaltrials.gov NCT00102401, http://www.webcitation.org/5X8CX4gLC
Despite optimal medical therapy, people living with chronic obstructive pulmonary disease (COPD) continue to experience persistent dyspnea (shortness of breath) with their activities of daily living (ADL) and therefore must engage in the long-term tasks of self-management. Self-management has been defined as an “individual’s ability to manage the symptoms, treatment, physical and social consequences and lifestyle changes inherent in living with a chronic condition” [
Alternative care models, such as disease or care management programs, have been tested and shown to have some success in improving health outcomes in other diseases such as diabetes [
We previously tested a face-to-face dyspnea self-management program that combined individual education on strategies to decrease dyspnea with a home walking prescription, symptom monitoring, and telephone reinforcement by a nurse and found that this program decreased dyspnea with ADL over the long term [
The purpose of this study was to extend our previous investigation by comparing the efficacy of the Internet-based dyspnea self-management program (eDSMP) with a face-to-face dyspnea self-management program (fDSMP) on the primary outcome of dyspnea with ADL in patients with moderate to severe COPD over a longer period using a randomized design. Secondary outcomes included exercise behavior, exercise performance, and COPD exacerbations. We hypothesized that the difference in changes in the primary outcome of dyspnea with ADL, measured by the Chronic Respiratory Questionnaire (CRQ), would not be greater than the minimal clinically important difference of 2.5 points between the two groups.
We conducted a randomized, repeated measures (0, 3, and 6 months) pilot study to compare the effects of an eDSMP to an fDSMP in patients with COPD. The trial took place at two academic medical centers, University of California San Francisco, and University of Washington, Seattle. This research study was approved by the institutional review boards at both study sites and was registered with ClinicalTrials.gov (NCT00102401).
Participants were recruited from a combination of Web-based and non-Web-based sources. Recruitment announcements were sent to various email distribution lists and online support groups for patients with COPD and older adults. Email postings were sent via a Web vendor intermediary who produced decision-support content for patients with COPD. Other recruitment activities included chest clinic referrals, letter mailings to university clinic patients with a COPD-related diagnosis, announcements at Better Breathers support groups and pulmonary rehabilitation programs, and newspaper advertisements.
The inclusion criteria were (1) a diagnosis of COPD and being clinically stable for at least 1 month; (2) spirometry results showing at least mild obstructive disease defined as post-bronchodilator forced expiratory volume in 1 s (FEV1) to forced vital capacity (FVC) ratio < 0.70 with FEV1 < 80% predicted, or FEV1/FVC < 0.60 with FEV1 > 80% predicted; (3) ADL limited by dyspnea; (4) use of the Internet and/or checking email at least once per week with a Windows operating system; (5) oxygen saturation > 85% on room air or ≤ 6 L/min of nasal oxygen at the end of a 6-minute walk test. Participants were excluded if they (1) had any active symptomatic illness (ie, cancer, heart failure, ischemic heart disease with known coronary artery or valvular heart disease, psychiatric illness, or neuromuscular disease); (2) participated in a pulmonary rehabilitation program in the last 12 months; or (3) were currently participating in > 2 days of supervised maintenance exercise.
An investigator who was not involved in the day-to-day study operations generated the randomization sequence using the SPSS version 14.0 (SPSS Inc, Chicago, IL, USA) random sequence generator feature and placed the randomization in separate sealed opaque envelopes. The randomization scheme was stratified by the two clinical sites in blocks of six to ensure balanced allocation to the two treatment groups. Since registration and access to the Web questionnaires on the vendor-supported website required designation of a treatment group early in the baseline visit, the study nurse opened the randomization envelope during the first half of the visit. While the study nurse was privy to the treatment assignment, participants were not informed of their assignment until the visit was complete.
Baseline assessments included spirometry, completion of Web questionnaires, and 6-minute walk tests. Spirometry was performed using a Koko spirometer (Pulmonary Data Services, Louisville, CO, USA). Pulmonary function tests were used only to compare the severity of disease measured by airflow obstruction between the groups. At the end of the baseline visit, the study nurse introduced the personal digital assistant (PDA), a Blackberry 680, to the eDSMP participants; they were encouraged to play an electronic game on the PDA to increase their comfort with the device since it would be used to record their real-time symptom and exercise data. Participants assigned to fDSMP did not receive a PDA. All participants returned to the clinic within 1 week for an initial face-to-face dyspnea and exercise consultation with the study nurse coach and continued to participate in their respective intervention programs for the next 6 months. They returned to the medical center at 3 and 6 months for testing by study staff who were not involved in the intervention. Individual semistructured interviews were conducted either in person or via telephone at the final visit by the evaluation staff or investigators (HQN and VCK) who were not directly involved in the intervention.
Major concepts from social cognitive [
We used a vendor-supported, Web-based application that was configured to our study specifications for the eDSMP [
Dyspnea self-management program components
Core Components | fDSMP | eDSMP |
1. Dyspnea and exercise consultation (1-1.5 hours) | Individual face-to-face | Individual face-to-face |
2. Endurance (4 times/week, 30 min/session) and arm strengthening (3 times/week) exercise program | Unsupervised independent exercise | Unsupervised independent exercise |
3. Collaborative self-monitoring of exercise and respiratory symptoms and reinforcement of dyspnea management strategies (weekly in month 1; biweekly in months 2-6) | Paper diaries |
PDA and Web diary |
4. Structured education of dyspnea management strategies, skills training, and peer interactions |
Paper modules |
Interactive Web modules |
All participants returned to the clinic within 1 week of their baseline visit to participate in a 1.5- to 2-hour face-to-face consultation with an advanced practice nurse who specialized in either general adult or pulmonary medicine. The goal of the consultation was for the study nurse to establish rapport with the participant and to understand his or her current level of exercise and experience with dyspnea through motivational interviewing techniques [
During the consultation visit described above, the nurse and participant together developed an individualized exercise plan that was based on the participant’s baseline exercise performance, dyspnea at the end of a 6-minute walk test, oxygen saturation, stage of exercise motivational readiness, and exercise preferences. The home-based exercise program included a combination of endurance (walking, cycling, or swimming) and arm strengthening (biceps curls, triceps curls, side arm raises, and upper arm raises) exercises. All participants were encouraged to complete endurance exercises at least 4 times per week for 30 minutes per session and arm strengthening exercises at least 3 times per week. They used a modified 0- to 10-point Borg scale [
The eDSMP participants submitted real-time information about their symptoms (dyspnea, sputum, sputum purulence, symptoms of a cold, wheezing, and cough) and exercise (mode, duration, and worst dyspnea) via the PDA (
PDA exercise and symptom queries (eDSMP group)
Exercise goal setting (eDSMP group)
All participants received education on shortness of breath (SOB), breathing strategies to reduce SOB, exercise and SOB, modifying activities to reduce SOB, coping with SOB and stress, and medications to manage SOB and COPD flare-ups. The eDSMP group accessed Web-based education modules, while the fDSMP participants were given a paper copy of the modules on these six topics. The Web modules, which were written at the 8th grade level or lower, also had nondigitized audio, pictures, and animations. The content from these modules was reinforced by study nurses during six weekly live chat sessions with participants from both clinical sites (eDSMP) or face-to-face meetings at the medical centers (fDSMP). These education sessions were designed to encourage peer interactions and mutual support.
Dyspnea with ADL was measured with the CRQ-Dyspnea subscale, which has been validated in previous studies [
Participants selected their readiness for exercise from a list of five descriptions (precontemplation, contemplation, preparation, action, and maintenance) [
Participants were asked about the frequency and duration (5-, 10-, 20-, 30-, 40-, 60-minute increments) of endurance (walking, cycling, swimming), strengthening, and stretching (yoga, tai chi) exercises for a typical week during the last 4 weeks [
Exercise performance was assessed using the 6-minute walk test. Subjects inhaled two puffs of a bronchodilator before the test. After standardized verbal instruction, two 6-minute walk tests were performed approximately 30 minutes apart on the same day in a hospital corridor [
The CRQ and Medical Outcomes Study Short-Form 36 (SF-36) were used to measure disease-specific and general health-related quality of life (HRQOL), respectively. In addition to the dyspnea scale, the 20-item CRQ measures other components of disease-specific HRQOL, including fatigue, emotional functioning, and mastery (self-efficacy). The SF-36 has 36 questions that relate to nine distinct components of overall health and two composite measures of physical and mental functioning. Higher scores reflect better HRQOL for both instruments.
Acute COPD exacerbations were defined as an increase in any two major symptoms or an increase in one major and one minor symptom for at least two consecutive days and accompanied by a change in the medical regimen [
Knowledge of strategies to manage dyspnea was measured by a 15-item multiple choice and true/false questionnaire that was adapted from previously published instruments [
Self-efficacy for managing dyspnea was measured using a single question with a 0- to 10-point response scale: “How confident are you that you can keep your shortness of breath from interfering with what you want to do?” [
The information and emotional subscale of the Medical Outcomes Study Social Support Scale [
Many participants volunteered their preference for either the fDSMP or eDSMP during the telephone screening. However, they were formally asked their preference during the dyspnea and exercise consultation by the study nurse.
Due to the configuration of the vendor’s Web server log files, we were unable to obtain detailed navigation information for each participant. We were, however, able to obtain proxy usage measures by virtue of timestamps recorded whenever eDSMP participants logged exercise and symptom data, set exercise goals, posted to the bulletin board, or participated in the chat sessions. Technical issues were documented and compiled.
Participants were asked about their satisfaction with specific components of the eDSMP (13 items) or fDSMP (9 items) and their overall satisfaction with the programs using a 3-point scale (“not at all satisfied” to “very satisfied”). The evaluation staff or lead investigators (HQN and VCK) who were not directly involved with the interventions conducted semistructured interviews with participants at the end of the study. Participants were asked to provide feedback on what aspects of the program were most or least helpful for managing their dyspnea and how the program could have been done differently to support self-management. Probing questions were used to remind participants of the four major intervention components. Other questions were asked during this interview; however, a description of these questions is beyond the scope of the paper.
Independent
A total of 173 prospective participants were screened from April 2005 to July 2006 across both clinical sites. As shown in
Subject flow
Participants who dropped out after randomization (n = 11; 36% due to technical difficulties) were similar in age, education, employment status, distance from home to the respective clinical site, pulmonary functioning, disease severity (measured by the BODE composite index, which includes body mass index [BMI], FEV1, dyspnea, and 6-minute walk test) [
Participants in both treatment groups were similar on all baseline characteristics, suggesting that randomization was successful (
Sample baseline characteristics*
fDSMP |
eDSMP |
Total |
Dropouts |
|
|
||||
Age, years (mean ± SD) | 70.9 ± 8.6 | 68.0 ± 8.3 | 69.5 ± 8.5 | 67.3 ± 10.0 |
Female | 9 (45%) | 8 (39%) | 17 (44%) | 8 (73%) |
Caucasian | 20 (100%) | 18 (95%) | 38 (97%) | 11 (100%) |
Education | ||||
High school or some college | 8 (40%) | 10 (50%) | 18 (46%) | 5 (45%) |
College or more | 12 (60%) | 9 (50%) | 21 (54%) | 6 (55%) |
Not currently employed or currently disabled or retired | 15 (75%) | 13 (72%) | 28 (72%) | 6 (55%) |
Living situation: with spouse or other | 13 (65 %) | 12 (63%) | 25 (64%) | 6 (55%) |
Currently smoking | 1 (5%) | 2 (11%) | 3 (8%) | 3 (27%) |
Distance to clinical site, km (mean ± SD) | 13.1 ± 15.7 | 20.4 ± 18 | 16.6 ± 17 | 10.4 ± 11.8 |
BMI, kg/m2 (mean ± SD) | 27.7 ± 6.4 | 29.4 ± 5.9 | 28.5 ± 6.2 | 26.2 ± 4.2 |
|
||||
FEV1/FVC (mean ± SD) | 0.46 ± 0.11 | 0.49 ± 0.14 | 0.47 ± 0.13 | 0.48 ± 0.13 |
FEV1 % predicted (mean ± SD) | 50.3 ± 17.6 | 49.0 ± 16.8 | 49.6 ± 17.0 | 52.8 ± 18.2 |
GOLD stage | ||||
Mild/moderate | 10 (50%) | 9 (47%) | 19 (49%) | 5 (45%) |
Severe/very severe | 10 (50%) | 10 (56%) | 20 (51%) | 6 (55%) |
BODE composite score (mean ± SD) | 2.8 ± 2.2 | 2.5 ± 1.5 | 2.7 ± 1.9 | 2.1 ± 1.6 |
Supplemental oxygen | 5 (25%) | 6 (33%) | 11 (58%) | 2 (18%) |
Comorbidities | ||||
Cardiovascular (HTN and CAD) | 10 (50%) | 9 (50%) | 19 (49%) | 4 (36%) |
Musculoskeletal (arthritis and other pain) | 8 (40%) | 4 (22%) | 12 (31%) | 0 (0%)† |
Previous pulmonary rehabilitation | 8 (40%) | 9 (47%) | 17 (44%) | 1 (9%)† |
|
||||
Self-rated computer skills | ||||
Beginner | 2 (10%) | 4 (21%) | 6 (15%) | 2 (18%) |
Intermediate | 14 (70%) | 9 (47%) | 23 (59%) | 3 (27%) |
Advanced | 4 (20%) | 6 (32%) | 10 (26%) | 6 (55%) |
Computer use, years (mean ± SD) | 5.6 ± 2.7 | 5.7 ± 2.8 | 5.7 ± 2.7 | 6.4 ± 2.9 |
Hours on the Internet per week, median (range) | 9.5 (1-25) | 15.0 (1-90) | 14 (1-90) | 12 (2-35) |
Participate in online support groups | 2 (10%) | 5 (28%) | 7 (37%) | 1 (9%) |
|
||||
Motivational readiness for exercise | ||||
Precontemplation/contemplation | 6 (30%) | 8 (42%) | 14 (36%) | 3 (27%) |
Preparation | 8 (40%) | 6 (33%) | 14 (36%) | 5 (46%) |
Action/maintenance | 6 (30%) | 5 (28%) | 11 (28%) | 3 (27%) |
Treatment group preference‡ | ||||
fDSMP | 5 (25%) | 7 (39%) | 12 (31%) | 4 (50%) |
eDSMP | 4 (20%) | 10 (50%) | 14 (36% | 3 (38%) |
No preference | 11 (55%) | 2 (11%) | 13 (33%) | 1 (12%) |
Outcome expectation of dyspnea self-management program§ | ||||
Very/extremely | 11 (55%) | 11 (58%) | 22 (56%) | 5 (46%) |
Quite | 3 (15%) | 6 (32%) | 9 (23%) | 4 (36%) |
Fair | 6 (30%) | 2 (10%) | 8 (21%) | 2 (18%) |
*Values are number (%) unless otherwise stated. BMI, body mass index; FEV1/FVC, forced expiratory volume in 1 s/forced vital capacity; GOLD, Global Initiative for Obstructive Lung Disease; BODE, body mass index, airflow obstruction, dyspnea, exercise; HTN, hypertension; CAD, coronary artery disease.
†
‡
§“How much do you think this program (eDSMP or fDSMP) will assist you in managing your shortness of breath?” (1- to 6-point Likert scale: “not at all” to “extremely”).
While there was a significant main effect of time (
Comparison of treatment effects: dyspnea, exercise, exercise performance, and HRQOL*
fDSMP |
eDSMP |
Group |
Time |
Group × Time |
|
|
|||||
CRQ-Dyspnea with ADL (score range: 5-35)† | |||||
Baseline | 15.9 ± 5.4 | 18.8 ± 6.2 | .14 | < .001 | .51 |
3 Months | 19.2 ± 5.8 | 22.3 ± 4.6 | |||
6 Months | 19.9 ± 6.2 | 21.3 ± 6.0 | |||
|
|||||
Exercise stage of change: action or maintenance | |||||
Baseline, no. (%) | 6 (30%) | 5 (26%) | - | - | - |
3 Months, no. (%) | 14 (70%) | 16 (84%) | .47‡ | ||
6 Months, no. (%) | 15 (75%) | 12 (63%) | .85‡ | ||
Endurance exercise (total min/week) | |||||
Baseline | 77 ± 113 | 89 ± 102 | .22 | .001 | .99 |
3 Months | 141 ± 100 | 173 ± 130 | |||
6 Months | 121 ± 81 | 128 ± 111 | |||
Strengthening exercise (total min/week) | |||||
Baseline | 21 ± 46 | 11 ± 29 | .54 | < .001 | .61 |
3 Months | 56 ± 66 | 53 ± 70 | |||
6 Months | 53 ± 59 | 34 ± 37 | |||
6-Minute walk test (m)§ | |||||
Baseline | 406 ± 150 | 436 ± 92 | .22 | .70 | .05 |
3 Months | 386 ± 157 | 450 ± 91 | |||
6 Months | 394 ± 165 | 456 ± 91 | |||
CRQ-Fatigue (score range: 4-28)† | |||||
Baseline | 16.1 ± 4.4 | 17.1 ± 5.3 | .29 | .03 | .13 |
3 Months | 16.6 ± 4.8 | 19.4 ± 4.1 | |||
6 Months | 17.7 ± 5.2 | 18.3 ± 4.4 | |||
CRQ-Mastery (score range: 4-28)† | |||||
Baseline | 20.4 ± 5.2 | 21.7 ± 3.2 | .35 | < .001 | .98 |
3 Months | 22.3 ± 5.8 | 23.6 ± 2.9 | |||
6 Months | 22.4 ± 5.5 | 23.6 ± 3.7 | |||
CRQ-Emotional functioning (score range: 7-49)† | |||||
Baseline | 33.4 ± 8.0 | 35.9 ± 7.2 | .33 | .38 | .98 |
3 Months | 34.6 ± 8.7 | 36.8 ± 7.5 | |||
6 Months | 34.5 ± 8.6 | 36.8 ± 7.8 | |||
CRQ-Total score (score range: 20-140)† | |||||
Baseline | 85.8 ± 18.9 | 93.5 ± 15.7 | .19 | < .001 | .60 |
3 Months | 92.7 ± 22.5 | 102.1 ± 15.6 | |||
6 Months | 94.5 ± 22.6 | 99.9 ± 16.8 | |||
SF-36 Physical composite (score range: 0-100)† | |||||
Baseline | 32.8 ± 8.5 | 37.3 ± 7.0 | .07 | .04 | .99 |
3 Months | 35.3 ± 11.0 | 41.0 ± 7.9 | |||
6 Months | 35.2 ± 10.6 | 39.9 ± 7.6 | |||
SF-36 Mental composite (score range: 0-100)† | |||||
Baseline | 51.8 ± 9.9 | 49.7 ± 10.1 | .70 | .31 | .47 |
3 Months | 52.2 ± 11.7 | 52.8 ± 9.6 | |||
6 Months | 53.5 ± 11.6 | 51.3 ± 10.0 |
*Values are mean ± SD unless otherwise stated. CRQ, Chronic Respiratory Questionnaire; ADL, activities of daily living; SF-36, Medical Outcomes Study Short-Form 36.
†Higher scores are better.
‡Chi-square test.
§For the eDSMP group, n = 18.
A majority of participants in both groups advanced in their stage of readiness for exercise with up to 84% reporting that they were in either action or maintenance at 3 months (see
Total scores on the CRQ, reflecting disease-specific HRQOL, improved over time for participants in both the eDSMP and fDSMP (
There was a total of 11 acute exacerbations of COPD in 10 participants, captured either through the electronic or paper diaries or obtained during the telephone or email follow-up contacts. The short study duration and heterogeneous disease severity across participants made it unrealistic to capture enough events for group comparisons.
There were small improvements in participants’ already high baseline knowledge of dyspnea management strategies at 3 months, which was sustained at 6 months (
Comparison of mediators of treatment effects: knowledge, self-efficacy, and perception of support*
fDSMP |
eDSMP |
Group |
Time |
Group × Time |
|
|
|||||
Dyspnea knowledge (score range: 0-15)† | |||||
Baseline | 12.5 ± 2.3 | 12.6 ± 1.8 | .49 | < .001 | .68 |
3 Months | 13.3 ± 1.6 | 13.8 ± 1.0 | |||
6 Months | 13.8 ± 1.5 | 14.1 ± 1.0 | |||
|
|||||
Self-efficacy for managing dyspnea (score range: 0-10)† | |||||
Baseline | 4.6 ± 2.4 | 4.7 ± 2.3 | .18 | .02 | .34 |
3 Months | 5.5 ± 3.3 | 6.8 ± 2.3 | |||
6 Months | 5.0 ± 3.6 | 6.7 ± 2.6 | |||
|
|||||
Perception of general social support (score range: 0-100)† | |||||
Baseline | 68.9 ± 37.2 | 62.2 ± 27.6 | .64 | .42 | .68 |
3 Months | 65.2 ± 31.7 | 64.0 ± 24.3 | |||
6 Months | 70.9 ± 31.0 | 66.4 ± 27.1 | |||
Perception of exercise support from research staff ‡ | |||||
3 Months | - | - | - | ||
Strongly agree, no. (%) | 13 (65%) | 14 (74%) | |||
Agree, no. (%) | 5 (26%) | 5 (26%) | |||
6 Months | - | - | - | ||
Strongly agree, no. (%) | 16 (80%) | 13 (68%) | |||
Agree, no. (%) | 2 (10%) | 6 (32%) |
*Values are mean ± SD unless otherwise stated.
†Higher scores are better.
‡At 3 months, n = 19 for fDSMP group.
Approximately 38% (n = 15) of the participants were randomly assigned to their preferred program; 28% (n = 11) were assigned to their nonpreferred program. The remaining 13 participants expressed no program preference. Comparisons across these three groups (concordant, discordant, nonpreferential) on the binary outcome of change in the CRQ-Dyspnea of at least + 2.5 points showed no differences among the groups in the proportion of participants who met this clinically important improvement threshold at 3 or 6 months (
A majority of the technical issues for the eDSMP had to do with access to the study website. Participants had to install proprietary security software plug-ins in order to access the site. Five participants had at least two pop-up blocker software programs on their systems and required remote assistance from the vendor’s technical support staff to disable the programs. Three participants expressed concerns about disabling their pop-up blocker software and security vulnerabilities when accessing the site with the Internet Explorer browser; the site was not accessible with non-Windows-based operating systems or other Web browsers. One participant required almost 5 hours of technical support from the vendor before she could access the site. Participants commented during the exit interview that the decreased accessibility, slow loading of the Web application, and security concerns discouraged them from using the site more regularly.
There were also notable usability challenges with the wireless-enabled PDA and unreliable wireless coverage [
The numerous technical problems decreased participant engagement with the Web and PDA tools, and this was reflected in the number of Web log-ins and the exercise and symptom entries via the website and/or the PDA (
A total of 77 and 122 exception alerts were generated based on lapses in exercise entries or reports of worsening symptoms from usual, respectively. Most fDSMP participants (80%) attended all six face-to-face education sessions (5.8 ± 0.6 sessions), while more of the eDSMP group (96%) participated in at least six online chat education sessions (6.2 ± 2.0 sessions). The number of email and telephone reinforcement follow-ups was comparable between groups.
Participants in both groups were most satisfied with the initial face-to-face interviews (
Usage statistics over 6 months for eDSMP
Usage Parameter | Mean ± SD (Range) |
Website log-ins | 59 ± 34 (20-151) |
Exercise goal setting | 4 ± 6 (0-25) |
Exercise entries | 156 ± 80 (51-338) |
Symptom entries | 137 ± 48 (17-229) |
Exercise exception alerts | 4 ± 5 (0-17) |
Symptom exception alerts | 6 ± 6 (1-20) |
Reinforcement emails | 14 |
Education sessions | 6.2 ± 2.0 (0-11) |
Satisfaction with the dyspnea self-management program*
fDSMP |
eDSMP |
|
Initial face-to-face interview | 2.9 ± 0.31 | 2.8 ± 0.48 |
Education sessions | 2.7 ± 0.71 | 2.4 ± 0.78 |
Educational materials | 2.6 ± 0.68 | 2.6 ± 0.50 |
Exercise goal setting | 2.6 ± 0.59 | 2.4 ± 0.70 |
Exercise and symptom self-monitoring | 2.5 ± 0.69 (paper log) | 2.1 ± 0.73 (PDA) |
Receiving exercise prompts on PDA | N/A | 2.4 ± .51 |
Reinforcement (telephone vs email) | 2.7 ± 0.66 (telephone) | 2.6 ± 0.50 (email) |
Interaction with peers | 2.2 ± 0.86 | 1.9 ± 0.80 |
Assistance with managing acute exacerbations of COPD | 2.3 ± 0.73 | 2.4 ± 0.78 |
Overall program | 2.7 ± 0.47 | 2.6 ± 0.51 |
*1 = not at all satisfied, 2 = quite satisfied, 3 = very satisfied. Values are mean ± SD.
We found that older adults with moderate to severe COPD showed clinically and statistically meaningful improvements in dyspnea with ADL as a result of participating in either a 6-month, face-to-face (fDSMP) or an Internet-based (eDSMP) dyspnea self-management program. These changes were consistent with overall increases in the mediator of self-efficacy for managing dyspnea and in the secondary outcomes of self-reported exercise endurance time and physical functioning. This is the first study we are aware of that employed a randomized design to test the effects of a technology-enhanced dyspnea self-management intervention for patients with COPD.
This study builds on our previous published findings with the fDSMP [
For participants who were able to log their exercise and symptoms using their desktop computer or PDA, the study nurses could review this information in real time and provide feedback and encouragement. Even for those who had trouble with either the website or PDA, the nurses showed a genuine interest in the participants’ well-being and consistently used motivational techniques to reinforce their confidence in self-management of dyspnea, including regular exercise. We believe that these positive nurse–patient collaborative interactions that were not dependent on the Web application and primarily occurred asynchronously via email increased the eDSMP group’s engagement in exercise and consequently provided a positive impact on the perception of dyspnea similar to that of the fDSMP. Our observations are in line with findings from other behavioral studies of Internet-based physical activity and weight loss interventions. Those programs in which participants corresponded with and received regular feedback from a human counselor had increased treatment adherence that resulted in more robust outcomes [
A number of the participants in the current study reported that they enrolled in the study because they desired to “stay accountable to something or someone” and that they would be less likely to exercise if they were not “monitored.” This theme was also reported in a recent study of an Internet-based physical activity program with healthy adults [
Patient-centered models of care suggest that health care should be “tailored” to the individual and provided in accordance with their values and preferences [
Several limitations must be considered in interpreting our study findings. While the results are encouraging, it is important to note that due to significant technical and usability challenges, which for the most part could have only been resolved with a complete redesign of the Web and PDA application, it was necessary to stop the study early. We nevertheless gleaned important insights from this pilot study on the role of information and communication technologies in supporting collaborative self-management with older chronically ill patients and methodological issues that would have to be addressed with such clinical studies in the future [
Since the primary study outcome is a symptom and can only be derived through self-report, we have to assume that what we captured was the best representation of participants’ dyspnea experiences. While changes in dyspnea with ADL for both groups were accompanied by changes in other conceptually similar self-reported measures (eg, self-efficacy for dyspnea management and physical functioning), we did not observe improvements in a more objective indicator—distance covered during a 6-minute walk test. These observations are similar to that of our earlier study of the fDSMP in which dyspnea with ADL decreased but with only small changes in exercise performance [
It is possible that study participants desired to impress the investigators by responding favorably to the self-reported measures. We doubt that this was the case. Approximately one third of the sample was already in the active or maintenance stage of exercise and reported engaging in an average of 83 minutes of exercise per week at baseline, which is surprisingly comparable to a recent report on a large sample of patients with COPD [
Due to the technical and usability challenges with the Web and PDA application and differential participant attrition, we terminated the study before reaching our sample target. The absence of a significant group by time effect in the changes in the primary outcome of dyspnea could be due to insufficient power. Nevertheless, the differences in the dyspnea change scores between the two programs were small and not of the magnitude that would meet the accepted benchmark for a clinically significant difference. Future studies will need to confirm whether these two programs can indeed produce and sustain such benefits beyond 6 months and are superior to a control intervention.
Study participants were primarily Caucasian and generally well educated, reflecting the demographics of early Internet adopters [
Despite these limitations, this is the first study we are aware of that employed a randomized design to test the effects of a technology-enhanced dyspnea self-management intervention for older patients with COPD. The study included objective verification of disease severity with spirometry and exercise performance testing, which are often absent from eHealth studies. The sustained improvements in dyspnea with ADL over repeated measurements reflect the specificity of the intervention, that of dyspnea management. If future studies confirm that the two programs can effect significant improvements in dyspnea with ADL and secondary health outcomes, the potential for use in the continuum of self-management interventions is enormous (eg, symptom management for patients with other cardiopulmonary diseases or those with mild disease who are not eligible for pulmonary rehabilitation, a “booster” for graduates of these programs, or as palliative care for those who are too ill to participate in face-to-face programs).
This study was supported in part by Robert Wood Johnson Health e-Technologies Initiative grant RWJ49153 to Dr. Carrieri-Kohlman, General Clinical Research Centers at the University of Washington (MO1-RR-000037) and UC San Francisco (MO1-RR-00079) and Grant Number 1KL2RR025015-01 from the National Center for Research Resources (NCRR), a component of the National Institutes of Health (NIH) and NIH Roadmap for Medical Research. The content is solely the responsibility of the authors and does not necessarily represent the official view of NCRR or NIH.
None declared.
Selected PDA and website screenshots
activities of daily living
body mass index
body mass index, airflow obstruction, dyspnea, exercise
chronic obstructive pulmonary disease
Chronic Respiratory Questionnaire
Internet-based dyspnea self-management program
face-to-face dyspnea self-management program
forced expiratory volume in 1 s
forced vital capacity
personal digital assistant
Medical Outcomes Study Short-Form 36
shortness of breath