Developing a Web Platform to Optimize the Self-Management of People Living with a Chronic Respiratory Disease

Abstract

Purpose: The purpose of this article is to describe the development of a new Web platform to optimize self-management after pulmonary rehabilitation (PR) for persons living with a chronic respiratory disease (CRD) and to present data on its usability. Method: The Web platform is informed by a theoretical framework of behaviour changes and concepts of self-management and self-efficacy. It uses breathing exercises and a logbook and is meant to be a self-management tool. Usability was tested for 8 months after PR with a group consisting of five patients with chronic obstructive pulmonary disease and one with pulmonary fibrosis. We evaluated adherence (e.g., number of exercise/weeks), quality of life, dyspnoea, and functional capacity. We measured frequency count for adherence and pre–post differences per patient for clinical outcomes. Results: Four participants’ adherence was higher than 50% of completed exercises (72 exercise/weeks). Five of six participants showed maintenance of functional capacity (6-minute walk test) 8 months after PR. Four participants showed maintenance of their quality of life. Four participants showed a deterioration in dyspnoea on the Borg Scale of Perceived Exertion. Conclusions: We developed a new theory-informed Web platform to optimize self-management after PR for persons living with a CRD. The pilot Web platform appears to optimize adherence to self-management techniques and possibly stabilize people’s health outcomes.

Chronic respiratory diseases (CRDs) have a negative impact on the quality of life and lung capacity of millions of people around the world.¹ CRDs include diagnoses of chronic obstructive pulmonary disease (COPD), pulmonary fibrosis, and asthma.¹ Pulmonary rehabilitation (PR) is an effective treatment strategy for improving the quality of life of people with COPD.² In PR, participants learn to better control their exacerbations and to engage in regular physical activity. These behaviours have a positive effect on participants’ functional capacity and can reduce their symptoms.³

However, evidence demonstrates that the benefits obtained during PR are not sustained and, in fact, tend to decrease 6 months to 1 year afterward.^4,6 In PR, the self-management strategies that patients learn are often related to short-term goals and do not emphasize the importance of long-term self-management strategies.⁷ In addition, maintenance programmes are rarely provided after PR. As a result, rates of adherence to self-management strategies in this population are known to be less than 50%.⁸

We identified a need to develop a supervised PR maintenance programme that would motivate people with CRD and encourage them to adhere to the exercises they learned in PR and pursue self-management techniques in the long term. This need coincided with the increasing use of technology to deliver long-term rehabilitation care. Evidence shows that programmes that focus on self-management and self-efficacy can lead to behavioural change and can improve quality of life, functional capacity, or both.⁷ Increasing patients’ understanding of their illness and instilling in them the confidence to translate their knowledge and new skills into everyday life results in increased self-efficacy and an increased chance that they will adopt self-management strategies.⁷ Interventions that can be done at home and at low cost and that do not require equipment are useful for encouraging long-term adherence.⁵ Telemanagement that focuses on optimizing self-management behaviours can be a useful option for tackling the common barriers to participant adherence such as poor transportation options and inclement weather.⁹

Thus, the objectives of this study were twofold: (1) to develop a Web platform that would optimize self-management after PR for persons with CRD and (2) to present our preliminary data on its effects on adherence, health outcomes, and usability.

Methods

Our study entailed building a Web platform, carrying out usability testing by collecting the reactions of the participants who used it, and determining the participants’ clinical outcomes.

Description of the platform

Conceptual underpinnings

The development of our Web platform was informed by the theoretical framework developed by Bourbeau and Nault,⁷ which combines the strengths of the Chronic Care Model of Disease Management,¹⁰ Self-Management Model,¹¹ and Precede/Proceed Model.⁷ These models are based on Bandura’s theory of self-efficacy.¹² In addition to using these three models, our platform incorporates the theories and concepts of e-learning to effectively deliver health care without face-to-face interaction.¹³

Briefly, to foster a change in behaviour, a programme for persons living with a chronic disease needs to focus on techniques that optimize self-management and self-efficacy skills. For example, individuals need to know how to change their behaviour and have the competence to train themselves (both are skills).¹² Self-efficacy is individuals’ belief that they have the capacity to achieve an action.⁷ To succeed, feedback and encouragement are essential to build people’s confidence. Positive reinforcement increases motivation and prevents individuals from focusing on negative experiences. When people learn how to self-manage and have a high-level of self-efficacy, they have a better chance of changing their behaviour.⁷

Marquis and colleagues adapted the Self-Management Model for specific use in treating COPD.¹⁴ We designed our Web platform to provide key content for optimizing the self-management behaviour of participants with CRD. We then carried out usability testing by collecting the participants’ reactions. We present the framework for the platform in Figure 1.

Figure 1 .

Self-Management Model, adapted from Bourbeau and Nault and Marquis and colleagues.^7,14

Our development team consisted of five master’s students in physiotherapy (PT, JMR, EMG, IG, PSJ) under the supervision of a professor (NM) with 15 years of clinical experience with CRD and research expertise in telerehabilitation for participants with COPD. Four components were built into the platform to address our theoretical framework.

Component 1: respiratory exercises

The first component of the platform consists of the respiratory exercises that we developed, which participants could do without supervision:

1. Diaphragmatic breathing: While breathing, participants put one hand on their chest and the other on their abdomen. The abdomen should expand while the chest stays still.

2. Chest expansion exercises: While breathing, participants put one hand on each side of their ribcage and try to expand their chest on each side.

3. Chest expansion exercises using the upper limbs: While breathing, participants raise their arms in front of them or to the side and bring them slowly back down.

These three exercises are taught in PR programmes by experienced clinicians. Breathing techniques can improve people’s tolerance for functional exercise, have a positive effect on their self-efficacy and anxiety, and may reduce their risk of hospitalisation.¹⁵ The platform suggested that participants perform the exercises twice a day (morning and evening) for about 15 minutes each session, 6 days per week. At baseline, each exercise was to be performed four times for 1 minute each time and six respirations per minute.¹⁶ The physiotherapist then adapted each exercise to the participant’s pulmonary capacity and measured inspiration and expiration time (in seconds).

Component 2: strategies for fostering self-management behaviour

The second component of the platform consists of three strategies that aim to foster self-management behaviour.

1. Visual support: The platform provides a description of the exercises and a video to remind participants how to perform them. It also offers visual support inspired by cardiac coherence to help the participants adopt an adequate inspiration–expiration rhythm (Appendix 1 provides a screenshot of a English-translated version).¹⁶ When the participants were ready, they pressed the Start button and were guided through each exercise. An exercise began with a relaxing piece of music, and the participants could see a green line going up when it was time to inhale and a red line going down when it was time to exhale. Inhale and exhale times were individualized to participants on the basis of their breathing pattern, which was determined in a face-to-face meeting at the beginning of the study.

2. Progress bar: A weekly progress bar is displayed at the top of the screen to motivate participants to reach the number of breathing exercises (of 144 suggested by the physiotherapist per week). While performing their exercises, they can see the progress bar get closer to 100%.

3. Logbook: During PR, participants learn the appropriate parameters of different types of exercise: cardiovascular (cycling, walking, using stairs, etc.) or upper and lower body strengthening exercises. The platform includes a logbook in which participants could include all the exercises they had learned during PR. The logbook acts as a reminder to complete the exercises and to help patients self-evaluate their progress. All the exercises completed by patients were recorded through the Web platform, and these data were available to the participants and to their health care professional (e.g., physiotherapist, pneumonologist).

Usability of the platform

Usability testing was approved by the Research Ethics Board of the Centre intégré universitaire de santé et de services sociaux de l’Estrie – Centre hospitalier universitaire de Sherbrooke. Before the end of PR, a meeting was set up to explain to participants how to use the Web platform, as well as how their data would be collected. Participants’ consent was obtained at this meeting.

Potential participants

The platform is designed to help participants who have been diagnosed with CRD and who have completed PR to maintain an active lifestyle. Typically, people in our PR programme (1) are living with chronic pulmonary disease (e.g., COPD, COPD with asthma, pulmonary fibrosis), (2) have a score of 2 or more out of 5 on the Medical Research Council of Canada (MRC) dyspnoea scale (a method of grading the effect of breathlessness on daily activities),¹⁷ and (3) have been referred by a physician to perform respiratory exercises (in signed medical notes). Therefore, we identified potential users who fit the following inclusion criteria for this study: (1) they had completed the PR programme at our centre; (2) they had been a non-smoker for at least 1 year; (3) they had sufficient understanding of verbal and written instructions to participate remotely; and (4) they had a home computer, tablet, or cell phone connected to the Internet.

The exclusion criteria were as follows: (1) an inability to give informed consent and (2) an unstable condition in the 4 weeks preceding the study (e.g., change in medication or symptoms, whether for dyspnoea or expectoration [colour, quantity, or both]).

As a result, six participants were recruited from our PR programme to evaluate the usability of the platform: five with COPD and one with pulmonary fibrosis.

Outcomes

Adherence and satisfaction

The participants’ adherence to the study was automatically registered on the platform by the number of respiratory exercises they performed. A 100% adherence rate represented a person who did all the exercises within the parameters suggested: four series of three exercises, performed twice per day, 6 days a week, for a total of 144 exercises per week.

Satisfaction was assessed using a questionnaire developed by the research team (reproduced in Appendix 2). The questionnaire was administered after the participants had used the platform for 8 months. They were required to rate four aspects on a scale ranging from 1 (not satisfied) to 4 (very satisfied); the maximum score was 16 points. The participants rated the presentation of the platform, the simplicity of its use, the music, and whether the research team had answered the participants’ questions adequately and rapidly. An evaluator was present to explain the aspects. All comments from the participants were collected to improve the platform for subsequent use.

Clinical outcomes

Six clinical outcomes were selected for this pilot study. Quality of life was measured using the COPD Assessment Test (CAT);¹⁸ a fluctuation of 2–3 points is considered a clinically significant change.¹⁸ The CAT consists of eight questions that measure the impact of pulmonary symptoms on the quality of life.¹⁸ Shortness of breath was measured by two dyspnoea scales (modified Borg Scale of Perceived Exertion [0–10] and MRC). Pain was measured by using the visual analogue scale (VAS) of pain;¹⁹ a fluctuation of 1 or 2 is considered a clinically significant change in chronic lung disease.²⁰ The 6-minute walk test (6MWT) is a standardized measure that evaluates functional capacity; the minimum variation for indicating a clinically significant change is 25 metres or more.^13,21 Finally, a modified Borg scale (0–10) was used to assess dyspnoea after the 6MWT; a fluctuation of 1 point is considered clinically significant.²⁰

Data collection

The participants used the platform for 8 months beginning as soon as they had finished PR. This amount of time was chosen to capture a time point later than 6 months when the benefits of PR start to decrease (this occurs within 6–12 mo). A telephone number and e-mail address were available on the platform so that the participants could reach the research team if they had any questions. Measurements were taken by the PR team and the research team. We used frequency count to assess adherence and difference before and after the study to establish the clinical outcomes.

Results

The characteristics of the participants, their adherence and satisfaction, and the clinical outcomes are provided in Table 1. All participants completed the two clinical assessments.

Table 1 .

Characteristics of Participants, Their Adherence and Satisfaction Outcomes 8 Months after PR, and Clinical Outcomes

Participant	Age, y	Diagnosis	FEV1 % predicted	Adherence, %	Satisfaction, out of 16 points	Clinical outcome
						CAT	MRC	Borg	VAS	6MWT
1	63	COPD	35	91	14	−6*	0	0	0	15
2	67	COPD	42	96	13	5	0	0	1	−15
3	74	COPD	50	92	11	0	0	1	−2*	−12
4	70	COPD	85	35	12	2	1	1	−3*	13
5	59	COPD	36	49	10	−2*	1	2	0	20
6	63	PF	104	61	13	0	0	2	−	35*
Range, min–max	59 to 74	–	35 to 85	35 to 96	10 to 14	−6 to 5	0 to 1	0 to 2	−3 to 0	−15 to 35

Notes: Difference between outcomes 8 mo after PR and immediately after PR. A dash indicates not applicable.

^*Minimal clinically important difference.

PR = pulmonary rehabilitation; % FEV₁ = percentage of forced expiratory volume in 1 s; CAT = COPD Assessment Test; MRC = Medical Research Council of Canada dyspnoea scale; VAS = visual analogue scale (of pain); 6MWT = 6-minute walk test; COPD = chronic obstructive pulmonary disease; PF = pulmonary fibrosis.

Participants

Six participants used the Web platform. Four had a diagnosis of severe COPD (percentage of forced expiratory volume in 1 s [FEV₁%] predicted = 35, 36, 42, and 50), and one had mild COPD (FEV₁% predicted = 80). One participant had pulmonary fibrosis (FEV₁% predicted = 104).²² The participants were aged 59–74 years, and half were women.

Adherence and satisfaction outcomes

Four of the six participants had an adherence rate of more than 50% (>72 of 144 exercises per week completed), and three of them reached 90% (130 of 144 exercises per week completed). The other two participants had adherence rates of 35% and 49%. One participant stopped using the platform at Week 30 for medical reasons (pre-transplant assessment) and another participant stopped at Week 23 for personal reasons.

The participants were satisfied with the platform (average score: 12 out of 16). The main theme of their written comments was that it motivated them to complete the exercises (3). However, half did not appreciate having music during the breathing exercises – they turned off the sound when they did them (3). They were satisfied with the presentation of the platform (five were very satisfied, one was satisfied), and most found it simple to use (five were very satisfied, one was not satisfied). Most expressed satisfaction in using the platform without any formal follow-up by the research team (i.e., the team answered adequately and rapidly to the patients’ inquiries; three participants were very satisfied, one was satisfied, one was unsatisfied, and one was very unsatisfied).

Clinical outcomes

Quality of life

With respect to CAT scores, we observed a clinically significant improvement in two participants, no change in two participants, and a clinically significant decrease in two participants over the 8 months they used the platform.

Symptoms

Four participants had stable MRC scores (no change), and two participants obtained a higher score – that is, an increase in dyspnoea over time. On the Borg Scale, two participants showed no clinically significant change, and the other four participants showed an increase in perceived shortness of breath. For pain (VAS), we observed an improvement or maintenance for four participants.

Functional capacity

On the 6MWT, one participant increased his distance by 35 metres, and the other five participants maintained their distance.

Discussion

The objective of this study was to describe the use of a new theory-informed Web platform to optimize self-management after PR for people living with CRD and to present data on its usability. Web-based tools are currently used for telemonitoring, but few studies have used this technology to investigate self-management.²³ A Cochrane review found only three studies of Web tools that delivered self-management content and only one for long-term management. Those tools incorporated self-management educational programming using videos and multimedia.²³

Content development

Based on the specific theoretical framework for CRD, our platform content included respiratory exercises (diaphragmatic breathing, chest expansion exercises, and chest expansion exercises using the upper limbs) and access to a logbook in which participants could note the aerobic and strengthening exercises they had done to monitor their weekly exercise routine. We used three strategies to optimize self-management: each exercise was individualized, participants had access to historical data, and the platform provided a weekly progress bar. Developing theory-informed Web platforms to support self-management may optimize PR outcomes. To use our platform, health care professionals need to know how to perform and teach the respiratory exercises, and future iterations, which will include an interactive component between health care professionals and patients, may require them to be trained in lifestyle counselling and motivational approach.

Adherence and satisfaction

The platform is intended to be used by patients as an integral part of long-term self-management. Thus, we ensured that our exercise prescription was flexible to replicate real-world conditions. Participants’ adherence rate was 50%, even though two participants stopped using the platform at Weeks 23 and 30 (out of 32 weeks), respectively. This rate may be superior to other maintenance programmes for chronic disease,⁸ and it supports further investigation of our platform’s effectiveness. Attrition in long-term rehabilitation trials will remain a challenge in future assessment of the platform. Overall, the participants were satisfied with our platform.

Clinical measures

Our study did not have a large enough sample size to demonstrate the platform’s clinical effectiveness to improve clinical outcomes such as quality of life, but it does allow us to generate hypotheses before we take future steps. The nature of pulmonary disease is such that, without intervention, a deterioration in symptoms is expected over time.²⁴ We expect that the simplicity of the platform can motivate people living with CRD to pursue lifestyle change through exercise. By adhering to the exercises provided on the platform, participants’ sensation of dyspnoea, functional capacity, and overall quality of life should stabilize.

Our platform allowed most participants to maintain their functional capacity on the 6MWT even though their dyspnoea seemed to have deteriorated. This symptom is more likely to be associated with the natural progression of the condition than with an adverse effect of the respiratory exercises.¹⁵ Using the platform to optimize self-management may help participants improve their clinical outcomes related to CRD, but this will require further evaluation.

Future iterations

On the basis of this study’s results, future iterations of the platform will include three new elements:

1. Participants said that lack of time prevented them from doing the exercises twice a day and that they did not think that this amount was necessary for their condition. Thus, we will replace the mandatory two times daily exercise with once daily exercise, although patients will still be encouraged to do more. Evidence has shown that this is still an appropriate amount.¹⁵

2. Education is a key element of self-managing CRD. We focused on exercise technique because participants had already received education during their PR programme. Future versions of the platform will include additional education about managing breathlessness in the form of reminders.

3. We will include an interactive component between health care professionals and participants. For example, health care professionals will follow up with the participants every month by phone, which will enable the participants to make better use of the logbook.

Our study had several limitations. First, we targeted three strategies to foster change in behaviour, based on a conceptual framework; however, behavioural change in chronic disease may require a broader set of techniques and exercises. Second, our sample of six participants limited the study’s generalizability to the population with CRD, who may have diverse clinical profiles. Third, the lack of a control group and the small sample size precluded making a precise assessment of the impact of the platform on clinical outcomes. Fourth, the logbook was underused; in a future study, we intend to increase participants’ adherence to the lifestyle recommendations they learned during PR by using the logbook more systematically and taking advantage of the follow-up by health care professionals. Finally, the time between when participants used the platform and when they responded to the questionnaire (8 mo) is not conventional; in a future randomized trial, we intend to extend this to 12 months.

Conclusion

We developed a theory-informed Web platform that people with CRD could use to optimize their self-management after undergoing PR. Initial usability testing showed a positive adherence rate and satisfaction. The platform provided respiratory exercises, visual support, a logbook, and a weekly progress bar to encourage motivation. It may help patients maintain their clinical outcomes after PR. It is available on request to health care professionals who want to pilot test it with their own participants. Future research will include a version that has been translated into English and a randomized controlled trial to test its effectiveness on clinical outcomes.

Key Messages

What is already known on this topic

Pulmonary rehabilitation (PR) improves quality of life of people with chronic respiratory disease (CRD). However, the benefits obtained are often not sustained and tend to decrease in the 6–12 months afterward. Maintenance programmes are needed that motivate participants with CRD to pursue self-management strategies.

What this study adds

We developed a theory-informed Web platform that persons with CRD could use to optimize their self-management after PR. Initial user testing showed a positive adherence rate and high level of satisfaction. The platform may be able to stabilize the clinical outcomes related to CRD. Our future research will include an English translation of the platform and a randomized controlled trial to assess its effectiveness.

APPENDIX 1. Screenshot of Web Platform

APPENDIX 2. Satisfaction with the Web Platform

This short questionnaire aims to collect your satisfaction with the Web platform you have used in recent months. Your answers and comments will help improve this CRD management tool and help us optimize its accessibility and efficiency. We ask you to note your level of satisfaction: not satisfied, unsatisfied, satisfied, or very satisfied. Feel free to leave us comments and suggestions!

Thank you so much for taking part in our study and thus promoting the advancement of health knowledge.

Appreciation	Not Satisfied	Unsatisfied	Satisfied	Very Satisfied
General presentation of the platform
Comments:
Simplicity of the Web platform
Comments:
Answers to question
Comments:
Music
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