Patients' Use of Self-Monitored Readings for Managing Everyday Life with COPD: A Qualitative Study

Abstract

Objective: Effects of self-monitoring depend on how patients engage with readings and how this engagement is used for managing chronic disease. This article reports on a study of how chronic obstructive pulmonary disease (COPD) patients made use of readings during 16 weeks of self-monitoring. Patients and Methods: Semistructured interviews were conducted with 22 COPD patients three times each: at the beginning, halfway through, and after the monitoring device was collected. Spouses of nine interviewees were present during one or more interviews. The analysis of how patients used self-monitored readings was based on critical psychology. Results: Patients used readings to monitor bodily condition, to judge whether and when to contact health professionals, to communicate with health professionals about health management, to revise planned activities, to engage close relatives, and to motivate exercise and other health behavior. Self-monitoring can produce a sense of security as readings provide grounds for explaining symptoms and widen the scope of possibilities for taking action. Patients experienced readings as encouraging, reassuring, depressing, worrisome, and at times disturbing. A few patients involved themselves with readings in ways that are emotionally challenging and contrary to medical advice. Reasons for not making use of self-monitoring include good health or not regarding monitoring as relevant at the time. Conclusions: Results can qualify the support health professionals offer in relation to patients' self-monitoring and self-management.

Introduction

Healthcare systems throughout the Western world face growing numbers of patients with chronic diseases.¹ One way of addressing the increase in treatment costs is to introduce self-monitoring, requiring patients to monitor their physical conditions.^2
–4 Several medical trials were carried out in order to evaluate the effect of self-monitoring.^5

–10 In other trials, patients' self-monitoring was supplemented with patient education or self-management programs designed by professionals aimed at supporting patients' health-related behavior and decision making.^11,12 In yet other studies self-monitoring was coupled with patient education aimed more broadly at increasing patients' knowledge and ways of managing illness in everyday life.¹³ Strategies included teaching patients about symptoms and the course of their disease, how to interpret and react to readings, and how to lead lives that will keep readings within the best range possible.^14,15 It has been shown that the scope and durability of the effect of self-monitoring increase along with the extension of professional support directed at the development of patients' self-management strategies.¹⁶ However, we have not been able to identify any studies that report on how patients respond to or make use of self-monitored readings for self-management purposes.

The aim of this article is to explore how chronic obstructive pulmonary disease (COPD) patients make use of readings during 16 weeks of self-monitoring in the Telekat project.

The Telekat Project

In the Telekat project self-monitoring was conducted as part of a randomized clinical trial and carried out in the region of Northern Jutland, Denmark, during 2008–2011. The project aimed to prevent re-admission of patients with severe or very severe COPD by promoting home-based telerehabilitation.^17,18 In total, 111 COPD patients were included in the study and randomized into an intervention group (n=60) and a control group (n=51). Inclusion criteria were age 18 years or older, understanding of oral and written trial information, diagnosed with COPD in Stages III and IV (severe and very severe COPD), and COPD as the primary cause of reduction in function. Exclusion criteria were living outside Aalborg Municipality, heart disease that could limit physical function, mental illness, terminal malignant disease, severe rheumatoid arthritis, and pregnancy. Telerehabilitation is defined in Telekat as rehabilitation centered round a patient's home supported by communication and information technology and healthcare professionals.

As COPD patients were enrolled in the study, a physician recorded baseline clinical data and prescribed how often the patient should measure values during the week. A telehealth monitoring box was installed in the patient's home for 16 weeks, and the patient was taught how to measure the clinical values, use a pedometer, and a Nintendo™ (Kyoto, Japan) Wii™ (home video game console). Patients were also visited by a physiotherapist and instructed on how to do home-based exercises. Using wireless technology, the telehealth monitor registered and transmitted data via a secure connection. Patients' data on blood pressure, pulse, weight, oxygen level, and lung function (spirometry) were sent via the Internet to a Web-based portal or to the patient's electronic healthcare record. Healthcare professionals accessed patients' readings on the agreed days of self-monitoring upon which they made contact with the patient to discuss his or her health and offer advice. If symptoms appeared that would indicate the onset of an exacerbation, the patient and healthcare professional maintained daily contact. Patients were able to access their own data any time they wanted.

Patients and Methods

Semistructured interviews were conducted with 22 COPD patients from the intervention group (n=60).¹⁹ Patients were sampled to represent women and men of different ages, civil status, employment, and whether or not they had children living at home (Table 1).

Table 1.

Characteristics of Participants in the Interview Study

	TELEREHABILITATION AND INTERVIEW PARTICIPANTS BY GENDER
VARIABLE	MALE (N=8)	FEMALE (N=14)
Age (years) (IQR)	69.4 (64, 73.8)	66.4 (44.6, 81.1)
Married/cohabiting (n)	3	4
Living alone (n)	5	10
Employed (n)	0	2
Retired (n)	8	12
Smoker (n)	2	2
Former smoker (n)	6	12
Using oxygen at home (n)	0	2
FEV₁ (L) (IQR)	0.97 (0.11, 1.41)	0.81 (0.36, 1.34)
Weight (kg) (IQR)	85.74 (50.8, 108.1)	70.23 (50, 85.9)
Body mass index (kg/m²) (IQR)	28.4 (18.6, 35.7)	26.36 (20.2, 34)
Oxygen saturation (% on ambient air)	92.5 (90, 95)	93.3 (91, 96)
Blood pressure (mm Hg) (IQR)	142/83 (107/80, 180/90)	134/81 (97/52, 178/104)
Heart rate (min) (IQR)	83 (70, 106)	88 (73, 111)
MRC dyspnea score (IQR)	3.4 (2, 5)	3.72 (3, 5)

FEV₁, forced expiratory volume in 1 second; IQR, interquartile range; MRC, Medical Research Council.

The 22 patients were interviewed in their homes by one of the two principal investigators (L.H. and B.D.). Patients were each interviewed three times during 16 weeks of self-monitoring, three times each: at the beginning, halfway through, and after the monitoring device was collected. Interview questions were directed at uncovering difficulties in everyday life and how patients would use readings for self-management purposes (Table 2).

Table 2.

Interview Questions Regarding the Use of Self-Monitored Readings

TIMING	QUESTIONS
First interview: shortly after enrollment	What do you expect from self-monitoring? How do you think you might use the readings?
Second interview: halfway through program	What is it like to do the self-monitoring? How do you use readings?
Third interview: after collection of monitor	What is it like not to do the self-monitoring anymore? How do you get on without readings?

Nine partners of interviewees were present during one or more interviews. Interviews lasted between ½ and 2½ h. Because of severe ill health, 6 patients were unable to participate in the third interview. All interviews were fully transcribed. Descriptive and analytic observational notes were generated after each interview.^20,21

Ethical Approval

Ethical approval was obtained from the Danish Regional Committee on Biomedical Research Ethics (August 27, 2008, reference number N-20080049). The project was reported to the Danish Data Protection Agency (August 7, 2008, reference number 2008-54-0498). All subjects in Telekat gave their written informed consent. Research activities adhered to the standards of the World Medical Association's Declaration of Helsinki.

Theoretical Framework and Analytical Approach

The analysis of patients' use of self-monitored readings is based on German and Danish critical psychology.^22,23 In this particular approach to social psychology the first person perspective of implicated subjects (i.e., COPD patients) is investigated, and attention is directed toward the concrete, sociomaterial conditions of these subjects. The aim is to gain insight into what particular circumstances mean to particular persons, how they develop strategies for managing everyday life under those circumstances, and how they ascribe meaning to and reason about how they act. This “conditions, meanings and reasons analysis”^23(p.4) works from the assumption that material circumstances are fundamentally interrelated and must be studied in conjunction rather than as isolated units. In the context of Telekat, this refers to self-monitoring devices producing readings that have particular meaning to patients, who reason about and use devices and readings in specific ways. This kind of analysis will elucidate how and why patients manage disease the way they do. The concept of “conduct of everyday life” grounds and ties the analysis of how patients live and manage disease under given sociomaterial conditions together with how they make use of technologies in local healthcare arrangements.^24
–26 Furthermore, the concept of “conduct of everyday” life helps to point toward the active effort required to conduct everyday life with disease and how this is done. Patients' use of readings is thus investigated from a first person perspective to explore the ways in which readings are made sense of subjectively and how readings are acted upon during the ongoing struggle to live with severe symptoms. This contrasts with investigating self-monitoring exclusively as a function of clinical intervention.

Data Analysis

NVivo8 was used for data management and thematic analysis. Coding strategies, code trees, attributes, and so forth were developed by the two principal investigators (L.H. and B.D.), who also carried out the actual coding and subsequent analysis. In order to work toward interrater reliability, the principal investigators initially coded two interviews each, compared codes and coding strategies, and agreed on definitions and procedure for subsequent coding. Identifying details have been changes for purposes of anonymity.

Results

Results are structured by three main themes divided into several subthemes: first, how readings are used by patients (Table 3); second, emotional responses to readings (Table 4); and third, how readings produce a sense of security (Table 5).

Table 3.

Theme 1: How Readings Are Used by Patients

Evaluating state of health

Keeping track of health

Contrasting readings with patients' own sense of health

Judging when to contact health professionals

Making and revising plans for activities

Motivating exercise

Engaging close relatives

Not making use of readings

Table 4.

Theme 2: Emotional Responses to Readings

RESPONSE	READING
Encouragement	When readings are better than usual or better than expected
Reassurance	When readings stay within an acceptable range over time
Depression	When readings are worse than usual or worse than expected
Worry	When readings fall below an acceptable range
Disturbance	When readings fluctuate or do not correspond to patients' sense of health

Table 5.

Theme 3: How Readings Produce a Sense of Security

Readings provide grounds for explaining one's own sense of health.

Readings are associated with weekly exchanges with health professionals.

Supervision of readings by health professionals creates shared responsibility.

Readings support learning processes and enhance a sense of control.

Self-monitoring promotes the inclusion of relatives in disease management.

Evaluating State of Health

The majority of patients interviewed (17 of 22) stated that they engaged with readings as part of their efforts to manage chronic illness. Readings are used to evaluate how well patients consider themselves to be, as readings are seen as an expression of “how the body is doing”. As one female patient put it during the first interview: “It tells me how I am if I can't feel it.” Another female patient said during the second interview that: “I can see when I am fine and when I am not.”

Keeping Track of Health

Patients also used readings to keep track of their health. “Keeping an eye” on readings is associated with a sense of overview. A female patient reasoned during the second interview: “I think I keep better track of my illness than I did before. Before, I just felt my way forward. Now I can tell what every little thing is about. I couldn't before.” Evaluating and keeping track of the state of the body add to the possibilities for doing something about any deterioration and thus staying in control of the disease. Depending on patients' evaluation of the readings, they act on the situation by, for example, postponing any further activity, adjusting activities, contacting a health professional, or treating themselves at home with medicine previously prescribed by a doctor. For some patients oxygen levels are the most important indicators of how they are, for some it is their blood pressure measurements, and for others a decline in lung function indicates a worsening of their condition. A male patient noted in the third interview: “It has meant that I have been able to keep track. Now, I don't know much about blood pressure—I don't know what it is supposed to be or not to be. But the oxygen I have worked out. And preferably that has to be 90 or above.” Some patients measured their oxygen level or blood pressure daily as a way of keeping track of their state of health during periods where they felt particularly poorly. For one patient measuring weight was an important indicator of how he was doing as he struggled to lose a recent weight gain that strained his health. For several patients the additional count of a pedometer served as an indication of how fit they were. Several patients used a combination of different measurements as indications of how their bodies were doing according to what readings they found the most indicative. Thus, for the 17 patients who used readings as part of their efforts to manage chronic disease, self-monitoring directed a focus and enabled more detailed attention to how they were and to potential fluctuations and changes in their state of health.

Contrasting Readings with Patients' Own Sense of Health

Patients talked about how they also relied on their own evaluation of the state of their bodies. They gave accounts of how their experience of the body mattered and how numbers were always held up against their own sense of health. If readings did not match how they felt, they commonly searched for clarity by questioning measurements, rather than questioning their own sense of health. For example, when patients felt worse than usual but readings showed average readings, they may have looked for other explanations, such as cold or foggy weather or emotional or physical strain. This indicates that patients commonly put their own sense of health before numbers. However, two patients mentioned specific occasions where readings led them to question their sense of health. This meant that numbers may cause anxiety when values are subnormal, even if one's sense of health does not indicate worsening or poor health. Reference to readings may also lead to ignoring signs of worsening, for instance if readings are normal or the same as usual even though patients' sense of health indicates a possible decline.

Judging When to Contact Health Professionals

Several patients stated that they used readings to help them judge whether and when to contact a health professional. These were patients with severe and persisting symptoms of COPD. In the first interview a female patient explained that before she tried out self-monitoring she would not always contact the healthcare system until her condition got out of control: “I am one for thinking, well, if you just sit ever so quietly, then you can wait until tomorrow. And then all of a sudden I have caught pneumonia. That's what I am not good at. The thought of phoning the doctor when I would rather lie down. Well, I can wait until tomorrow and then it might also be easier to get hold of him.” In the second interview she talked about how monitoring has helped her react earlier to signs of worsening: “I am really happy about this [self monitoing]. Because before I gained control over my disease, if I can put it like that, I was in and out of hospital the whole time.” Patients stated that the decision to contact a health professional would be prompted by, for example, uncommonly high, low, or fluctuating blood pressure, lower oxygen levels than usual, a decline in lung function, or a rapid increase or decrease in weight. Readings were combined with patients' own sense of health and worked in tandem to support or defer contacting a health professional. If readings indicated a potential health problem but the patient did not feel too bad, the patient may well have postponed making contact, and vice versa. Hence, readings work as a parameter alongside the bodily sense of health, and they help patients decide when or whether to contact a health professional.

Making and Revising Plans for Activities

Patients also used readings to plan activities for the day. For example, a patient commented that a reading of low oxygen levels may prompt a decision to postpone a planned walk into town because of fear of not being up to it. One female patient commented that she used measures of oxygen level to help her judge how much she is up to at any given moment. An example is whether she will be able to carry two bags of groceries from the car into the house or only one at a time. Simultaneously, paying attention to how she sensed her health has helped her become more aware of bodily signs of what she may be capable of.

Motivating Exercise

Other patients used readings of low oxygen levels for the opposite purpose, namely, to motivate as much physical exercise as they are capable of that day in order to enhance oxygen uptake. These patients have learned from personal experience that their breathing improves after exercise, even if the activity takes them to the very limit of their breathing capacity. Some have experienced this on their own, and others through rehabilitation and patient education programs. Even if readings were within an acceptable range, some patients reported that measuring values motivated them to exercise regularly and more vigorously than before. They did so in order to stay fit, as a way of challenging themselves, or to explore how physical activity influences their readings and sense of health. Two patients perceive this as a “sport.” As a male patient pointed out: “I think it has become a sport to keep an eye on this and that. You try to keep it down.”

Engaging Close Relatives

Several patients experienced home monitoring as a way for relatives to become involved in the management of chronic disease. During the second interview, a male patient evaluated the importance of monitoring to his family and to family relations: “Because they can tell that I do something about it. And they can see that it is improving. Because I know that my family is a bit scared of it, with me turning 74 soon. They say they want me around for a long time yet. […] And my wife joins me every time and we discuss it and…it's on Mondays and Fridays that we measure. We have a good time doing that.” For some spouses such involvement in patients' health makes their concerns legitimate and less contentious and adds to their understanding of the patient. Readings provided a common point of reference in addition to patients' reports of their capabilities. Measuring values and “keeping an eye” on them becomes a shared practice between patients and relatives, thus securing and supporting their mutual involvement in the patient's health. The wife of a male patient testified to the fine balance between taking her husband's difficulties seriously and trying to motivate him to stay active: “I don't think [male patient] would have taken on as much exercise if this hadn't been put in place. And I find that strange somehow as I exercise and couldn't make him do so—and he used to exercise a lot! Now we can really tell the importance of it.”

Not Making Use of Readings

Five of the 22 patients interviewed did not make use of readings for self-management purposes. These patients were happy to monitor but do not interpret readings or translate numbers into corresponding action. They left this to health professionals. Two of these patients were doing relatively well, enjoying an outward-bound way of life relatively independent of healthcare services at the time of the interviews. One patient did not use home monitoring even though she suffers from severe breathing difficulties as she regarded herself as a guinea pig participating in a test run of the equipment. She had agreed to self-monitor as a contribution to the development of organization and provision of care. Another patient was struggling with very poor health because of several severe chronic diseases but had not taken aboard self-monitoring as a further resource for self-management. Her life as a single mother consumed most of her strength, leaving very little energy to pursue effective ways of managing her own disease. Her frequent contacts with different healthcare professionals were strenuous and uncoordinated, and she could not envisage how self-monitoring would change this. The last of these five patients was an older male patient whose life was fairly restricted by his symptoms. He did not consider self-monitoring useful, partly because his values were stable during the trial period and partly because he considered occasional contact with his general practitioner as covering his healthcare needs.

Emotional Responses to Readings

Readings are associated with emotional responses (Table 4). Numbers are not neutral to patients but are ascribed positive or negative emotional value relative to their present health status and what they expect numbers to show on the basis of the current situation. On the one hand, numbers are encouraging when they are better than usual or better than expected and reassuring when they stay within the acceptable range over time. On the other hand, numbers may be experienced as depressing when worse than usual or worse than expected, as worrying when falling below an acceptable range, and as disturbing when fluctuating or not corresponding to patients' own sense of health. When readings invoke negative emotional responses and general anxiety they may prompt unintended health management strategies, such as declining to exercise or postponing activities because of fear of deterioration of health.

A Sense of Security

Readings as a way of understanding the body go hand in hand with feeling secure (Table 5). Several patients mentioned that out-of-range values provided the explanation they needed to understand why they felt unwell. Even if being out-of-range is not positive, the worrisome experience of feeling poorly was scaffolded by the explanation provided by readings. A female patient explained during the third interview: “I was a little low on oxygen from time to time and understanding why I was unwell, feeling off, gave me some sense of security.”

In addition, security also rests on aspects of self-monitoring other than knowing the numbers. Security is associated with monitoring being embedded in a wider context of healthcare. In the case of Telekat, patients experienced self-monitoring as supporting easy, regular, and ongoing contact (on a weekly basis during 16 weeks) with specialized health professionals. This means that patients do not have to initiate contact. Sometimes patients found themselves to be doing so poorly that they could not muster the energy to make contact. Another female patient spoke of this during the first interview: “It [self-monitoring] provides a sense of security. You know they have it under control. Because if it didn't look good and I hadn't been able to pull myself together to phone up, convincing myself that it would get better, then she would ring me and say ‘I can see it is a bit…and have you tried this or that…or else you may do so and so.' That would be a great support.” During the third interview she confirmed this by saying: “It has given me a sense of security. Readings and then you are in contact with others [health professionals] and you can chat about it and ‘try that.' I felt encouraged because I knew that it [expert help] wasn't far away and I was able to just talk to them, instead of seeing your GP [general practicitioner], and they try something and you are a bit more insecure as they are not experts.” The easy, regular, and ongoing contact in Telekat also means that patients did not have to make disease-related decisions on their own. Yet another female patient conveyed how this is an advantage during the third interview, just after the collection of the monitoring device: “It gave me a sense of security. But there is not much to having it if it doesn't go to some facility like it did to [home nurse]. So that she could keep track.” Supervision of readings by health professionals means that patients do not feel alone with the responsibility for interpreting and making use of readings. By comparison, supervision delivered from call centers situated in local hospitals configures exchanges between patients and professionals differently as professionals only make contact if readings indicate that something is wrong rather than according to a set schedule.²⁷

For patients in Telekat the regular contacts with health professionals were experienced as productive regardless of whether readings were positive or negative. This is so because they could discuss how they were and how they could manage living with COPD, whatever their challenges may be. To some patients this was a valuable learning practice as well as a way of having the disease recognized as a shared concern rather than an individual matter. At its best, self-monitoring, coupled with rehabilitation activities and regular exchanges with professionals, creates a shared health practice that may also include spouses and other family members. In this way, self-monitoring provides patients with opportunities for engaging with a wider COPD community that includes networks of professionals, relatives, and other patients and provides access to other health resources, such as local COPD-related activities, a rehabilitation program, self-help groups, and patient-initiated activities.²⁷

Discussion

The aim of telehomecare solutions involving self-monitoring is to equip patients to manage their disease.²⁸ Common definitions of self-management in the clinical literature stress the need for an educational process designed to assist patients in developing the necessary knowledge, skills, attitudes, and self-awareness to assume responsibility for health-related decisions and actions.¹⁶ However, the clinical literature reports on the general effect of telehomecare solutions and does not discuss the patients' contributions in making interventions work for self-management purposes.⁹ As we have shown, patients' perspectives convey diverse ways of using readings, and not all patients are equally assisted by readings in their attempts to manage disease in everyday life.

Two patients in the study experienced readings as emotionally challenging and sometimes used readings contrary to medical advice. Furthermore, patients' use of self-monitoring was not without technical challenges. At times, devices malfunctioned or showed divergent readings, and the majority of patients interviewed experienced measuring irregularities. Patients were generally skilled at identifying such irregularities, and they either dismissed readings or endeavored to make sense of them, rather than attributing them to their bodies and health. Considering the frequency of errors the possibility exists that patients may not detect odd readings or may wrongly interpret them as indicative of their health.

Finally, a minority of patients interviewed (5 of 22) did not use home monitoring as part of their efforts to manage chronic disease in everyday life. These patients displayed less interest in biomedical readings and advice on self-management. They were guided by and gauged what to do by other aspects of their lives than those related to their disease. Independence from medical measures and carrying on everyday life as usual were mentioned as important. However, they all considered home monitoring as a relevant tool for health professionals in providing care and treatment. These patients did not benefit from self-monitoring for self-management purposes. However, health professionals may use readings to qualify their treatment and care.

Conclusions

Patients with severe or very severe COPD engaged in different strategies to manage their everyday lives, and self-monitoring plays a different role in these efforts. Whether patients made use of readings depended on their need for close monitoring and whether they regarded self-monitoring as a relevant resource for managing life with chronic disease. Whether patients benefited from self-monitoring depends on their personal circumstances, their use of readings, and on how health professionals can support patients' self-management strategies, in combination with the availability of other resources such as rehabilitation programs and patient-led activities. Whether or not patients benefited from monitoring also depended on what patients are supposed to gain. There may be various aims of self-monitoring, including to assist patients in managing symptoms, providing patients with a sense of security, or to support professional efforts, in which case patients do not necessarily have to interpret values or translate them into action by themselves. One way of improving solutions that involve self-monitoring would be to pay more detailed attention to how health professionals can support patients' individual ways of using self-monitoring for self-management purposes. This would involve considering the organizational development of care delivery.^4,27

Footnotes

Acknowledgments

We thank the COPD patients and their relatives, as well as clinical and industrial partners, for participating in the project (for details see www.telekat.eu). The Telekat project is funded by the Program for User-Driven Innovation, the Danish Enterprise and Construction Authority, the Centre for Healthcare Technology, and Aalborg University and by several clinical and industrial partners in Denmark.

Disclosure Statement

No competing financial interests exist.

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