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Journal of Clinical Medicine
  • Review
  • Open Access

28 February 2020

Do Chronic Obstructive Pulmonary Diseases (COPD) Self-Management Interventions Consider Health Literacy and Patient Activation? A Systematic Review

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and
1
Centre for Primary Health Care and Equity, UNSW, Sydney NSW-2052, Australia
2
School of Health & Society, University of Wollongong, Wollongong NSW-2522, Australia
3
School of Public Health, Patan Academy of Health Sciences, Kathmandu-26500, Nepal
*
Author to whom correspondence should be addressed.
This article belongs to the Special Issue Self-Management and Health Promotion in Chronic Disease

Abstract

Self-management (SM) includes activities that patients initiate and perform in the interest of controlling their disease and maintaining good health and well-being. This review examines the health literacy and patient activation elements of self-management interventions for Chronic Obstructive Pulmonary Diseases (COPD) patients. We investigated the effects of the intervention on health-related quality of life, self-efficacy, depression, and anxiety among people with COPD. We conducted a systematic review of studies evaluating the efficacy of self-management interventions among COPD patients that also included health literacy or patient activation as keywords. Four electronic databases Medline, EMBASE, PsycINFO, and Google Scholar, were searched to identify eligible studies. These studies were screened against predetermined inclusion criteria. Data were extracted according to the review questions. Twenty-seven studies met the criteria for inclusion. All of the included studies incorporated health literacy components and focused on COPD and self-management skills. Three studies measured health literacy; two showed improvements in disease knowledge, and one reported a significant change in health-related behaviors. Seventeen studies aimed to build and measured self-efficacy, but none measured patient activation. Eleven studies with multicomponent interventions showed an improvement in quality of life. Six studies that focused on specific behavioral changes with frequent counseling and monitoring demonstrated improvement in self-efficacy. Two interventions that used psychosocial counseling and patient empowerment methods showed improvement in anxiety and depression. Most self-management interventions did not measure health literacy or patient activation as an outcome. Successful interventions were multicomponent and comprehensive in addressing self-management. There is a need to evaluate the impact of comprehensive self-management interventions that address and measure both health literacy and patient activation on health outcomes for COPD patients.

1. Introduction

Chronic Obstructive Pulmonary Disease (COPD) is a common, preventable, and treatable disease that is characterized by persistent respiratory symptoms and airflow limitation [1]. The treatment and management of COPD is a significant challenge for health systems worldwide [2]. People suffering from COPD often have worsening symptoms, including breathlessness, which requires self-management skills and knowledge. Self-management programs have been demonstrated to slow down the worsening symptoms, prevent exacerbations, and improve quality of life [3]. Self-management behaviors are the practices that patients initiate in the interest of controlling their own disease and maintaining good health and well-being [4]. For COPD, they primarily involve early self-recognition and early self-initiation of treatment for exacerbation, compliance with medication (including immunization), coping with breathlessness, quitting smoking, regular physical exercise, and eating a healthy diet [5]. Systematic reviews suggest that COPD self-management interventions (SMIs) improve health-related quality of life and reduced emergency department visits [6,7,8].
Health literacy (HL) and patient activation (PA) play key roles in self-management interventions. HL helps patients to develop a “skillset” to better manage their health, while PA develops a “mindset” that helps them “to change the lifestyle behavior” [9]. Interventions aimed at using both HL and PA can greatly benefit COPD patients [9]. Health literacy is defined as “the degree to which individuals can obtain, process, and understand the basic health information and services they need to make appropriate health decisions” [8,10] and, “patient activation” refers to the “knowledge, skills and confidence of a person in managing their own health and care” [11].
Addressing health literacy in self-management interventions has been shown to improve individual decisions and actions [12,13] in the area of smoking, nutrition, alcohol, physical activity, and weight control among people with chronic diseases [14]. Similarly, emerging research shows that patient activation improves patient engagement in self-care practices [15] and healthy lifestyle behavior-change programs [16,17]. This review was undertaken to examine health literacy and patient activation in COPD self-management interventions. This systematic review aimed to provide a broad, overarching synthesis of the existing evidence to inform policy, research, and practice in regard to the position of HL and PA in self-management interventions for COPD.

Research Question

Have COPD self-management interventions included health literacy and patient activation components, and have they measured improvements in health literacy and patient activation?
What are the effects of the intervention on health-related quality of life, self-efficacy, depression, and anxiety among people with COPD in self-management interventions (SMIs)?

2. Methods

The methodology was guided by the Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) [18].

2.1. Search Strategy

Four well-known electronic databases, Medline, EMBASE, PsycINFO, and Google Scholar, were searched to find eligible RCTs published between 1 January 2008 and 9 December 2019. Combinations of Medical Subject Headings (MeSH) terms, using “OR” and “AND”, were used to operate the electronic databases. To be selected, papers had to have self-management and either health literacy or patient activation search terms, as outlined in the Box 1 below.
Box 1. List of search terms used in conducting systematic review.
Self-management: The search terms included any of the following: “Self-management”, “Self-care”, “Self-treat”, “Personalised”, “Self-management Intervention”, “Supporting”, “Engaging” “Pulmonary disease”, “Chronic Obstructive Pulmonary Disease”, and “COPD”.
AND
EITHER
Health literacy: The search terms included any of the following: “Health Literacy”, “Functional health literacy”, “Interactive health literacy”, “Knowledge on health”, “Reading and writing”, “Literacy level”, “Comprehensive health knowledge”, “health information” and “health promotion”, “Chronic Obstructive Pulmonary Disease”, and “COPD”.
OR
Patient activation: The search terms included any of the following: “Patient activation”, “Patient Activation Measure”, “Personalized support”, “Motivation”, Knowledge”, “Skills”, “Confidence”, “Empowerment”, “Chronic Obstructive Pulmonary Disease”, and “COPD”.
The definition of COPD self-management put forward by Effing et al. [19] was used in this review. COPD self-management intervention is defined as being “structured but personalized and often multi-component, with goals of motivating, engaging and supporting the patients to positively adapt their health behavior(s) and develop skills to manage their disease better”.

2.2. Inclusion Criteria

Papers should be RCTs or comparative studies in the English language, available in full text, and aimed at the self-management of COPD. Participants had to be diagnosed with COPD. The intervention had to include elements which addressed either HL or PA. Primary outcome measures had to include quality of life (QOL), anxiety and depression, self-efficacy, or the measurement of health literacy and patient activation.

2.3. Exclusion Criteria

Conferences abstracts, posters, studies with an intervention period of less than six months, published protocols, studies with patients with cancer as co-morbidity, telehealth interventions, drug trials, and studies reported in other than English language were excluded from this study.

2.4. Data Extraction

Initially, one author (U.N.Y.) screened all titles and excluded articles that were irrelevant under the supervision of MFH. After that, five authors (U.N.Y., M.F.H., H.H., J.L. and K.P.B.) used a standardized form based on eligibility criteria to independently review full-text articles in line with the Preferred Reporting Items for Systematic reviews. Finally, MFH separately examined the full-text articles meeting eligibility and exclusion criteria. There were few discrepancies between U.N.Y. and M.F.H. in the excluded data that were resolved in consensus discussion between the two reviewers. A vote of the majority was used to address disagreements during the review of full texts.

3. Results

Initially, 481 potentially relevant articles were identified. Twenty-seven studies met the inclusion criteria. Our screening process is depicted in Figure 1.
Figure 1. Flow diagram of screening process.

3.1. Health Literacy and Patient-Activation Activities

3.1.1. Health Literacy

All twenty-seven studies included in our review had interventions that address health literacy. This was provided through educational materials (covered information on COPD, self-management skills and COPD medications, breathing techniques, maintaining healthy lifestyle, managing stress and anxiety, inhalation instructions, etc.) and improving clinical communication between health providers and patients. Three [20,21,22] studies specifically measured health literacy in the form of COPD knowledge and self-management skills and behavior. Of these three studies, two [20,22] showed improvements in disease knowledge, and one study [21] reported a significant change in health-related behaviors.

3.1.2. Patient Activation

Eighteen studies [20,22,23,24,25,26,27,28,29,30,31,32,33,34,35,36,37,38] focused on building self-efficacy, but none on building the overall confidence necessary to activate patients to engage in self-management of behaviors. None of the studies in this review included patient activation and measurement.

3.2. Outcomes of Self-Management Intervention

3.2.1. Quality of Life

Health-related quality of life was assessed by twenty-five studies [4,7,20,21,22,23,24,25,26,27,28,29,30,31,32,34,35,36,37,38,39,40,41,42,43]. Eleven studies [7,20,22,23,24,25,26,29,31,37,38] reported a significantly higher quality of life in the intervention groups compared to the groups with usual treatment. Of these eleven studies that demonstrated improvement in quality of life, ten studies [20,22,23,24,25,26,29,31,37,38] included activities targeted to HL and PA, while one [7] study used HL but did not report on PA. All eleven studies involved were found to be delivering multicomponent self-management interventions (SMIs) programs, whereby five [20,22,23,31,37] were delivered by multidisciplinary health teams, five by respiratory nurses [7,25,26,29,38], and one [24] by lay tutors. The duration of the interventions varied from six months to twenty-four months. In these studies, health-related quality of life was assessed by using a variety of instruments, including EuroQol-5 Dimension (EQ-5D-3L), SF-36 scale, St.-George’s Respiratory Questionnaire (SGRQ-C), COPD Assessment Test (CAT), Clinical COPD Questionnaire (CCQ), and Short Form Chronic Respiratory Disease Questioner (CRQ-SF).

3.2.2. Self-Efficacy

The effects on self-efficacy were measured in fifteen studies [20,22,23,25,27,29,30,32,33,34,35,38,39,40,41]. Six studies [20,24,27,33,37,44] showed significant improvement in self-efficacy. These involved motivational counselling to encourage participants to set short-term behavioral goals required for self-management of COPD. The interventions were often delivered by health professionals, mainly nurses, physiotherapists, and primary care providers; the exception being the two [24,33] studies that delivered the interventions through trained lay tutors. However, none of these studies provided information on the frequency of the motivational sessions.

3.2.3. Anxiety and Depression

Eleven studies [4,20,24,25,26,31,32,34,36,39,42] measured anxiety and depression as an outcome. Of these, nine [4,20,25,26,32,34,36,39,42] did not show a change in anxiety and depression. Only two interventions [24,31] showed improvement in anxiety and depression scores over the period of the intervention. Of these two interventions, one was delivered by trained lay tutors [24] and another [31] by a primary care team. These studies sought to develop patient empowerment and provided psychosocial counselling.

4. Discussion

Despite a wealth of evidence showing beneficial outcomes of COPD self-management programs, substantial gaps remained in the evidence base. To the best of our knowledge, this is the first review to analyze the inclusion of health literacy and patient activation elements in COPD self-management interventions. All the included studies (Table 1) evaluated interventions that aimed to address health literacy to some degree (although HL was not necessarily comprehensively addressed). Three studies [20,21,22] measured disease knowledge as an outcome. None of the authors measured participants’ abilities to read, listen, communicate, and understand the provided information, including health promotion, disease prevention, and the navigation of available services. Although many studies addressed and measured self-efficacy, none specifically developed activities designed to activate patients or measured patient activation as an outcome measure. This suggests the need for their role in self-management for long-term conditions, such as Chronic Obstructive Pulmonary Disease to be further explored and evaluated.
Table 1. Included studies.
In more than a third of the included studies, self-management interventions improved the quality of life of COPD patients. More importantly, QOL improvements were seen majorly in those interventions that addressed both HL and PA (10 out of 11 interventions that improved QOL) to some degree and offered a comprehensive package of self-management components (individual tailored education sessions on disease and self-management, goal-setting and coping strategies, social support, physical activity, improving confidence, etc.). In line with our findings, other reviews have suggested that multicomponent self-management interventions (SMIs) are significantly effective in improving HRQOL [3,6,45]. However, our finding shows marked variation in the measures of quality of life. This heterogeneity prevented meaningful meta-analysis. Ferrone et al. [46] have suggested the use of a single instrument in future research (i.e., using the Clinical COPD Questionnaire (CCQ)—a 10-item, health-related quality-of-life questionnaire). As reported in another review, we found most studies used generic HRQOL measures (i.e., EQ5D and SF scales), and these reported insignificant differences in quality of life [46]. Overall, our finding shows that multicomponent self-management programs having both HL and PA are more likely to yield promising improvements in QOL.
Of fifteen studies that addressed self-efficacy, only six showed a positive effect on self-efficacy for behavior changes, such as quitting smoking, performing a daily exercise, or taking medicine according to guidelines. Available literature [9] suggests that increased patient engagements with proper confidence-building may help the patients to maintain health behaviors, and this in turn can improve health outcome. The use of interventions which develop patient activation rather than those which focus on specific behaviors (self-efficacy) may be more useful. This may include tailoring approaches to care based on the levels of patient activation. For example, motivational coaching, along with problem-solving skills and social support, targeted for individuals with low activation levels may help them to understand, carry out, and maintain their role in self-managing their conditions over time [9,47]. We found only two studies [24,31] have showed the improvement in depression and anxiety scores. None of the included studies in our review mentioned any defined actions to address depression and anxiety in the SMI. Therefore, this finding of the review should be interpreted with caution.
Self-management programs need to be guided by learning and behavior-change theories that can be tailored to a population’s needs, taking into account literacy, confidence level, ethnic, cultural, and cognitive factors [48]. Interventions aimed at delivering health literacy assume constructing skills for understanding the conditions and relevant information can empower patients, while those aimed at patient activation assume encouragement/motivation standalone can bring positive outcomes [49]. Three of the included studies measured the effect of health literacy, while none measured the effect of patient activation on self-management skills among patients with COPD. Emerging scientific evidence suggests that addressing both health literacy and patient activation components in one intervention might result in better adherence to self-management behaviors in COPD patients [50,51,52]. Motivational and cognitive–behavioral elements and health coaching have been found to be powerful strategies in helping the patient to become a “successful self-manager” [37,53,54]. Thus, the clear understanding between HL and PA, as well as their independent roles and benefits, could help in achieving effective self-management of COPD.
An inherent limitation of this review was the lack of meta-analysis because the intervention and outcome measurements were too heterogeneous. Although multiple databases were searched, using MeSH terms, the search may not have yielded all published relevant studies, given the variation in terminology for “self-management”, “health literacy”, and “patient activation”.

5. Conclusions

This review provided insights into how frequently SMI includes features that address health literacy and patient activation. HL interventions were not comprehensive (largely confided to health education) and PA interventions with improving self-efficacy. This suggests the need to further evaluate the impact of comprehensive self-management interventions, which include elements which address both health literacy and patient activation on health outcomes for COPD patients.

Author Contributions

Conceptualization of the study, U.N.Y.; data selection and extraction, U.N.Y.; analysis, U.N.Y., J.L., and M.F.H.; writing—original draft preparation, U.N.Y., M.F.H., J.L., H.H. and K.P.B.; review and editing, M.F.H. and J.L.; supervision, M.F.H., J.L., H.H. and K.P.B. All authors have read and agreed to the published version of the manuscript.

Funding

This research received no external funding.

Acknowledgments

U.N.Y. is recipient of the International Postgraduate Scholarship (UNSW) and CPHCE (Top-Up Scholarship) for his doctor degree, with which the present review was completed.

Conflicts of Interest

The authors declare no conflict of interest.

Abbreviations

CCMPComprehensive Care Management Program
COPDChronic Obstructive Pulmonary Diseases
DMPDisease Management Program
CControl
FFemales
HRQOLHealth-related quality of life
HLHealth Literacy
IDMIntegrated disease management
IIntervention
MMales
PSMPPartnership based Self-management Training
PAPatient Activation
QOLQuality of life
SSMSupported Self-Management
SMISelf-management Intervention

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