Increasing patient activation through diabetes self-management education: Outcomes of DESMOND in regional Western Australia

Journal Pre-proof Increasing patient activation through diabetes self-management education: outcomes of DESMOND in regional Western Australia Venus M Miller, Melanie J Davies, Christopher Etherton-Beer, Sophie McGough, Deborah Schofield, Jessica F Jensen, Natasha Watson

PII:

S0738-3991(19)30449-5

DOI:

https://doi.org/10.1016/j.pec.2019.10.013

Reference:

PEC 6429

To appear in:

Patient Education and Counseling

Received Date:

10 June 2019

Revised Date:

15 October 2019

Accepted Date:

16 October 2019

Please cite this article as: Miller VM, Davies MJ, Etherton-Beer C, McGough S, Schofield D, Jensen JF, Watson N, Increasing patient activation through diabetes self-management education: outcomes of DESMOND in regional Western Australia, Patient Education and Counseling (2019), doi: https://doi.org/10.1016/j.pec.2019.10.013

This is a PDF file of an article that has undergone enhancements after acceptance, such as the addition of a cover page and metadata, and formatting for readability, but it is not yet the definitive version of record. This version will undergo additional copyediting, typesetting and review before it is published in its final form, but we are providing this version to give early visibility of the article. Please note that, during the production process, errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain. © 2019 Published by Elsevier.

Title Increasing patient activation through diabetes self-management education: outcomes of DESMOND in regional Western Australia

Author names and affiliations Venus M Millera,*, Melanie J Daviesc, Christopher Etherton-Beerb, Sophie McGougha, Deborah Schofielda, Jessica F Jensena, Natasha Watsona a

Diabetes WA, Subiaco, Western Australia, Australia School of Medicine, University of Western Australia, Crawley, Western Australia, Australia c Diabetes Research Centre, University of Leicester, Leicester, UK

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b

*Corresponding author at Diabetes WA, Level 3/322 Hay Street, Subiaco, WA

Ph:+61 8 94366234

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E-mail: [email protected]

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6008, Australia.

Abstract

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Highlights  DESMOND significantly increased patient activation in a real-world setting  Most participants attending DESMOND were self-referred and highly activated  A high degree of activation is often required for a person to participate in DSME  There is need for the implementation of strategies to target less activated people

Objective: To evaluate the effects of the Diabetes Education and Self-Management

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for Ongoing and Newly Diagnosed (DESMOND) program on patient activation in adults living with type 2 diabetes (T2D). Methods: 233 individuals attended a DESMOND program in 26 locations across regional Western Australia. Individuals completed the Patient Activation Measure (PAM) prior to and immediately after DESMOND participation. Results: Patient Activation significantly increased by 9.7 points from pre to post DESMOND intervention (p<0.001, z=-7.94). Of all participants who exhibited an increase in patient activation, 87% (n=142) experienced a clinically significant (>5

point) increase. Post-DESMOND participation, an 86% reduction (from 6% - 0.9%) in the proportion of participants scoring in the lowest PAM level (Level 1) was observed (p<0.01). Conclusion: DESMOND, a structured diabetes self-management education (DSME) program aimed at strengthening the role of people living with type 2 diabetes in selfmanaging their healthcare, significantly increased patient activation in a real-world setting. Practice implications: In line with international diabetes guidelines it is recommended that people living with T2D, particularly those with lower levels of activation, attend

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an evidence based DSME such as DESMOND to increase their capacity to effectively self-manage their condition.

Keywords

Type 2 diabetes mellitus; Diabetes education; Patient self-management; Patient

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activation

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1. Introduction

Type 2 Diabetes mellitus is an increasing health problem worldwide that is largely

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driven by the increase in prevalence of obesity and sedentary lifestyles[1]. Globally, the total number of people diagnosed with type 2 diabetes (T2D) has tripled in the last 25 years from 1.5% to 4.7% and is projected to double to 366 million by 2030 [1].

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This substantial increase in the number of people with T2D will result in an increase in the use of medical services for diabetes treatment, thereby having significant economic implications for the health care system. T2D is a complex chronic condition that requires ongoing care, including multifactorial risk reduction strategies beyond optimal blood glucose, therefore a

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high degree of self-management is required in order to improve outcomes and prevent diabetes related complications. Increasing patients’ active involvement in the management of their diabetes through diabetes self-management education (DSME) has previously been shown to improve a variety of health outcomes [2-5] thereby reducing the risk of both short and long-term diabetes related complications [6, 7]. However, there is substantial variability in the effectiveness of diabetes selfmanagement education programs worldwide [8]. Recently, the American Diabetes Association and the European Association for the Study of Diabetes (ADA/EASD)

have identified that DSME programs which have a structured curriculum, a sound theoretical basis and trained educators appear to achieve the best outcomes [5]. The structured “Diabetes Education and Self-Management for Ongoing and Newly Diagnosed” (DESMOND) program is a group education program with a structured curriculum and underpinned by multiple learning theories. It has previously been shown to improve biomedical, psychosocial and lifestyle outcomes [7, 9, 10]. A large-scale (n=824) cluster randomized controlled trial of DESMOND demonstrated that at one year follow up DESMOND participants had (i) greater understanding of their diabetes, (ii) greater weight loss, (iii) higher smoking cessation

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rates, (iv) less depression, and (v) better cardiovascular risk profiles, with some of these changes sustained at three year follow up with subsequent studies in those

with established T2DM showing improvement in HbA1c [9, 11]. The philosophy of DESMOND is based on patient empowerment [9] and its theory driven approach

seeks to prompt patients to consider their own beliefs and circumstances, personal

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risk factors and to participate in SMART action planning processes aimed to build

self-efficacy around a behavior change to achieve. DESMOND’s person centered

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approach means it focuses on activation, self-efficacy and engagement rather than the traditional compliance orientated medical model. DESMOND recognizes that

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people have an active role in managing their health by making shared decisions that affect their health and health care costs. Currently DESMOND is the only evidencebased self-management program available for people with T2D in Australia.

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Patient activation is a measure of the extent to which a patient is actively involved in their health care. It has been defined as a behavioral concept that describes the knowledge, skills and confidence a person has in managing their own health and health care [12] and has been extensively assessed by the patient activation measure (PAM) developed by Hibbard and colleagues [12]. The PAM is a

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scientifically robust measure validated in a range of populations [13]. Research to date shows the PAM to have strong psychometric properties, including content, construct, and criterion validity [12]. The PAM provides a consistent and accurate way of measuring changes in activation over time. Improvements in patient activation scores have been linked to; (i) improved general health (e.g. exercise, diet) and disease-specific self-management behaviors (e.g. adherence to treatment, condition monitoring and regular medical appointment attendance) (ii) clinical outcomes and (iii) the cost of delivering care [14-16]. Several studies have reported that patients

with higher activation scores are more likely to have cardio-metabolic profiles within the normal range, compared to patients with lower patient activation scores [14, 1618]. Although there is extensive evidence for the relationship between patient activation and health outcomes, less is known about how an individual’s activation levels can be increased [19]. Some studies have found that person-centered interventions focusing on skills mastery, building confidence and problem-solving skills, were most effective in increasing patient activation [13, 20]. Therefore, the aim of this study was to evaluate the effects of the diabetes self-management education

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program DESMOND on patient activation in adults living with type 2 diabetes. It was hypothesized that DESMOND, with its behavioral underpinnings and person-

centered philosophy of care, would increase activation levels among people living with diabetes.

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2. Methods

The DESMOND program has been described in detail elsewhere [10] and it’s

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efficacy has been demonstrated previously [9, 21, 22] and as this data was collected for routine evaluation purposes, a control group was not possible. An uncontrolled

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pre-post study design was implemented.

Exemption from full ethical review was granted by the University of Western Australia Human Research Ethics Committee (RA/4/20/5264) on grounds that the

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data was pre-existing for quality assurance purposes, collected with consent from individual participants, and de-identified prior to analysis.

2.1. Participants

The evaluated sample comprised of 341 individuals diagnosed with T2D who

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attended the DESMOND program across regional Western Australia between February and June of 2018. Participants were eligible to attend the DESMOND program if they were aged ≥18 years, diagnosed with T2D, and were proficient in English. Participants were excluded from the analysis if they (i) did not complete the Patient Activation measure (PAM) prior to participating in DESMOND (preDESMOND) and/or immediately after program cessation (post-DESMOND), or (ii) if they did not complete at least 8 items on the PAM scale.

2.2. Intervention - DESMOND program The DESMOND program is a group education program whose curriculum has previously been detailed [10]. DESMOND is underpinned by the following learning theories: Leventhal’s’ common sense theory [23], dual process theory, and social learning theory [24], which align with a person-centered philosophy of care [9]. Attendees received six hours of group education in a community setting, over one full day by trained DESMOND Educators. Group sizes were limited to a maximum of 10 participants per session and all sessions were delivered in the same format.

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DESMOND Educators consisted of multidisciplinary health professionals who received formal training to deliver the program and were supported by a quality

assurance component of internal and external assessment to ensure consistent delivery.

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2.3. Measures

Self-reported demographic characteristics of the participants included age, gender,

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country of birth, primary language spoken, length of time since diabetes diagnosis (months), and referral pathway to DESMOND. Socioeconomic status (SES) was

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estimated using Australian Bureau of Statistics data. Postcodes were coded according to the “Index of Relative Social Advantage and Disadvantage” (IRSAD), a compound measure based on selected census variables, which include income,

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educational attainment and employment status [25]. The IRSAD scores for each postcode were subsequently grouped into quintiles for analysis, where the lowest quintile reflected the “most disadvantaged and highest quintile reflected the “most advantaged”.

The outcome measure used for this study was the Patient Activation Measure

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(PAM). Patient activation was measured prior to and immediately after DESMOND participation. PAM consists of 10-items that form an interval level, uni-dimensional, Guttman-like scale with strong psychometric properties [14]. PAM has been found to be reliable and valid across different languages, cultures, demographic groups, and health statuses [13]. The PAM uses a 5-point Likert scale ranging from 1 (strongly disagree) to 4 (strongly agree) and 5 represents “not applicable”. It produces a total score ranging from 0 to 100, where higher scores indicate greater patient activation [13].

In addition to scores, four levels of activation have been identified, reflecting a developmental progression from passive receipt of care toward greater activation [14]. Level 1 (indicated by a score of 0.0-47.0) suggests that a person may not yet understand that the patient’s role is important; level 2 (47.1-55.1) indicates that a person lacks the confidence and knowledge to take action; level 3 (55.2-72.4) indicates that a person is beginning to engage in recommended health behaviors; and Level 4 (72.5-100) indicates that a person is proactive about health and engages in many recommended health behaviors [26].

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2.4. Statistical analysis Assessed outcomes were non-normally distributed therefore all continuous variables were reported as medians and interquartile ranges, and categorical variables were represented as counts and percentages. A nonparametric sign test was utilized to assess univariate differences in patient activation pre-to post DESMOND

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participation. A Chi-square test was used to determine if the proportion of

participants at the highest and lowest PAM levels significantly changed pre to post-

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DESMOND.

A Mantel-Haenszel test of trend was used to explore associations between

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pre-DESMOND PAM levels and time since diagnosis. Pre-DESMOND PAM levels were categorized into the four aforementioned levels of activation [26] and time since diagnosis was categorized into four groups; (i) attended DESMOND within 3 months

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of diagnosis, (ii) attended DESMOND more than 3 months but less than 6 months after diagnosis, (iii) attended DESMOND more than 6 months but less than 12 months after diagnosis and (iv) attended DESMOND more than 12 months after diagnosis. Statistical significance was set at p<0.01. Statistical analysis was carried

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out using SPSS V25 (Chicago, USA).

3. Results

3.1. Description of sample From February 2018 to June 2018, pre and/or post evaluation data was collected for 341 individuals who attended the DESMOND program in 26 locations across regional Western Australia. Of the 341 DESMOND participants, 108 (31.7%) were ineligible to be included in the analysis due to missing pre or post data. The final sample included 233 (68.3%) DESMOND participants.

Participant characteristics are shown in Table 1. Participants had a median age of 66 years (n=226, IQR: 58-71years); 35.6% (n=83) were male, 63.1% (n=147) were female. Of the total participants, the majority (n=155, 67.5%) reported attending DESMOND more than 12 months after being diagnosed with type 2 diabetes. Almost half of the study participants were in the middle SES quintile (n=122, 48.1%). The majority of participants were self-referred (n=87, 39.7%), of which, 75.9% (n=68) scored in the top two patient activation levels (level 3 and 4) and had a median PAM score of 65.8 points. 3.2. Effect of DESMOND on PAM scores

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The median PAM score pre-DESMOND was 65.8 (IQR: 52.9-75.5) and post-

DESMOND, 75.5 (IQR: 65.8-83.7). Overall, patient activation significantly increased by 9.7 points from pre to post intervention (p<0.001, z=-7.936), demonstrating a large effect (PSdep=0.78).

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When assessing changes in patient activation scores post-DESMOND, an

improvement in patient activation was noted for 70% (n=163) of all participants, the

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majority of which (87%, n=142) experienced a clinically significant increase, defined as a ≥ 5-point increase in total activation score [12, 27]. 9.9% (n=23) of participants

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did not experience any change in their PAM scores following DESMOND participation, and 20.2% (n=47) experienced a decrease in patient activation. However, overall only 12.4% of participants registered a clinically meaningful

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decrease in patient activation post-DESMOND. There was a 1.95-fold increase in the proportion of people scoring in the highest level of activation (Level 4) pre to post-DESMOND (30.5% vs 59.6%, p<0.001) (Table 2). Furthermore, an 86% reduction in the proportion of participants scoring in the lowest PAM level (Level 1) was observed following DESMOND

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participation (p<0.01).

3.3. PAM levels in relation to length of diabetes diagnosis The Mantel-Haenszel test of trend showed no linear association between preDESMOND PAM levels and time since type 2 diabetes diagnosis (χ2(1) =0.223, p=0.637, r=0.001).

4. Discussion and Conclusion

4.1. Discussion Findings from this study show that the structured DSME program DESMOND effectively improves patient activation in individuals with T2D in a routine, real-world environment. Overall, more than half of all participants exhibited a clinically significant improvement of at least 5 points in PAM score [12, 27]. Furthermore, the proportion of people scoring in the highest level of activation (PAM level 4, 72.5-100) almost doubled from pre to post-DESMOND. Hibbard et al 2007 defines level 4 activation (72.5-100) as participants being proactive about their health and engaging in many recommended health behaviors [26]. Therefore, our current findings suggest

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that DESMOND participants are more likely to take action towards effective diabetes self-management following program participation. These are important findings as evidence shows that an increase in activation is related to positive changes in a

variety of diabetes self-care behaviors, resulting in improvements in health outcomes [26]. Several studies have reported that patients with higher activation scores are

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more likely to have biometrics such as; body mass index, hemoglobin A1c, blood pressure and cholesterol in the normal range, compared to patients with lower

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patient activation scores [14-16, 28]. Additionally, increasing evidence shows that patients who are more activated, make more effective use of health care resources

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compared to less activated patients [13, 29], resulting in (i) the prevention of shortterm diabetes related complications, (ii) decreased risk of long-term diabetes complications and (iii) a decreased diabetes-related economic burden to the

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healthcare system [3, 6, 30].

Whilst an increase in activation from pre to post-DESMOND was observed for most participants, there was a small proportion of highly activated participants at preDESMOND whose level of activation decreased following DESMOND participation. This could be attributed to multiple factors, e.g. a lack of understanding of (i) the

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complexity of TD2 prior to attending the program and/or (ii) degree of involvement required to effectively self-manage their condition. Therefore, while the “one size fits all’ approach to self-management cannot be applied, DESMOND has shown to have positive effects on the majority of this study’s population. This could be partially attributed to DESMOND’s person centered approach and philosophy of patient empowerment [10]. Previous studies have shown that following a behavioral intervention, patients in the lowest activation levels experience the greatest increases in PAM post-

intervention, this has been partly attributed to a ceiling effect [13]. In accordance with this, our study found a significant reduction (86%) in the proportion of people in the lowest activation level (level 1) from pre to post-DESMOND. Of these participants, all scored in the two highest levels of activation post-DESMOND (level 3 and 4). However, it is important to recognize that pre-DESMOND, our study sample comprised primarily of highly activated individuals and only a small proportion of participants scored in the lowest level of activation (6%, level 1). This small proportion of low activation participants in a DSME program is somewhat anticipated, since individuals who are less activated are less likely to seek out health services

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[29, 30], in order to develop better management strategies and pursue improved health outcomes. Studies across a range of chronic conditions, showed that less

activated patients were less likely to (i) obtain regular source of care, (ii) adhere to treatment, (iii) perform regular self-monitoring at home; and are more delayed in

obtaining health care compared to more activated patients [14-16, 18, 26, 28, 31,

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32]. In this study, it was observed that a high proportion of participants were selfreferred to DESMOND, of which 75.9% were highly activated prior to attending

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DESMOND. This further supports the notion that a high degree of activation is often required for a person to take action and participate in DSME. This highlights the

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need for the identification, development and implementation of; (i) marketing strategies that identify barriers to the participation of individuals with lower levels of activation and (ii) primary care engagement strategies to target less activated

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patients. Despite increasing evidence of the efficacy of patient activation for selfmanagement, engagement of health care professionals in relevant activities remains a challenge [30, 33]. Previously, health professionals have been found to question the effectiveness of self-management approaches and as a result have been disinclined to refer patients to self-management programs [34]. Therefore, it is

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important to improve the understanding of the benefits of patient activation for selfmanagement among health professionals, in order to ensure that those people who would benefit most from improved self-management skills receive the necessary support from their health care providers [31, 35]. Recently, the American Diabetes Association and the European Association for the Study of Diabetes have included diabetes self-management education and support in the updated position statement on the management of type 2 diabetes in adults [36], further highlighting acceptance of the importance of DSME in T2D management.

It was observed that the majority of the study sample was comprised of people who had been diagnosed with diabetes for at least 12 months prior to attending DESMOND. Further, a large proportion scored in the two highest levels of activation prior to DESMOND participation. It is plausible that those with a longer time since diagnosis may have attended individual DSME with a diabetes educator or dietician and therefore had time to develop a greater knowledge and skill level for the self-management of their diabetes, resulting in a higher degree of patient activation. A potential relationship between participants pre-intervention PAM level and time since diagnosis was explored and no relationship was detected. This

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indicates that in this population, the length of time since diagnosis prior to attending DESMOND was not associated with their presenting activation level, additionally

there may be various other factors influencing pre-intervention PAM levels that we were unable to explore due to data collection being limited as part of routine

evaluation. It is also important to note that no data were collected on other possible

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forms of DSME participants may have attended prior to DESMOND participation,

and therefore is a potential source of confounding that could not be adjusted for in

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the analysis.

A strength of this study is the observational design, demonstrating real-world

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improvements of clinical significance, which support international findings. Concurrently, the lack of a control group and a follow up period in the study design may be considered a limitation. However, given that the efficacy of DESMOND has

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been established previously in a large-scale randomized-control trial [9], and the translation of PAM scores to health outcomes are well established [13, 14, 16-19, 30, 37, 38], this was not considered a major limitation. The purpose of this study was to examine the effectiveness of DESMOND in increasing patient activation in routine, real-world conditions. Whilst the positive effects of DESMOND on patient activation

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were observed pre to post program, it is not possible to ascertain whether these effects are sustained over time. Results from a randomized control trial showed that some of the positive effects elicited by DESMOND on biomedical and lifestyle outcomes at 12 months post intervention were not sustained at three years post intervention [9]. The authors concluded that regular attendance at DSME may be required to sustain the effects observed, however the optimum interval and contact time needs further evaluation. It is important to identify if this trend is also apparent for patient activation, as it would reflect Khunti et al. 2012 findings and highlight the

need for establishing integrated diabetes care pathways to ensure continuity of care. Similarly, there are limits to the generalizability of the results from this study. The study sample comprised of primarily older, highly activated (levels 3 and 4) participants that had been living with diabetes for at least 12 months prior to intervention. Therefore, this sample is not entirely representative of all populations with T2D. It is plausible that with a wider spread of pre-intervention patient activation levels a greater positive effect of DESMOND may be observed, as evidence shows that patients at the lowest activation levels pre-intervention achieve the greatest increase in PAM scores post-intervention [13]. This highlights the need for the

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identification, development and implementation of primary care engagement strategies to target less activated patients.

4.2. Conclusion

We have shown that DESMOND, which is aimed at strengthening the role of people

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living with T2D in self-managing their healthcare, significantly increased patient

activation in routine, real-world conditions. These findings further demonstrate the

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efficacy of DESMOND and support the importance of diabetes self-management

4.3. Practice Implications

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education as an integral aspect of diabetes care.

To our knowledge the effectiveness of DSME programs, specifically DESMOND in

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increasing patient activation had not been investigated in a routine, real-world setting. The results of this study address this gap in the literature. It is recommended that people living with T2D, particularly those with lower levels of activation, attend DESMOND to increase their capacity to effectively self-manage their condition.

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Participants

We confirm all participants/personal identifiers have been removed or disguised so the participant/person(s) described are not identifiable and cannot be identified through the details of the story.

Funding This work was supported by the Western Australian Department of Health.

Conflicts of interest The authors whose names are listed immediately below report the following details of involvement in an organization with a non-financial interest in the subject matter discussed in this manuscript. Venus M Miller, Sophie McGough, Deborah Schofield, Jessica F Jensen and Natasha Watson The listed authors work for Diabetes WA Ltd, a non-Government, not for profit charity which holds an exclusive license to administer DESMOND Programs within the

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Australasia Region.

Acknowledgements

The authors wish to thank Professor Timothy Skinner for his ongoing support and proofreading this article. In addition, we would like to acknowledge Dr Denise

Demmer for her helpful comments and recommendations for this article. We also

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wish to extend our gratitude to all DESMOND participants who consented for their

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data to be utilised for this study.

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room utilization in patients with chronic illnesses: a systematic review, Patient Education and Counseling 98(5) (2015) 545-552.

Table 1 Participant characteristics Pre-DESMOND Number (%) or Median (IQR)* Age (years)

66 (58-71)

Gender n (%) Male

83 (35.9%)

Female

147 (63.6%)

Other

1 (0.4%)

Country of Birth n (%) Australia

161 (70.3%)

Other

68 (29.7%)

Primary language spoken n (%) 221 (96.5%)

Other

8 (3.5%)

Socioeconomic status n (%)

ro of

English

9 (4.2%)

Second most disadvantaged

61 (28.8%)

Middle

102 (48.1%)

Second most advantaged

23 (10.8%)

Most advantaged

17 (8%)

3 months or less

lP

Length of time since diagnosis n (%)

re

-p

Most disadvantaged

44 (19.1%) 11 (4.8%)

6 months or more but less than 12

20 (8.7%)

12 months or more

155 (67.4%)

ur na

More than 3 months but less than 6

Referral pathways n (%)

33 (15.1%)

Hospital diabetes clinic

7 (3.2%)

Practice nurse

9 (4.1%)

Allied health professional

38 (17.4%)

Jo

General practitioner

Pharmacist

2 (0.9%)

Person who previously attended DESMOND

12 (5.5%)

Self-referred

87 (39.7%)

Other

31 (14.2%)

ARIA class n (%) Major cities

28 (13.1%)

Inner regional

70 (32.7%)

Outer regional

74 (34.6%)

Remote

22 (10.3%)

Very remote

20 (9.3%)

PAM score

65.8 (52.9-75.5)

*Missing data has been excluded.

Table 2 Contingency table depicting participants movement across PAM levels from pre to post-DESMOND Post-DESMOND PAM Level

1

0 (0.0%)

2 (0.9%)

11 (4.7%)

1 (0.4%)

14 (6%)

2

0 (0.0%)

8 (3.4%)

20 (8.6%)

20 (8.6%)

48 (20.6%)

3

0 (0.0%)

5 (2.1%)

40 (17.2%)

55 (23.6%)

100 (42.9%)

4

2 (0.9%)

1 (0.4%)

5 (2.1%)

63 (27%)

71 (30.5%)

Total

2 (0.9%)

16 (6.9%)

76 (32.6%)

139 (59.6%) 233 (100%)

lP ur na Jo

4

Total

ro of

3

re

PAM Level

2

-p

Pre-DESMOND

1