A systematic review and meta-analysis of patient activation in people living with chronic conditions

ObjectiveThe objectives of this review are to (1) describe the state of the science of patient activation interventions for the self-management of chronic conditions; (2) identify effective intervention elements for improving patient activation; and (3) compare intervention effectiveness across chronic conditions.MethodsThis systematic review followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses statement (PRISMA). PubMed, CINAHL, and Web of Science databases were searched.ResultsThirty-two articles published between 2005 and 2019 were identified with intervention elements of self-management, disease management, and education. Meta-analysis of a subset of seven randomized controlled trials (n = 7) that used the 13-item version of the Patient Activation Measure with data collection points at 6 months demonstrated that patient activation did not change significantly in comparison with controls (MD = 0.25, 95 % CI = 0.02–0.47).ConclusionMost interventions reported significant improvement in patient activation and were linked to tasks such as regular exercise and monitoring glucose. However, the meta-analysis of RCTs did not confirm these findings.Practice implicationsPatient activation can be assessed and addressed uniformly across all chronic conditions to improve patient engagement in care.     

The role of patient activation in frequent attendance at primary care: A population-based study of people with chronic disease

Objective

This study explores a range of relevant socio-demographic, physical and psychological factors in a unique examination of the risk factors for frequent attendance at primary care. The impact of patient activation for self-management on health service utilisation is of particular interest.

Methods

A population-based sample of people with chronic disease from Queensland, Australia, was interviewed using computer assisted telephone surveying. Data were collected from a random sample of 1470 people with either diabetes or a cardiovascular condition.

Results

As participants became more activated they were less likely to frequently attend their main health care provider for assistance with their chronic condition. For both conditions the association was graduated and for participants with a cardiovascular condition this association remained statistically significant even after controlling for other potentially influential factors such as disease severity, length of time since diagnosis, and psychological distress.

Conclusion

Characteristics of the individual, including patient activation and psychological functioning, as well as disease factors contribute to primary care consulting patterns among people with chronic illness.

Practical implications

Efforts to improve patient activation for self-management should remain a central element of chronic care.     

The Health Education Impact Questionnaire (heiQ): an outcomes and evaluation measure for patient education and self-management interventions for people with chronic conditions

OBJECTIVE: This paper describes the development and validation of the Health Education Impact Questionnaire (heiQ). The aim was to develop a user-friendly, relevant, and psychometrically sound instrument for the comprehensive evaluation of patient education programs, which can be applied across a broad range of chronic conditions. METHODS: Item development for the heiQ was guided by a Program Logic Model, Concept Mapping, interviews with stakeholders and psychometric analyses. Construction (N=591) and confirmatory (N=598) samples were drawn from consumers of patient education programs and hospital outpatients. The properties of the heiQ were investigated using item response theory and structural equation modeling. RESULTS: Over 90 candidate items were generated, with 42 items selected for inclusion in the final scale. Eight independent dimensions were derived: Positive and Active Engagement in Life (five items, Cronbach's alpha (alpha)=0.86); Health Directed Behavior (four items, alpha=0.80); Skill and Technique Acquisition (five items, alpha=0.81); Constructive Attitudes and Approaches (five items, alpha=0.81); Self-Monitoring and Insight (seven items, alpha=0.70); Health Service Navigation (five items, alpha=0.82); Social Integration and Support (five items, alpha=0.86); and Emotional Wellbeing (six items, alpha=0.89). CONCLUSION: The heiQ has high construct validity and is a reliable measure of a broad range of patient education program benefits. PRACTICE IMPLICATIONS: The heiQ will provide valuable information to clinicians, researchers, policymakers and other stakeholders about the value of patient education programs in chronic disease management.     

Assessing the significance of health information seeking in chronic condition management

ObjectiveTo examine the relationship between health information seeking and confidence in performing self-management activities, and to assess the influence of predisposing, enabling, and perceive need factors on confidence to perform self-management activities among adults with chronic conditions.MethodsThe sample included 6724 adults from the 2007 Health Tracking Household Survey who were ≥18 years with a chronic condition. Binary logistic regression examined the relationship between health information seeking, predisposing, enabling, and perceive need factors and confidence in performing three self-management activities; prevent symptoms, tell doctor concerns, and know when to get medical care.ResultsAnalyses indicated that 63.7% of adults sought health information. Rural residents who sought health information had 50% (95% CI: 0.28–0.89) lower odds of being confident to tell doctor concerns compared to urban residents who did not seek health information.ConclusionThe relationship between health information seeking and confidence to perform self-management varies by self-management activity. Rurality, education level, having a usual source of care, and perceived health status strongly predict confidence to perform self-management activities.Practice implicationsSelf-management strategies should incorporate health information seeking behavior that will enhance confidence to perform specific self-management activities, and should incorporate predisposing, enabling, and perceive need factors.     

Change is possible: How increased patient activation is associated with favorable changes in well-being,self-management and health outcomes among people with type 2 diabetes mellitus: A prospective longitudinal study

ObjectiveTo examine the relationship between risk factors for low patient activation and change in patient activation, well-being, and health outcomes in people with type 2 diabetes mellitus (T2DM).MethodA longitudinal prospective study was conducted with measurements at baseline and 20-week follow-up among 603 people with T2DM participating in a group-based walking intervention. Patient activation and risk factors were assessed using online questionnaires. Health outcomes were assessed in participants’ general practices.ResultsNo association was found between risk factors for activation and change in patient activation. Patient activation significantly increased (t(602) = 2.53, p = 0.012) and was associated with an increase in emotional well-being (β = 0.22), exercise behavior (β = 0.17), general diet behavior (β = 0.20), and a reduction in BMI (β = ?0.28), weight (β = ?0.29), and HbA1c (β = ?0.27).ConclusionFavorable changes in patient activation, self-management, well-being, and health outcomes occurred during a walking intervention, despite highly prevalent risk factors for low activation and less engagement in self-management.Practice implicationsGroup-based walking interventions might empower people with T2DM to begin taking a larger role in their self-care and improve (mental) health outcomes. Vulnerable groups of patients (with multiple risk factors for low activation) can change and presumably need this kind of interventions to be able to change.     

The effect of self-management support program on patient activation and inner strength in patients with cardiovascular disease

ObjectiveThe aim of the present study was to evaluate the effect of a self-management program on activation and inner strength in patients with cardiovascular diseases (CVDs).MethodsThis study assigned 86 patients with CVDs to an experimental and a comparison group utilizing alternate allocation based on a quasi-experimental design. The experimental group participated in a self-management program based on a theoretical framework in three stages, i.e. orientation-recognition, reinforcing-engaging and monitoring-follow-up; whereas the comparison group received routine care. The supportive program was administered through holding five individual face-to-face sessions, providing educational booklets and performing four phone-call follow-ups during three months after discharge. The outcomes were measured using the patient activation measure (PAM) and the inner strength scale (ISS).ResultsThe between group analysis indicated a statistically-significant difference in the mean score of patient activation (P < 0.001) in the two groups. Nevertheless, there was not a statistically-insignificant difference in the mean score of inner strength between the two groups (P < 0.104).ConclusionAlthough a three-month nurse-led self-management support program was found to improve patient activation levels, it was ineffective in promoting inner strength.Practice implicationsPsychosocial dynamics should be integrated in providing self-management program by nurses. To promote patient activation, tailored consultations is recommended.     

Factors associated with patient activation in a socially deprived population: Evidence from Germany

ObjectivePatient activation has been identified as a crucial determinant of health, but little is known about its own determinants, particularly in low socioeconomic status populations. To address this research gap, we analyzed factors that might explain variation in patient activation in such a population.MethodsWe conducted a cross-sectional patient survey (n = 582) in a low socioeconomic status urban district in Germany in 2017. Using multivariate linear regressions, we examined the association between patient activation and a range of psychological, sociodemographic, and health-related factors. To assess the relative importance of these factors, we used dominance analysis.ResultsOur results suggest that age, employment status, linguistic acculturation, health status, and self-efficacy were significantly associated with patient activation. Dominance analysis indicated that self-efficacy was the most important factor explaining variation in patient activation.ConclusionsAge, employment status, linguistic acculturation, health status, and self-efficacy are important determinants of patient activation.Practice implicationsOur results can inform decision makers about approaches for more targeted and effective interventions to improve patient activation in low socioeconomic status populations. Much might be gained by investing in interventions that focus on age, employment status, linguistic acculturation, and health status. Interventions that improve self-efficacy may represent a particularly promising approach.     

From patient education to patient engagement: Implications for the field of patient education

Objective

Advances in health care require that individuals participate knowledgeably and actively in their health care to realize its full benefit. Implications of these changes for the behavior of individuals and for the practice of patient education are described.

Methods

An “engagement behavior framework” (EBF) was compiled from literature reviews and key informant interviews. To assess the focus of research and interventions on the identified engagement behaviors, the EBF was used to code scientific sessions in professional conferences relevant to patient education in the US in 2006–2007.

Results

Many specific behaviors constitute engagement. Professional conferences on patient education show only modest attention to the full range of relevant behaviors.

Conclusion

People must make informed choices about insurance and clinicians, coordinate communications among providers and manage complex treatments on their own. Not doing so risks preventable illness, suboptimal outcomes and wasted resources.

Practice Implications

Increased responsibilities of individuals, sick and well, to find and actively participate in high quality health care provides an opportunity for patient education researchers and clinicians to improve health outcomes by developing innovative strategies to support all individuals to effectively participate in their care to the extent possible.     

The impact of a patient web communication intervention on reaching treatment suggested guidelines for chronic diseases: A randomized controlled trial

ObjectiveExamine the impact of a PACE (Prepare, Ask, Check, Express) inspired web-based communication intervention alone or combined with a workshop on reaching treatment goals for patients suffering from chronic diseases (CDs), compared to usual care.MethodsThree arm single-blind RCT in community primary care (PC) practices. PC practitioners (n = 18) had a CD patient caseload, and practicing >5 years. Patients >40 years old, English speaking, computer literate, not reaching treatment goals for hypertension, type II diabetes, and/or dyslipidemia.Interventions(1) web-intervention and (2) web intervention and nurse facilitated workshop and (3) usual care.OutcomeProportion of patients meeting all treatment suggested guidelines for the diagnoses they were enrolled for.ResultsPatients (n = 322) were randomized, and of these 221 returned for follow up. Patients in the web group were 1.42 times more likely to meet targets compared to usual care [95% CI: 1.00–2.00], a statistical difference not seen in the combined group. Sensitivity analyses were performed to mitigate bias due to loss to follow up.ConclusionsTraining patients in communication skills using a website positively affects reaching treatment goals for hypertensive, diabetic and dyslipidemic patients.Practice implicationsWeb communication interventions are an effective tool that can be used in primary care.     

A systematic scoping review of psychosocial and psychological factors associated with patient activation

ObjectivePatient activation has been identified as an important predictor of how patients manage their own health, but little is known about its determinants. In this scoping review, we aim to address this research gap by (1) identifying literature on psychosocial/psychological factors associated with patient activation, and (2) extracting and synthesizing major results reported on that relationship.MethodsUsing a systematic search of four electronic databases (Web of Science, PubMed, PsychInfo, CINAHL), our search algorithm combined related terms for “psychosocial factors” or “psychological factors” and “patient activation”.ResultsOf the 1128 records identified, we included 13 studies in this scoping review. In these, we identified 21 psychosocial/psychological factors that were significantly associated with patient activation. The four most frequently investigated factors were depression, self-efficacy, hope, and health status. Overall, the methodological quality of studies was low. The majority were cross sectional in design, and only one assessed causality.ConclusionsOur results suggest that psychosocial/psychological factors explain variations in patient activation. However, further research is needed to identify causal relationships between psychosocial/psychological factors and patient activation.Practice ImplicationsThe insights from our review could be used for designing and evaluating interventions to improve patient activation.     

Self-management of health-behaviors among older and younger workers with chronic illness

Objective

To examine the self-management of health behaviors carried out by older (aged 50–69 years) and younger workers (aged 20–49 years) with a chronic illness.

Methods

Questionnaire data was collected from 759 employees with a diagnosed chronic illness. Four categories of self-managing health behaviors were examined: using prescribed medication, monitoring and responding to symptoms, managing an appropriate diet and exercising.

Results

The majority of participants (56–97%) reported being advised to carry out health behaviors at home and at work. Controlling for confounding factors, medication use was associated with younger and older workers. Managing an appropriate diet was associated with younger workers with asthma, musculoskeletal pain or diabetes. Exercising was associated with younger workers with asthma and with older workers with heart disease, arthritis and rheumatism or diabetes.

Conclusions

The findings indicate that there are differences in diet and exercise activities among younger and older workers.

Practice implications

To increase self-management in health behaviors at work, improved communication and understanding between the different health professions and the patient/employee is required so that different tailored approaches can be effectively targeted both by age and within the context of the working environment, to those managing asthma, heart disease, diabetes and arthritis and rheumatism.     

Developmentally appropriate supported self-management for children and young people with chronic conditions: A consensus

Objective/sTo create a consensus list of self-management definitions, recommendations, and endpoints for children and young people (0–20 years) with chronic conditions.MethodsThis study used a Delphi technique. Based on the number of relevant peer-reviewed publications, clinical academics were invited to participate in three survey rounds. Round one contained open-ended and multiple-choice questions eliciting general opinions on self-management. For round two, results were provided to the interdisciplinary expert panel as statements for rating their agreement using a 7-point Likert scale, with consensus predefined as moderately or extremely satisfied by >70% of participants. Statements not meeting consensus were re-presented in round three, with group feedback incorporated. Finalised statements informed creation of the ‘Partners in Health: Self-Management Consensus List for Children and Young People’.ResultsSixteen clinical academics participated: 12 completed round one; 14 completed round two; and 12 completed round three. Of 101 statements, 90 reached consensus, with statements separated into five developmentally appropriate groups. Statements covered broad self-management and self-management support domains including knowledge, involvement, monitoring/responding to symptoms, transition, impact, lifestyle, and support. Division of responsibility and autonomy were distinct themes.Conclusion and practice implicationsThis research provides consensus-based guidance for clinicians providing paediatric self-management support.     

Asking questions: The effect of a brief intervention in community health centers on patient activation

Objective

To evaluate the impact of a patient activation intervention (PAI) focused on building question formulation skills that was delivered to patients in community health centers prior to their physician visit.

Methods

Level of patient activation and patient preferred role were examined using the patient activation measure (PAM) and the patient preference for control (PPC) measure.

Results

More of the 252 patients evaluated were at lower levels of activation (PAM levels 1 or 2) than U.S. population norms before the intervention. Paired-samples t-test revealed a statistically significant increase from pre-intervention to post-visit PAM scores. One-third of participants moved from lower levels of activation to higher levels (PAM levels 3 or 4) post-intervention. Patients preferring a more passive role had lower initial PAM scores and greater increases in their post-intervention PAM scores than did those who preferred a more active role.

Conclusion

Patients exposed to the PAI demonstrated significant improvement on a measure of activation. The PAI may be useful in helping patients prepare for more effective encounters with their physicians.

Practice implications

The PAI was feasible to deliver in the health center setting and may be a useful method for activating low-income, racial/ethnic minority patient populations.     

Barriers to patient participation in a self-management and education website Renal PatientView: A questionnaire-based study of inactive users

ObjectivesThe Renal PatientView (RPV) website is an information and education tool aimed at increasing patient involvement in their care. We have conducted this study to elucidate why some users remain inactive on RPV despite initially signing up for the service.MethodsPatients at a teaching hospital in United Kingdom, who originally signed up for RPV but are no longer active (no logins during previous 6 months), were sent paper questionnaires. Responses were collected for up to 6 months.ResultsOf the 190 questionnaires, 69 (39%) were returned partially or fully completed. Majority of respondents could access computer (94%) and internet (91%) from home. Reasons for inactivity among survey respondents included: loss of login credentials (45%), perception that it did not add anything to existing care (37%), being too busy (13%) and anxiety of viewing results from home (10%). Thirty-seven respondents provided free-text comments. Thematic analysis of these reinforced above findings and also indicated that despite infrequent use, some patients valued RPV availability. Patients made very little reference to using sections of the website other than test results.ConclusionsPatients find RPV a valuable resource. It is, however, mainly seen as a portal to check blood test results; other sections of the website aimed at promoting self-management remain underutilized. Several local and central level changes, such as a robust system of user accounts handling, improved promotion, and emphasis on further development of self-management sections of RPV may help improve participation.     

Intensity of exposure to a patient activation intervention and patient engagement in medical visit communication

ObjectiveWe examined associations between intensity of exposure to a community health worker (CHW) delivered communication activation intervention targeting low-income patients with hypertension.MethodsWe analyzed question-asking behaviors of patients assigned to the intervention arms (n = 140) in a randomized controlled trial. Intensity of exposure to the intervention was operationalized as the duration of face-to-face coaching and number of protocol-specified topics discussed. Mixed effects models characterized the relationship between intensity of exposure and patients’ communication in a subsequent medical visit.ResultsThe number of topics discussed during the coaching session was positively associated with patients’ asking psychosocial-related questions during their visit. The duration of the coaching session was positively associated with patients’ use of communication engagement strategies to facilitate their participation in the visit dialogue. Exposure to a physician trained in patient-centered communication did not influence these relationships.ConclusionsA dose-response relationship was observed between exposure to a CHW- delivered communication activation intervention and patient-provider communication.Practice implicationsThis study supports the use of CHWs in activating patients toward greater communication in the therapeutic exchange.     

The extent and breadth of benefits from participating in chronic disease self-management courses: a national patient-reported outcomes survey

OBJECTIVE: To quantify the benefits that people receive from participating in self-management courses and identify subgroups that benefit most. METHODS: People with a wide range of chronic conditions attending self-management courses (N = 1341 individuals) were administered the Health Education Impact Questionnaire (heiQ). Baseline and follow-up data were collected resulting in 842 complete responses. Outcomes were categorized as substantial improvement (effect size, ES > or = 0.5), minimal/no change (ES -0.49 to 0.49) and substantial decline (ES < or = -0.5). RESULTS: On average, one third of participants reported substantial benefits at the end of a course and this ranged from 49% in the heiQ subscale Skill and technique acquisition to 27% in the heiQ subscale Health service navigation. Stratification by gender, age and education showed that younger participants were more likely to benefit, particularly young women. No further subgroup differences were observed. CONCLUSION: While the well-being of people with chronic diseases tends to decline, about one third of participants from a wide range of backgrounds show substantial improvements in a range of skills that enable them to self-manage. PRACTICE IMPLICATIONS: These data support the application of self-management courses indicating that they are a useful adjunct to usual care for a modest proportion of attendees.     

Effects of a Web-based intervention for adults with chronic conditions on patient activation: online randomized controlled trial

Background

With almost one-half of Americans projected to have at least one chronic condition before 2020, a vital role of the health care system is to develop informed, engaged individuals who are effective self-managers of their health. Self-management interventions (SMIs) delivered face-to-face or by telephone (traditional SMIs) are associated with improved self-management knowledge, skills, and self-efficacy, which are expressed by the composite construct of patient activation, a predictor of health outcomes. Web-based interventions to support self-management across the spectrum of chronic diseases have the potential to reach a broader population of patients for extended periods than do traditional SMIs. However, evidence of the effectiveness of Web-based interventions on patient activation is sparse. High-quality studies featuring controlled comparisons of patients with different chronic conditions are needed to explore the interaction of Web-based interventions and patient activation.

Objective

To explore the effect of a Web-based intervention on the patient activation levels of patients with chronic health conditions, measured as attitudes toward knowledge, skills, and confidence in self-managing health.

Methods

For this 12-week study, prospective participants were selected from the patient panel of a regional health care system in the United States. The 201 eligible participants were randomly assigned to two groups. Intervention group participants had access to MyHealth Online, a patient portal featuring interactive health applications accessible via the Internet. Control participants had access to a health education website featuring various topics. Patient activation was assessed pre- and posttest using the 13-item patient activation measure. Parametric statistical models (t test, analysis of variance, analysis of covariance) were applied to draw inferences.

Results

The Web-based intervention demonstrated a positive and significant effect on the patient activation levels of participants in the intervention group. A significant difference in posttest patient activation scores was found between the two groups (F _1,123 = 4.438, P = .04, r = .196). Patients starting at the most advanced development of patient activation (stage 4) in the intervention group did not demonstrate significant change compared with participants beginning at earlier stages.

Conclusions

To our knowledge, this is the first study to measure change in patient activation when a Web-based intervention is used by patients living with different chronic conditions. Results suggest that Web-based interventions increase patient activation and have the potential to enhance the self-management capabilities of the growing population of chronically ill people. Activated patients are more likely to adhere to recommended health care practices, which in turn leads to improved health outcomes. Designing Web-based interventions to target a specific stage of patient activation may optimize their effectiveness. For Web-based interventions to reach their potential as a key component of chronic disease management, evidence is needed that this technology produces benefits for a sustained period among a diverse population.     

Evaluation of the chronic disease self-management program in a Chinese population

OBJECTIVE: This study evaluated the 6-week Chronic Disease Self-Management Program (CDSMP) in Hong Kong. METHODS: A total of 148 subjects with chronic illness were recruited. Subjects were matched on duration of illness and gender, and then randomly allocated to experimental and comparison groups. The experimental group participated in the CDSMP, while the comparison group joined a Tai-Chi interest class in a mass-activity format. Subjects completed evaluation questionnaires before beginning their program and 1 week following the program. RESULTS: Analysis of covariance showed that the CDSMP participants demonstrated significantly higher self-efficacy in managing their illness, used more cognitive methods to manage pain and symptoms, and felt more energetic than the subjects in the comparison group. The CDSMP participants also demonstrated changes in their profile of coping strategies, having a tendency to adopt the cognitive methods of diverting attention, reinterpreting pain, ignoring sensations, and making positive self-statements. CONCLUSION: The short-term evaluation results showed that the CDSMP primarily increased the self-efficacy, exercise behavior, and application of cognitive coping strategies of the participants. PRACTICE IMPLICATION: The effect of the CDSMP in a Chinese population is similar to that found in studies in Western cultures, and the CDSMP could be applied effectively in a Chinese population.     

Fatigue self-management education in persons with disease-related fatigue: A comprehensive review of the effectiveness on fatigue and quality of life

ObjectivesTo systematically synthesize the effectiveness of fatigue self-management education (SME) on fatigue and quality of life (QoL) in persons with disease-related fatigue, and to describe the intervention characteristics.MethodsWe systematically reviewed the literature on SMEs in people with disease-related fatigue. We included randomized controlled trials (RCT), which aimed to improve self-management skills for fatigue in daily life. We synthesized the effectiveness and mapped the intervention characteristics.ResultsWe included 26 RCTs studying samples from eight disease groups. At follow-up, 46% studies reported statistically significant improvements on fatigue and 46% on QoL. For persons with cancer 6/8 and multiple sclerosis 8/10 RCTs showed positive evidence in favor of SME. The range of effect sizes was wide (d: 0.0 ->0.8). Delivery modalities (inpatient, outpatient, home), interactions (individual, group, remote), and duration [range (h): 1–17.5] varied.ConclusionsThe overall evidence on the effectiveness of SMEs on fatigue and QoL is limited and inconsistent. For persons with cancer and multiple sclerosis, the evidence provides a positive effect. The RCTs with medium to large effect on QoL indicate the potential benefit of SMEs.Practical implicationDuration and peer interaction should be considered when tailoring SMEs to populations and contexts.