Self-management across chronic diseases: Targeting education and support needs

ObjectivesAmong Canadian adults with chronic disease: 1) to identify groups that differ in self-management task frequency and self-efficacy; 2) to compare group characteristics and preferences for self-management support.MethodsUsing data from an online survey, cluster analysis was used to identify groups that differed in self-management task frequency and self-efficacy. Multivariable regression was used to explore relationships with patient characteristics and preferences.ResultsCluster analysis (n = 247) revealed three groups:Vulnerable Self-Managers (n = 55), with the highest task frequency and lowest self-efficacy; Confident Self-Managers (n = 73), with the lowest task frequency and highest self-efficacy; and Moderate Needs Self-Managers (n = 119), with intermediate task frequency and self-efficacy. Vulnerable Self-Managers, when compared with the Confident group, were more often: on illness-related employment disability or unemployed; less well educated; diagnosed with emotional problems or hypertension, and had greater multimorbidity. They participated less often in self-management programs, and differed in support preferences.ConclusionsKnowing the characteristics of vulnerable self-managers can help in targeting those in greater need for self-management support that matches their preferences.Practice ImplicationsDifferent approaches are needed to support self-management in the vulnerable population.     

Supporting cancer patients to self-manage: Extent of use and perceptions of “trusted” online self-management resources

ObjectivesOnline resources can support patient self-management practices, but are not systematically used in routine clinical practice. We evaluated cancer patients' satisfaction with, and use of, tailored online resources.MethodsPatients completed monthly validated electronic patient reported outcome measures (ePROMs) of distress, unmet needs and symptoms. Patients with ePROM scores above pre-determined thresholds received an email directing them to relevant online self-management resources. Perceptions and experiences with these resources were evaluated via an online survey 3, 6 and 9 months after their initial monthly ePRO; and a subset of patients was also interviewed. Webpage use was monitored through Google Analytics and ClickMeter.ResultsOverall, 221 patients completed evaluation surveys and 31 completed interviews. Patients spent 0–10 min on average accessing resources, with 93% indicating they would reuse them. The most viewed page was physical wellbeing (n = 680); exercise and nutrition resources were most popular; and 69% of patients were satisfied with information content, reporting resources were easy to understand and navigate.ConclusionsOnline resources are perceived as acceptable and useful. Design and delivery recommendations can improve their support of self-management.Practice implicationsIncorporating automated online self-management resources into routine clinical workflows is a viable model to support routine follow up care.     

A qualitative participatory study to identify experiences of coronary heart disease patients to support the development of online self-management services

ObjectiveWeb-based self-management services remain underutilized in current practice. Our aim was to gain insight into disease and self-management experiences of patients in early and progressive stages of coronary heart disease (CHD), to understand moderating effects of daily life experiences on the utilization of web-based self-management services and preconditions for use.MethodsWe applied generative research techniques, which stem from the field of product design and are characterized by the use of creative processes. Three groups of patients with CHD received a sensitizing package to document and reflect on their health, and were subsequently either interviewed or participated in a focus group session.ResultsIn total, 23 patients participated in this study. Emerging themes were (1) fear for recurrent events, (2) experiences with professional care, (3) the perceived inability to prevent disease progression, (4) the desire to go on living without thinking about the disease every day, (5) the social environment as a barrier to or facilitator for self-management, and (6) the need for information tailored to personal preferences.ConclusionHow patients experience their disease varies between stable and post-acute stages, as well as between early and progressive stages of CHD. Patients in post-acute stages of the disease seem to be most amenable to support, while patients in stable stages want to live their life without being reminded of their disease. In the context of self-management, web-based services should be adapted to the variation in needs that occur in the different stages of CHD and new strategies to fit such services to these needs should be developed. Furthermore, they should be tailored to patients’ individual health situation and preferences, support patient empowerment, and manage expectations regarding the progression of their disease.     

Blended face-to-face and online/computer-based education approaches in chronic disease self-management: A critical interpretive synthesis

ObjectiveTo review the literature on chronic disease self-management programs that blend face-to-face and online/computer-based education design and delivery.MethodsA critical interpretive synthesis was conducted. Studies that described blended chronic disease self-management programs were reviewed. Two reviewers performed independent database searches, eligibility screening, and data extraction. Findings were synthesized using a conceptual mapping process.ResultsTwelve articles were included in the final review. Studies focused on patients with diagnoses of diabetes, asthma, and chronic obstructive pulmonary disorder. Factors influencing the design and delivery of programs focused on patient characteristics (such as disease prognosis, time since diagnosis, social determinants of health, health literacy, and proficiency with online/computer-based technologies).ConclusionsBlended learning self-management programs should consider the suitability of programs in light of health conditions and patient characteristics. Individual patient needs can be identified through clinician-driven assessments, including collaborative goal setting and the selection of pertinent educational tools.Practice ImplicationsWhen considering the design and delivery of chronic disease self-management education programs, healthcare providers should consider three factors: 1) patient characteristics, 2) learning perspectives, and 3) design technology options that best meet patient abilities, clinician expertise, and administrative capacity.     

Online self-management interventions for chronically ill patients: Cognitive impairment and technology issues

IntroductionAs the fraction of the population with chronic diseases continues to grow, methods and/or technologies must be found to help the chronically ill to take more responsibility to self-manage their illnesses. Internet based and/or mobile support for disease self-management interventions have often proved effective, but patients with chronic illnesses may have co-occurring cognitive impairment, making it more difficult for them to cope with technologies. Many older patients are also not familiar with technologies or they may have cognitive disabilities or dementia that reduce their ability to self-manage their healthcare. On-line solutions to the needs of chronically ill patients must be investigated and acted upon with care in an integrated manner, since resources invested in these solutions will be lost if patients do not adopt and continue to use them successfully.ObjectivesTo review the capabilities of online and mobile support for self-management of chronic illnesses, and the impacts that age and disease-related issues have on these interventions, including cognitive impairment and lack of access or familiarity with Internet or mobile technologies.MethodsThis study includes a review of the co-occurrence of cognitive impairment with chronic diseases, and discusses how cognitive impairment, dyadic caregiver patient support, patient efficacy with technology, and smart home technologies can impact the effectiveness and sustainability of online support for disease self-management.ResultsDisease self-management interventions (SMIs) using online patient centered support can often enable patients to manage their own chronic illnesses. However, our findings show that cognitive impairment often co-occurs in patients with chronic disease. This, along with age-related increases in multiple chronic illnesses and lack of technology efficacy, can be obstacles to Internet and mobile support for chronic disease self-management.ConclusionPatients with chronic diseases may have greater than expected difficulties in using Internet and mobile technologies for disease self-management, often due to cognitive impairment or unfamiliarity with technology. Approaches to dealing with such barriers include suitable integration of solutions involving patient–caregiver dyads, better design of online applications, careful attention to technology adoption and sustainability, and smart home technologies.     

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.     

Identifying Behavioral Phenotypes in Chronic Illness: Self-Management of COPD and Comorbid Hypertension

ObjectivesTo identify and characterize the constellation, or clusters, of self-management behaviors in patients with chronic obstructive pulmonary disease (COPD) and comorbid hypertension.MethodsCluster analysis (n = 204) was performed with standardized scores for medication adherence to COPD and hypertension medications, inhaler technique, and diet as well as self-reported information on physical activity, appointment keeping, smoking status, and yearly influenza vaccination for a total of eight variables. Classification and regression tree analysis (CART) was performed to further characterize the resulting clusters.ResultsPatients were divided into three clusters based on eight self-management behaviors, which included 95 patients in cluster 1, 42 in cluster 2, and 67 in cluster 3. All behaviors except for inhaler technique differed significantly among the three clusters (P’s<0.005). CART indicated physical activity was the first differentiating variable.ConclusionsPatients with COPD and hypertensioncan be separated into those with adequate and inadequate adherence. The group with inadequate adherence can further be divided into those with poor adherence to medical behaviors compared to those with poor adherence to lifestyle behaviors.Practice ImplicationsOnce validated in other populations, the identification of patient clusters using patient self-management behaviors could be used to inform interventions for patients with multimorbidity.     

Long-Term Condition Self-Management Support in Online Communities: A Meta-Synthesis of Qualitative Papers

BackgroundRecent years have seen an exponential increase in people with long-term conditions using the Internet for information and support. Prior research has examined support for long-term condition self-management through the provision of illness, everyday, and emotional work in the context of traditional offline communities. However, less is known about how communities hosted in digital spaces contribute through the creation of social ties and the mobilization of an online illness “workforce.”ObjectiveThe aim was to understand the negotiation of long-term condition illness work in patient online communities and how such work may assist the self-management of long-term conditions in daily life.MethodsA systematic search of qualitative papers was undertaken using various online databases for articles published since 2004. A total of 21 papers met the inclusion criteria of using qualitative methods and examined the use of peer-led online communities for those with a long-term condition. A qualitative meta-synthesis was undertaken and the review followed a line of argument synthesis.ResultsThe main themes identified in relation to the negotiation of self-management support were (1) redressing offline experiential information and knowledge deficits, (2) the influence of modeling and learning behaviors from others on self-management, (3) engagement that validates illness and negates offline frustrations, (4) tie formation and community building, (5) narrative expression and cathartic release, and (6) dissociative anonymity and invisibility. These translated into a line of argument synthesis in which four network mechanisms for self-management support in patient online communities were identified. These were (1) collective knowledge and identification through lived experience; (2) support, information, and engagement through readily accessible gifting relationships; (3) sociability that extends beyond illness; and (4) online disinhibition as a facilitator in the negotiation of self-management support.ConclusionsSocial ties forged in online spaces provide the basis for performing relevant self-management work that can improve an individual’s illness experience, tackling aspects of self-management that are particularly difficult to meet offline. Membership in online groups can provide those living with a long-term condition with ready access to a self-management support illness workforce and illness and emotional support. The substitutability of offline illness work may be particularly important to those whose access to support offline is either limited or absent. Furthermore, such resources require little negotiation online because information and support is seemingly gifted to the community by its members.     

Improving empowerment,motivation, and medical adherence in patients with poorly controlled type 2 diabetes: A randomized controlled trial of a patient-centered intervention

ObjectiveTo test whether an intervention consisting of four patient-centered consultations improves glycemic control and self-management skills in patients with poorly regulated type 2 diabetes (T2DM), compared to a control group receiving usual care.MethodsUnblinded parallel randomized controlled trial including 97 adults diagnosed with T2DM ≥ 1 year and hemoglobin A1c (HbA1c) levels ≥ 8.0% (64 mmol/mol). Consultations incorporated tools supporting self-reflection, learning processes, and goal setting. Primary outcome was HbA1c. Secondary outcomes were autonomy support, motivation, self-management skills, and well-being.ResultsAverage HbA1c decreased slightly in both groups. Autonomy support and frequency of healthy eating were significantly higher in the intervention group. Most participants in the intervention group chose to set goals related to diet and physical exercise. Implementation of the intervention was inconsistent.ConclusionDespite increased autonomy support and individual goal-setting, the intervention was not superior to usual care in terms of glycemic control. More research is needed on how individual preferences and goals can be supported in practice to achieve sustainable behavior changes.Practice ImplicationsThe intervention promoted participant engagement and supported exploration of participants’ challenges and preferences. Further exploration of more flexible use of tools adapted to individual contexts is recommended.     

Cancer information-seeking preferences linked to distinct patient experiences and differential satisfaction with cancer care

ObjectiveTrue person-centered care (PCC) involves anticipating, responding to, and integrating patients’ needs and preferences as the illness experience unfolds. PCC success rests, in part, on quality provider-patient communication and tailored information exchange. These processes can have profound effects on the patient experience, self-management and health outcomes including survival. Cancer information-seeking preferences (CISP) by patients are increasingly found to modulate illness and care processes. However, research has yet to document the CISP types and prevalence as well as their associations with satisfaction with care.MethodIndividuals (N = 2142) treated for cancer in the last 6 months completed the Ambulatory Oncology Patient Satisfaction Survey (AOPSS) and a CISP measure.ResultsWhereas 60.3% (n = 1292) reported wanting to actively seek information about their cancer, a surprisingly high percentage (i.e., 39.7%; n = 850) did not. Men reported avoiding cancer information to a greater extent than women, χ² (4, N = 2108) = 12.00, p = 0.02. CISP were also differentially associated with 6 key domains of satisfaction, with intense seekers consistently being less satisfied.Conclusion and practice implicationsThese findings underscore how CISP can significantly affect patients’ cancer experience as well as their care satisfaction.     

Self-management for pulmonary fibrosis: Insights from people living with the disease and healthcare professionals

ObjectivePeople with pulmonary fibrosis (PF) consider self-management essential for maintaining health. This study aims to explore the needs and expectations of PF self-management from the patient and healthcare professionals (HCPs) perspectives.MethodsSemi-structured interviews were conducted with people with PF and HCPs. Purposive sampling was used to recruit participants. Thematic analysis was performed using the principles of grounded theory.Results18 individuals with PF and 15 HCPs were interviewed. Common self-management components reported included exercise, nutrition, maintaining healthy mind, avoiding infections, recognising deterioration and seeking help, managing symptoms and treatments, social support, and end-of-life planning. Both groups felt that effective self-management required individualised strategies, supports, and reliable information. People with PF identified access to personal health data and self-acceptance as part of self-management. HCPs highlighted the importance of accessible supports and managing patient expectations of disease course and treatments. Some HCPs concerned about missed detection of deterioration and suggested that self-management strategies for PF may differ to other lung diseases.ConclusionThis study identified components important for self-management in PF and provides a basis for designing a PF self-management package. Practice implications: Self-management of PF can be facilitated with individualised support from HCPs and reliable information that is accessible.     

Development and validation of subscales to assess perceived support for self-management of mood or emotional problems: Results from a randomized trial

ObjectivesTo validate 2 new patient-reported measures of self-management support from health professionals for mood and emotional problems.MethodsThe sample comprised primary care patients with chronic physical conditions and co-morbid depressive symptoms enrolled in a randomized trial of telephone coaching of a depression self-care intervention (n = 120). At 6-month follow-up, patients completed 2 subscales with respect to support for self-management of their chronic physical condition(s): 1) Self-Management Information (SMInfo-Phys); and 2) Care Plan (CP-Phys) and equivalent subscales adapted to assess self-management support for mood and emotional problems: SMInfo-Mood and CP-Mood. Subscale scoring was assessed with Item Response Theory (IRT) analysis. Convergent validity of the mood subscales was assessed. The sensitivity of the mood and physical condition subscales to mental health interventions was assessed with generalized estimating equations (GEE).ResultsThe mood subscales were associated with relevant measures of perceived unmet mental health needs. Both SMInfo-Mood and CP-Mood were sensitive to the coaching intervention; CP-Mood was also sensitive to receipt of depression treatment outside the trial.ConclusionThis study provides preliminary evidence for the validity of the 2 new subscales.Practice implicationsThe subscales may be used to assess perceived health professional support for self-management of mood and emotional problems.     

Self-management among community-dwelling people with chronic conditions: Adapting evidence-based group programs using intervention mapping

ObjectiveSelf-management is a core theme within chronic care and several evidence-based interventions (EBIs) exist to promote self-management ability. However, these interventions cannot be adapted in a mere copy-paste manner. The current study describes and demonstrates a planned approach in adapting EBI’s in order to promote self-management in community-dwelling people with chronic conditions.MethodsWe used Intervention Mapping (IM) to increase the intervention’s fit with a new context. IM helps researchers to take decisions about whether and what to adapt, while maintaining the working ingredients of existing EBI’s.ResultsWe present a case study in which we used IM to adapt EBI’s to the Flemish primary care context to promote self-management in people with one or more chronic disease. We present the reader with a contextual analysis, intervention aims, and content, sequence and scope of the resulting intervention.ConclusionIM provides an excellent framework in providing detailed guidance on intervention adaption to a new context, while preserving the essential working ingredients of EBI’s.Practice ImplicationsThe case study is exemplary for public health researchers and practitioners as a planned approach to seek and find EBI’s, and to make adaptations.     

Mechanisms of Communicating Health Information Through Facebook: Implications for Consumer Health Information Technology Design

BackgroundConsumer health information technology (IT) solutions are designed to support patient health management and have the ability to facilitate patients’ health information communication with their social networks. However, there is a need for consumer health IT solutions to align with patients’ health management preferences for increased adoption of the technology. It may be possible to gain an understanding of patients’ needs for consumer health IT supporting their health information communication with social networks by explicating how they have adopted and adapted social networking sites, such as Facebook, for this purpose.ObjectiveOur aim was to characterize patients’ use of all communication mechanisms within Facebook for health information communication to provide insight into how consumer health IT solutions may be better designed to meet patients’ communication needs and preferences.MethodsThis study analyzed data about Facebook communication mechanisms use from a larger, three-phase, sequential, mixed-methods study. We report here on the results of the study’s first phase: qualitative interviews (N=25). Participants were over 18, used Facebook, were residents or citizens of the United States, spoke English, and had a diagnosis consistent with type 2 diabetes. Participants were recruited through Facebook groups and pages. Participant interviews were conducted via Skype or telephone between July and September 2014. Data analysis was grounded in qualitative content analysis and the initial coding framework was informed by the findings of a previous study.ResultsParticipants’ rationales for the use or disuse of a particular Facebook mechanism to communicate health information reflected six broad themes: (1) characteristics and circumstances of the person, (2) characteristics and circumstances of the relationship, (3) structure and composition of the social network, (4) content of the information, (5) communication purpose, and (6) attributes of the technology.ConclusionsThe results of this study showed that participants consider multiple factors when choosing a Facebook mechanism for health information communication. Factors included what information they intended to share, what they were trying to accomplish, attributes of technology, and attributes and communication practices of their social networks. There is a need for consumer health IT that allows for a range of choices to suit the intersectionality of participants’ rationales. Technology that better meets patients’ needs may lead to better self-management of health conditions, and therefore, improve overall health outcomes.     

Improved patient participation through advance care planning in nursing homes—A cluster randomized clinical trial

ObjectiveTo improve patient participation in advance care planning in nursing homes where most patients have some degree of cognitive impairment.MethodsThis was a pair-matched cluster randomized clinical trial with eight wards in eight Norwegian nursing homes. We randomized one ward from each of the matched pairs to the intervention group. We included all patients above 70. The primary outcome was prevalence of documented patient participation in end-of-life treatment conversations.The intervention included implementation support using a whole-ward approach where regular staff perform advance care planning and invite all patients and next of kin to participate.ResultsIn intervention group wards the patients participated more often in end-of-life treatment conversations (p < 0.001). Moreover, the patient’s preferences, hopes AND worries (p = 0,006) were more often documented, and concordance between provided TREATMENT and patient preferences (p = 0,037) and next of kin participation in advance care planning with the patient (p = 0,056) increased.ConclusionImproved patient participation – also when cognitively impaired - is achievable through advance care planning in nursing homes using a whole-ward approach.Practice implicationsPatients with cognitive impairment should be included in advance care planning supported by next of kin. A whole-ward approach may be used to implement advance care planning.Trial registrationISRCTN registry (ID ISRCTN69571462) – retrospectively registered.     

Health beliefs,treatment preferences and complementary and alternative medicine for asthma,smoking and lung cancer self-management in diverse Black communities

ObjectiveThe purpose of this literature review is to characterize unconventional health beliefs and complementary and alternative medicine (CAM) for asthma, smoking and lung cancer as those that are likely safe and those that likely increase risk in diverse Black communities. These findings should provide the impetus for enhanced patient–provider communication that elicits patients’ beliefs and self-management preferences so that they may be accommodated, or when necessary, reconciled through discussion and partnership.MethodsOriginal research articles relevant to this topic were obtained by conducting a literature search of the PubMed Plus, PsychINFO and SCOPUS databases using combinations of the following search terms: asthma, lung cancer, emphysema, chronic obstructive pulmonary disease (COPD), smoking, beliefs, complementary medicine, alternative medicine, complementary and alternative medicine (CAM), explanatory models, African American, and Black.ResultsUsing predetermined inclusion and exclusion criteria, 51 original research papers were retained. Taken together, they provide evidence that patients hold unconventional beliefs about the origins of asthma and lung cancer and the health risks of smoking, have negative opinions of standard medical and surgical treatments, and have favorable attitudes about using CAM. All but a small number of CAM and health behaviors were considered safe.ConclusionWhen patients’ unconventional beliefs and preferences are not identified and discussed, there is an increased risk that standard approaches to self-management of lung disease will be sub-optimal, that potentially dangerous CAM practices might be used and that timely medical interventions may be delayed.Practice implicationsProviders need effective communication skills as the medical dialog forms the basis of patients’ understanding of disease and self-management options. The preferred endpoint of such discussions should be agreement around an integrated treatment plan that is effective, safe and acceptable to both.     

Effectiveness of a nurse-led multidisciplinary self-management program for patients with coronary heart disease in communities: A randomized controlled trial

ObjectiveTo examine the effectiveness of a nurse-led multidisciplinary self-management program (NMSP) on self-management behaviors, self-efficacy, health-related quality of life (HRQoL) and unplanned health service utilization (HSU) among Chinese patients with coronary heart disease (CHD) in communities.MethodsA randomized controlled trial with repeated measurements was used. A convenience sample of 144 participants was recruited from a community health center in China. All participants were randomly assigned to an intervention group (n = 72) in the newly developed NMSP or a control group (n = 72) in routine care. Outcome measurement was performed at baseline, 3 months and 6 months using Coronary Artery Disease Self-Management Scale (CADSs), Self-efficacy for Chronic Disease 6-item Scale (SECD6), and Short Form-12 health survey questionnaire (SF-12).ResultsOver the six months, the two groups reported significant differences in disease medical and emotional management of CADSs, confidence in symptom and disease management of SECD6, physical and mental component summary of SF-12, as well as emergency and outpatient visits of unplanned HSU.ConclusionsThe NMSP improves self-management behaviors, self-efficacy, HRQoL and reduces unplanned HSU among CHD patients in communities.Practice implicationsThis study provides an effective approach to empower CHD patients with emphasizing on collaboration support of health professionals in communities.     

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.