Self-management Course Research Articles

Factors Influencing Possible Participation in Chronic Disease Self-management Courses

Chronic disease self-management (CDSM) courses have been shown to be effective in improving self-management, quality of life and clinical outcomes; however, participation rates in both generic and disease-specific courses are low. The objective of this qualitative study was to explore the attitudes, perceived behavioural control (PBC) and subjective norms of general practice patients with chronic diseases towards future participation in a CDSM course. The study, conducted in 2 006, used semi-structured interviews with a purposive sample of eight men and 11 women who had a chronic disease. The theory of planned behaviour provided a framework for a thematic analysis of the data identifying themes related to attitude, PBC and subjective norms. Nine themes were identified related to attitude. These included a desire for the opportunity to share/gain support; willingness to participate if they were provided with more/new information; basing their choice on severity of disease; trying the program out first; individual coping strategies; reliance on medical practitioner advice; needing some certainty or being afraid of future prospects; doing things in their own particular way; and deciding on the basis of proven results. Six themes emerged related to PBC, which revolved around structural barriers, time, transport, cost, mobility, convenient time and location. Three subjective norms were identified including encouragement from family/friends, medical practitioner and others with the same condition. Several positive attitudes such as the provision of information, opportunities to share and gain support and help with coping - which CDSM courses offer - could be capitalised on when promoting the courses. However, understanding other attitudes such as the importance of disease severity and a need to 'do it my way', reveal misconceptions about the aims of CDSM courses that need to be more clearly communicated when promoting courses. Structural barriers to participating in CDSM courses can easily be overcome by careful planning and adequate funding. Finally, general practitioner encouragement to attend CDSM courses could improve participation rates.

Planning for end of life care within lay-led chronic illness self-management training: The significance of ‘death awareness’ and biographical context in participant accounts

UK health policy dictates that Advance Care Planning (ACP), including the use of living wills, promotes choice and quality regarding end of life care for those with chronic and life-threatening conditions and it has been incorporated in self-management training. This paper reports a qualitative evaluation based on in-depth interviews with 31 respondents who had completed a UK-based lay-led self-management course (The Expert Patients Programme), and 12 respondents who had completed the same course adapted for people who are HIV positive. We draw upon previous social research on ‘death awareness’ and the biographical context of illness experience and management in examining the impact of incorporating this subject within a self-management intervention. The analysis demonstrates that many participants were unprepared to face issues raised in the session with material represented as disrupting some aspects of illness adaptation and existing views about death and dying. Positioning educational material on death and dying alongside that on ‘positive’ self-management of illness highlights the complexities and sensitivities of planning for end of life care with implications for future educational interventions of this type.

Effectiveness of a Self-Management Intervention in Patients With Screen-Detected Type 2 Diabetes

To examine the effectiveness of a theory-driven self-management course in reducing cardiovascular risk in patients with screen-detected type 2 diabetes, taking ongoing medical treatment into account. A total of 196 screen-detected patients, receiving either intensive pharmacological or usual-care treatment since diagnosis (3-33 months previously), were subsequently randomized to a control or intervention condition (self-management course). A 2 x 2 factorial design evaluated the behavioral intervention (self-management course versus control) nested within the medical treatment (intensive versus usual-care), using multilevel regression modeling to analyze changes in patients' BMI, A1C, blood pressure (BP), and lipid profiles over 12 months, from the start of the 3-month course to 9-month follow-up. The self-management course significantly reduced BMI (-0.77 kg/m2) and systolic BP (-6.2 mmHg) up until the 9-month follow-up, regardless of medical treatment. However, intensive medical treatment was also independently associated with lower BP, A1C, total cholesterol, and LDL before the course and further improvements in systolic BP (-4.7 mmHg). Patients receiving both intensive medical treatment and the self-management course therefore had the best outcomes. This self-management course was effective in achieving sustained reductions in weight and BP, independent of medical treatment. A combination of behavioral and medical interventions is particularly effective in reducing cardiovascular risk in newly diagnosed patients.

Participation, Roles, and the Dynamics of Change in a Group-Delivered Self-Management Course for People Living With HIV

Interventions designed to change behavior delivered to groups rather than individuals are popular in health promotion and self-management. The 7-week positive self-management program (PSMP) for people with HIV status is adapted from a psychoeducational program designed to increase people's capacity to manage their conditions by enhancing self-efficacy. A case study using mixed qualitative methodology included pre- and postcourse interviews with 14 participants plus participant observation and focused on changes in attitude toward self-management responsibility. The authors identified a precourse typology of motivations and expectations: Hopeless, Recovery phase, or Questioning phase. Participants adopted roles (information seekers or information givers) related to these types. Some expectations and problems were not dealt with because the PSMP's philosophical grounding prioritized improvement of self-efficacy, precluding engagement with material and social needs. Collective user-defined need and support from host organizations might be more important in improving self-management than the structured content of chronic disease self-management programs.

Integration of a Promotora-Led Self-Management Program Into a System of Care

The purpose of this article is to describe the integration of a promotora-led self-management component into a system of care and assess the influence of this program on indicators of metabolic control over time. Gateway Community Health Center is a federally qualified health center in Laredo, Texas, that serves a predominantly Hispanic population. Gateway integrated self-management support into care for people with diabetes by incorporating promotora-led self-management services into the clinic structure, operations, and patient visits. The self-management program included education, goal setting, depression screening with symptom follow-up, and support groups after course end. Indicators of metabolic control, HbA1c, high-density lipoprotein cholesterol, low-density lipoprotein cholesterol, and triglycerides were compared at baseline and at 12 months. The integration of promotora-led self-management services into the system of care allowed for continual improvements of self-management services in response to patient needs. Patients enrolled in the self-management course showed improved indicators of metabolic control that were sustained over time, and they reported a high level of goal achievement. The integration of the promotora-led self-management program into diabetes care at Gateway generated a system of referral, follow-up, feedback, and documentation that produced consistently high-quality clinical care.

Who Participates in Diabetes Self-management Interventions?

The purpose of this study was to examine reasons for nonparticipation and drop out in a diabetes self-management intervention. A total of 468 recently screen-detected patients, receiving usual care or intensive pharmacological treatment, were invited and randomized into either a control or intervention condition, consisting of a brief self-management course. A nonresponse survey was conducted, and participants, nonparticipants, and dropouts were compared on sociodemographic variables, diabetes attitudes, and self-care. A total of 227 patients consented and were allocated to the control (n=108) or intervention group (n=119). Two hundred forty-one patients declined participation, 41 dropped out, and 78 completed the intervention. Major reasons for refusal and drop out were hesitancy toward research and practical barriers. Nonparticipants were less educated and reported higher self-management, while participation also varied by treatment and disease duration: intensively treated patients were more likely to participate in their first year, and usual-care patients participated more often 2 to 3 years after diagnosis. Dropouts had a lower education level but did not differ on any other measure. Participants, nonparticipants, and dropouts did not differ in their attitudes toward diabetes, but the intervention did attract patients with lower self-care. Variations in participation by treatment and disease duration suggest that patients prefer self-management interventions at different times depending on their medical treatment. Finally, education appears to be the most important factor determining participation. Alternative strategies are needed to attract and retain patients with low education.

The Expert Patients Programme: a paradox of patient empowerment and medical dominance

Self-care is seen as a key element in managing resource demand in chronic disease and is also perceived as an empowering right for patients. The Chronic Disease Self-Management Programme developed in the USA has been adopted in a number of countries and in the UK has been as adapted as the Expert Patients Programme. However, despite its potential as a lay-led empowering initiative, the Expert Patients Programme has been criticised as perpetuating the medical model and failing to reach those in most need. This paper revisits a critique of the Expert Patients Programme, and drawing upon a qualitative study seeks to explore whether the Expert Patients Programme enables empowerment or replicates traditional patterns of the patient-professional relationship. A grounded-theory approach was adopted utilising focus groups, in-depth interviews and participant observation. Data were analysed through the constant comparative method and the development of codes and categories. Conducted in the relatively affluent area of the south-east of England, this paper draws on data from 66 individuals with a chronic illness who were knowledgeable, active and informed. The study revealed a number of characteristics common to expert patients that were linked to a systematic, proactive and organised approach to self-management, a clear communication style and the ability to compartmentalise emotion. The study included participant observation of an Expert Patients Programme and a professional-led self-management course. The paradoxical nature of the Expert Patients Programme was revealed, for whilst there was evidence that it reinforced the medical paradigm, there was a concurrent acknowledgement and support for the subjective experience of living with a long-term condition. Furthermore, whilst the policy emphasis has been on individual empowerment within the Expert Patients Programme, there is some evidence that it may be triggering a health consumer movement.

Beyond Good Intentions: the development and evaluation of a proactive self-management course for patients recently diagnosed with Type 2 diabetes

This paper describes the development and first results of a brief self-management course for patients recently diagnosed with Type 2 diabetes. The intervention incorporates elements from proactive coping and self-regulation theory in a five-step plan to help newly diagnosed patients formulate and carry out intentions with regard to their self-management. The theoretical framework and course program are described, patient evaluations are summarized and proximal outcomes of the course will be analyzed, investigating whether the course is able to increase patients' proactive skills, goal attainment and confidence in dealing with self-management issues. Participants included 180 patients, diagnosed 3-33 months previously during a population screening. Participants were randomized into an intervention (n = 78) or control group (n = 102). Course evaluations were very positive, regardless of patients' demographic or medical background and participants were particularly positive about the five-step plan and potential for peer interaction. Compared with the control group, course participants improved significantly in terms of proactive coping, goal achievement and self-efficacy. An intervention based on proactive coping appears to meet the needs of patients newly diagnosed with Type 2 diabetes, teaching them new proactive skills, improving their goal achievement and increasing their self-efficacy in dealing with their self-management tasks.

Generating interest in the Chronic Disease Self-Management Course: What makes a successful press release?

Generating interest in the Chronic Disease Self-Management Course: What makes a successful press release?

The Mental Health Expert Patient: Findings from a Pilot Study of a Generic Chronic Condition Self-Management Programme for People with Mental Illness

Less than optimal outcomes and escalating costs for chronic conditions including mental illness have prompted calls for innovative approaches to chronic illness management. This study aimed to test the feasibility and utility of combining a generic, clinician administered and peer-led self-management group approach for people with serious mental illness. General practitioners and mental health case managers used a patient-centred care model (the Flinders model) to assist 38 patients with serious mental illness to identify their self-management needs, and match these with interventions including Stanford peer-led, self-management groups and one-to-one peer support. Self-management and quality of life outcomes were measured and qualitative evaluation elicited feedback from all participants. Collaborative care planning, combined with a problems and goals focused approach, resulted in improved self-management and mental functioning at 3 to 6 months follow-up. The Stanford self-management course was applicable and acceptable to patients with serious mental illnesses. Qualitative feedback was highly supportive of this approach. Generic, structured assessment and care planning approaches, resulting in self-management education targeted to the individual, improved self-management and quality of life. Patients and service providers reported considerable gains despite the challenges associated with introducing a generic model within the mental health and general practice sector.

Is the Pain Stages of Change Questionnaire (PSOCQ) a useful tool for predicting participation in a self-management programme? Further evidence of validity, on a sample of UK pain clinic patients

BackgroundIn the context of finite health resources, encouraging self-management of chronic conditions is important. Indeed, it is a key priority in the UK. An increasing number of self-management programmes are becoming available. However, patients may not always choose to participate in them. Some will prefer a more directed or medically orientated treatment. The acceptability of self-management programmes for patients suffering from chronic pain is an important issue. Few measures exist that examine the process of change to a self-management approach. The Pain Stages of Change Questionnaire (PSOCQ) was evaluated for this purpose in the present study. Hypotheses were centred around criterion and construct validity of the PSOCQ.MethodsA sample of pain patients was surveyed about their interest in participating in a lay-led self-management programme ('the Expert Patients Programme'). In addition, participants completed two psychometric measures: the Pain Stages of Change Questionnaire (PSOCQ) together with the Chronic Pain Acceptance Questionnaire (CPAQ). This is the first study as far as we are aware to examine these two scales together. The psychometric properties of the PSOCQ were examined. Analyses focused on the associations between the PSOCQ scores and interest in participating in the self-management programme. Further associations were examined between the PSOCQ and the Chronic Pain Acceptance Questionnaire.ResultsThe results demonstrated qualified support for the PSOCQ, in particular the Contemplation sub-scale. There was a significant positive association between interest and likelihood of joining the self-management programme and contemplation scores. The action and maintenance sub-scales appeared to be measuring a unitary dimension. The associations between the PSOCQ and the Chronic Pain Acceptance Questionnaire were in the directions predicted. The limitations of the study were discussed.ConclusionThe results showed some support for the PSOCQ as a potentially useful tool in assessing who may or may not be likely to join a self-management course.

Recovery following stroke: The role of self-management education

Current stroke rehabilitation tends to focus on the bio-medical course of disability, often responding to psychological and social issues only when they have been implicated in crises. Although this situation is costly, little evidence exists in relation to how psychological and social outcomes can be facilitated or how psychosocial decline can be prevented. In the area of adjustment following traumatic injury, there has been some suggestion that rehabilitation should focus on the expansion of resources, skills and self-efficacy as this will enable individuals to cope more effectively with their medical condition and circumstances. The current study was a longitudinal randomised controlled trial involving 100 people with stroke, 58 of whom were randomly allocated to an intervention based on the notion of psychosocial skill expansion. All were patients of a major hospital in Queensland, Australia. An existing self-management intervention (The Chronic Disease Self-Management Course, Lorig et al., 2001) was used to operationalise the concept of psychosocial skill expansion. The control group reported declines in functioning during the first year following stroke in the areas of family roles, activities of daily living, self-care and work productivity, that were not reported by the intervention group. Although the groups had reached similar levels by one year post-stroke, this intervention may have a protective function, presumably by improving capacity to manage the functional requirements of daily life. However, the intervention did not appear to have its impact through self-efficacy, as was expected, and failed to influence outcomes such as mood or social participation. Nevertheless, the intervention warrants further investigation, given that it appears to improve rehabilitation outcomes, at least in the short-term.

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 ≥ 0.5), minimal/no change (ES −0.49 to 0.49) and substantial decline (ES ≤ −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.

CMS Launches Disease Management Models

CMS Launches Disease Management Models

Change of perspective: A measurable and desired outcome of chronic disease self-management intervention programs that violates the premise of preintervention/postintervention assessment

To determine if participants in chronic disease self-management courses have a change of perspective of their health status (a response shift), and if this is measurable with a paper-based questionnaire. Nine items were developed to measure potential benefits of self-management courses. These were based on the constructs of a previous questionnaire, the Health Education Impact Questionnaire (HEI-Q). Cognitive interviews elicited spontaneous statements about the reasons for paper-based answers. Sensitivity, specificity, and overall accuracy of items were calculated using the interview as a relative gold standard. Response shift can be negative (i.e., after the course, participants realize that, before the course, they were worse than they thought they were), positive (i.e., participants now realize they were better than they thought they were), or absent (no change). Interviews (n = 39) reflected that true response shift occurred in approximately half the replies to questionnaire items. Of these, 31% were negative response shift, 20% were positive response shift. Response shift was absent in 32% of replies. Presence or absence of response shift could not be determined in 17% of replies across items. Significant concordance between questionnaires and cognitive interviews (average overall accuracy 0.79) indicated that the HEI-Q Perspective questionnaire detects response shift in participants of self-management courses. The questionnaire revealed that 87% of participants had response shift in at least 1 item. This study suggests that preintervention/postintervention assessments of interventions such as self-management courses are confounded by a change in perspective of a large proportion of respondents. It also indicates response shift is a valuable outcome of self-management courses that can be measured with a paper-based questionnaire.

Fatigue and rheumatoid arthritis

Fatigue is a common complaint among patients with rheumatoid arthritis (RA) and is regarded as an extra-articular symptom of the disease. Little attention has been paid by health professional teams to the multidimensional nature of RA-related fatigue and its wide-ranging consequences for quality of life. Unlike normal tiredness, fatigue is chronic, typically not related to overexertion and poorly relieved by rest. The prevalence is high and several RA-related components have been reported as predictors of fatigue. RA-related fatigue appeared to be strongly associated with psychosocial factors. Fatigue assessment and management are complex because psychological and physiological factors may be involved. Several instruments that have been used in RA to assess fatigue. They have involved a self-reporting format. Some are brief, quantitative and symptom-focused questionnaires. Others provide a multidimensional assessment. DMARD therapy, especially anti-TNF decreased disease activity and alleviates fatigue. An additional direct effect is hypothetical. The non-pharmacological management includes behavioral therapy or self-management courses and physical exercise. Finally, the importance and relevance of fatigue as an outcome measure is becoming highlighted by research groups and should lead to improved management of fatigue in usual medical practice.

The effect on behavior and bone mineral density of individualized bone mineral density feedback and educational interventions in premenopausal women: a randomized controlled trial [NCT00273260

BackgroundLimited information is available on ways to influence osteoporosis risk in premenopausal women. This study tested four hypotheses regarding the effects of individualized bone density (BMD) feedback and different educational interventions on osteoporosis preventive behavior and BMD in pre-menopausal women, namely: that women are more likely to change calcium intake and physical activity if their BMD is low; that group education will be more efficacious at changing behavior than an information leaflet; that BMD feedback and group education have independent effects on behavior and BMD; and, that women who improve their physical activity or calcium intake will have a change in bone mass over 2 years that is better than those who do not alter their behavior.MethodsWe performed a 2-year randomized controlled trial of BMD feedback according to T-score and either an osteoporosis information leaflet or small group education in a population-based random sample of 470 healthy women aged 25–44 years (response rate 64%). Main outcome measures were dietary calcium intake, calcium supplement use, smoking behavior, physical activity, endurance fitness, lower limb strength and BMD. We used paired t-tests, one-way ANOVA and linear regression techniques for data analysis.ResultsWomen who had feedback of low BMD had a greater increase in femoral neck BMD than those with normal BMD (1.6% p.a. vs. 0.7% p.a., p = 0.0001), but there was no difference in lumbar spine BMD change between these groups (0.1% p.a. vs. 0.08% p.a., p = 0.9). Both educational interventions had similar increases in femoral neck BMD (Leaflet = +1.0% p.a., Osteoporosis self-management course = + 1.3% p.a., p = 0.4). Femoral neck BMD change was only significantly associated with starting calcium supplements (1.3 % p.a, 95%CI +0.49, +2.17) and persistent self-reported change in physical activity levels (0.7% p.a., 95%CI +0.22, +1.22).ConclusionIndividualized BMD feedback combined with a minimal educational intervention is effective at increasing hip but not spine bone density in premenopausal women. The changes in behavior through which this was mediated are potentially important in the prevention of other diseases, thus measuring BMD at a young age may have substantial public health benefits, particularly if these changes are sustained.

Self-management Training for People with Chronic Disease: A Shared Learning Experience

The lay-led, Chronic Disease Self-Management Course (CDSMC) is designed to train people in self-management. The present study focused on the experiences of a group of participants attending the CDSMC. Data were collected via interviews with nine participants four months and twelve months after attending the CDSMC. Results showed that participants appreciated the opportunity to share experiences in a reassuring environment. Goal setting was critical in making changes. The CDSMC provided participants with the confidence to select the self-management technique that would meet their needs at a given point in time.

A 12‐month follow‐up study of self‐management training for people with chronic disease: Are changes maintained over time?

A previous study reported some improved outcomes at 4-month follow-up after attendance on a lay-led, chronic disease self-management course (CDSMC). The purpose of this study was to determine whether changes were maintained over time (i.e. at 12 months) and to describe participants' current use of self-management techniques. The study was a 12-month follow-up of a sample of 171 participants who attended a CDSMC in the UK. Data were collected by self-administered questionnaires mailed to participants 12 months after they commenced a CDSMC and via telephone interviews with a sub-sample. The sample had a mean age of 54 years, mean disease duration of 16 years, 73% were women, and chronic diseases included endometriosis, depression, diabetes, myalgic encephalomyelitis, osteoporosis and polio. The significant improvements in outcomes identified at 4 months (i.e. cognitive symptom management, self-efficacy, communication with physician, fatigue, anxious and depressed moods and health distress) were sustained at 12 months. No significant changes between 4- and 12-month assessments were found on any study variables. Interview data confirmed that participants continued to use some of the self-management techniques learned on the course. Attendance on the CDSMC may lead to longer-term changes in key outcomes such as self-efficacy, use of some self-management behaviours and some aspects of health status (e.g. fatigue, depressed mood).

Endometriosis and self-management strategies

Endometriosis is a seriously debilitating disease affecting two million women in the UK, often resulting in long periods of severe discomfort and distress. For some, treatments can help overcome these issues, but for many, the symptoms can return at a high cost; physically, mentally, personally and financially. Self-management is based on research from the US and UK, where patients, provided with the necessary ‘self-management’ skills, can make a tangible impact on their disease and their quality of life. The National Endometriosis Society has been running self-management courses since 1999 and is an accredited organization adhering to agreed quality standards. Courses involve six weekly sessions covering a range of simple techniques to enable participants to take control of their lives. We follow up participants after six months and what is clear is that courses help the majority of women, who feel confident and in control of their lives, are able to communicate more effectively with professionals, have seen improved work and social relationships and reduced dependency on drugs. For the health professional benefits include happier, more fulfilled and healthier patients, a stronger patient/health professional relationship and are able to see reduced drug dependency from patients.