Self-management Advice Research Articles

Recovery and economics

Summary Background: Personal recovery as an approach to psychiatric rehabilitation is attracting growing attention in many health systems. It emphasises attainment of personal goals, meaning and control in life, rather than symptom alleviation. Method: We examine what economic evidence there is in relation to a set of interventions that could be seen to be consistent with a recovery-focused approach. These include peer support, self-management, supported employment, welfare and debt advice, joint crisis plans and advance directives, supported housing, physical health promotion, personal budgets, anti-stigma campaigns and recovery colleges. Results: For some interventions we could find no economic evidence, and for some others it was methodologically weak, but the interventions for which we could find evidence generally did not appear to increase costs, and many represented cost-effective uses of resources.

Consideration of exercise-induced oxygen desaturation during the 6-min walk test in ex-smokers without airflow limitation

Factors including good physiotherapist interpersonal and communication skills, good patient education and selfmanagement advice, individualised and patient-centred care, a high level of physiotherapist knowledge, experiences and skills and positive organisational and environmental factors were perceived as important facilitators of a good patient–physiotherapist interaction by both patients and physiotherapists respectively. Patientswere generally dissatisfied when any of these key components were lacking from the interaction process. Conclusion(s): This systematic-review indicates that the quality of the patient–physiotherapist interaction is important regarding the outcome of musculoskeletal physiotherapy. By acknowledging the various facilitators and barriers to a good patient–therapist interaction, physiotherapists may enhance the therapeutic-interaction/relationship. Future research trials inmusculoskeletal pain should facilitate a good-therapist interaction and investigate its effects on pain and disability when added to other physiotherapy interventions. Implications: Physiotherapists in clinical practice should harness the non-specific effects of treatment to increase the effectiveness of interventions they deliver to patients.

Using an Interactive Self-Assessment Tool to Strengthen Your Employee Assistance Service

ISAT was developed by ISW Limits, a spin-off of the University of Leuven (Belgium). It stands for Interactive Self-Assessment Tool, which is an online screening about well-being at work. ISAT provides employees with individual feedback about their mental health and well-being at work. In addition, the tool provides tailored self-management advice as well as information about how and where to get support from the employer and the Employee Assistance Program provider. To the employers, ISAT offers group results in order to help companies target interventions.

Beyond lip service and box ticking: how effective patient engagement is integral to the development and delivery of patient-reported outcomes.

In the UK, demonstration of patient and public involvement (PPI) is now a funding requirement. Despite advice being available to researchers regarding PPI, levels of engagement are variable. Patient involvement has been at the core of the Leeds Psychosocial Oncology and Clinical Practice Research Group since 2007 when a local Research Advisory Group (RAG) was established. In addition, we work with experienced patient advocates from national groups. The RAG is led by designated researchers who manage and communicate with members. The RAG is invited to twice yearly meetings with the full research team when study findings are disseminated and advice sought. The meetings are also an opportunity to socialise and thank members. Effective partnerships and engagement require good communication, building relationships over time and tailoring involvement to individuals' skills and experience. Patients have been involved in design, planning new projects and assisting with grant proposals; development, pilot testing of interview strategies and question generation, project steering groups and management teams, development of self-management advice for online patient portals; implementation, extensive beta testing of new questionnaire builder software to enable collection of online patient-reported outcomes (PRO) and study websites, cognitive interviews to develop PRO items; dissemination, co-authorship of papers and presentations, attendance/representation of the group at conferences. The involvement of patient advocates is integral to ensuring PRO development remains patient-centred. Having a co-operative, well-established local PPI group and nationally active patient collaborators has had a rewarding and significant impact on our research programmes.

Use of patient-reported outcomes to measure symptoms and health related quality of life in the clinic

There is increasing interest in the use of patient-reported outcomes (PROs) in routine practice in cancer care to measure symptoms and health related quality of life (HRQOL). PROs are designed to capture the patient's perspective of their care and treatment, and complement the traditional clinical outcomes of survival and toxicity assessment. Integrating routine collection and feedback of PROs has been found to improve care for patients on both an individual level, through improved communication and management of symptoms, and at an organizational level, by enabling aggregation of data to compare performance. This article reviews the benefits and challenges of introducing patient-reported assessments into routine clinical practice. Methods for choosing a questionnaire; collection and presentation of results; timing and frequency of administration as well as clinician training methods to aid the ability of clinicians to integrate the use of PROs into their own practice are described. Electronic PRO capture and integration with electronic health records seems to provide the most effective method for seamless integration into existing patient care pathways. Case studies from our own practice illustrate the issues raised. Electronic methods enabling immediate collection, scoring and interpretation of the data, as well as real-time data capture, email alert systems and individualized, online self-management advice may enable severe symptoms to be managed in a more timely manner. Evaluation methods are described to establish the effectiveness of the PRO intervention. Engaging stakeholders throughout the process of initial consultation and development, during delivery and evaluation is key to success. Future work needs to focus on the effectiveness of PROs in longer-term follow-up of patients in routine care and the relationship between the PRO severity grading and clinician severity grading using the Common Terminology Criteria of Adverse Events (CTCAE).

The role of the Internet for people with chronic pain: examples from the DIPEx International Project.

In this article we consider how people with chronic illness are using the internet, drawing on examples from published qualitative interview studies of experiences of chronic pain in the UK, Germany and Israel. Extracts from the interviews can be seen on the websites from the www.dipexinternational.org collaboration which publishes analyses and many thousands of video and audio interview clips on country specific web platforms. The UK branch of the collaboration has been operating for over a decade and currently includes broad based samples of qualitative interviews with patients about their experiences of over 80 health problems. The research has demonstrated that people living with chronic pain are increasingly using the web to find information, support and practical advice for self-management and also for reassurance, encouragement, to compare experiences of treatment and to offer advice and support to others. The internet is changing the way that people are experiencing illness, although access to relevant and reliable online material is not equally distributed. Those who do not speak one of the handful of dominant languages are less likely to find online experiences that resonate with their own.

Optimizing nonpharmacological management following an acute exacerbation of chronic obstructive pulmonary disease.

Though the guidelines for the optimal management of chronic obstructive pulmonary disease (COPD) following an acute exacerbation (AE) are well established, issues associated with poor adherence to nonpharmacological interventions such as self-management advice and pulmonary rehabilitation will impact on hospital readmission rates and health care costs. Systems developed for clinically stable patients with COPD may not be sufficient for those who are post-exacerbation. A redesign of the manner in which such interventions are delivered to patients following an AECOPD is necessary. Addressing two or more components of the chronic care model is effective in reducing health care utilization in patients with COPD, with self-management support contributing a key role. By refining self-management support to incorporate the identification and treatment of psychological symptoms and by providing health care professionals adequate time and training to deliver respiratory-specific advice and self-management strategies, adherence to nonpharmacological therapies following an AE may be enhanced. Furthermore, following up patients in their own homes allows for the tailoring of advice and for the delivery of consistent health care messages which may enable knowledge to be retained. By refining the delivery of nonpharmacological therapies following an AECOPD according to components of the chronic care model, adherence may be improved, resulting in better disease management and possibly reducing health care utilization.

Patients' experiences of the management of lower back pain in general practice: use of diagnostic imaging, medication and provision of self-management advice.

Lower back pain is prevalent in the general community. Guidelines recommend against the use of diagnostic imaging unless 'red flags' are present that may indicate a potentially serious cause. This paper reports on a cross-sectional electronic survey to investigate self-reported experiences of lower back pain management among Australian general practice patients. Of the 872 participants, 551 (63%) reported that they had experienced lower back pain in the past 12 months. Approximately 40% of patients who had experienced lower back pain reported that they had consulted their general practitioner (GP) regarding this issue. Among those who sought general practice care, 67% reported being referred for diagnostic imaging. Those who received imaging were more likely to have been prescribed medication by their GP, but received self-management advice at the same rate as those who had not been referred. Rates of self-reported referral for diagnostic imaging were higher than expected, given the low prevalence of potentially serious causes for lower back pain reported in the international literature. However, it remains unclear whether this is due to poor guideline adherence by GPs or lack of specificity in the red flags identified in guidelines. Findings suggest the need for improvements in the provision of evidence-based self-management advice.

Reflective and Automatic Processes in Health Care Professional Behaviour: a Dual Process Model Tested Across Multiple Behaviours

Clinicians' behaviours require deliberate decision-making in complex contexts and may involve both impulsive (automatic) and reflective (motivational and volitional) processes. The purpose of this study was to test a dual process model applied to clinician behaviours in their management of type 2 diabetes. The design used six nested prospective correlational studies. Questionnaires were sent to general practitioners and nurses in 99 UK primary care practices, measuring reflective (intention, action planning and coping planning) and impulsive (automaticity) predictors for six guideline-recommended behaviours: blood pressure prescribing (N = 335), prescribing for glycemic control (N = 288), providing diabetes-related education (N = 346), providing weight advice (N = 417), providing self-management advice (N = 332) and examining the feet (N = 218). Respondent retention was high. A dual process model was supported for prescribing behaviours, weight advice, and examining the feet. A sequential reflective process was supported for blood pressure prescribing, self-management and weight advice, and diabetes-related education. Reflective and impulsive processes predict behaviour. Quality improvement interventions should consider both reflective and impulsive approaches to behaviour change.

Service delivery for people with hereditary spastic paraparesis living in the South West of England

Purpose: Hereditary Spastic Paraplegia (HSP) is an inherited nervous system disorder characterized by development of leg weakness, spasms and stiffness. While generally acknowledged that health and social care services can minimise symptoms and improve quality of life, there is a lack of research exploring this from the perspective of people affected by HSP. This qualitative study explored the users and providers experience of using rural services. Method: Focus groups and interviews were undertaken of people with HSP (n = 14), carers (n = 6) and professionals (n = 12), to describe their experience of service provision and to suggest improvements for care. These were taped, transcribed and analysed. Results: Four themes emerged: (1) Diagnosis, symptoms and finding support; (2) Therapy, treatment and the delivery of care; (3) Managing the disease together; and (4) The way forward. Conclusions: Rehabilitation and support for self-management is valued by those affected with HSP throughout the disease trajectory from diagnosis onwards. Key to this is the development of a partnership approach which includes carers. Single point, well-informed, gatekeepers may enhance the coordination and delivery of care in rural areas. These findings underline current guidance promoting a holistic approach for people with neurological conditions.Implications for RehabilitationPeople with HSP see as a high priority the need for additional neuro-physiotherapy services and emotional support services.Single point, well-informed, gatekeepers are essential to coordinate care, especially with rare diseases.Health professionals need more education and training about the disease process and its consequences for people affected by HSP, including the carer burden.People with HSP require better self-management advice, information and support.

How User Characteristics Affect Use Patterns in Web-Based Illness Management Support for Patients with Breast and Prostate Cancer

BackgroundFrequently eHealth applications are not used as intended and they have high attrition rates; therefore, a better understanding of patients’ need for support is warranted. Specifically, more research is needed to identify which system components target different patient groups and under what conditions.ObjectiveTo explore user characteristics associated with the use of different system components of a Web-based illness management support system for cancer patients (WebChoice).MethodsFor this secondary post hoc analysis of a large randomized controlled trial (RCT), in which WebChoice was tested among 325 breast cancer and prostate cancer patients who were followed with repeated measures for 1 year, usage patterns of 162 cancer patients in the intervention arm with access to WebChoice were extracted from the user log. Logistic regression was performed to identify patterns of associations between system use and patient characteristics. Latent class analyses (LCA) were performed to identify associations among the use of different system components and levels of social support, symptom distress, depression, self-efficacy, and health-related quality of life.ResultsApproximately two-thirds (103/162, 63.6%) of the patients logged on to WebChoice more than once, and were defined as users. A high level of computer experience (odds ratio [OR] 3.77, 95% CI 1.20-11.91) and not having other illnesses in addition to cancer (OR 2.10, 95% CI 1.02-4.34) increased the overall probability of using WebChoice. LCA showed that both men with prostate cancer and women with breast cancer who had low scores on social support accompanied with high levels of symptom distress and high levels of depression were more likely to use the e-message component. For men with prostate cancer, these variables were also associated with high use of the self-management advice component. We found important differences between men with prostate cancer and women with breast cancer when associations between WebChoice use and each user characteristic were analyzed separately. High use of all components was associated with low levels of social support among women with breast cancer, but not among men with prostate cancer. High use of e-messages, advice, and the discussion forum were associated with high levels of depression among women with breast cancer, but not among men with prostate cancer. For men with prostate cancer (but not women with breast cancer), high use of symptom assessments, advice, and the discussion forum were associated with high levels of symptom distress. However, it is unclear whether these findings can be attributed to differences related to diagnosis, gender, or both.ConclusionsThis study provides evidence that different user characteristics are associated with different use patterns. Such information is crucial to target Web-based support systems to different patient groups. LCA is a useful technique to identify subgroups of users. In our study, e-messages and self-management advice were highly used components for patients who had low levels of social support and high illness burden, suggesting that patients with these characteristics may find such tools particularly useful.Trial RegistrationClinicalTrials.gov NCT00710658; http://clinicaltrials.gov/ct2/show/NCT00710658 (Archived by WebCite at http://www.webcitation.org/6EmEWZiwz)

Development and pilot testing of a mobile health solution for asthma self‐management: Asthma action plan smartphone application pilot study

Collaborative self-management is a core recommendation of national asthma guidelines; the written action plan is the knowledge tool that supports this objective. Mobile health technologies have the potential to enhance the effectiveness of the action plan as a knowledge translation tool. To design, develop and pilot a mobile health system to support asthma self-management. The present study was a prospective, single-centre, nonrandomized, pilot preintervention-postintervention analysis. System design and development were guided by an expert steering committee. The network included an agnostic web browser-based asthma action plan smartphone application (SPA). Subjects securely transmitted symptoms and peak flow data daily, and received automated control assessment, treatment advice and environmental alerts. Twenty-two adult subjects (mean age 47 years, 82% women) completed the study. Biophysical data were received on 84% of subject days (subject day = 1 subject × 1 day). Subjects viewed their action plan current zone of control on 54% and current air quality on 61% of subject days, 86% followed self-management advice and 50% acted to reduce exposure risks. A large majority affirmed ease of use, clarity and timeliness, and 95% desired SPA use after the study. At baseline, 91% had at least one symptom criterion for uncontrolled asthma and 64% had ≥2, compared with 45% (P=0.006) and 27% (P=0.022) at study close. Mean Asthma Quality of Life Questionnaire score improved from 4.3 to 4.8 (P=0.047). A dynamic, real-time, interactive, mobile health system with an integrated asthma action plan SPA can support knowledge translation at the patient and provider levels.

P247 Impact of Implementing COPD Self Management Plans & Rescue Medications Across 3 Hospitals

IntroductionCOPD is the second leading cause of emergency admissions in the UK. National guidelines for managing COPD advise that patients at risk of having or those who have had an...

Access to self-management education, conservative treatment and surgery for arthritis according to socioeconomic status

There is now a considerable body of research investigating inequities in access to health care for arthritis according to socioeconomic status (SES). Conducted in a range of settings internationally, studies have examined specific socioeconomic factors (including education, income, deprivation and health insurance status) in relation to access to treatment. This chapter provides a comprehensive review of the available evidence on disparities in access to self-management education, conservative therapy and surgical treatment for arthritis, according to SES. There is some evidence of SES disparities in access to self-management education and advice, primary care, specialist care, physical therapy and medications, and strong evidence that people with less education or lower income experience significant disparities in access to joint replacement surgery. In view of research indicating that disparities may adversely affect patient outcomes, examples of initiatives designed to optimise access to care for disadvantaged groups are also described.

Is organizational justice associated with clinical performance in the care for patients with diabetes in primary care? Evidence from the improving Quality of care in Diabetes study

Type 2 diabetes is an increasingly prevalent illness, and there is considerable variation in the quality of care provided to patients with diabetes in primary care. The aim of this study was to explore whether organizational justice and organizational citizenship behaviour are associated with the behaviours of clinical staff when providing care for patients with diabetes. The data were from an ongoing prospective multicenter study, the 'improving Quality of care in Diabetes' (iQuaD) study. Participants (N = 467) were clinical staff in 99 primary care practices in the UK. The outcome measures were six self-reported clinical behaviours: prescribing for glycaemic control, prescribing for blood pressure control, foot examination, giving advice about weight management, providing general education about diabetes and giving advice about self-management. Organizational justice perceptions were collected using a self-administered questionnaire. The associations between organizational justice and behavioural outcomes were tested using linear multilevel regression modelling. Higher scores on the procedural component of organizational justice were associated with more frequent weight management advice, self-management advice and provision of general education for patients with diabetes. The associations between justice and clinical behaviours were not explained by individual or practice characteristics, but evidence was found for the partial mediating role of organizational citizenship behaviour. Quality improvement efforts aimed at increasing advice and education provision in diabetes management in primary care could target also perceptions of procedural justice.

Acceptability and implementation of PhysioDirect telephone advice and treatment services: a multi-perspective

Introduction: In response to long waiting lists and problems with access to primary care physiotherapy, several Primary Care Trusts (PCTs) have developed physiotherapy-led telephone assessment and treatment services. The MRC funded PhysioDirect trial is a randomised trial in four PCTs with a total of 2252 patients comparing this approach with usual physiotherapy care, where patients join a waiting list for face-to-face physiotherapy. Aims: This nested qualitative study aimed to explore and understand the key issues that determine acceptability of PhysioDirect services from the perspectives of patients, physiotherapists and their managers, GPs and commissioners. Methods: Semi-structured interviews were conducted with 57 purposively sampled patients with musculoskeletal problems participating in the randomised trial. Sixteen physiotherapists, 4 physiotherapy managers, 8 GPs and 4 PCT commissioners were interviewed. The framework method was used to analyse the qualitative data. Results: All stakeholder groups perceived the PhysioDirect service as helpful in improving access to physiotherapy care by reducing physiotherapy waiting times. The physiotherapists and their managers perceived that physiotherapists could safely diagnose patients with musculoskeletal problems over the telephone. The GPs and commissioners raised concerns about the accuracy of diagnoses reached over the telephone and perceived it as a triage service which precedes face-to-face contact. Both patients and physiotherapists felt that the lack of visual information impaired their ability to effectively communicate their health problems over the telephone and both perceived that the PhysioDirect assessment was less personal than face-to-face contact. Patients expressed their concerns about trusting the expertise and knowledge of the physiotherapist without knowing them personally, with both patients and physiotherapists seeing the PhysioDirect service as impairing continuity of care. However, both patients and physiotherapists found that the PhysioDirect service worked particularly well as a medium to provide early, self-management advice. Physiotherapy managers found the unpredictable nature of the timing and volume of patient calls to the PhysioDirect service difficult to manage. Physiotherapy managers, GPs and commissioners had divergent views about the information needed to support future implementation of a PhysioDirect service. Service commissioners also appeared to have wide ranging and unrealistic expectations of the type of data that they wanted from physiotherapy managers in order to support decisions about commissioning PhysioDirect services. Conclusions: The PhysioDirect service was perceived by the patients, physiotherapists and their managers, as well as GP and commissioners as broadly acceptable. All three groups felt that the PhysioDirect service improved access to physiotherapy services. Both patients and physiotherapists had some concerns that the PhysioDirect service impaired the development of a good therapeutic relationship.

Medical advice and diabetes self-management reported by Mexican-American, Black- and White-non-Hispanic adults across the United States.

BackgroundDiabetes has reached epidemic proportions in the United States, particularly among minorities, and if improperly managed can lead to medical complications and death. Healthcare providers play vital roles in communicating standards of care, which include guidance on diabetes self-management. The background of the client may play a role in the patient-provider communication process. The aim of this study was to determine the association between medical advice and diabetes self care management behaviors for a nationally representative sample of adults with diabetes. Moreover, we sought to establish whether or not race/ethnicity was a modifier for reported medical advice received and diabetes self-management behaviors.MethodsWe analyzed data from 654 adults aged 21 years and over with diagnosed diabetes [130 Mexican-Americans; 224 Black non-Hispanics; and, 300 White non-Hispanics] and an additional 161 with 'undiagnosed diabetes' [N = 815(171 MA, 281 BNH and 364 WNH)] who participated in the National Health and Nutrition Examination Survey (NHANES) 2007-2008. Logistic regression models were used to evaluate whether medical advice to engage in particular self-management behaviors (reduce fat or calories, increase physical activity or exercise, and control or lose weight) predicted actually engaging in the particular behavior and whether the impact of medical advice on engaging in the behavior differed by race/ethnicity. Additional analyses examined whether these relationships were maintained when other factors potentially related to engaging in diabetes self management such as participants' diabetes education, sociodemographics and physical characteristics were controlled. Sample weights were used to account for the complex sample design.ResultsAlthough medical advice to the patient is considered a standard of care for diabetes, approximately one-third of the sample reported not receiving dietary, weight management, or physical activity self-management advice. Participants who reported being given medical advice for each specific diabetes self-management behaviors were 4-8 times more likely to report performing the corresponding behaviors, independent of race. These results supported the ecological model with certain caveats.ConclusionsProviding standard medical advice appears to lead to diabetes self-management behaviors as reported by adults across the United States. Moreover, it does not appear that race/ethnicity influenced reporting performance of the standard diabetes self-management behavior. Longitudinal studies evaluating patient-provider communication, medical advice and diabetes self-management behaviors are needed to clarify our findings.

Exercise training in recently hospitalized heart failure patients enrolled in a disease management programme: design of the EJECTION-HF randomized controlled trial

The Exercise Joins Education: Combined Therapy to Improve Outcomes in Newly-discharged Heart Failure (EJECTION-HF) study will evaluate the impact of a supervised exercise training programme (ETP) on clinical outcomes in recently hospitalized heart failure patients attending a disease management programme (DMP). Methods This multisite, pragmatic randomized controlled trial enrols patients discharged from participating hospitals with clinical evidence of heart failure who are willing and able to participate in a DMP and considered clinically safe to exercise. Enrolment includes participants with impaired and preserved left ventricular systolic function. Baseline assessment and programme commencement occur within 6 weeks of hospital discharge. The control group DMP includes individualized education and follow-up from a multidisciplinary heart failure team; a weekly education programme for 12 weeks; self-management advice; and medical follow-up. Home exercise is recommended for all participants. In addition, intervention participants are offered 36 supervised, structured gym-based 1 h exercise sessions over 24 weeks. Sessions are tailored to exercise capacity and include aerobic, resistance, and balance exercises. Enrolment target is 350 participants. Primary outcome is 12-month mortality and readmissions. Secondary outcomes include blinded evaluation of depressive symptoms, sleep quality, cognition, and functional status (activities of daily living, 6 min walk distance, grip strength) at 3 and 6 months. A cost-utility analysis will be conducted. This study will enrol a representative group of hospitalized heart failure patients and measure a range of patient and health service outcomes to inform the design of post-hospital DMPs for heart failure. Enrolment will be completed in 2013. ACTRN12608000263392.

OEDIPUS: A cluster randomised trial of education for South Asians with asthma, and their primary and secondary care physicians, to reduce unscheduled care

BackgroundSouth Asians with asthma experience much higher morbidity than whites with asthma in the UK. They also experience worse follow-up in primary care after hospitalisation compared to the white population....

Foot health needs in people with systemic sclerosis: an audit of foot health care provision

The vascular and cutaneous alterations evident in systemic sclerosis/scleroderma (SSc) place the foot at risk of ulceration. The UK Podiatry Rheumatic Care Association (PRCA)/Arthritis and Musculoskeletal Alliance standards of care recommend that all people with SSc should receive at least basic information about their foot health, and that those with foot problems should have access to self-management advice and care where needed. The aim of this study was to evaluate foot health services offered in Leeds (UK) for people with SSc, against nationally agreed standards of care. Ninety-one consecutive patients with SSc were selected from either the connective tissue disease outpatient clinic (n = 70) or the specialist rheumatology foot health clinic (n = 21) at Chapel Allerton Hospital, Leeds Teaching Hospitals NHS Trust. All the patients completed a disease-specific audit tool developed by the UK PRCA that evaluates provision of foot health care for patients with SSc. Sixty-one patients (67%) reported having had foot problems at some point in time and 54 (59%) had current foot problems. Of these 54 patients, 17 (32%) had not received any foot care. Only 36 (39%) of the 91 patients had received any foot health information. This audit demonstrates that patients with SSc have a relatively high prevalence of self-reported foot problems. Foot health care and information are inadequate for people with SSc and foot problems, and preventative information is almost non-existent. Improved foot health information will better empower patients to self-manage low risk problems, and help identify high risk problems which require specialist care.