Patient education and self-management programs in arthritis

♦ Arthritis self-management programs (ASMPs) are integrated into many clinical practice guidelines and policies, and are the core business of Arthritis Foundations.

♦ Australian Arthritis Foundations are embarking on a National Quality Assurance Program which should raise awareness and improve confidence in such programs.

♦ ASMPs aim to empower people, improve quality of life while living with chronic disease, increase healthy activities and improve self-monitoring — each of which can assist with clinical management, but can be difficult to evaluate.

♦ Although there is modest high-quality evidence of traditional “clinical outcomes” from ASMPs, these programs are strongly endorsed by consumers, are being used as a vehicle for healthcare reform, and have the potential to substantially improve public health.

♦ Coordinated national delivery of patient education programs has the potential to improve healthcare and outcomes for people with arthritis.

Measurement issues in the evaluation of chronic disease self-management programs

Objectives: 

Assessment of proximal outcomes of self-management programs : translation and psychometric evaluation of a German version of the Health Education Impact Questionnaire (heiQtm)

Purpose This paper describes the translation, cultural adaption, and psychometric evaluation of a German version of the Health Education Impact Questionnaire (heiQ™), a widely used generic instrument assessing a wide range of proximal outcomes of self-management programs.

Methods The translation was carried out according to international standards and included forward and backward translations. Comprehensibility and content validity were tested using cognitive interviews with 10 rehabilitation inpatients. Psychometric properties were examined in rehabilitation inpatients (n = 1,202) with a range of chronic conditions. Factorial validity was assessed using confirmatory factor analysis; concurrent validity was explored by correlations with comparator scales.

Results The items of the German heiQ™ were well understood by rehabilitation inpatients. The structure of the eight heiQ™ scales was replicated after minor adjustment. heiQ™ scales had higher correlations with comparator scales with similar constructs, particularly mental health concepts than with physical health. Moreover, all heiQ™ scales differentiated between individuals across different levels of depression.

Conclusion The German heiQ™ is comprehensible for German-speaking patients suffering from different types of chronic conditions; it assesses relevant outcomes of self-management programs in a reliable and valid manner. Further studies involving its practical application are warranted.

Investigating the outcomes of two chronic disease self-management programs and understanding the correlates of completion for each program

Chronic disease affects 80% of adults over the age of 65 and is expected to increase in prevalence. To address the burden of chronic disease, self-management programs have been developed to increase self-efficacy and improve quality of life by reducing or halting disease symptoms. Two programs that have been developed to address chronic disease are the Chronic Disease Self-Management Program (CDSMP) and Tomando Control de su Salud (TCDS). CDSMP and TCDS both focus on improving participant self-efficacy, but use different curricula, as TCDS is culturally tailored for the Hispanic population. Few studies have evaluated the effectiveness of CDSMP and TCDS when translated to community settings. In addition, little is known about the correlation between demographic, baseline health status, and psychosocial factors and completion of either CDSMP or TCDS. This study used secondary data collected by agencies of the Healthy Aging Regional Collaborative from 10/01/2008–12/31/2010. The aims of this study were to examine six week differences in self-efficacy, time spent performing physical activity, and social/role activity limitations, and to identify correlates of program completion using baseline demographic and psychosocial factors. To examine if differences existed a general linear model was used. Additionally, logistic regression was used to examine correlates of program completion. Study findings show that all measures showed improvement at week six. For CDSMP, self-efficacy to manage disease (p = .001), self-efficacy to manage emotions (p = .026), social/role activities limitations (p = .001), and time spent walking (p = .008) were statistically significant. For TCDS, self-efficacy to manage disease (p = .006), social/role activities limitations (p = .001), and time spent walking (p = .016) and performing other aerobic activity (p = .005) were significant. For CDSMP, no correlates predicting program completion were found to be significant. For TCDS, participants who were male (OR=2.3, 95%CI: 1.15–4.66), from Broward County (OR=2.3, 95%CI: 1.27–4.25), or living alone (OR=2.0, 95%CI: 1.29-–3.08) were more likely to complete the program. CDSMP and TCDS, when implemented through a collaborative effort, can result in improvements for participants. Effective chronic disease management can improve health, quality of life, and reduce health care expenditures among older adults.

Do cognitive, language, or physical impairments affect participation in a trial of self-management programs for stroke?

BACKGROUND: Research studies may have limited generalizability when survivors of stroke with physical, language, or cognitive impairments are excluded. AIMS: To assess whether presence of cognitive, language, or global impairments affects participation in self-management programs.

METHODS: Stroke survivors were recruited in South Australia from seven hospitals or via advertisements into a randomized controlled trial (1:1:1 ratio) of a Stroke Self-Management Program, the Stanford chronic condition self-management program, or standard care. Impairment status was measured using: Cognistat (cognition), Frenchay Aphasia assessment (language), modified Rankin Score (mRS; where score 3-5 = global disability).

PRIMARY OUTCOMES: participation (i.e. booked, accessed, and completed a program (defined as attending ≥ 50% of sessions)) and safety (i.e. adverse events). Outcomes were compared by impairment status. RESULTS: Among 315 people screened 143/149 eligible were randomized (median age 71 years; 41% male; with impairments: 62% cognitive, 34% language, 64% global disability). Participation did not differ by cognitive or language impairment status (cognitive 75%, no cognitive 68%, p = 0.54; language 78%, no language 69%, p = 0.42). However, participation did vary by global impairment status (global disability 61%, no disability 96%, p < 0.001). Participants with cognitive impairment experienced more adverse events (severe n = 9 versus no cognitive impairment n = 1).

CONCLUSION: Survivors of stroke with cognitive, language, or global impairments are able to participate in self-management programs and should be included in these types of research studies or programs. Reduced participation by those with global disability and the possibility of more adverse events in people with cognitive impairments needs to be considered.

Self-management of cancer treatment-related fatigue, nausea, vomiting and oral mucositis in Chinese cancer patients

Background: Treatment-related symptoms continue to place a significant burden on many cancer patients. Many side effects require patients to engage in a range of self-management actions. While some studies have explored self-management of treatment-related side effects in Western settings, very few studies were identified that described the self-management practices of cancer patients in China. Objective: The purposes of this study are to: (1) Investigate Chinese cancer patients. self-management behaviours in dealing with the fatigue, nausea/vomiting and oral mucositis that result from treatment, as well as the perceived effectiveness of these behaviours and related self-efficacy in performing them. (2) Explore factors influencing symptom self-management behaviours using the Cancer Symptom Self-management Framework based on Grey, Knafl and McCorkle.s (2006) self-management framework as a guide. Methods: This study was divided into two phases. Phase One consisted of the translation and modification of two instruments. The adaptation of these instruments to ensure applicability in the Chinese context was achieved through semi-structured interviews with six cancer patients, and content evaluation with eight experienced oncology nurses. A pilot study was conducted with nine cancer patients to trial the questionnaire set in the Chinese context. Based on the results of Phase One, Phase Two involved a cross-sectional survey of Chinese cancer patients undergoing cancer treatment using these instruments. A total of 277 chemotherapy patients with fatigue and/or nausea and vomiting, and 100 radiotherapy patients with oral mucositis were surveyed. Results: Participants in this study reported a variety of self-management behaviours to cope with fatigue, nausea, vomiting and oral mucositis. There are some consistencies as well disparities between strategies that are frequently used and those rated as effective. For fatigue self-management, participants were more likely to use strategies related to rest and sleep, while activity enhancement strategies were rated as achieving higher relief. For nausea and vomiting self-management, dietary modification and taking medication were most frequently used and rated as moderately effective. Psychological strategies were used by more than a third of participants and were rated as mildly effective. Some other infrequently used strategies, such as distraction by keeping busy and acupressure, were rated as moderately effective. For oral mucositis self-management, having soft, bland food and keeping the mouth moisturised were most frequently reported and they were rated as achieving moderate relief. A prescribed mouthwash was used by most but not all participants and brought moderate relief. In general, patients had low-to-moderate self-efficacy in nausea and vomiting self-management behaviours, moderate self-efficacy in fatigue self-management behaviours, and low-to-moderate self-efficacy in oral mucositis self-management behaviours. In terms of the factors influencing symptom self-management, different predictors were identified affecting engagement in fatigue, nausea/vomiting and oral mucositis self-management behaviours. Self-efficacy scores of different behaviours were consistently found to be a positive predictor of the relief level from corresponding behaviours, after controlling for other variables. Perceived social support from health care professionals was identified as an important factor influencing nausea and vomiting self-management behaviours, while neighbourhood support was important for fatigue self-management. In addition, symptom distress was identified as an important factor influencing nausea and vomiting self-management. Conclusion: Similar to reports from overseas, Chinese cancer patients initiate a wide range of self-management behaviours in response to treatment-related side effects. While some behaviours were reported to provide relief, many did not. Given these results, this study has a number of practical implications for health care professionals, particularly in relation to developing tailored self-management programs for fatigue, nausea, vomiting and oral mucositis. Additionally, this study suggests a number of theoretical implications and directions for future research. It is envisaged that these recommendations may pave the way for further studies understanding and promoting cancer symptom self-management in Chinese people affected by cancer.

Development and testing of an iPad application for teaching self-management to heart failure patients. (Nursing/Allied Health Professional Investigator Award)- Abstract

Purpose: Heart failure (HF) is the leading cause of hospitalization and significant burden to the health care system in Australia. To reduce hospitalizations, multidisciplinary approaches and enhance self-management programs have been strongly advocated for HF patients globally. HF patients who can effectively manage their symptoms and adhere to complex medicine regimes will experience fewer hospitalizations. Research indicates that information technologies (IT) have a significant role in providing support to promote patients' self-management skills. The iPad utilizes user-friendly interfaces and to date an application for HF patient education has not been developed. This project aimed to develop the HF iPad teaching application in the way that would be engaging, interactive and simple to follow and usable for patients' carers and health care workers within both the hospital and community setting. Methods: The design for the development and evaluation of the application consisted of two action research cycles. Each cycle included 3 phases of testing and feedback from three groups comprising IT team, HF experts and patients. All patient education materials of the application were derived from national and international evidence based practice guidelines and patient self-care recommendations. Results: The iPad application has animated anatomy and physiology that simply and clearly teaches the concepts of the normal heart and the heart in failure. Patient Avatars throughout the application can be changed to reflect the sex and culture of the patient. There is voice-over presenting a script developed by the heart failure expert panel. Additional engagement processes included points of interaction throughout the application with touch screen responses and the ability of the patient to enter their weight and this data is secured and transferred to the clinic nurse and/or research data set. The application has been used independently, for instance, at home or using headphones in a clinic waiting room or most commonly to aid a nurse-led HF consultation. Conclusion: This project utilized iPad as an educational tool to standardize HF education from nurses who are not always heart failure specialists. Furthermore, study is currently ongoing to evaluate of the effectiveness of this tool on patient outcomes and to develop several specifically designed cultural adaptations [Hispanic (USA), Aboriginal (Australia), and Maori (New Zealand)].

Feasibility of using telecommunications technology in a Cardiac-Diabetes Self-Management Program

Background: Evidence demonstrates self-management programs are an effective approach to assist patients with chronic diseases such as type 2 diabetes or cardiac conditions to modify their lifestyle for better managing their conditions. Using information technology (IT) has great potential to support self-management programs and assist patients to fulfill their goals in managing their conditions more efficiently and effectively. Examples of different types of technology used in self-management programs that have limited research support include: text messages, telephone followup, web-based programs, and other internet-assisted education. But little is known about the applicability and feasiability of different forms of technology for patients with chronic diseases such as those with type 2 diabetes and critical cardiac conditions. Furthermore, although there is some evidence of the benefits of using IT in supporting self-management programs, further research on the use of IT in such programs is recommended. Objective: To develop and pilot test an integrated Cardiac- Diabetes Self-Management Program (CDSMP) incorporating telephone and text-message follow-up. Methods: A pilot study using randomised controlled trial is conducted in the coronary care unit (CCU) in a Brisbane metropolitan hospital in Australia to collect data on patients with type 2 diabetes admitted to CCU. The main outcomes included self-efficacy levels, knowledge, and quality of life. Results: Initial results reveal that patients with diabetes admitted to the CCU in the experimental group did improve their self-efficacy, and knowledge levels. Acknowledgements: This Project is funded by QUT Early Career Researcher Research Grant

Multidisciplinary team approach for a peer-support based cardiac-diabetes self-management program

Background: Cardiac patients with diabetes are at higher readmission rates (22%) compared to only 6% for those patients without diabetes. Evidence shows benefits of peer support and using information technology to improve chronic illness and achieve better health outcomes. However limited evidence suggests that cardiac or diabetes self-management programs incorporating peer supporters (patients with similar conditions) or telephone and text-messaging, have improved health outcomes and reduce health care utilisations. A multidisciplinary research team approach is crucial to accommodate the complex aspects of delivering intervention programs for these at-risk patients. However, challenges such as the inconsistency in significance of key concepts across research fields, as well as practical and operational issues within different contexts are often experienced. Aims: To develop an effective multidisciplinary team approach to deliver a peer support based cardiac-diabetes self-management program incorporating the preparation of lay personnel to provide telephone and text-messaging follow up support. Methods: The approach was used for a multidisciplinary project using randomised controlled trial. Results: The findings from multidisciplinary team approach reveal the feasibility of a Peer support based cardiac-diabetes self-management program.