Professor Richard Osborne1
Professor Marita McCabe1
Dr Sharon Haymes2
Professor Rachelle Buchbinder3
Dr John Furler4
Dr Jenni Livingstone1
Dr Sarity Dodson1
Dr Stuart Cavill5
1 Deakin University
2 Centre for Eye Research, Australia
3 Monash Department of Clinical Epidemiology and Cabrini Hospital
4 University of Melbourne
5 Southern Health
6 Arthritis Victoria incorporating Osteoporosis Victoria
Beyond Blue Victorian Centre of Excellence
Project completion year
Historically, ‘self-management’ has been understood in terms of a specific set of behaviours and capacities, including certain healthy lifestyle behaviours, actively managing one’s own relationship with health care providers, self-monitoring and initiation of contact with health service providers when necessary. People who were doing these things were considered to be ‘self-managing’ and people with the capacity to do all these things were considered to have the ‘capacity to self-manage’. People were often selected into self-management programs based on an assessment of this capacity. An alternative view is that everyone manages their own health conditions for at least some of the time and that this management may be helpful or destructive.
It was always a primary aim of this project to develop a program that would address the needs of people in which their physical health conditions and mental health conditions interact in varied and complex ways. In pursuit of this aim, the researchers sought to develop a program guided by the following principles:
- minimally restrictive selection criteria to ensure that the program was accessible to people who would be deemed unsuitable for many other self-management support programs
- flexibility and customisability of approach to increase the capacity of the program to meet the broadest possible range of needs for the broadest possible range of participants
- effective clinical risk-management processes to allow people with serious mental health conditions to participate.
To refine the web-based program and test the implementation, utility and benefit of an intervention that uses web-based resources to provide self-management support and clinical interventions to people with musculoskeletal conditions and concomitant depression and/or anxiety.
Implementation and evaluation of the pilot
During implementation of the program, the health psychologist collected information relating to assessment, progress and outcomes from a clinical perspective. This included an exit interview with all but two of the total participants (95 per cent). Additionally, participants completed self-assessment features built into the program.
An evaluation interview was conducted with 84 per cent of total participants and included open-ended questions regarding their experience with the program and questions relating to usability of the website.
Pre- and post-questionnaires were received from 84 per cent of participants (a different mix to those who participated in the evaluation interview).
Usability interviews were also conducted with six participants during the program implementation. Website data was extracted once the program was completed.
Who were the participants of the Stepping Up pilot program?
The Stepping Up program recruited 43 people, the majority of which were women (77 per cent). The average age was 48, with the age range from 22 to 85.
Arthritis Victoria was the main referral source, with 60 per cent of total referrals coming through the Arthritis Victoria website or the Young Woman’s Arthritis Support Group email list; all of which were women. Five of the 10 men were referred by CI/ERG members who had placed deliberate emphasis on recruiting men.
Participants reported a broad range of primary musculoskeletal (MSC) conditions, including rheumatoid arthritis (33 per cent), osteoarthritis (30 per cent), fibromyalgia (7 per cent) and other forms of arthritis, back pain and chronic pain conditions.
A significant number of participants reported a current mental health diagnosis of anxiety or depression (33 per cent). However, the majority reported past history of anxiety (70 per cent) or depression (80 per cent) and of those participants with a history of depression or anxiety (n=37), 73 per cent reported having experienced both.
In addition to the complex history of musculoskeletal condition and co-morbid anxiety or depression, 49 per cent of participants also reported between one and three additional chronic health conditions, including diabetes, respiratory conditions and additional musculoskeletal conditions.
Program input and completion by participants
Of the 43 participants enrolled in the Stepping Up program, three participants did not start the program. Of the 43 participants recruited to the program, 34 (79 per cent) completed the program to the satisfaction of the health psychologist. Six participants discontinued the program, including three participants who were dissatisfied in terms of the tone of the program and its content. One participant struggled with the technical aspects of the program interface and another had too many competing priorities.
A number of variables were measured to determine program outcomes for each client who participated in the program. This analysis includes all participants who commenced the program and who participated in an exit interview with the health psychologist (n=38). The health psychologist made a clinical judgment for outcomes based on the assessment and exit interviews, and workbook entries and self assessment by each participant. Outcomes included:
- improvements on the standardised questionnaires administered before and after the pilot
- improvement in main concern (mood, anxiety, pain, sleep, fatigue, relationship, stress) – self-reported, health psychologist judgement
- behaviour change – self-reported
- other perceived benefits.
Overall, the outcomes from the pilot were extraordinary. Although there was no direct comparator group, there are substantial comparative data sets available for some of the instruments that were used. The researchers also have considerable experience in evaluating self-management and similar programs and have an understanding of what is usually achieved in terms of outcomes such as changes in health related behaviours and the proportion of people who make extremely positive (effusive) comments at interview.
Some of the highlights in the outcomes data presented in this section included:
- very large changes in the negative emotions, skills and social support scales of the heiQ compared to all Australian programs (in some scales the changes appear to be the largest seen in Australia)
- average improvement in the AQoL that is approximately three times the minimum meaningful change, which is very large for such a short intervention (in utility terms it means that people would be willing to trade approximately 1.5 months of their life for the outcomes that were achieved)
- very high proportion of extremely positive comments at follow-up interviews (above 50 per cent; around 20 per cent is more common)
- very high proportion of people who listed specific changes in behaviour that they have made and which they directly attribute to the program (> 90 per cent whereas <50 per cent is common for self-management support programs).