1) System modelling of care pathway in relation to self-management
Work package 1 has developed a quantified decision model which examines the flow of patients with longer term depression through the Sheffield NHS care system and the resulting costs and outcomes. The model has been populated with existing service data and provides a tool to investigate the impact of making changes in the system, and increasing support for patient self-management. The model is currently being used to assess the likely cost effectiveness of system improvements which have been shortlisted for testing in work package 3.
Mathematical model of the NHS care pathway for longer term depression
|Jon Tosh, ScHARR, University of Sheffield ||email@example.com|
|Ben Kearns, ScHARR, University of Sheffieldfirstname.lastname@example.org|
What is the objective of Work Package 1?
The objective of Work Package 1 has been to develop a mathematical model to represent in summary form the way current NHS psychological services for people with longer term depression operate.
A mathematical model is useful because it allows us to test out potential changes to the care system before trying them in real life. It enables us to get an idea of what the impact, costs and benefits might be of a particular change in service design on the numbers of people moving through the system, and the possible outcomes. The model is reliant on evidence from research studies, data from current NHS services, and experts’ knowledge and assumptions. Therefore the model is not perfect because the evidence available may be limited, and also because it simplifies what is a very complex set of services.
However, the model is a research tool, which allows us to see where potentially beneficial changes could be made.
Methods for Work Package 1
The first stage of Work Package 1 was to develop a ‘conceptual model’. This described how current NHS services for longer term depression are organised, and helped us, as researchers, to understand the current service provision. A wide group of people (clinicians, service users, researchers, managers, commissioners) were involved in developing this conceptual model, because we wanted it to represent everyone’s views of the main service configurations.
In the next stage of the work, the conceptual model was used to define a mathematical model of services. It also showed us what evidence we required in order to develop the model to represent what actually happens on the ground. We sought to gather this evidence from a range of sources, and have done this, but gaps remain where we need either more evidence or to make sensible ‘guesses’. In these instances, we have used expert opinion to provide estimates of what happens in real life.
Finally, the model has been used to test out some of the potential service changes shortlisted for Work Package 3, and also to identify other potential improvements that could be made.
Current status of the model
At present a revised version of the model is working. A lot of the effort has gone in to getting the structure of the model developed. Keeping it up to date is a (relatively more) straightforward task. As new evidence becomes available, we will continue to feed it in to the model to improve its accuracy. We are also starting work on developing some appropriate tools to help commissioners make use of the model in costing future service options. For further information please contact Ben Kearns.
A final report on the results of Work Package 1 will be available shortly.
2) Understanding self-management: learning from the patient
Work package 2 has used qualitative methods to develop an understanding of self-management and recovery in long-term depression based on service users' views and experiences of managing their condition and the treatments they have received. This knowledge has been used to develop candidate ideas for work package 3 which aim to enhance users' well-being and support self-management.
IQUESTS WP2 - Findings from the qualitative interviews with people with longer term depression (October 2011)
We have completed in-depth interviews with 20 people with varied backgrounds and experiences, as shown in the table below:
|White non UK||1|
|BME non UK||1|
|Severity of depression||Mild||2|
|Ticked all 3||3|
|Length of depression||Average||16 years|
|Range||1.5 - 40 years|
|Type of depression||Dysthymia and recurrent depression||3|
|Persistent major depression||5|
|Other health problems||Physical health||9|
|Physical & mental health||1|
|Services used (some ticked more than one category)||Primary||17|
|Manage well (self-reported)||Yes||9|
|Ticked both boxes||3|
Our team of 5 researchers included service users and professionals of different disciplines. Together we used a method of analysis to understand the way people viewed their lives and to interpret what was important to them in developing ways of self-managing depression over time. This was Interpretive Phenomenological Analysis (Smith, J., Flowers, P., & Larkin, M. 2009, Interpretative Phenomenological Analysis, Theory, Method and Research SAGE Publications Ltd)
People told us about the many different ways which help them to manage depression, as shown in the accompanying diagram. The five main themes were: The Self, Coping Strategies, Services, Experience of Depression and Other Health Concerns, Environment and Social Relationships. Some things people did themselves. Other things involved people helping, such as friends, family, psychological therapists or other mental health services, including those in primary care and the voluntary sector.
The strategies included:
- Being able to talk to someone
- Doing things to get going
- Learning to recognise when you are becoming unwell and taking action
- Getting absorbed in activities to take the focus away from your distress
- Finding new ways of thinking about situations and of relating to other people
- Doing things that brought enjoyment and a sense of achievement including roles you value at home, socially or at work
- Mutual support and friendship.
People praised several individual therapists and health staff for being highly knowledgeable and skilled, respectful, trustworthy and really listening. They thought that the organisation of NHS services and some staff behaviour could be improved. These are some of the issues that
were important to them:
- The need to be treated as an individual
- All staff being considerate and polite
- Being given control to regain a sense of wellbeing
- Getting the right help at the right time, with information and choice given
- The value of being supported to get engaged in a variety of activities, such as leisure, socialising and work.
Balancing - People became skilled at balancing different types of activities such as leisure, sleep and work; rest, stimulus and boredom. They also paced their life to cope with demand and stress, knowing their own triggers for depression. They learnt to balance responsibilities for and attention to the needs of themselves and others in their families or work.
Promoting change – Developing effective self-management took time and improved with getting older. There was a familiarity with the ebb and flow of depression. People got used to dealing with depression and did not have to attend to it all the time. Life events could have a big impact, sometimes surprising people with how resilient they are. Changes in attitude, such as feeling grateful or having more hope also promoted self management.
How to change – People learnt to develop their own strategies through trial and error and practicing new activities or routines. Learning from others helped, as well as getting constructive feedback from those who knew them. It was important to counteract the inertia and difficulty with motivation by doing things, however small, and building activity up. It was noticeable that people did not have a single strategy but integrated effective ways of thinking, acting, connecting with others and basic self care. Crucially, it was vital to develop self-awareness, self-recognition and self-acceptance.
Implications for services and therapists include:
Support to help people develop self management needs to be highly individualised and suited to personal preferences. What would be helpful for one person may not be helpful for another.
Both 'how' a person copes and 'what' they do are important for self-managing depression. This means that the various coping strategies and supports that a person develops as well as their choice of activities are equally important and inter-related.
3) Testing system improvements
Work package 3 is about the translation of learning from work packages 1 and 2 into real changes in service delivery. This will be achieved in two ways: through evaluating changes in the way in which services for people suffering from chronic depression are organised so as to assist more people more effectively; and through the testing of self-management innovations within the care of individual service users.
Incorporating Self-Management into Psychological Services
|Tom Ricketts, Sheffield Health and Social Care Trustemail@example.com|
Work Package 3 builds on work packages 1 and 2, by taking forward for development up to six candidate ideas for system and/ or service improvement. The six ideas are those derived from the research, a Consensus Generating workshop held in November 2011, and a Delphi survey held in the early part of 2012. These ideas will be tested out via the Sheffield Health & Social Care Trust (SHSC) Focused Depression Team. A dedicated research clinic run by this team is being set up for this purpose.
The aim of testing the ideas is to find out whether the interventions are seen as feasible, acceptable and useful by both service-users and therapists in the service.
Over the next 15 months, 36 people who are users of Sheffield Focused Depression Team service will be recruited to take part. Each of the interventions/ service improvement ideas will be tried by six service-users in addition to the usual care they receive from the service. Therapists in the team who elect to take part will be trained and supervised in the use of each of the interventions, and will also be asked about their perceptions of how well they work.
We will assess the effect of the ideas through a range of clinical outcome measures and also through research interviews, focus groups, and audio recordings of therapy sessions, with staff and service users. The service-users will be monitored for up to 15 months after they finish the intervention so that we can explore the longer-term implications.
We are working on the detailed implementation of each of the six interventions. Although we have agreement in principle, a further ethical review is required before we can start the provision. It is anticipated that service-users will start to be recruited and to receive the interventions from June 2012.
The Six Innovations
- Widening access to non therapy services – this will involve developing support to assist people to access a range of non-therapy services.
- Work for well-being - this will help people to access work, volunteering or training opportunities.
- Mindfulness based relapse prevention – this will involve 8 group sessions for people to learn mindfulness techniques to help them manage their depression and to avoid relapse.
- Self-referral back to therapist after discharge – this will give people the option of revisiting their therapist for a 'top up' session after they have been discharged when they may be finding things difficult.
- Help to get started and continue doing things - this will provide people with support to help them do activities that they want to do but find difficult because of their depression, such as starting a new exercise class, going to the supermarket or visiting friends.
- Better management and prevention of drop-out - this will support people to understand more about the therapy pro-cess and to put plans in place to help them avoid dropping out.
Outcome Measures for IQuESTS WP3
The measures being used are CORE-OM, Psyclops, PHQ-9, STORI. We will also use a measure called INSPIRE as part of the qualitative interviews with users and clinicians.
Clinical Outcomes in Routine Evaluation Outcome Measure (CORE-OM) A routine outcome measure for psychological therapies that covers four domains: well-being; social functioning, problems/symptoms and risk to self and others.
Psychological Outcomes Profiles (Psychlops)
A short mental health outcome measure, scored by the service user and used to measure change from before to after a psychological therapy. PSYCHLOPS consists of three domains: Problems, Function and Wellbeing. The service user describes the most important of each of these, and then scores them on: "How much has it affected you over the last week?" or "How hard has it been to do this thing over the last week?"
Patient Health Questionnaire (PHQ-9)
A nine item depression scale that can be used to monitor treatment. It identifies whether the person has depression and gives a severity of depression score.
The PHQ-9 is based directly on the diagnostic criteria for major depressive disorder in the Diagnostic and Statistical Manual Fourth Edition (DSM-IV).
Stages of Recovery Instrument (STORI)
A self-report measure for the assessment of the stage of recovery from mental distress. It is intended to measure constructs that are more meaningful to consumers than conventional outcome measures. It covers hope, responsibility, identity and meaning of life.
Qualitative interviews developed from the INSPIRE tool
This asks about the service user's experiences of the support they receive from a mental health worker for their recovery including the quality of their relationships with staff.