EL CUERPO DEL REY

Population

We included studies of patients with long-term conditions.

There is no definitive list of such conditions and we adopted the generic definition of a long-term condition as one that cannot be cured but can be managed through medication and/or therapy.

This included common conditions such as diabetes, asthma, coronary heart disease, as well as more rare disorders and mental health conditions such as depression, anxiety and psychosis. We also included studies recruiting patients with a mixture of long-term conditions, as well as those recruiting on the basis of multimorbidity.

As well as using clinical and diagnostic labels reported in the studies, we also structured aspects of our review on potentially important characteristics of long-term conditions discussed at the first PRISMS workshop (Table 1).31

We excluded subjects< 18 years of age and studies conducted in the developing world.

TABLE 1 Characteristics of long-term conditions discussed at the first PRISMS workshop31

Cluster Exemplar conditions

1. Long-term conditions with marked variability in symptoms over time

Asthma, low back pain, type 1 diabetes, chronic pain, depression, schizophrenia, inflammatory bowel disease, migraine, endometriosis

2. Largely asymptomatic long-term conditions in which management is directed at stopping an event or reducing complications

Hypertension, type 2 diabetes, epilepsy, allergy/anaphylaxis, atrial fibrillation, chronic kidney disease

3. Ongoing symptomatic long-term conditions with exacerbations

Chronic obstructive pulmonary disease, congestive heart failure, multiple sclerosis

4. Ongoing symptomatic long-term conditions with little variability

Osteoarthritis, dementia, chronic fatigue syndrome, progressive neurological conditions (Parkinson_{’s, multiple sclerosis, motor} neuron disease)

Intervention

For the purposes of the review, we defined a self-management support intervention as:

An intervention primarily designed to develop the abilities of patients to undertake management of health conditions through education, training and support to develop patient knowledge, skills or psychological and social resources.

Categories of support of relevance to the review are outlined in Table 2. It is important to note that we excluded self-management undertaken without input, guidance or facilitation by services. Although an enormous amount of self-management is undertaken without any support from services, it is rarely the subject of intervention studies.

We included all formats and delivery methods (group or individual, face to face or remote, professional or peer led).

In line with the original brief, we included interventions across the pyramid of care for long-term conditions. After initial screening of a proportion of the studies, we distinguished the following types post hoc:

l ‘pure’ self-management, with self-management materials provided without any additional support

beyond that provided in usual care

l supported self-management (with up to 2 hours of additional support in total from a health professional or trained peer)

l intensively supported self-management (with more than 2 hours of additional support from a health professional or trained peer)

l case management (with more than 2 hours of additional support from a health professional or trained peer, and support from a multidisciplinary team as part of the intervention protocol).

TABLE 2 Types of self-management support

Type Examples

Education/training for providers Training programmes which help providers counsel patients more skilfully, particularly in relation to behaviour change Education/training for patients/carers Disease-specific education or behaviour change interventions.

Modes of education delivery may include online, paper based, face to face or through audio/visual technologies

Decision support Support to make shared decisions about treatment options Monitoring and feedback Telehealth, such as telephone-, mobile phone- or computer-

based monitoring methods, with monitoring by professionals and potential access to a wider team

The adoption of the 2-hour threshold was an arbitrary empirical threshold that provided a reasonable distribution of studies among the different categories.

Two authors independently assessed the type of intervention and disagreements were identified and resolved through discussion. For analytical purposes we combined the first three categories into a broad ‘self-management’ category and compared that with ‘case management’.

Comparisons

We included studies for which a self-management support intervention was additional to usual care and compared this against usual care alone or against studies for which the self-management support intervention was compared with a more intensive‘usual care’ intervention (e.g. ‘hospital at home’ vs. conventional hospital use). We excluded studies for which two versions of self-management support interventions were compared, as such comparisons did not allow assessment of the impact of the self-management support per se.

Outcomes

We extracted data on the effect of self-management interventions on core types of health-care utilisation. Our focus was on comprehensive measures of costs (i.e. summaries including multiple sources of cost) or major cost drivers (i.e. hospital use). Other, more minor, costs (such as medication and primary care visits) were identified but not analysed. Our focus was on hospital use and total costs.

We also separately extracted data on outcomes relating to patient QoL and health outcomes. These included standardised measures of disease-specific outcomes, generic QoL and depression/anxiety. We excluded measures of psychological or clinical variables that did not provide a direct assessment of health or QoL, such as self-management behaviour, self-efficacy, glycosylated haemoglobin (HbA1c) or

forced expiratory volume (FEV), as these are likely to be unreliable indicators of health-related quality of life (HRQoL).32