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National Clinical Guideline Centre (UK). Stroke Rehabilitation: Long Term Rehabilitation After Stroke [Internet]. London: Royal College of Physicians (UK); 2013 May 23. (NICE Clinical Guidelines, No. 162.)
7.1. Providing support and information
Provision of appropriate, accurate and timely information is a key component of post-stroke care. It is a core recommendation of many policy documents, such as the National Stroke Strategy61. Despite this, many research reports indicate that patients and their families feel their information needs have been poorly met. However information provision is a nebulous concept and it is difficult to determine an appropriate objective outcome. It is acknowledged that information is commonly passively available through leaflets. The GDG sought to identify effective active methods of information provision which would provide positive benefits in terms of mood and activities of daily living.
7.1.1. Evidence review: What is the clinical and cost-effectiveness of supported information provision versus unsupported information provision on mood and depression in people with stroke?
| Clinical Methodological Introduction | |
|---|---|
| Population: | Adults and young people 16 or older who have had a stroke |
| Intervention: | Supported information giving (active information provision, encourage feedback, peer support, interactive computer programme) |
| Comparison: | Unsupported Information (such as, leaflets and notice board information) |
| Outcomes: | Impact on mood/depression:
|
7.1.1.1. Clinical evidence
Searches were conducted for systematic reviews and RCTs comparing interventions of supported information with unsupported information for adults or young people of 16 years old after stroke. Only studies with a minimum sample size of 20 participants (10 in each arm) were selected. Five (5) RCTs were identified.
Table 38 summarises the population, intervention, comparison and outcomes for each of the studies.
Table 38
Summary of studies included in the clinical evidence review. For full details of the extraction please see Appendix H.
Comparison: Supported information versus unsupported information
Table 39
Supported information versus unsupported information- clinical study characteristics and clinical summary of findings.
7.1.1.2. Economic evidence
Literature review
No relevant economic evaluations comparing supported information provision with usual care were identified.
Intervention costs
In the absence of cost-effectiveness analysis for this review question, the GDG considered the expected differences in resource use between the comparators and relevant UK NHS unit costs. Consideration of this alongside the clinical review of effectiveness evidence was used to inform their qualitative judgement about cost effectiveness.
The studies included in the clinical review used different interventions. Typical unit costs relevant to the interventions in the studies included in the clinical review were reviewed by the GDG in conjunction with the study intervention descriptions to aid consideration of cost effectiveness. The study interventions are described in full in Table 38. Estimated unit costsh for relevant personnel are listed below.
- A multi-disciplinary stroke education program was described by Rodgers, 1999218 consisting of one 1-hour group session and six 1-hour sessions post-discharge. Each session was led by a member of the team. The usual care comparator included routine communication with healthcare professionals and a telephone hotline number.
- District nurse (band 6) – £51 per hour spent with a patient
- Clinical psychologist (band 8a) - £136 per hour of client contact
- Speech and language therapist (band 6) – £47 per hour of client contact
- Occupational therapist (band 6) – £45 per hour of client contact
- Physiotherapist (band 6) – £48 (community) and £45 (hospital) per hour of client contact
- Social worker – £54 per hour of client-related work
- Ellis, 200575 looked at an intervention provided by a Stroke Nurse Specialist. The patients were reviewed monthly for 3 months. This intervention was additional to usual care.
- Nurse specialist (band 7– nurse advanced) - £81 per hour of client contact.
- Lowe, 2007159 assessed the provision of information booklets to patients. The booklet included general information about stroke as well as sections were patient specific information could be entered. A discussion (15–20 minutes) about the content of the booklet was held with patients by a member of the multidisciplinary team prior to discharge – see relevant unit costs above. This intervention was additional to usual care.
- Computer-generated tailored information was provided to patients in the study by Hoffman, 2007. Patients were able to select the type and amount of information from a range of topics 112. A research nurse also elaborated on the topics and placed the booklet (generated from Microsoft Word) in personalised folders. This intervention was additional to usual care.
- Nurse (band 6 – nurse specialist) - £43 per hour of patient contact.
- Patients were given a stroke recovery manual and invited to attend education meetings every two weeks in the study by Smith, 2004243. The manual contained information about stroke, agreed goals as discussed at the meetings as well as a section for carers. The meetings (approximately 20 minutes) were with a multidisciplinary team (doctor, nurse, physiotherapist and occupational therapist). In usual care comparator arm information leaflets were freely available and staff responded to specific questions.
- Medical consultant - £132 per contract hour
- Unit costs for other team members are as listed above.
Evidence statements
Clinical evidence statements
One study75 comprising 192 participants found no significant difference in depression at 5 months after stroke between the group that received supported information and the group that received unsupported information (MODERATE CONFIDENCE IN EFFECT).
One study112 comprising 138 participants found no significant difference between the group that received supported information and the group that received unsupported information at 3 months after stroke in self-efficacy with the following sections:
- Getting information about the disease (MODERATE CONFIDENCE IN EFFECT)
- Obtaining help from family, community, and friends (LOW CONFIDENCE IN EFFECT)
- Communicating with the doctor (MODERATE CONFIDENCE IN EFFECT)
- Controlling/managing depression (MODERATE CONFIDENCE IN EFFECT)
- Managing the disease in general (HIGH CONFIDENCE IN EFFECT)
- Managing symptoms (LOW CONFIDENCE IN EFFECT)
One study112 comprising 138 participants showed significant improvement in anxiety at 3 months after stroke with the group that received unsupported information compared to the group that received supported information (MODERATE CONFIDENCE IN EFFECT)
One study243 comprising 170 participants found no significant difference in the proportion of participants experienced anxiety at 3 months after stroke between the group that received supported information and the unsupported information group (MODERATE CONFIDENCE IN EFFECT).
Two studies218,243 comprising 374 participants found no significant difference in anxiety at 6 months after stroke between the group that received supported information and the unsupported information group (MODERATE CONFIDENCE IN EFFECT).
One study112 comprising 138 participants found no significant difference in depression at 3 months after stroke with the group that received supported information and the group that received unsupported information (LOW CONFIDENCE IN EFFECT)
One study243 comprising 170 participants found no significant difference in in the proportion of participants experienced depression at 3 months after stroke between the group that received supported information and the unsupported information group (VERY LOW CONFIDENCE IN EFFECT).
One study159 comprising 100 participants found no significant difference in mood at 6 months after stroke between the group that received supported information and the unsupported information group (MODERATE CONFIDENCE IN EFFECT).
Two studies218,243 comprising 374 participants found no significant difference in depression at 6 months after stroke between the group that received supported information and the unsupported information group (MODERATE CONFIDENCE IN EFFECT).
Economic evidence statements
No cost effectiveness evidence was identified.
7.1.2. Recommendations and link to evidence
| Recommendations |
|
|---|---|
| Relative values of different outcomes | It is difficult to identify and capture the different outputs of information provision. A range of potential outputs include: a better understanding of stroke, changes in behaviour (for example compliance with medication, increased satisfaction with services, decreased anxiety and depression, increased activity and participation in social roles after stroke). The GDG considered that the relationship between information provision and the outputs are unlikely to be linear and will be moderated by a large range of factors including: personal factors (patients’ educational levels, pre-morbid mental health status), disease factors (such as cognitive factors and aphasia), and social factors (such as family beliefs). The timing and pacing of information to patients’ needs is also critical. Patient groups repeatedly ask for more information and therefore factors to be considered are what information is required, the appropriate method of delivery for the patient and the timeliness of provision. |
| Trade-off between clinical benefits and harms | On the basis of these studies it appears that additional supported information provision does not affect improvement in mood. The baseline scores were such that the majority of the patients were not depressed and the change scores were not clinically significant. The GDG noted that standard information briefing may not be relevant; and that perhaps guiding patients toward articulating what information they need would be of more benefit to patients. |
| Economic considerations | Supported information provision may have a resource impact over usual care but this would vary depending on the specific intervention, and on the patient’s needs. The clinical studies reviewed did not provide evidence that patient health outcomes were improved; however, as noted above, the GDG considered that the benefits of information provision were hard to measure and there may be additional aims and benefits of information giving valued by patients but not captured by these outcomes. |
| Quality of evidence | The GDG thought that the patients’ perceptions and attributions are informed by a wide range of sources, much of which is available inside and outside of the health care environment. The included studies examined the added value of a more structured approach to information provision provided by health care professionals. The studies are necessarily reductionist in a complex environment. The components of the interventions were inadequately described and the evidence was generally of high to low quality for the outcomes assessed due to imprecision of the effect estimate. There was consensus that provision of information was useful. There was very little consensus on how and when this should be done, something that is reflected in the study designs. The GDG noted that the study by Ellis 75 was focused on assessing the role of the nurse specialist rather than the intervention. The Hoffman study 112 included only English speakers and therefore it did not reflect clinical practice. |
| Other considerations | The GDG agreed that information provided is likely to vary from patient to patient and needs to reflect patients’ needs and priorities, family expectations, and the local resources provided by leisure, housing, social services and the voluntary sector to support these. Information needs are likely to vary at different stages after stroke. The GDG noted that specific groups such as those with dysphasia or cognitive impairments may have particular information needs. |
- j
For recommendations on continuity of care and relationships see chapter 15 and for recommendations on enabling patients to actively participate in their care see chapter 14.
Footnotes
- h
Estimated based on data and methods from Personal Social Services Research Unit ‘Unit costs of health and social care’ report and relevant Agenda for Change salary bands50 (typical salary band identified by clinical GDG members).
- i
AU$199(2011) converted to UK pounds (2010) using purchasing power parities194.
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