In this series featuring information for patients and professionals taken from SIGN’s evidence-based guidelines we reproduce the section on patient issues from SIGN guideline number 78, on management of patients with stroke: identification and management of dysphagia.
Patient involvement in guideline development
In November 2001, a meeting was held with eight patients and four carers with experience of stroke dysphagia. The meeting was facilitated by SIGN staff and members of the guideline development group. Attendees were asked to consider what they would have changed about their NHS care, what they most valued and what information they had received.
The feedback highlighted both positive and negative aspects of the NHS care the patients had received. The most consistent comment was the poor level of information received by patients and carers, as regards stroke in general, stroke dysphagia and the likely consequences of the condition.
Areas in which patients would have liked more and earlier information include:
- The causes of stroke and how to prevent another
- What help is available
- How they can help in their own care and recovery
- Types of treatment available and how they work
- How drugs work and their possible side-effects
- Explanations of why treatments might change.
A series of patient and carer quotes are included below to highlight the main issues raised.
Given the information gap identified by patients, a literature search was performed to answer the question: what information is needed for patients and their families to understand and cope with the diagnosis, treatment and outcome? When and how should this information be given?
The small amount of published material identified was consistent with the general points raised by the patients.
The views of the patients and carers also agreed with a survey of 1206 stroke patients and carers carried out by the Clinical Standards Board for Scotland (now part of NHS Quality Improvement Scotland).
This identified the following issues as being of most importance to the patients and carers (in order of priority):
- Explanation of the condition given by the doctors and nurses
- Adequate physiotherapy
- Adequate speech and language therapy
- Overall hospital care/treatment given
- Information provided (e.g. leaflets on the condition, information on allowances available)
- Postdischarge care (general lack of it barring one or two exceptions)
- Opportunity to talk to doctors and nurses about the condition (i.e. the health professionals offering time to speak to patients and carers)
- Understanding/attitude shown by the health professionals
- Information on the likely outcome, degree of recovery or long-term care needs
- Adequate occupational therapy.
The participants stressed the value of the availability of a programme of therapies rather than occasional or limited numbers of sessions.
Patient and carer quotes
"A lot more information could have been given a lot earlier.”
"The treatment from the nurses on the ward was great once the speech and language therapist had given me the exercises.”
"There was a lack of continuing care after being discharged from the hospital. We could have benefited from longer treatment from a speech and language therapist.”
"I felt more involved with the speech therapist/occupational therapist and was kept much more informed. I learnt a lot more about the condition through working with them.”
"The doctor’s attitude left much to be desired. He was not very encouraging about me getting my PEG tube out and told me to prepare for the worst. I would like to have been told it was only temporary. I have now had the tube removed after 7 months.”
"The time taken to start the exercises to improve the muscles of the throat was very long. I had to wait 12 weeks and felt I had to practise this earlier myself.”
"I felt I was well looked after all the time – the girls took the time to come and talk to you and they were very nice.”
"I needed a better explanation about the treatment – the side-effects, what each drug was for, the reasons for the treatment – it should have been explained to me step by step.”
"Perhaps the biggest handicap which I faced on leaving hospital was the inability to swallow my own saliva, requiring me to be continually spitting, which I felt very embarrassed about whenever I was in company.”
Information should be imparted in a format suitable to the patient and carers. Written information, such as the leaflets provided by Chest, Heart and Stroke Scotland, should be given to patients/carers to take away with them.
Patient feedback has suggested people experiencing stroke dysphagia appreciate receiving encouragement that their condition may improve.
Good Practice Point (GPP): Stroke patients with dysphagia and their families or carers should be given information to enable them to make informed decisions about management of the swallowing disorder.
GPP: Patients/carers should be informed about the full implications of their treatment, the timescale for altered diet or PEG feeding and how often they will be reviewed.
Quality of life
Research into the pathophysiology and management of swallowing has been clinically led. There is a paucity of data on health outcomes from the patient’s perspective, such as quality of life and patient satisfaction. Some attempts are now being made to redress this with the use of quality of life questionnaires and patient focused outcome measures.
GPP: Healthcare professionals should be aware of the importance of the social aspects of eating. An inability to eat normally may affect patient morale, lead to feelings of isolation and could contribute to clinical depression.
|Box 1: Sources of further information for patients and carers|
|British Association for Parenteral and Enteral Nutrition (BAPEN)
BAPEN has produced resources and information leaflets for healthcare professionals and patients on tube feeding and the administration of medicines.
Ruthpitter House, 20/25 Glasshouse Yard, London EC1A 4JT
Tel: 020 7490 8818 CarersLine: Freephone 0808 808 7777 (Wed - Thur,10am - noon and 2 pm - 4 pm)
|Chest, Heart and Stroke Scotland
65 North Castle Street, Edinburgh EH2 3LT
Advice Line: 0845 077 6000 Tel: 0131 225 6963 Fax: 0131 220 6313
Chest, Heart and Stroke Scotland administer the Volunteer Stroke Service and other local stroke groups.
9 Canon Harnett Court,Wolverton Mill, Milton Keynes MK12 5NF
Tel: 0845 130 7172 Fax: 01908 313501
Norton Park, 57 Albion Road, Edinburgh EH7 5QY
Tel: 0131 475 2600 Fax: 0131 475 2379
Braid House, Labrador Avenue, Howden, Livingston EH54 6BU
Tel: 01506 443100 Fax: 01506 443055
Employment consultancy and support for people after acquired brain injury
|Princess Royal Trust for Carers
142 Minories, London EC4N 1LB Tel: 020 7480 7788 Fax: 020 7481 4729
1 Royal Street, London SE1 7LL
Tel: 020 7261 9572 Fax: 020 7928 9542
Helpline: Freephone 080 8808 9572 (Mon - Fri,10 am - 4 pm)
|Adapted from SIGN 78. Management of patients with stroke: identification and management of dysphagia. Edinburgh: Scottish Intercollegiate Guidelines Network, 2004.|
Reproduced from SIGN 78. Management of patients with stroke: identification and management of dysphagia.. Edinburgh: Scottish Intercollegiate Guidelines Network, 2004.