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Age and Ageing Advance Access originally published online on December 15, 2006
Age and Ageing 2007 36(1):83-89; doi:10.1093/ageing/afl145
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Copyright © The Author 2007. Published by Oxford University Press on behalf of the British Geriatrics Society.

The CareFile Project: a feasibility study to examine the effects of an individualised information booklet on patients after stroke

Debbie B. Lowe1, Anil K. Sharma2 and Michael J. Leathley3

1 Department of Medicine for the Elderly, Arrowe Park Hospital, Arrowe Park Road, Upton, Wirral, CH49 5PE, UK
2 Department of Medicine for the Elderly, University Hospital Aintree, Longmoor Lane, Liverpool, L9 7AL, UK
3 Clinical Practice Research Unit, Department of Nursing, University of Central Lancashire, Preston, PR1 2HE, UK

Address correspondence to: D. B. Lowe. Tel: 0151 678 5111 Ext 2936 Fax: 0151 604 7192. Email: debbielowe{at}hotmail.com


   Abstract
Top
 Abstract
Introduction
 Methods
 Results
 Discussion
 Key points
 Appendix 1
 References
 
Introduction: patients have reported a lack of knowledge and understanding of stroke and its risk factors. Uncertainty remains about the most appropriate and effective method of educating patients after stroke.

Objective: to assess the impact of the CareFile, an individualized information booklet, on patients' knowledge and satisfaction level after stroke.

Design: randomised pilot study for a controlled trial.

Setting: a large teaching hospital in Liverpool, UK.

Methods: consecutive stroke patients admitted over a 9-month period, who met the inclusion criteria and consented to participate, were randomised into this study. All patients received the usual stroke information leaflets provided by the stroke unit. In addition, the intervention group received the ‘CareFile’, a booklet containing general information and patient-specific information on stroke. Patients in both groups completed a stroke knowledge questionnaire at baseline, and at three and six months post-stroke.

Results: of the 259 admissions, 100 were eligible to participate, and 50 were randomised to each group. There was no significant difference in patient knowledge between the groups at baseline (P>0.05). However, at three (P <0.05) and six (P <0.005) months post-stroke, the intervention group had significantly better knowledge of stroke. There were no differences between the groups regarding satisfaction with the information received.

Conclusions: a simple education package, in the form of an individualized information booklet, resulted in a significant improvement in knowledge and recognition of risk factors for stroke. The CareFile should make a valuable contribution in meeting the requirements of the National Sentinel Audit and National Service Framework regarding provision of information to patients after stroke.

Keywords: stroke, information dissemination, booklet, elderly


   Introduction
Top
 Abstract
 Introduction
Methods
 Results
 Discussion
 Key points
 Appendix 1
 References
 
Inadequacies exist in the provision of information for patients post-stroke [1]. Previous reports have demonstrated that patients and carers are dissatisfied with the content and quality of stroke information provided [2–4]. Poorly informed patients are less satisfied with care, less likely to comply with medical advice and are more likely to have poorer outcomes [5]. Often, patients have minimal understanding of stroke [4] and are unaware of the advantages of lifestyle changes and also about the importance of complying with secondary prevention medication. Lack of knowledge may be due to lack of information, or poorly presented information given at the wrong time [6]. The importance of providing good-quality information in health care is becoming increasingly recognised. Successive National Sentinel Stroke Audits [7] have highlighted the need for the provision of better information, and the UK National Guidelines for Stroke 2004 [8] have recognized the importance of providing information.

What patients and carers want to know about stroke is usually not the same as what the health professionals think they should know. Regional Stroke Association data and other observational surveys [3] have highlighted areas of education and advice that are important to patients and carers. The questions and concerns about stroke change over time. For example, in the first few weeks following stroke, patients are concerned about the causes of stroke and likelihood of recovery. At six months post-stroke, the emphasis changes to risk of recurrence and questions about medication [3].

Existing methods for providing information to stroke patients and their carers need to be improved [1, 9]. A different approach to patient education is required. Following discussions with patients and carer groups to assess their information needs and after discussions with local stroke physicians and primary care groups, we designed an individualized patient information booklet, the ‘CareFile’.

The study aimed to assess the impact of the CareFile on knowledge and satisfaction levels in patients after stroke, assess the utility of the CareFile and record blood pressure data to inform a power calculation for a definitive trial.


   Methods
Top
 Abstract
 Introduction
 Methods
Results
 Discussion
 Key points
 Appendix 1
 References
 
Subjects and setting
All patients with a primary diagnosis of acute stroke admitted to the Stroke Unit at a teaching hospital in the northwest between March and November 2001 and entered consecutively in the stroke register were considered for the study. For all included patients, the European Stroke DataBase [10] was used to record age, sex, type and severity of stroke (assessed with the day seven Barthel [11]).


Inclusion criteria
Diagnoses of stroke confirmed by the researcher (DL: Stroke Research Registrar) through clinical assessment; discharge home; the patient was able to complete a questionnaire or have a carer who could annotate the responses indicated by the patient.

Exclusion criteria: severe cognitive or communication problems (unable to comprehend the purpose or content of CareFile owing to language or cognitive impairment), discharge to institutional care or inability to complete a questionnaire.

Procedure
When a diagnosis of stroke was confirmed, eligible patients were randomised by the researcher into the control or intervention group (using sealed opaque envelopes containing blocks of 10 names, in a one-to-one ratio). The control group received the usual care, including Stroke Association information leaflets and follow-up in Stroke Review Clinic. The intervention group received the CareFile, described below, in addition to the usual care.

At randomisation (baseline), patients in both groups completed the Stroke Knowledge Questionnaire (SKQ) [12], which was designed to assess their knowledge of stroke and their level of satisfaction with the provision of information. The SKQ was based on a previously developed questionnaire [13] and its utility has been assessed in a pilot study [12]. The patients in the intervention group completed the questionnaire before they received the CareFile. In addition, a record was made of each patient's blood pressure. The questions used to assess the patient's knowledge of stroke and satisfaction level with the information provided are given in Appendix 1.

Follow-up at three and six months post-stroke was completed at the Stroke Review Clinic by an independent assessor (research nurse). Patients who did not attend the clinic were contacted and given the option of a further appointment or a home visit. Outcome was assessed using the SKQ. Those in the intervention group were asked if they had brought the CareFile to the Review Clinic and if they found it useful. All patients had their blood pressure recorded by the independent assessor.

The CareFile
The CareFile is an A5 size, laminated 29-page booklet. The content includes telephone numbers for stroke-related services and local support agencies, general information about stroke and information personal to the patient, such as secondary prevention measures. Within the booklet, pages with information irrelevant to the individual, e.g. smoking cessation advice for non-smokers, could be removed. The booklet had sections in which members of the multi-disciplinary team could enter summaries of the patient's achievements and future rehabilitation goals. Once a discharge date was confirmed, patients (and carers, if they wished) were interviewed at their bedside by the researcher. The CareFile and its contents were explained and any additional concerns were addressed; the discussion usually lasted 15–20 min. The patients were advised to take their CareFile along for all appointments with GPs and at clinics. Patients requiring additional information, e.g. driving or travel advice, were provided with the appropriate written information separately and given a verbal explanation when the CareFile was distributed.

Outcomes
Primary: knowledge of stroke (SKQ).

Secondary: satisfaction with information given (SKQ), utilisation of CareFile (SKQ), blood pressure, participation [14] and mood (Yale single question, [15]).

Statistical analysis
Data were described using medians, interquartile ranges, frequencies, means and 95% confidence intervals. Ordinal data were compared using Kruskal–Wallis ANOVAs and categorical data were compared using Yates’ corrected chi-squared. Data were analysed with Epi-info and SPSS (ver 10).

Ethical approval
Approval was obtained from the local Research Ethics Committee.

This study is registered as an International Standard Randomised Controlled Trial, number ISRCTN55373356 [controlled-trials.com] .

Declaration of sources of funding
The study was supported by a £ 5,000 research grant from Bristol Myers Squibb.


   Results
Top
 Abstract
 Introduction
 Methods
 Results
Discussion
 Key points
 Appendix 1
 References
 
Of the 259 patients on the stroke register, 100 (39%) were recruited into the study (50 per group). The reasons for exclusion were as follows: 40 (15%) were discharged to nursing homes, 25 (10%) had cognitive impairment, 16 (6%) were unable to complete the questionnaire and had no carer available, 52 (20%) died and 26 (10%) could not be traced. Patients’ progression through the trial is shown in Figure 1.


Figure 1
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  		Figure 1. Flow chart of patients in the study

 
The median age (interquartile range) in the two groups was similar (Intervention: 68 years [62–74]; Control: 73 years [65–80]), as was the distribution of sex (Intervention: 21 [42%] female; Control: 19 [38%] female) and median (interquartile range) day seven Barthel (Intervention: 12 [8–16]; Control: 12 [7–19]). Most patients who were scanned had ischaemic strokes (Intervention: 44 [96%]; Control: 41 [94%]).

The control group and the intervention group had similar knowledge of stroke scores at baseline (P = 0.91). At three months post-stroke, patients in the intervention group had a higher knowledge score than patients in the control group (P <0.05) and this higher knowledge score was still evident six months post-stroke (P <0.005) (Table 1).


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  		Table 1. Stroke knowledge scores for the intervention and control groups; each cell contains the mean and 95% confidence interval

 
Most patients brought their CareFile to the three (78%) and six (86%) month Stroke Review Clinics. At six months, 98% said the CareFile provided them with useful information. Over half the patients (53%) reported they would use the CareFile as reference material for information regarding their stroke, compared with 18% who would approach the Stroke Association and 27% who would contact their GP. Nearly all patients (98%) said they would recommend the CareFile to other stroke patients.

At baseline, less than 50% of the patients in either group felt they had received enough information about a stroke. At three and six months, 80% of the patients in both groups felt they had received enough information. When asked if they would like more information about the causes and prevention of stroke, over 70% of patients in both groups felt they had enough information at baseline. At three and six months, less than 30% of the patients in either group reported receiving sufficient information about these issues. There were no significant group differences regarding satisfaction with information received.

When patients were asked about blood pressure control, 91 (95%) acknowledged that hypertension was an important risk factor for stroke. There was no significant difference between the groups at any time in systolic or diastolic blood pressure (Table 2).


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  		Table 2. Blood pressure for the intervention and control groups; each cell contains the median and interquartile range

 
Participation at three and six months was not different between the groups (p>0.05). At baseline, 23 (48%) and 25 (52%) patients in the intervention and control groups, respectively, answered ‘yes’ to the Yale. While the proportions answering ‘yes’ were greater at three and then six months (Intervention: 31 [70%]; Control: 26 [59%]), no significant differences were evident.


   Discussion
Top
 Abstract
 Introduction
 Methods
 Results
 Discussion
Key points
 Appendix 1
 References
 
The CareFile was a popular information booklet, well-utilized by patients and carers, and was a preferred form of reference material up to six months post-stroke. Thus, a simple education package, in the form of an individualised information booklet, resulted in significant improvement in stroke knowledge and recognition of risk factors for stroke, even within the context of a pilot study. This improvement in knowledge did not translate into a difference between the groups with regard to satisfaction with information, participation or mood. Blood pressure was well controlled in both groups.

Previous trials that aimed to improve patient knowledge had mixed results [9]. Studies that focused on providing information tended to demonstrate no increased knowledge among patients [16], or demonstrated only some improvement [6, 13]. When information packs were supplemented by additional input, significant effects were seen [17]. Education classes or programmes had the most positive results, with two studies showing a significant improvement in stroke knowledge [18, 19].

Compared with other strategies for providing information [6, 13, 16], the CareFile demonstrated a clear improvement in knowledge among patients. The lack of effect (or limited effect) in previous studies may have been due to outcome assessment at one week [6], lack of discussion of the contents of the booklet with the patient [16] or lack of individualisation of the information [13]. The effects of the CareFile on knowledge were assessed at three and six months after stroke, the contents of the booklet were discussed with the patient and the booklet was individualised for each patient.

Although having a small sample size, a study that provided instruction in addition to information for patients, demonstrated a significant improvement in their knowledge [17]. The supplementation of information with instruction may be a key factor in the success of any strategy for providing information. When the CareFile was handed out to patients, it was personally delivered by a specialist doctor who discussed the contents of the booklet with the patient and carer at the time of issue. Moreover, the contents of the booklet were specific to individual patients, allowing the discussion to be focused on what was important to each patient. Time spent with the patient discussing the education package may explain why such packages have demonstrated significant improvements in patient knowledge [18, 19]. Adult learning theory has established that effective learning requires material to be centred on the individual and must be highly personalised and practical [20].

It has previously been suggested that patient knowledge is an unsuitable measure for assessing the success of an education package [21]. However, the other possible outcome measures, such as function or mood, may not be sensitive to the changes that are likely to occur as the result of providing information. The lack of effect of the CareFile on participation can be compared with the results of previous studies that have shown non-significant differences, irrespective of whether there were significant differences in knowledge [19] or not [13, 16]. Similar to the effects of the CareFile, neither education packages nor information leaflets have shown any association with emotional outcome [13, 19].

An alternative outcome measure is patient satisfaction. While the CareFile improved knowledge, the patients who received personalised information reported no greater satisfaction with ‘information provision’ than patients who received usual care. As with the CareFile, previous studies have failed to demonstrate any significant differences in satisfaction levels between groups provided with information and those who were not provided [13, 19]. Caution is necessary when interpreting such results. Simple measures may yield ‘perverse’ results; thus, measures such as satisfaction may get worse with increased success, i.e. more inputs but less satisfaction. This is perhaps because patients soon become aware of their own relative lack of knowledge, referred to in learning theory as ‘conscious incompetence’, whereas previously the patient was unaware of this lack of knowledge, known as ‘unconscious incompetence’ [22]. In such a situation, success in learning by patients and carers leads to decrease in patient satisfaction, or, at best, static satisfaction levels, as seen with the CareFile as well as in other studies that show lower psychological health scores in carers [23].

It has long been known that informed patients are less anxious, and able to process and retain more information and perhaps change their behaviour [21]. By informing patients, we can empower them, making them more willing to take responsibility for their own health and prevent progression of illness [3, 18]. Ultimately, such responsibility may manifest itself in the appropriate use of services and modification of health related behaviour. This may in turn lead to improvement in the physical markers of health, such as weight control or cessation of smoking. There were no data available on a sample size calculation for a study that analysed the effects of the CareFile on physical markers. Owing to the importance of hypertension as a key target for secondary prevention, we wanted to record data on blood pressure and then use these data to carry out a definitive study in which the primary aim would be to keep blood pressure within the target levels. The data we recorded suggested that a very large sample would be needed for the CareFile to show any effect on blood pressure. Firstly, this is because the CareFile would not offer information about altering blood pressure directly, rather it would make people aware of the importance of blood pressure control for secondary prevention. This assumption relies on the premise that patient knowledge leads to a change in behaviour, but this is not necessarily true [24]. Secondly, patients in both the groups studied had well-controlled blood pressure all the time. It is possible that a cohort having a more typical range of blood pressure recordings [25] would show an given improvement if the CareFile.

It is difficult to identify the exact reasons why the CareFile was successful in improving patient knowledge, as compared to other information strategies that had no or only limited success [6, 13, 16]. One of the key elements may be the discussion between patient and knowledge provider when the information was handed out. In cases where such discussions were evident, significant improvements in knowledge have been seen [17]. Moreover, the interaction between the patient and carer when stroke information was imparted could be critical. The stroke specialist who develops a good rapport with the patient and carer is more likely to inspire them to use the CareFile, in this instance, to be proactive in their own health care [26].

Overall, the CareFile did improve knowledge and was utilised by patients. The advantage of providing information via a booklet rather than an education class is convenience, because the patient does not have to spend time attending classes. The use of the CareFile after stroke would be a valuable contribution in meeting the requirements of the National Sentinel Audit [7] and National Service Framework, [27] regarding provision of information to patients.


   Key points
Top
 Abstract
 Introduction
 Methods
 Results
 Discussion
 Key points
Appendix 1
 References
 

  • The CareFile was popular and well utilised by patients and carers as a preferred form of reference material.
  • A simple individualised information booklet can result in increased patient knowledge after stroke.
  • Increase in knowledge did not lead to increase in patient satisfaction with the provision of information.


   Conflicts of interest
 
There are no conflicts of interest.


   Appendix 1
Top
 Abstract
 Introduction
 Methods
 Results
 Discussion
 Key points
 Appendix 1
References
 
Questions used to assess knowledge, and satisfaction with information and care.

Questions used to assess knowledge.

Each question could be answered ‘yes’, ‘no’ or ‘don't know’, except for question 2, which could be answered, ‘heart’, ‘brain’, ‘both heart and brain’ or ‘don't know’. Each correct response is given a score of one.

Risk Factor questions; total possible score = 5.

  1. Which of the following risk factors do you believe increases a person's risk of having a stroke?
    1. Smoking
    2. Low blood pressure
    3. High cholesterol
    4. Diabetes
    5. Alcohol excess

    General Knowledge questions about stroke; total possible score = 7.
  2. Which part of the body does a stroke affect?
  3. A stroke is a medical emergency in the same way as a heart attack.
  4. Following a stroke, you are at an increased risk of having further strokes.
  5. Controlling blood pressure is very important in preventing further strokes.
  6. A blood pressure of 150/100 is the target blood pressure following a stroke.
  7. Following a stroke, most patients should be taking aspirin every day.
  8. Most tablets started in hospital can be discontinued once the patients get home.

Total sum of Risk Factor and General Knowledge questions, total possible score = 12.

Questions used to assess satisfaction with information
Each question is answered yes or no.

Do you have as much information as you would like to have about your stroke?

Would you like more information about what causes stroke?

Would you like more information on how to prevent further strokes?

Do you feel that the information you have been given has been too general?

Questions used to assess satisfaction with care
Each question is answered ‘strongly agree’, ‘agree’, ‘neither agree nor disagree’, ‘disagree’ or ‘strongly disagree’.

Overall, I am happy with the care I have received following my stroke.

I feel that my care was very personal and directed at my specific needs.

The doctors have done all they can to help me get better.

I have received all the information I need about my stroke.


   References
Top
 Abstract
 Introduction
 Methods
 Results
 Discussion
 Key points
 Appendix 1
 References
 

  1. Rodgers H, Bond S, Curless R. (2001) Inadequacies in the provision of information to stroke patients and their families. Age Ageing 30 129–33.[Free Full Text]
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  7. Royal College of Physicians. (2005) National Sentinel Stroke Audit Report 2004. Prepared on behalf of the Intercollegiate Stroke Working PartyLondon RCP.
  8. Royal College of Physicians. (2004) National Clinical Guidelines for Stroke 2nd edition London Royal College of Physicians Prepared by the Intercollegiate Stroke Working Party.
  9. Forster A, Smith J, Young J, et al. (2004) Information provision for stroke patients and their caregivers (Cochrane Review) The Cochrane Library Issue 3.
  10. Ellul J, Watkins CL, Barer DH. (1995) The European Stroke Database "Minimum Dataset" for assessing functional status in stroke patients at discharge from hospital. Cerebrovasc Dis 5 246.
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  12. Lowe D, Leathley M, Sharma AL. (2002) Assessment of stroke knowledge. Age Ageing 31Suppl. 1, 42.[Free Full Text]
  13. Mant J, Carter J, Wade DT, et al. (1998) The impact of an information pack on patients with stroke and their carers: a randomised controlled trial. Clin Rehabil 12 465–76.[Abstract/Free Full Text]
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  18. Evans RL, Matlock A, Bishop DS, et al. (1988) Family intervention after stroke: does counselling or intervention help? Stroke 19 1243–49.[Abstract/Free Full Text]
  19. Rodgers H, Atkinson C, Bond S, Suddes M, Dobson R, Curless R. (1999) Randomised controlled trial of a comprehensive stroke education program for patients and caregivers. Stroke 30 2585–91.[Abstract/Free Full Text]
  20. Knowles MS. (1970) The Modern Practice of Adult Education: and Ragogy Versus PedagogyNew York New York Association Press.
  21. Hanger HC and Wilkinson TJ. (2001) Stroke education: can we rise to the challenge? Age Ageing 30 113–14.[Free Full Text]
  22. Howell WF. (1982) The Empathic CommunicatorBelmont, CA Wadsworth.
  23. Schulz R, Tompkins CA, Rau MT. (1988) A longitudinal study of the psychosocial impact of stroke on primary support persons. Psychol Aging 3 131–41.[CrossRef][ISI][Medline]
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  27. Department of Health. (2001) National Service Framework for Older People London Department of Health.

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