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Setting stroke research priorities: The consumer perspective
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Setting stroke research priorities: The consumer perspective Pukkaporn Sangvatanakul, RN BN(Hon), Sharon Hillege, RN, RM, BHS, P.Grad Cert TESOL, PhD, MRCNA, Senior Lecturer, Erin Lalor, BAppSc (Speech and Hearing) PhD GCCM, Chief Executive Officer, Christopher Levi, B Med Sci MBBS, FRACP, Director, Kelvin Hill, BAppSc (Physiotherapy) Grad. Dip. Bus. & Com., Manager and Adjunct Senior Lecturer, and Sandy Middleton, RN BAppSc (Nursing) MN, PhD, Director
Objectives: To test a method of engaging consumers in research priority-setting using a quantitative approach and to determine consumer views on stroke research priorities for clinical practice recommendations with lower levels of evidence (Level III and Level IV) and expert consensus opinion as published in the Australian stroke clinical practice guidelines. Design: Survey Setting: Urban community Subjects: Eighteen stroke survivors (n = 12) and carers (n = 6) who were members of the ‘‘Working Aged Group – Stroke’’ (WAGS) consumer support group. Main outcome measures: Phase I: Participants were asked whether recommendations were ‘‘worth’’ researching (‘‘yes’’ or ‘‘no’’); and, if researched, what potential impact they likely would have on patient outcomes. Phase II: Participants were asked to rank recommendations rated by more than 75% of participants in Phase I as ‘‘worth’’ researching and ‘‘highly likely’’ or ‘‘likely’’ to generate research with a significant effect on patient outcomes (n = 13) in order of priority for future stroke research. Results: All recommendations were rated by at least half (n = 9, 50%) of participants as ‘‘worth’’ researching. The majority (67% to 100%) rated all recommendations as ‘‘highly likely’’ or ‘‘likely’’ that research would have a significant effect on patient outcomes. Thirteen out of 20 recommendations were ranked for their research priorities. Recommendations under the topic heading Getting to hospital were ranked highest and Organization of care and Living with stroke were ranked as a lower priority for research. Discussion/Conclusion: This study provided an example of how to involve consumers in research priority setting successfully using a quantitative approach. Stroke research priorities from the consumer perspective were different from those of health professionals, as published in the literature; thus, consumer opinion should be considered when setting research priorities. (J Vasc Nurs 2010;28:121-131)
INTRODUCTION In Australia and internationally, clinical practice guidelines have been developed to assist health professionals in clinical decisionmaking. The National Stroke Foundation (NSF) has developed the Clinical Guidelines for Acute Stroke Management1 and the Clinical Guidelines for Stroke Rehabilitation and Recovery,2 both of which
are approved by the National Health and Medical Research Council (NHMRC). The guidelines contain recommendations for practice that are rated using the NHMRC levels of evidence taxonomy (from Level I: A systematic review of randomised controlled trials to Level IV: Case series).3 In some instances where there is no clear empirical evidence available, guidelines may be based on expert consensus opinion.4
From the Nursing Research Institute, St Vincent’s Hospital, Darlinghurst NSW 2010; School of Nursing & Midwifery, College of Health and Science, The University of Western Sydney, Penrith South DC NSW 1797; National Stroke Foundation, Melbourne VIC 3000; Brain & Mental Health Priority Research Centre, University of Newcastle & Hunter Medical Research Institute, and Acute Stroke Services, John Hunter Hospital, New Lambton Heights, NSW, 2305; Guidelines Program, National Stroke Foundation; Medicine, Western Clinical School, University of Sydney, Melbourne VIC 3000; Nursing Research Institute, St Vincent’s & Mater Health Sydney and Australian Catholic University, and National Centre for Clinical Outcomes Research (NaCCOR), Nursing and Midwifery Australia, Australian Catholic University, Nursing Research Institute, St. Vincent’s Hospital, Darlinghurst NSW 2010. Corresponding author: Sandy Middleton, RN BAppSc (Nursing) MN, PhD, Director, Nursing Research Institute, St Vincent’s & Mater Health Sydney and Australian Catholic University and Director, National Centre for Clinical Outcomes Research (NaCCOR), Nursing and Midwifery Australia, Australian Catholic University, Nursing Research Institute, Executive Suite, Level 5, de Lacy Building, St. Vincent’s Hospital, Victoria Street, Darlinghurst NSW 2010 (E-mail: [email protected]). 1062-0303/$36.00 Copyright Ó 2010 by the Society for Vascular Nursing, Inc. doi:10.1016/j.jvn.2010.09.001
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Almost half (n = 64, 43%) of the recommendations in the Clinical Guidelines for Acute Stroke Management1 are based on a lower level of evidence or expert opinion (5% level III evidence, 3% level IV evidence and 35% expert consensus opinion). In addition, more than half (52%, n = 90) of the recommendations in the Clinical Guidelines for Stroke Rehabilitation and Recovery2 are based on lower level of evidence or expert opinion (13% Level III evidence, 2% Level IV evidence and 37% expert consensus opinion). The NHMRC states that clinical guidelines should be based on the ‘‘best available evidence’’ and should be revised regularly.4 Topics that may require further research to fill in the ‘‘research gaps’’ should be identified should the need for research to upgrade the level of evidence for existing recommendations. However, it may not always be possible or even practical to undertake research for all recommendations with lower levels of evidence within a guideline,4 for example, due to ethical or economic constraints.4 For these reasons, logic would dictate that those recommendations that are not already based on the highest level of evidence should be identified and prioritized for future research. Historically, health professionals have played a dominant role in healthcare planning and delivery.5 In recent years, consumers, as healthcare recipients, have been encouraged to play an active role in service delivery and planning.6 Several studies have been conducted to determine consumer views of research priorities in a variety of health areas, such as treatment of chronic kidney disease7 and palliative care.8 Although international studies have been undertaken to examine research priority-setting in the area of stroke management,9-12 those studies examined health professionals’ views on stroke research priorities with resulting priority topics demonstrating a strong biomedical focus.9-12 The views of consumers about research priorities for stroke management are not well researched or reported. In 2007, a group of Australian researchers evaluated stroke patient views regarding the importance of the NSF stroke guidelines. To eliminate the jargon and reduce the amount of information, the NSF’s Clinical Guidelines for Acute Stroke Management1 was rewritten into plain, nontechnical English terms and condensed into 18 topic areas with consumer consultation.13 Participants then were asked to rate each topic area as to their importance in the stroke care process.13 However, this study evaluated only consumer perspectives regarding the importance of those topic areas, not the priorities for research.13 The study goals were first to test a method of engaging stroke consumers in research priority setting using a quantitative approach and second, to determine consumer views about stroke research priorities for recommendations with a lower level of evidence (Level III and Level IV) and expert consensus opinion from the Clinical Guidelines for Acute Stroke Management1 and the Clinical Guidelines for Stroke Rehabilitation and Recovery.2
Guidelines for Stroke Rehabilitation and Recovery2 were rewritten in nontechnical terms and condensed into 29 consumerfocused modified rehabilitation recommendations by a researcher (Sangvatanakul), a NSF representative (Hill) and three consumer representatives who were members of the Working Aged Group – Stroke (WAGS) consumer support group located in Gosford, New South Wales, Australia. The three representatives from WAGS consisted of a stroke survivor, a stroke survivor with a health professional background and a carer. Next, these recommendations were combined with the 18 topic areas previously developed by Worrall et al. (2007) and published in the Clinical Guidelines for Acute Stroke Management.1 Duplicates were deleted to form a comprehensive set of 34 consumer-focused modified stroke recommendations covering the acute stroke and rehabilitation phase.14 The levels of evidence for each consumer-focused modified stroke recommendation were determined. In 12 instances, the consumer-focused modified stroke recommendations were aggregated and, hence, encompassed more than one initial recommendation from either of the clinical guidelines. In these instances, rules for the classification of their levels of evidence were determined (Table 1). Among the 34 consumer-focused modified recommendations, 20 (59%) recommendations were considered to be based on a lower level of evidence (Level III and Level IV) and expert consensus opinion.
Participants Members of WAGS were invited to participate whether stroke survivors and/or carers. This group had previously assisted the NSF to evaluate the Clinical Guidelines for Acute Stroke Management in 2007 and had some understanding of participating in similar research.13 Data collection was undertaken in two phases. Various strategies were employed to assist the group which consisted of using laymen terms in the questionnaires, piloting the questionnaires with consumers, giving a brief explanation of the questionnaires with the use of PowerPointÒ presentations, supplying criteria on which to base a decision7 and the provision of writing assistance, if required. Phase I. Phase I data were collected at a 2-hour, specially convened group session facilitated by Sangvatanakul. Participants were asked to individually complete a questionnaire. Instructions were given, and rating scales were distributed. For each of the 20 consumer-focused modified recommendations with lower levels of evidence (Level III and Level IV) and expert consensus opinion, participants were asked whether the recommendation was ‘‘worth’’ researching (Yes/No). Consumers were given criteria to define ‘‘worth’’ researching as follows: -
METHOD
Development of Consumer-focused Modified Stroke Recommendations The process for this stage was informed by the method used by Worrall et al.13 First, recommendations from the Clinical
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Is it relevant to most stroke survivors, rather than just to you personally? Would research perhaps result in better care for patients? Would research lead to increased satisfaction for stroke survivors and their families? Would research be a good use of scarce funds?7
Next, consumers were asked how ‘‘likely’’ it would be that research for each of these 20 recommendations would have a ‘‘high impact’’ on patient outcomes. A 5-point Likert scale
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TABLE 1
TABLE 2
METHOD OF DETERMINING THE LEVEL OF EVIDENCE (LOE) FOR AGGREGATED RECOMMENDATIONS MADE UP OF SEVERAL RECOMMENDATIONS WITH DIFFERING LOE
DEFINITION OF THE RATING SCALE TO MEASURE LIKELY IMPACT15
Where an aggregated recommendation consisted of < 5 recommendations with varying LOE, if any of the initial recommendations were based on expert consensus opinion, the LOE was collectively determined as expert consensus opinion. Where an aggregated recommendation consisted of > 5 recommendations with varying LOE, if > 50% were based on Level II or greater, the LOE was determined to be Level I and Level II evidence Where recommendations for both the acute guidelines and the rehabilitation guidelines were identical but with different LOE, the most recently published acute guidelines LOE was used. One recommendation was noted as ‘‘extrapolated from Level I evidence,’’ and was determined as being expert consensus opinion.
(‘‘highly likely’’ to ‘‘highly unlikely’’) was used and definitions of the rating scale were provided on the questionnaire cover sheet (Table 2).15 A blank text area also was provided for participants to list additional topics that they considered to be ‘‘worth’’ researching. They also were asked to rate these additional topics for their impact using the scale previously described. In addition, 6 demographic questions were asked: age; sex; status (stroke survivor or carer); self-rated stroke condition (‘‘extremely severe,’’ ‘‘very severe,’’ ‘‘moderate’’ and ‘‘mild’’); number of strokes experienced; employment status (‘‘not working and not looking for work,’’ ‘‘not working but looking for work,’’ ‘‘volunteer work’’ and ‘‘working with pay’’); working hours; and highest level of education. Phase II. Two weeks following the Phase I meeting, Phase II data again were collected at a specially convened session facilitated by Sangvatanakul and lasting for one hour. The WAGS members were encouraged to participate in both Phase I and Phase II; however, if this were not possible, attendance at either of the meetings was acceptable. Recommendations rated by more than 75% of participants in Phase _ as ‘‘worth’’ researching and ‘‘highly likely’’ or ‘‘likely’’ to generate research with significant effects on patient outcomes were collated and developed into the Phase II questionnaire (note: These did not include those additional topic areas added by participants in Phase I). All participants were asked to rank these recommendations in order of priority for future stroke research. The lowest number was defined as having the highest priority for research and vice versa. The same demographic questions used for Phase I were used for Phase II. Writing assistance was not required for any participant in either Phase.
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The impact of the research would be positive and it is directly related to major issues in stroke care. Likely The impact of the research would be positive. It is directly related to major issues in stroke care, but it could not be applied until other problems were resolved. Not Sure The impact of the research cannot be measured. Unlikely The impact of the research is very limited and it does not relate to major issues in stroke care. Highly Unlikely The impact of the research will not make any difference to stroke care. Highly Likely
Data analysis Data were analysed using SPSS (version 16). Frequencies for each variable were determined. Phase I results were grouped by Sangvatanakul and Hill by themes using topic headings from the Clinical Guidelines for Acute Stroke Management,1 where appropriate. Otherwise, resesarchers developed new topic headings. The correlation between ‘‘worth’’ researching and the likelihood (‘‘highly likely’’ and ‘‘likely’’) of research having great significance on patient outcome was determined using Spearman’s rho. For Phase II, the median and standard deviation were determined for each recommendation. All recommendations were ranked by the median score to determine the final order for research priority. Recommendations with a lower median score indicated a higher research priority. In addition, ethical clearance was obtained from Australian Catholic University National Human Research Ethics Committee.
RESULTS
Phase I Eighteen WAGS members participated in the Phase I survey. The mean age of participants was 56 years (range: 44 to 68 years) and the majority were male (n = 10, 55%). Six carer and stroke survivor pairs attended the session (n = 12, 67%), and the other six stroke survivors attended the session alone (33%). Two thirds of participants were stroke survivors (n = 12, 67%) and the majority of them had experienced a stroke only once (n = 10, 83%). Most stroke survivors rated their stroke condition as ‘‘moderate’’ (n = 9, 75%). The majority of participants were working (n = 10, 56%), with almost half of participants undertaking paid work (n = 8, 44%) and two engaged in volunteer work (12%). Just over one third of participants had obtained a diploma certificate or university or college degree (n = 7, 40%) (Table 3).
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Recommendations rated as ‘‘worth’’ researching. All recommendations were rated by at least half of participants (n = 9) as ‘‘worth’’ researching. Of these, two recommendations were rated equally at the highest level as ‘‘worth’’ researching: ‘‘Health professionals and the public should get education about how to recognize stroke early.stroke is a medical emergency’’’’ and ‘‘Health professionals (including local doctor), the stroke survivor, and their family or carer should all be involved in developing a plan.’’ (n = 17, 94%). Only 9 participants rated the following recommendation as ‘‘worth’’ researching (50%) and this was the lowest percentage of all recommendations: ‘‘Stroke survivors and their carers should have a chance to talk about sex after stroke and get help where needed by trained professionals’’ (Table 4). Likelihood of research having a significant effect on patient outcomes. The majority of participants (n = 13-18, 72%-100%) rated all recommendations as ‘‘highly likely’’ or ‘‘likely’’ to generate research with high impact on patient outcomes. Of these, the following four recommendations: ‘‘Stroke .[is] a medical emergency.’’; ‘‘Health professionals. the stroke survivors, and . family . should all be involved in developing a plan.’’; ‘‘Before leaving hospital, stroke survivors and their carers should be given information about stroke support groups.’’; and ‘‘Carers should be offered support by health professionals.’’, were rated by all participants (n = 18, 100%) as ‘‘highly likely’’ or ‘‘likely’’ that research in these areas would have high impact on patients outcomes. Two recommendations were equally rated lowest (n = 12, 67%) as ‘‘highly likely’’ or ‘‘likely’’ to generate research with high impact on patient outcomes: ‘‘After leaving hospital, a decision about whether stroke survivors should live at home or in a residential care . should be made based on the wishes of stroke survivors and their carers’’; and ‘‘Health professionals should . give advice about different forms of complementary and alternative therapies.’’ (Table 4). Relationship between ‘‘worth’’ researching and possibility of generating research with high impact on patient outcomes. Overall, all recommendations were rated by at least half of participants (n = 9, 50%) as ‘‘worth’’ researching. Of these, 13 of the 20 recommendations were rated by 75% or more of participants as ‘‘worth’’ researching. The majority (67% to 100%) rated all recommendations as ‘‘highly likely’’ or ‘‘likely’’ that research would have a significant effect on patient outcomes. There was a positive correlation between participants’ responses to whether the recommendations were ‘‘worth’’ researching and whether research was thought to be ‘‘highly likely’’ or ‘‘likely’’ to have a significant impact (Spearman’s rho = 0.60, p = 0.005). Interestingly, the recommendation ‘‘Before going home . the stroke team . should assess the home to see if it meets the needs of stroke survivors’’ was rated by only 11 participants as ‘‘worth’’ researching (61%) but was rated by 17 participants (94%) as ‘‘highly likely’’ or ‘‘likely’’ to generate research with significant impact on patient outcomes. Similarly, two recommendations rated by 83% (n = 15) and 78% (n = 14) of participants respectively as ‘‘worth’’ researching were rated by only 72% (n = 13) and 67% (n = 12) accordingly as ‘‘highly likely’’ or ‘‘likely’’ to generate research with significant impact on patient outcomes (Table 4). Other topics not covered by the existing recommendations but identified by participants. Twelve participants who at-
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tended the Phase I session also identified 18 additional topics that existing recommendations do not already cover. Researchers grouped these topics into five different themes, namely, Support network, Psychosocial effects, Returning to work, Care provided by healthcare professionals and Awareness. The majority of the new topics listed by participants were relevant to the theme Support network (n = 8, 67%). Three participants (25%) listed two topics independently, namely, Effect of stroke support group and Fatigue. One participant raised the possibility of fatigue related to falls and aspiration. All participants (n = 12, 100%) rated the topics that they listed themselves as ‘‘worth’’ researching with the exception of one participant who listed Effect of stroke support group but subsequently rated it as not ‘‘worth’’ researching. Likewise, participants rated all topics that they listed as ‘‘highly likely’’ or ‘‘likely’’ that research on the additional topic would have significant impact on patient outcomes (n = 12, 100%) (Table 5).
Phase II Twenty WAGS members participated in the Phase II survey. Of those, 18 also had participated in the Phase I survey. The demographic details of participants in Phase I and Phase II were not significantly different (Table 3). Stroke research priorities. Thirteen recommendations rated by more than 75% of participants as ‘‘worth’’ researching in the Phase I were developed into the Phase II questionnaire. Of those 13 recommendations, the top three rated priorities for future stroke research were ‘‘Stroke . [is] a medical emergency.’’(median = 2.00, IQR = 6); ‘‘Ambulance staff should be trained to recognize stroke .’’ (median = 2.50, IQR = 4); and ‘‘Health professionals and the public should get education about how to recognize stroke early.’’ (median = 3.50, IQR = 7). The recommendation, ‘‘Stroke survivors should be offered support to return to work .’’ was rated as the lowest priority of all recommendations (median = 11.50, IQR = 5) (Table 6). In general, the recommendations under the topic heading Getting to hospital were ranked as the highest priorities (priority 1 to 3), followed by the recommendations under topic heading ‘‘Getting back into the community.’’ However, although the recommendations under the topic heading Living with stroke were generally ranked lower, the recommendation, ‘‘Carers should be offered support by health professionals as soon as possible after the stroke survivor has had a stroke,’’ under the same topic heading, was ranked as the fourth highest research priority (Table 6).
DISCUSSION In 1978, the World Health Organisation (WHO) saw the need to include people in the decision-making process concerning their own health care and this was encapsulated in the Declaration of Alma-Ata in 1978 and expressed in the following manner, ‘‘the people have the right and duty to participate individually and collectively in the planning and implementation of their health care.’’16 However, consumer involvement in research priority setting can be difficult as well as time consuming.8,17,18 Critics argue that consumers are not well placed to make decisions about research priorities due to their unrepresentative
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TABLE 3 DEMOGRAPHIC PROFILE OF PARTICIPANTS Phase I
Sex Male Female Status Carer Stroke survivor Number of strokes experienced by stroke survivor One More than One Stroke condition (self-rated) ‘‘Extremely severe’’ ‘‘Very severe’’ ‘‘Moderate’’ ‘‘Mild’’ Working status Not working, not looking for work Not working, but looking for work Paid work Volunteer work Working hours per week Not working 1-20 21-40 40+ Highest level of Education # No Intermediate or School Certificate Intermediate or School Certificate Leaving or High School Certificate Certificate/Diploma University or College Degree
Phase II Difference between Phase I and Phase II
n = 18
(%)
n = 20
(%)
10 8
(55) (45)
11 9
(55) (45)
P = 0.97
6 12
(33) (67)
6 14
(30) (70)
P = 0.83
(71) (29)
P = 0.80
(n = 12) 10 2
(n = 14) (83) (17)
10 4
(n = 12)
(n = 14)
0 2 9 1
(0) (17) (75) (8)
1 3 5 5
(7) (21) (36) (36)
P = 0.80^
8 0 8 2
(44) (0) (44) (12)
10 1 7 2
(50) (5) (35) (10)
P = 0.52x
8 5 4 1
(44) (29) (22) (5)
11 5 3 1
(55) (5) (15) (5)
P = 0.43V
2 6 3 4 3
(11) (33) (17) (22) (17)
5 5 2 4 3
(25) (25) (10) (20) (15)
P = 0.94*
#
Where percentages do not add to 100%, data were missing ‘‘Extremely severe’’ and ‘‘Very severe’’ versus ‘‘Moderate’’ and ‘‘Mild’’ x ‘‘Not working, not looking for work’’ and ‘‘Not working, but looking for work’’ versus ‘‘Paid work’’ and ‘‘Volunteer work’’ V ‘‘Not working’’ and ‘‘1-20’’ versus ‘‘21-40’’ and ‘‘40+’’ *‘‘No Intermediate or School Certificate’’, ‘‘Intermediate or School Certificate’’ and ‘‘Leaving or High school Certificate’’ versus ‘‘Certificate/Diploma’’ and ‘‘University or College Degree’’ ^
nature.5,19 Consumer samples may not represent all affected individuals and may focus on their personal experiences rather than prioritize research topics objectively.8 Further, consumers may not have appropriate qualifications or adequate information
about specific healthcare issues.5 However, findings from a study conducted in Australia indicated that public preferences in priority setting were highly valued and should nonetheless be taken into consideration regarding healthcare allocation.20
PARTICIPANTS’ VIEWS OF RECOMMENDATIONS AS ‘‘WORTH’’ RESEARCHING AND LIKELIHOOD OF RESEARCH TO HAVE SIGNIFICANT IMPACT ON PATIENT OUTCOMES (PHASE I) (N=18)
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TABLE 4
Likelihood of research having high impact on patient outcomes
Recommendations
Not Sure n (%)
Highly Unlikely and Unlikely n (%)
15 (83)
16 (89)
2 (11)
0
15 (83)
13 (72)
3 (17)
2 (11)
14 (78)
12 (67)
2 (11)
3 (17)
17 (94)
17 (94)
1 (6)
0
15 (83)
18 (100)
0
0
15 (83)
16 (89)
2 (11)
0
10 (56)
13 (72)
4 (22)
1 (6)
17 (94)
18 (100)
0
0
15 (83)
17(94)
1 (6)
0
14 (78)
17 (94)
1 (6)
0
13 (72)
17 (94)
1 (6)
0
13 (72)
14 (78)
3 (17)
1 (6)
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Highly Likely and Likely n (%)
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Organisation of care The stroke team should meet regularly with stroke survivors and their family. This meeting helps to involve stroke survivors and their family or carers in managing and planning care. Stroke survivors and their carers should have access to respite care. This may be provided in their home or a community facility. After leaving hospital, a decision about whether stroke survivors should live at home or in a residential care (such as hostel) should be made based on the wishes of stroke survivors and their carers. Getting to hospital Health professionals and the public should get education about how to recognise stroke early. That education needs to make it clear that stroke is a medical emergency. Stroke needs to be considered a medical emergency. It needs to be given a high priority by ambulance services. Ambulance staff should be trained to recognised stroke (for example, they should use an easy and standard test). Arriving at hospital. Getting back into the community Health professionals (including local doctor), the stroke survivor, and their family or carers should all be involved in developing a plan. This plan is about stroke care after hospital. Health professionals should provide training for family or carers before the stroke survivor leaves hospital. Stroke survivors and their family or carers should have the chance to identify and discuss their needs with the stroke team about what will happen when they leave the hospital. The needs involve physical, emotional, social and financial needs. Health professionals should follow up with stroke survivors and their carers after they have completed a formal rehabilitation program. Stroke survivors should have regular and ongoing assessment about their health condition by a member of the stroke team.
‘‘Worth’’ Researching n (%)
0 14 (78) 9 (50)
4 (22)
0 1 (6) 14 (78) 13 (72) 14 (78) 10 (56)
4 (22) 4 (22)
1 (6) 14 (78) 14 (78)
4 (22)
0 18(100) 15 (83)
0
0 18 (100) 15 (83)
0
0 12 (67) 10 (56)
Before going home, if required, one of the stroke team members should assess the home to see if it meets the needs of stroke survivors. Managing the effect of stroke Health professionals should know and be willing to give advice about different forms of complementary and alternative therapies (e.g., acupuncture, massage and herbal supplement). Living with stroke Before leaving hospital, stroke survivors and their carers should be given information about stroke support groups and the potential benefits should be explained. Carers should be offered support by health professionals as soon as possible after the stroke survivor has had stroke. Stroke survivors and their families/carers should be given information and advice about driving again after stroke. Stroke survivors should be offered support to return to work (or take up work). The local doctor should refer stroke survivors to other appropriate health professionals for routine review. Stroke survivors and their carers should have a chance to talk about sex after stroke and get help where needed by trained professionals.
17 (94)
5 (28)
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11 (61)
1 (6)
0
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Our study method clearly demonstrated that stroke survivors and carers can successfully participate in the setting of research priorities. Although a qualitative approach using focus groups has been used previously to obtain consumer views about research priorities,6 our study demonstrated that a quantitative approach may be used to investigate a predefined list of consumer-focused modified recommendations developed from clinical practice guidelines. We employed various strategies such as using nontechnical terms in the questionnaires, piloting the questionnaire with consumers, giving a brief explanation of the questionnaires with the use of PowerPointÒ presentations and the provision of writing assistance if required. We also provided criteria to inform research priority setting by consumers that have been supported by previous research.7 Using facilitated group sessions to complete the questionnaires provided the opportunity for participants to clarify issues such as the definition of various terms. The brief length of facilitated group sessions was also important, as stroke survivors may experience fatigue, hence compromising their cognitive function.21 We modified and condensed all recommendations with lower levels of evidence, including expert consensus opinion, from the Australian acute and rehabilitation stroke guidelines into simple, consumer-focused stroke recommendations, which enabled consumers without professional healthcare backgrounds to give their view on what might otherwise be viewed as ‘‘medically’’ focused recommendations. This in itself was a positive outcome from the study. Encouragingly, all recommendations were rated by at least half of participants as ‘‘worth’’ researching. The majority of participants rated all the recommendations as ‘‘highly likely’’ or ‘‘likely’’ that research would have significant impact for patient outcomes. Unsurprisingly, there was a positive correlation between participants’ responses to whether the recommendations were ‘‘worth’’ researching and whether the research about the recommendations would be ‘‘highly likely’’ or ‘‘likely’’ to have significant effect on patient outcomes. It is interesting to note that ‘‘Arriving at hospital’’ was rated by only 10 participants (56%) as ‘‘worth’’ researching, while the other 3 recommendations under the same topic heading, Getting to hospital, were ranked in the top 3 priorities for research. The recommendation, ‘‘Arriving at hospital’’ was a broad term and participants may not know the content involved. In a future study, examples may be given to clarify this consumer-focused and modified recommendation of this area. It is difficult to draw too many conclusions from these results. Several recommendations from each of the five themes were highly rated as ‘‘worth’’ researching but, in general, the results are similar within the five themes. No one theme yielded recommendations with obviously higher medians than any other, and any more sophisticated data analysis would be inappropriate given the small sample size. Nonetheless, results of this study serve as a reference point for any future work around stroke research priority setting; the value of that is that consumers undertook this work. Results may be helpful for stroke-patient advocacy groups to promote consumer involvement in stroke research priority setting in the future. Of note, participants identified 18 new areas for stroke research. Of these 18 suggestions, three were in the published
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TABLE 5 ADDITIONAL TOPICS IDENTIFIED BY PHASE I PARTICIPANTS (N=12)
Topics Support network Effect of stroke support group* Day trip away* Impact of visitors on stroke survivors while in hospital Financial support for carers on psychological consultation The importance of carers should be recognised* Psychosocial effects Depression* and confidence issue Increasing in alcohol consumption issue Impact of stroke on family relationship Returning to work Employers awareness about issues related to stroke Improvement in working condition for stroke survivors* When stroke survivors returning to work, referral should be made to an agency like the CRS to be informed of their options* Care provided by health professionals Difference in level of care provided by public hospital and private hospital The effects of stroke on stroke survivors and carers should be discussed between health professionals and stroke survivors and carers* Accessing allied health professionals such as physiotherapist and OT for stroke survivors* Awareness Fatigue Correlation between stress and stroke Correlation between stroke and heart problems* Raising health professionals and public’s awareness of symptoms of stroke
Numbers of Participants N=12 (%)
‘‘Worth’’ researching
3 (25) 1 (8) 1 (8) 1 (8) 2 (17)
Yes=2; No=1 Yes Yes Yes Yes
Highly Highly Highly Highly Highly
1 (8) 1 (8) 2 (17)
Yes Yes Yes
Highly likely Highly likely Highly likely
1 (8) 1 (8) 1 (8)
Yes Yes Yes
Highly likely Highly likely Highly likely
1 (8)
Yes
Highly likely
2 (17)
Yes
Likely
2 (17)
Yes
Highly Likely; Likely
3 2 2 2
Yes Yes Yes Yes
Highly Highly Highly Highly
(25) (17) (17) (17)
Impact
likely likely likely likely likely
likely likely likely likely
*
Italicized topics are covered in the original guidelines but may have been diluted or lost when the recommendations were condensed into the consumer-friendly version.
guidelines but had Level I or II evidence to inform care and, hence, were not relevant to our study; six were in our version but were missed by participants. Nine were completely new topics that were not mentioned in either of the two stroke guidelines. More than one participant mentioned nine of these topic areas; three participants independently listed fatigue and the value of stroke support groups. Again, small numbers preclude the drawing of too many conclusions, and not all the groups were able to score these topic areas as they were only identified in Phase I.
Research priorities developed by consumers have been shown to differ from those developed by health professionals.17 Consumer priorities for research do not include themes that are medically or scientifically based.17 Similarly, the stroke research priorities developed by consumers in our study were different from those stroke research priorities previously set by health professionals in the European community,9 Canada12 and the United States.10 Of the seven topic headings for stroke research identified by health professionals during the Stroke Research Workshop in Europe in 2005,9 three topics, namely ‘‘Optimizing the
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TABLE 6 CONSUMER-RANKED STROKE RESEARCH PRIORITIES (PHASE II)
delivery of stroke care,’’ ‘‘Recovery after stroke,’’ and ‘‘Stroke prevention’’ were similar to the topic headings developed in our study; however, all referred more to the biomedical aspect of care.9 All research priorities identified in the European workshop had a biomedical focus possibly because these were of more interest than other aspects to health professionals. For instance, a suggested research topic under ‘‘Stroke prevention’’
was ‘‘Understand genetic susceptibility to stroke, as well as the genetic influence on acute stoke pathology and recovery’’9 The report by Grant-Pearce and colleagues22 also identified mismatches in research priorities between health professionals and consumers, which again provides a rationale for the need to obtain consumer views in research priority setting. It also indicated that the uptake of the professionals’ research priorities
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alone can result in research that may not be of the interest to consumers.22 Consumers previously have stated that they are more comfortable giving an opinion about ‘‘lifestyle’’ recommendations and believe that health professionals would be better qualified to provide opinions regarding ‘‘medical’’ recommendations.13 A limitation of our study was that study participants comprised only a few self-selected participants from one stroke consumer-support group; however, the high participation rate demonstrated consumers’ interest in being involved in this research. A limitation in our data analysis was that the responses of both stroke survivors and carers were analyzed together. It is not known whether results were affected by the views of participants who attended as carer–stroke survivor pairs, though they completed the surveys individually. Due to the nature of the disease, stroke survivors are living with various degrees of physical and cognitive impairments and, consequently, some might argue that the ability of this population to participate in research priority setting is limited. However, our sample taken from the WAGS group had participated in a similar research study previously. That no participant needed writing assistance may mean that our sample was at the highfunctioning end of the stroke survivor continuum. A suggestion for future research would be to repeat the study with a larger number of participants to allow the differentiation of stroke survivor views from those of their carers. In addition, to minimize medical jargon, we summarized and condensed the recommendations, which may have introduced bias. Co-development of research priorities at the onset by health professionals and consumers may negate the need for this summarization in any future research priority setting activities. A focus group study is recommended for future research to explore further additional topics that may not have emerged from our study and allow in-depth discussion among participants.
CONCLUSION This quantitative approach has been shown to be a valid method for involving consumers in the setting of research priorities. Various strategies can be employed to overcome the difficulty of engaging consumers as shown by our study. The results of our study demonstrated that consumer views on stroke research priorities are different from those of health professionals as they are less medically focused. Therefore, it is important for health professionals and researchers to take consumer opinion into consideration when determining research priorities that may lead to better health outcomes.
Acknowledgments We would like to acknowledge the National Stroke Foundation and the Working Aged Group – Stroke Consumer Support Group for their valuable input and, in particular, Ms. Brenda Booth, Mr. Bill McNamara and Mrs. Jill McNamara. We would also like to thank Mingara Recreation Club for providing the meeting venue for this study. REFERENCES 1. National Stroke Foundation (NSF). (2007). Clinical guidelines for acute stroke management. Melbourne.
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2. National Stroke Foundation (NSF). (2005). Clinical management guidelines for stroke rehabilitation and recovery. Melbourne. 3. National Health and Medical Research Council (NHMRC). How to use the evidence: assessment and application of scientific evidence. Canberra: AusInfo; 2000. 4. National Health and Medical Research Council (NHMRC). A guide to the development, implementation and evaluation of clinical practice guidelines. Council NHaMR (Ed). Canberra: AusInfo; 1999. 5. Mullen P, Spurgeon P. Priority setting and the public. Oxon: Radcliffe Medical Press Ltd; 2000. 6. Oliver S. Patient involement in setting research agendas. (2006). Eur J Gastroenterol Hepatol 2006;18:935-8. 7. Tong A, Sainsbury P, Carter SM, et al. Patients’ priorities for health research: Focus group study of patients with chronic kidney disease. Nephrol Dial Transplant. 2008 April 29, 2008;23:3206-14. 8. Perkins P, Barclay S, Booth S. What are patients’ priorities for palliative care research? Focus group study. Palliat Med 2007;04;21:219–25. 9. Meairs S, Wahlgren N, Dirnagl U, et al. Stroke research priorities for the next decade: A representative view of the European scidentific community. Cerebrovasc Dis 2006;22:75-82. 10. National Institute of Neurological Disorders and Stroke (NINDS). Report of the stroke progress review group September 2006. National Institutes of Health; 2006. Available from: http://www.ninds.nih.gov/find_people/ groups/stroke_prg/09_2006_stroke_prg_report.htm. Accessed August 21, 2008. 11. Norrving B, Wester P, Sunnerhagen KS, et al. Beyond conventional stroke guidelines: setting priorities. Stroke July 1, 2007;38:2185-90. 12. Bayley MT, Hurdowar A, Teasell R, et al. Priorities for stroke rehabilitation and research: Results of a 2003 Canadian Stroke Network Consensus Conference. Archives of Physical Medicine and Rehabilitation 2007; 88:526-8. 13. Worrall L, Hoffmann T, Faint S. Consumer feedback about the clinical guidelines for acute stroke management. [Report for the National Stroke Foundation]. In press 2007. 14. Middleton S, Sangvatanakul P, Hillege S. Acute, rehabilitation and recovery modified stroke recommendations development. Sydney 2008. 15. Linstone HA, Toroff M. The Delphi method: Techniques and applications. London: Addison-Wesley; 1975. Available from; http://is.njit.edu/pubs/delphibook/. Accessed March 26, 2008. 16. World Health Organization. Declaration of Alma Ata: Report of the International Conference on Primary Health Care. Geneva. 1978; Available from: http://www. who.int/hpr/NPH/docs/declaration_almaata.pdf. Accessed April 12, 2008. 17. Brown K, Dyas J, Chahal P, et al. Discovering the research priorities of people with diabetes in a multicultural community: A focus group study. Br J Gen Pract 2006;56:206-13. 18. Smith E, Ross FM, Mackenzie A, et al. Developing a serviceuser framework to shape priorities for nursing and midwifery
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research. Journal of Research in Nursing 2005; January 1, 2005;10:107-18. 19. Ling T, editor. Reforming healthcare by consent: Involving those who matter. Oxon: Radcliffe Medical Press Ltd; 1999. 20. Wiseman V, Mooney G, Berry G, et al. Involving the general public in priority setting: Experiences from Australia. Soc Sci Med 2003;56:1001-12.
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21. Colle F, Bonan I, Gellez Lemaz MC, et al. Fatigue after stroke. Ann Readapt Med Phys 2006;49:361-4. 22. Grant-Pearce C, Miles I, Hills P. Mismatches in priorities for health research between professionals and consumers. A report to the standing advisory group on consumer involvement in the NHS R&D programme. Manchester: PREST Policy Research in Engineering, Science and Technology, Manchester University; 1999.
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Setting stroke research priorities: The consumer perspective Pukkaporn Sangvatanakul, RN BN(Hon), Sharon Hillege, RN, RM, BHS, P.Grad Cert TESOL, PhD, MRCNA, Senior Lecturer, Erin Lalor, BAppSc (Speech and Hearing) PhD GCCM, Chief Executive Officer, Christopher Levi, B Med Sci MBBS, FRACP, Director, Kelvin Hill, BAppSc (Physiotherapy) Grad. Dip. Bus. & Com., Manager and Adjunct Senior Lecturer, and Sandy Middleton, RN BAppSc (Nursing) MN, PhD, Director
Objectives: To test a method of engaging consumers in research priority-setting using a quantitative approach and to determine consumer views on stroke research priorities for clinical practice recommendations with lower levels of evidence (Level III and Level IV) and expert consensus opinion as published in the Australian stroke clinical practice guidelines. Design: Survey Setting: Urban community Subjects: Eighteen stroke survivors (n = 12) and carers (n = 6) who were members of the ‘‘Working Aged Group – Stroke’’ (WAGS) consumer support group. Main outcome measures: Phase I: Participants were asked whether recommendations were ‘‘worth’’ researching (‘‘yes’’ or ‘‘no’’); and, if researched, what potential impact they likely would have on patient outcomes. Phase II: Participants were asked to rank recommendations rated by more than 75% of participants in Phase I as ‘‘worth’’ researching and ‘‘highly likely’’ or ‘‘likely’’ to generate research with a significant effect on patient outcomes (n = 13) in order of priority for future stroke research. Results: All recommendations were rated by at least half (n = 9, 50%) of participants as ‘‘worth’’ researching. The majority (67% to 100%) rated all recommendations as ‘‘highly likely’’ or ‘‘likely’’ that research would have a significant effect on patient outcomes. Thirteen out of 20 recommendations were ranked for their research priorities. Recommendations under the topic heading Getting to hospital were ranked highest and Organization of care and Living with stroke were ranked as a lower priority for research. Discussion/Conclusion: This study provided an example of how to involve consumers in research priority setting successfully using a quantitative approach. Stroke research priorities from the consumer perspective were different from those of health professionals, as published in the literature; thus, consumer opinion should be considered when setting research priorities. (J Vasc Nurs 2010;28:121-131)
INTRODUCTION In Australia and internationally, clinical practice guidelines have been developed to assist health professionals in clinical decisionmaking. The National Stroke Foundation (NSF) has developed the Clinical Guidelines for Acute Stroke Management1 and the Clinical Guidelines for Stroke Rehabilitation and Recovery,2 both of which
are approved by the National Health and Medical Research Council (NHMRC). The guidelines contain recommendations for practice that are rated using the NHMRC levels of evidence taxonomy (from Level I: A systematic review of randomised controlled trials to Level IV: Case series).3 In some instances where there is no clear empirical evidence available, guidelines may be based on expert consensus opinion.4
From the Nursing Research Institute, St Vincent’s Hospital, Darlinghurst NSW 2010; School of Nursing & Midwifery, College of Health and Science, The University of Western Sydney, Penrith South DC NSW 1797; National Stroke Foundation, Melbourne VIC 3000; Brain & Mental Health Priority Research Centre, University of Newcastle & Hunter Medical Research Institute, and Acute Stroke Services, John Hunter Hospital, New Lambton Heights, NSW, 2305; Guidelines Program, National Stroke Foundation; Medicine, Western Clinical School, University of Sydney, Melbourne VIC 3000; Nursing Research Institute, St Vincent’s & Mater Health Sydney and Australian Catholic University, and National Centre for Clinical Outcomes Research (NaCCOR), Nursing and Midwifery Australia, Australian Catholic University, Nursing Research Institute, St. Vincent’s Hospital, Darlinghurst NSW 2010. Corresponding author: Sandy Middleton, RN BAppSc (Nursing) MN, PhD, Director, Nursing Research Institute, St Vincent’s & Mater Health Sydney and Australian Catholic University and Director, National Centre for Clinical Outcomes Research (NaCCOR), Nursing and Midwifery Australia, Australian Catholic University, Nursing Research Institute, Executive Suite, Level 5, de Lacy Building, St. Vincent’s Hospital, Victoria Street, Darlinghurst NSW 2010 (E-mail: [email protected]). 1062-0303/$36.00 Copyright Ó 2010 by the Society for Vascular Nursing, Inc. doi:10.1016/j.jvn.2010.09.001
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Almost half (n = 64, 43%) of the recommendations in the Clinical Guidelines for Acute Stroke Management1 are based on a lower level of evidence or expert opinion (5% level III evidence, 3% level IV evidence and 35% expert consensus opinion). In addition, more than half (52%, n = 90) of the recommendations in the Clinical Guidelines for Stroke Rehabilitation and Recovery2 are based on lower level of evidence or expert opinion (13% Level III evidence, 2% Level IV evidence and 37% expert consensus opinion). The NHMRC states that clinical guidelines should be based on the ‘‘best available evidence’’ and should be revised regularly.4 Topics that may require further research to fill in the ‘‘research gaps’’ should be identified should the need for research to upgrade the level of evidence for existing recommendations. However, it may not always be possible or even practical to undertake research for all recommendations with lower levels of evidence within a guideline,4 for example, due to ethical or economic constraints.4 For these reasons, logic would dictate that those recommendations that are not already based on the highest level of evidence should be identified and prioritized for future research. Historically, health professionals have played a dominant role in healthcare planning and delivery.5 In recent years, consumers, as healthcare recipients, have been encouraged to play an active role in service delivery and planning.6 Several studies have been conducted to determine consumer views of research priorities in a variety of health areas, such as treatment of chronic kidney disease7 and palliative care.8 Although international studies have been undertaken to examine research priority-setting in the area of stroke management,9-12 those studies examined health professionals’ views on stroke research priorities with resulting priority topics demonstrating a strong biomedical focus.9-12 The views of consumers about research priorities for stroke management are not well researched or reported. In 2007, a group of Australian researchers evaluated stroke patient views regarding the importance of the NSF stroke guidelines. To eliminate the jargon and reduce the amount of information, the NSF’s Clinical Guidelines for Acute Stroke Management1 was rewritten into plain, nontechnical English terms and condensed into 18 topic areas with consumer consultation.13 Participants then were asked to rate each topic area as to their importance in the stroke care process.13 However, this study evaluated only consumer perspectives regarding the importance of those topic areas, not the priorities for research.13 The study goals were first to test a method of engaging stroke consumers in research priority setting using a quantitative approach and second, to determine consumer views about stroke research priorities for recommendations with a lower level of evidence (Level III and Level IV) and expert consensus opinion from the Clinical Guidelines for Acute Stroke Management1 and the Clinical Guidelines for Stroke Rehabilitation and Recovery.2
Guidelines for Stroke Rehabilitation and Recovery2 were rewritten in nontechnical terms and condensed into 29 consumerfocused modified rehabilitation recommendations by a researcher (Sangvatanakul), a NSF representative (Hill) and three consumer representatives who were members of the Working Aged Group – Stroke (WAGS) consumer support group located in Gosford, New South Wales, Australia. The three representatives from WAGS consisted of a stroke survivor, a stroke survivor with a health professional background and a carer. Next, these recommendations were combined with the 18 topic areas previously developed by Worrall et al. (2007) and published in the Clinical Guidelines for Acute Stroke Management.1 Duplicates were deleted to form a comprehensive set of 34 consumer-focused modified stroke recommendations covering the acute stroke and rehabilitation phase.14 The levels of evidence for each consumer-focused modified stroke recommendation were determined. In 12 instances, the consumer-focused modified stroke recommendations were aggregated and, hence, encompassed more than one initial recommendation from either of the clinical guidelines. In these instances, rules for the classification of their levels of evidence were determined (Table 1). Among the 34 consumer-focused modified recommendations, 20 (59%) recommendations were considered to be based on a lower level of evidence (Level III and Level IV) and expert consensus opinion.
Participants Members of WAGS were invited to participate whether stroke survivors and/or carers. This group had previously assisted the NSF to evaluate the Clinical Guidelines for Acute Stroke Management in 2007 and had some understanding of participating in similar research.13 Data collection was undertaken in two phases. Various strategies were employed to assist the group which consisted of using laymen terms in the questionnaires, piloting the questionnaires with consumers, giving a brief explanation of the questionnaires with the use of PowerPointÒ presentations, supplying criteria on which to base a decision7 and the provision of writing assistance, if required. Phase I. Phase I data were collected at a 2-hour, specially convened group session facilitated by Sangvatanakul. Participants were asked to individually complete a questionnaire. Instructions were given, and rating scales were distributed. For each of the 20 consumer-focused modified recommendations with lower levels of evidence (Level III and Level IV) and expert consensus opinion, participants were asked whether the recommendation was ‘‘worth’’ researching (Yes/No). Consumers were given criteria to define ‘‘worth’’ researching as follows: -
METHOD
Development of Consumer-focused Modified Stroke Recommendations The process for this stage was informed by the method used by Worrall et al.13 First, recommendations from the Clinical
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-
Is it relevant to most stroke survivors, rather than just to you personally? Would research perhaps result in better care for patients? Would research lead to increased satisfaction for stroke survivors and their families? Would research be a good use of scarce funds?7
Next, consumers were asked how ‘‘likely’’ it would be that research for each of these 20 recommendations would have a ‘‘high impact’’ on patient outcomes. A 5-point Likert scale
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TABLE 1
TABLE 2
METHOD OF DETERMINING THE LEVEL OF EVIDENCE (LOE) FOR AGGREGATED RECOMMENDATIONS MADE UP OF SEVERAL RECOMMENDATIONS WITH DIFFERING LOE
DEFINITION OF THE RATING SCALE TO MEASURE LIKELY IMPACT15
Where an aggregated recommendation consisted of < 5 recommendations with varying LOE, if any of the initial recommendations were based on expert consensus opinion, the LOE was collectively determined as expert consensus opinion. Where an aggregated recommendation consisted of > 5 recommendations with varying LOE, if > 50% were based on Level II or greater, the LOE was determined to be Level I and Level II evidence Where recommendations for both the acute guidelines and the rehabilitation guidelines were identical but with different LOE, the most recently published acute guidelines LOE was used. One recommendation was noted as ‘‘extrapolated from Level I evidence,’’ and was determined as being expert consensus opinion.
(‘‘highly likely’’ to ‘‘highly unlikely’’) was used and definitions of the rating scale were provided on the questionnaire cover sheet (Table 2).15 A blank text area also was provided for participants to list additional topics that they considered to be ‘‘worth’’ researching. They also were asked to rate these additional topics for their impact using the scale previously described. In addition, 6 demographic questions were asked: age; sex; status (stroke survivor or carer); self-rated stroke condition (‘‘extremely severe,’’ ‘‘very severe,’’ ‘‘moderate’’ and ‘‘mild’’); number of strokes experienced; employment status (‘‘not working and not looking for work,’’ ‘‘not working but looking for work,’’ ‘‘volunteer work’’ and ‘‘working with pay’’); working hours; and highest level of education. Phase II. Two weeks following the Phase I meeting, Phase II data again were collected at a specially convened session facilitated by Sangvatanakul and lasting for one hour. The WAGS members were encouraged to participate in both Phase I and Phase II; however, if this were not possible, attendance at either of the meetings was acceptable. Recommendations rated by more than 75% of participants in Phase _ as ‘‘worth’’ researching and ‘‘highly likely’’ or ‘‘likely’’ to generate research with significant effects on patient outcomes were collated and developed into the Phase II questionnaire (note: These did not include those additional topic areas added by participants in Phase I). All participants were asked to rank these recommendations in order of priority for future stroke research. The lowest number was defined as having the highest priority for research and vice versa. The same demographic questions used for Phase I were used for Phase II. Writing assistance was not required for any participant in either Phase.
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The impact of the research would be positive and it is directly related to major issues in stroke care. Likely The impact of the research would be positive. It is directly related to major issues in stroke care, but it could not be applied until other problems were resolved. Not Sure The impact of the research cannot be measured. Unlikely The impact of the research is very limited and it does not relate to major issues in stroke care. Highly Unlikely The impact of the research will not make any difference to stroke care. Highly Likely
Data analysis Data were analysed using SPSS (version 16). Frequencies for each variable were determined. Phase I results were grouped by Sangvatanakul and Hill by themes using topic headings from the Clinical Guidelines for Acute Stroke Management,1 where appropriate. Otherwise, resesarchers developed new topic headings. The correlation between ‘‘worth’’ researching and the likelihood (‘‘highly likely’’ and ‘‘likely’’) of research having great significance on patient outcome was determined using Spearman’s rho. For Phase II, the median and standard deviation were determined for each recommendation. All recommendations were ranked by the median score to determine the final order for research priority. Recommendations with a lower median score indicated a higher research priority. In addition, ethical clearance was obtained from Australian Catholic University National Human Research Ethics Committee.
RESULTS
Phase I Eighteen WAGS members participated in the Phase I survey. The mean age of participants was 56 years (range: 44 to 68 years) and the majority were male (n = 10, 55%). Six carer and stroke survivor pairs attended the session (n = 12, 67%), and the other six stroke survivors attended the session alone (33%). Two thirds of participants were stroke survivors (n = 12, 67%) and the majority of them had experienced a stroke only once (n = 10, 83%). Most stroke survivors rated their stroke condition as ‘‘moderate’’ (n = 9, 75%). The majority of participants were working (n = 10, 56%), with almost half of participants undertaking paid work (n = 8, 44%) and two engaged in volunteer work (12%). Just over one third of participants had obtained a diploma certificate or university or college degree (n = 7, 40%) (Table 3).
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Recommendations rated as ‘‘worth’’ researching. All recommendations were rated by at least half of participants (n = 9) as ‘‘worth’’ researching. Of these, two recommendations were rated equally at the highest level as ‘‘worth’’ researching: ‘‘Health professionals and the public should get education about how to recognize stroke early.stroke is a medical emergency’’’’ and ‘‘Health professionals (including local doctor), the stroke survivor, and their family or carer should all be involved in developing a plan.’’ (n = 17, 94%). Only 9 participants rated the following recommendation as ‘‘worth’’ researching (50%) and this was the lowest percentage of all recommendations: ‘‘Stroke survivors and their carers should have a chance to talk about sex after stroke and get help where needed by trained professionals’’ (Table 4). Likelihood of research having a significant effect on patient outcomes. The majority of participants (n = 13-18, 72%-100%) rated all recommendations as ‘‘highly likely’’ or ‘‘likely’’ to generate research with high impact on patient outcomes. Of these, the following four recommendations: ‘‘Stroke .[is] a medical emergency.’’; ‘‘Health professionals. the stroke survivors, and . family . should all be involved in developing a plan.’’; ‘‘Before leaving hospital, stroke survivors and their carers should be given information about stroke support groups.’’; and ‘‘Carers should be offered support by health professionals.’’, were rated by all participants (n = 18, 100%) as ‘‘highly likely’’ or ‘‘likely’’ that research in these areas would have high impact on patients outcomes. Two recommendations were equally rated lowest (n = 12, 67%) as ‘‘highly likely’’ or ‘‘likely’’ to generate research with high impact on patient outcomes: ‘‘After leaving hospital, a decision about whether stroke survivors should live at home or in a residential care . should be made based on the wishes of stroke survivors and their carers’’; and ‘‘Health professionals should . give advice about different forms of complementary and alternative therapies.’’ (Table 4). Relationship between ‘‘worth’’ researching and possibility of generating research with high impact on patient outcomes. Overall, all recommendations were rated by at least half of participants (n = 9, 50%) as ‘‘worth’’ researching. Of these, 13 of the 20 recommendations were rated by 75% or more of participants as ‘‘worth’’ researching. The majority (67% to 100%) rated all recommendations as ‘‘highly likely’’ or ‘‘likely’’ that research would have a significant effect on patient outcomes. There was a positive correlation between participants’ responses to whether the recommendations were ‘‘worth’’ researching and whether research was thought to be ‘‘highly likely’’ or ‘‘likely’’ to have a significant impact (Spearman’s rho = 0.60, p = 0.005). Interestingly, the recommendation ‘‘Before going home . the stroke team . should assess the home to see if it meets the needs of stroke survivors’’ was rated by only 11 participants as ‘‘worth’’ researching (61%) but was rated by 17 participants (94%) as ‘‘highly likely’’ or ‘‘likely’’ to generate research with significant impact on patient outcomes. Similarly, two recommendations rated by 83% (n = 15) and 78% (n = 14) of participants respectively as ‘‘worth’’ researching were rated by only 72% (n = 13) and 67% (n = 12) accordingly as ‘‘highly likely’’ or ‘‘likely’’ to generate research with significant impact on patient outcomes (Table 4). Other topics not covered by the existing recommendations but identified by participants. Twelve participants who at-
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tended the Phase I session also identified 18 additional topics that existing recommendations do not already cover. Researchers grouped these topics into five different themes, namely, Support network, Psychosocial effects, Returning to work, Care provided by healthcare professionals and Awareness. The majority of the new topics listed by participants were relevant to the theme Support network (n = 8, 67%). Three participants (25%) listed two topics independently, namely, Effect of stroke support group and Fatigue. One participant raised the possibility of fatigue related to falls and aspiration. All participants (n = 12, 100%) rated the topics that they listed themselves as ‘‘worth’’ researching with the exception of one participant who listed Effect of stroke support group but subsequently rated it as not ‘‘worth’’ researching. Likewise, participants rated all topics that they listed as ‘‘highly likely’’ or ‘‘likely’’ that research on the additional topic would have significant impact on patient outcomes (n = 12, 100%) (Table 5).
Phase II Twenty WAGS members participated in the Phase II survey. Of those, 18 also had participated in the Phase I survey. The demographic details of participants in Phase I and Phase II were not significantly different (Table 3). Stroke research priorities. Thirteen recommendations rated by more than 75% of participants as ‘‘worth’’ researching in the Phase I were developed into the Phase II questionnaire. Of those 13 recommendations, the top three rated priorities for future stroke research were ‘‘Stroke . [is] a medical emergency.’’(median = 2.00, IQR = 6); ‘‘Ambulance staff should be trained to recognize stroke .’’ (median = 2.50, IQR = 4); and ‘‘Health professionals and the public should get education about how to recognize stroke early.’’ (median = 3.50, IQR = 7). The recommendation, ‘‘Stroke survivors should be offered support to return to work .’’ was rated as the lowest priority of all recommendations (median = 11.50, IQR = 5) (Table 6). In general, the recommendations under the topic heading Getting to hospital were ranked as the highest priorities (priority 1 to 3), followed by the recommendations under topic heading ‘‘Getting back into the community.’’ However, although the recommendations under the topic heading Living with stroke were generally ranked lower, the recommendation, ‘‘Carers should be offered support by health professionals as soon as possible after the stroke survivor has had a stroke,’’ under the same topic heading, was ranked as the fourth highest research priority (Table 6).
DISCUSSION In 1978, the World Health Organisation (WHO) saw the need to include people in the decision-making process concerning their own health care and this was encapsulated in the Declaration of Alma-Ata in 1978 and expressed in the following manner, ‘‘the people have the right and duty to participate individually and collectively in the planning and implementation of their health care.’’16 However, consumer involvement in research priority setting can be difficult as well as time consuming.8,17,18 Critics argue that consumers are not well placed to make decisions about research priorities due to their unrepresentative
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TABLE 3 DEMOGRAPHIC PROFILE OF PARTICIPANTS Phase I
Sex Male Female Status Carer Stroke survivor Number of strokes experienced by stroke survivor One More than One Stroke condition (self-rated) ‘‘Extremely severe’’ ‘‘Very severe’’ ‘‘Moderate’’ ‘‘Mild’’ Working status Not working, not looking for work Not working, but looking for work Paid work Volunteer work Working hours per week Not working 1-20 21-40 40+ Highest level of Education # No Intermediate or School Certificate Intermediate or School Certificate Leaving or High School Certificate Certificate/Diploma University or College Degree
Phase II Difference between Phase I and Phase II
n = 18
(%)
n = 20
(%)
10 8
(55) (45)
11 9
(55) (45)
P = 0.97
6 12
(33) (67)
6 14
(30) (70)
P = 0.83
(71) (29)
P = 0.80
(n = 12) 10 2
(n = 14) (83) (17)
10 4
(n = 12)
(n = 14)
0 2 9 1
(0) (17) (75) (8)
1 3 5 5
(7) (21) (36) (36)
P = 0.80^
8 0 8 2
(44) (0) (44) (12)
10 1 7 2
(50) (5) (35) (10)
P = 0.52x
8 5 4 1
(44) (29) (22) (5)
11 5 3 1
(55) (5) (15) (5)
P = 0.43V
2 6 3 4 3
(11) (33) (17) (22) (17)
5 5 2 4 3
(25) (25) (10) (20) (15)
P = 0.94*
#
Where percentages do not add to 100%, data were missing ‘‘Extremely severe’’ and ‘‘Very severe’’ versus ‘‘Moderate’’ and ‘‘Mild’’ x ‘‘Not working, not looking for work’’ and ‘‘Not working, but looking for work’’ versus ‘‘Paid work’’ and ‘‘Volunteer work’’ V ‘‘Not working’’ and ‘‘1-20’’ versus ‘‘21-40’’ and ‘‘40+’’ *‘‘No Intermediate or School Certificate’’, ‘‘Intermediate or School Certificate’’ and ‘‘Leaving or High school Certificate’’ versus ‘‘Certificate/Diploma’’ and ‘‘University or College Degree’’ ^
nature.5,19 Consumer samples may not represent all affected individuals and may focus on their personal experiences rather than prioritize research topics objectively.8 Further, consumers may not have appropriate qualifications or adequate information
about specific healthcare issues.5 However, findings from a study conducted in Australia indicated that public preferences in priority setting were highly valued and should nonetheless be taken into consideration regarding healthcare allocation.20
PARTICIPANTS’ VIEWS OF RECOMMENDATIONS AS ‘‘WORTH’’ RESEARCHING AND LIKELIHOOD OF RESEARCH TO HAVE SIGNIFICANT IMPACT ON PATIENT OUTCOMES (PHASE I) (N=18)
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TABLE 4
Likelihood of research having high impact on patient outcomes
Recommendations
Not Sure n (%)
Highly Unlikely and Unlikely n (%)
15 (83)
16 (89)
2 (11)
0
15 (83)
13 (72)
3 (17)
2 (11)
14 (78)
12 (67)
2 (11)
3 (17)
17 (94)
17 (94)
1 (6)
0
15 (83)
18 (100)
0
0
15 (83)
16 (89)
2 (11)
0
10 (56)
13 (72)
4 (22)
1 (6)
17 (94)
18 (100)
0
0
15 (83)
17(94)
1 (6)
0
14 (78)
17 (94)
1 (6)
0
13 (72)
17 (94)
1 (6)
0
13 (72)
14 (78)
3 (17)
1 (6)
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Highly Likely and Likely n (%)
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Organisation of care The stroke team should meet regularly with stroke survivors and their family. This meeting helps to involve stroke survivors and their family or carers in managing and planning care. Stroke survivors and their carers should have access to respite care. This may be provided in their home or a community facility. After leaving hospital, a decision about whether stroke survivors should live at home or in a residential care (such as hostel) should be made based on the wishes of stroke survivors and their carers. Getting to hospital Health professionals and the public should get education about how to recognise stroke early. That education needs to make it clear that stroke is a medical emergency. Stroke needs to be considered a medical emergency. It needs to be given a high priority by ambulance services. Ambulance staff should be trained to recognised stroke (for example, they should use an easy and standard test). Arriving at hospital. Getting back into the community Health professionals (including local doctor), the stroke survivor, and their family or carers should all be involved in developing a plan. This plan is about stroke care after hospital. Health professionals should provide training for family or carers before the stroke survivor leaves hospital. Stroke survivors and their family or carers should have the chance to identify and discuss their needs with the stroke team about what will happen when they leave the hospital. The needs involve physical, emotional, social and financial needs. Health professionals should follow up with stroke survivors and their carers after they have completed a formal rehabilitation program. Stroke survivors should have regular and ongoing assessment about their health condition by a member of the stroke team.
‘‘Worth’’ Researching n (%)
0 14 (78) 9 (50)
4 (22)
0 1 (6) 14 (78) 13 (72) 14 (78) 10 (56)
4 (22) 4 (22)
1 (6) 14 (78) 14 (78)
4 (22)
0 18(100) 15 (83)
0
0 18 (100) 15 (83)
0
0 12 (67) 10 (56)
Before going home, if required, one of the stroke team members should assess the home to see if it meets the needs of stroke survivors. Managing the effect of stroke Health professionals should know and be willing to give advice about different forms of complementary and alternative therapies (e.g., acupuncture, massage and herbal supplement). Living with stroke Before leaving hospital, stroke survivors and their carers should be given information about stroke support groups and the potential benefits should be explained. Carers should be offered support by health professionals as soon as possible after the stroke survivor has had stroke. Stroke survivors and their families/carers should be given information and advice about driving again after stroke. Stroke survivors should be offered support to return to work (or take up work). The local doctor should refer stroke survivors to other appropriate health professionals for routine review. Stroke survivors and their carers should have a chance to talk about sex after stroke and get help where needed by trained professionals.
17 (94)
5 (28)
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11 (61)
1 (6)
0
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Our study method clearly demonstrated that stroke survivors and carers can successfully participate in the setting of research priorities. Although a qualitative approach using focus groups has been used previously to obtain consumer views about research priorities,6 our study demonstrated that a quantitative approach may be used to investigate a predefined list of consumer-focused modified recommendations developed from clinical practice guidelines. We employed various strategies such as using nontechnical terms in the questionnaires, piloting the questionnaire with consumers, giving a brief explanation of the questionnaires with the use of PowerPointÒ presentations and the provision of writing assistance if required. We also provided criteria to inform research priority setting by consumers that have been supported by previous research.7 Using facilitated group sessions to complete the questionnaires provided the opportunity for participants to clarify issues such as the definition of various terms. The brief length of facilitated group sessions was also important, as stroke survivors may experience fatigue, hence compromising their cognitive function.21 We modified and condensed all recommendations with lower levels of evidence, including expert consensus opinion, from the Australian acute and rehabilitation stroke guidelines into simple, consumer-focused stroke recommendations, which enabled consumers without professional healthcare backgrounds to give their view on what might otherwise be viewed as ‘‘medically’’ focused recommendations. This in itself was a positive outcome from the study. Encouragingly, all recommendations were rated by at least half of participants as ‘‘worth’’ researching. The majority of participants rated all the recommendations as ‘‘highly likely’’ or ‘‘likely’’ that research would have significant impact for patient outcomes. Unsurprisingly, there was a positive correlation between participants’ responses to whether the recommendations were ‘‘worth’’ researching and whether the research about the recommendations would be ‘‘highly likely’’ or ‘‘likely’’ to have significant effect on patient outcomes. It is interesting to note that ‘‘Arriving at hospital’’ was rated by only 10 participants (56%) as ‘‘worth’’ researching, while the other 3 recommendations under the same topic heading, Getting to hospital, were ranked in the top 3 priorities for research. The recommendation, ‘‘Arriving at hospital’’ was a broad term and participants may not know the content involved. In a future study, examples may be given to clarify this consumer-focused and modified recommendation of this area. It is difficult to draw too many conclusions from these results. Several recommendations from each of the five themes were highly rated as ‘‘worth’’ researching but, in general, the results are similar within the five themes. No one theme yielded recommendations with obviously higher medians than any other, and any more sophisticated data analysis would be inappropriate given the small sample size. Nonetheless, results of this study serve as a reference point for any future work around stroke research priority setting; the value of that is that consumers undertook this work. Results may be helpful for stroke-patient advocacy groups to promote consumer involvement in stroke research priority setting in the future. Of note, participants identified 18 new areas for stroke research. Of these 18 suggestions, three were in the published
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TABLE 5 ADDITIONAL TOPICS IDENTIFIED BY PHASE I PARTICIPANTS (N=12)
Topics Support network Effect of stroke support group* Day trip away* Impact of visitors on stroke survivors while in hospital Financial support for carers on psychological consultation The importance of carers should be recognised* Psychosocial effects Depression* and confidence issue Increasing in alcohol consumption issue Impact of stroke on family relationship Returning to work Employers awareness about issues related to stroke Improvement in working condition for stroke survivors* When stroke survivors returning to work, referral should be made to an agency like the CRS to be informed of their options* Care provided by health professionals Difference in level of care provided by public hospital and private hospital The effects of stroke on stroke survivors and carers should be discussed between health professionals and stroke survivors and carers* Accessing allied health professionals such as physiotherapist and OT for stroke survivors* Awareness Fatigue Correlation between stress and stroke Correlation between stroke and heart problems* Raising health professionals and public’s awareness of symptoms of stroke
Numbers of Participants N=12 (%)
‘‘Worth’’ researching
3 (25) 1 (8) 1 (8) 1 (8) 2 (17)
Yes=2; No=1 Yes Yes Yes Yes
Highly Highly Highly Highly Highly
1 (8) 1 (8) 2 (17)
Yes Yes Yes
Highly likely Highly likely Highly likely
1 (8) 1 (8) 1 (8)
Yes Yes Yes
Highly likely Highly likely Highly likely
1 (8)
Yes
Highly likely
2 (17)
Yes
Likely
2 (17)
Yes
Highly Likely; Likely
3 2 2 2
Yes Yes Yes Yes
Highly Highly Highly Highly
(25) (17) (17) (17)
Impact
likely likely likely likely likely
likely likely likely likely
*
Italicized topics are covered in the original guidelines but may have been diluted or lost when the recommendations were condensed into the consumer-friendly version.
guidelines but had Level I or II evidence to inform care and, hence, were not relevant to our study; six were in our version but were missed by participants. Nine were completely new topics that were not mentioned in either of the two stroke guidelines. More than one participant mentioned nine of these topic areas; three participants independently listed fatigue and the value of stroke support groups. Again, small numbers preclude the drawing of too many conclusions, and not all the groups were able to score these topic areas as they were only identified in Phase I.
Research priorities developed by consumers have been shown to differ from those developed by health professionals.17 Consumer priorities for research do not include themes that are medically or scientifically based.17 Similarly, the stroke research priorities developed by consumers in our study were different from those stroke research priorities previously set by health professionals in the European community,9 Canada12 and the United States.10 Of the seven topic headings for stroke research identified by health professionals during the Stroke Research Workshop in Europe in 2005,9 three topics, namely ‘‘Optimizing the
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TABLE 6 CONSUMER-RANKED STROKE RESEARCH PRIORITIES (PHASE II)
delivery of stroke care,’’ ‘‘Recovery after stroke,’’ and ‘‘Stroke prevention’’ were similar to the topic headings developed in our study; however, all referred more to the biomedical aspect of care.9 All research priorities identified in the European workshop had a biomedical focus possibly because these were of more interest than other aspects to health professionals. For instance, a suggested research topic under ‘‘Stroke prevention’’
was ‘‘Understand genetic susceptibility to stroke, as well as the genetic influence on acute stoke pathology and recovery’’9 The report by Grant-Pearce and colleagues22 also identified mismatches in research priorities between health professionals and consumers, which again provides a rationale for the need to obtain consumer views in research priority setting. It also indicated that the uptake of the professionals’ research priorities
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alone can result in research that may not be of the interest to consumers.22 Consumers previously have stated that they are more comfortable giving an opinion about ‘‘lifestyle’’ recommendations and believe that health professionals would be better qualified to provide opinions regarding ‘‘medical’’ recommendations.13 A limitation of our study was that study participants comprised only a few self-selected participants from one stroke consumer-support group; however, the high participation rate demonstrated consumers’ interest in being involved in this research. A limitation in our data analysis was that the responses of both stroke survivors and carers were analyzed together. It is not known whether results were affected by the views of participants who attended as carer–stroke survivor pairs, though they completed the surveys individually. Due to the nature of the disease, stroke survivors are living with various degrees of physical and cognitive impairments and, consequently, some might argue that the ability of this population to participate in research priority setting is limited. However, our sample taken from the WAGS group had participated in a similar research study previously. That no participant needed writing assistance may mean that our sample was at the highfunctioning end of the stroke survivor continuum. A suggestion for future research would be to repeat the study with a larger number of participants to allow the differentiation of stroke survivor views from those of their carers. In addition, to minimize medical jargon, we summarized and condensed the recommendations, which may have introduced bias. Co-development of research priorities at the onset by health professionals and consumers may negate the need for this summarization in any future research priority setting activities. A focus group study is recommended for future research to explore further additional topics that may not have emerged from our study and allow in-depth discussion among participants.
CONCLUSION This quantitative approach has been shown to be a valid method for involving consumers in the setting of research priorities. Various strategies can be employed to overcome the difficulty of engaging consumers as shown by our study. The results of our study demonstrated that consumer views on stroke research priorities are different from those of health professionals as they are less medically focused. Therefore, it is important for health professionals and researchers to take consumer opinion into consideration when determining research priorities that may lead to better health outcomes.
Acknowledgments We would like to acknowledge the National Stroke Foundation and the Working Aged Group – Stroke Consumer Support Group for their valuable input and, in particular, Ms. Brenda Booth, Mr. Bill McNamara and Mrs. Jill McNamara. We would also like to thank Mingara Recreation Club for providing the meeting venue for this study. REFERENCES 1. National Stroke Foundation (NSF). (2007). Clinical guidelines for acute stroke management. Melbourne.
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2. National Stroke Foundation (NSF). (2005). Clinical management guidelines for stroke rehabilitation and recovery. Melbourne. 3. National Health and Medical Research Council (NHMRC). How to use the evidence: assessment and application of scientific evidence. Canberra: AusInfo; 2000. 4. National Health and Medical Research Council (NHMRC). A guide to the development, implementation and evaluation of clinical practice guidelines. Council NHaMR (Ed). Canberra: AusInfo; 1999. 5. Mullen P, Spurgeon P. Priority setting and the public. Oxon: Radcliffe Medical Press Ltd; 2000. 6. Oliver S. Patient involement in setting research agendas. (2006). Eur J Gastroenterol Hepatol 2006;18:935-8. 7. Tong A, Sainsbury P, Carter SM, et al. Patients’ priorities for health research: Focus group study of patients with chronic kidney disease. Nephrol Dial Transplant. 2008 April 29, 2008;23:3206-14. 8. Perkins P, Barclay S, Booth S. What are patients’ priorities for palliative care research? Focus group study. Palliat Med 2007;04;21:219–25. 9. Meairs S, Wahlgren N, Dirnagl U, et al. Stroke research priorities for the next decade: A representative view of the European scidentific community. Cerebrovasc Dis 2006;22:75-82. 10. National Institute of Neurological Disorders and Stroke (NINDS). Report of the stroke progress review group September 2006. National Institutes of Health; 2006. Available from: http://www.ninds.nih.gov/find_people/ groups/stroke_prg/09_2006_stroke_prg_report.htm. Accessed August 21, 2008. 11. Norrving B, Wester P, Sunnerhagen KS, et al. Beyond conventional stroke guidelines: setting priorities. Stroke July 1, 2007;38:2185-90. 12. Bayley MT, Hurdowar A, Teasell R, et al. Priorities for stroke rehabilitation and research: Results of a 2003 Canadian Stroke Network Consensus Conference. Archives of Physical Medicine and Rehabilitation 2007; 88:526-8. 13. Worrall L, Hoffmann T, Faint S. Consumer feedback about the clinical guidelines for acute stroke management. [Report for the National Stroke Foundation]. In press 2007. 14. Middleton S, Sangvatanakul P, Hillege S. Acute, rehabilitation and recovery modified stroke recommendations development. Sydney 2008. 15. Linstone HA, Toroff M. The Delphi method: Techniques and applications. London: Addison-Wesley; 1975. Available from; http://is.njit.edu/pubs/delphibook/. Accessed March 26, 2008. 16. World Health Organization. Declaration of Alma Ata: Report of the International Conference on Primary Health Care. Geneva. 1978; Available from: http://www. who.int/hpr/NPH/docs/declaration_almaata.pdf. Accessed April 12, 2008. 17. Brown K, Dyas J, Chahal P, et al. Discovering the research priorities of people with diabetes in a multicultural community: A focus group study. Br J Gen Pract 2006;56:206-13. 18. Smith E, Ross FM, Mackenzie A, et al. Developing a serviceuser framework to shape priorities for nursing and midwifery
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research. Journal of Research in Nursing 2005; January 1, 2005;10:107-18. 19. Ling T, editor. Reforming healthcare by consent: Involving those who matter. Oxon: Radcliffe Medical Press Ltd; 1999. 20. Wiseman V, Mooney G, Berry G, et al. Involving the general public in priority setting: Experiences from Australia. Soc Sci Med 2003;56:1001-12.
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21. Colle F, Bonan I, Gellez Lemaz MC, et al. Fatigue after stroke. Ann Readapt Med Phys 2006;49:361-4. 22. Grant-Pearce C, Miles I, Hills P. Mismatches in priorities for health research between professionals and consumers. A report to the standing advisory group on consumer involvement in the NHS R&D programme. Manchester: PREST Policy Research in Engineering, Science and Technology, Manchester University; 1999.