Background
Author | Health state description |
---|---|
Robinson et al. 2001 [13] |
Mild stroke
|
• Your arm and leg are a little weak on one side | |
• Your speech is a little slurred but people understand you | |
• You may be unable to perform some of your usual activities | |
• You can look after yourself as usual | |
For the rest of your life
| |
Severe stroke
| |
• One side of your body is totally limp (paralysed) | |
• Your speech is slurred - it is very hard to understand you | |
• You are unable to perform most of your usual activities | |
• You cannot look after yourself without help | |
For the rest of your life
| |
Hallan et al. [14] |
Minor stroke (Rankin scale: level 2-3)
|
• Your right arms is limp (paralysed) and your leg is slightly weakened | |
• You can think, read and speak clearly | |
• You have full control of bladder and bowel | |
• You can walk at normal speed, but with a slight limp | |
• You must learn to write with the left arm | |
• You need some help with feeding, dressing and other tasks normally requiring both arms | |
Major stroke (Rankin scale: level 4-5)
| |
• The right side of your body is totally limp (paralysed) | |
• You can think clearly | |
• Your speech is slow and unclear but understandable | |
• You have full control of bladder and bowel | |
• You cannot walk at all so you must use a wheelchair | |
• You need some help for feeding, dressing and transferring | |
You are totally dependent on help for bathing
| |
You may need to go to a nursing home
|
Methods
Search strategy for health state descriptions
Search strategy for patients’ experience of stroke
Content analysis and interpretation
Results
Health state descriptions
Preference elicitation study | Objective | Research subjects | Types of stroke covered by health state descriptors | Development of health state descriptions: information sources | Method of elicitation |
---|---|---|---|---|---|
Solomon et al. 1994 [24] | To examine patient preferences for different outcomes of stroke including death | All outpatients referred to a neuro-diagnostics laboratory for ultrasound evaluation of the carotid artery | Consequences of stroke: mild, moderate and severe impairment of three types of neurological deficit: motor, language and cognitive. Descriptions for a painless fatal stroke and perfect health. | Stroke deficit types scaled in terms of severity classifications: mild, moderate and severe impairment. Scaling validity of stroke deficit types: tested by three neurologists specialized in stroke care. | Rank and scale method over a 100 point range: 100 representing perfect health and 0 representing the worst possible health state. |
Age, y(mean ± SD ): 73 ± 9 | |||||
Gender, % female: 45 | |||||
Country: USA | |||||
No reference to how or why deficit types were identified | |||||
Gage et al. 1996 [33] | To determine how stroke and stroke prophylaxis affect quality of life using direct preference elicitation | Patients with atrial fibrillation, at least 50 years of age, could read English and who did not reside in a convalescent hospital | Mild, moderate and major stroke | Categorised by progressively more severe neurological deficit based on Modified Rankin Scale (mild - mRS 1 or 2, moderate 3 or 4, severe 4 or 5). Utilised van Hoeyweghen et al. [36] which recommended that stroke descriptions of function cover multiple domains: fine and gross motor skills, spoken and written language are, and cognitive and psychosocial function | Time trade-off and standard gamble |
Age, y(mean ± SD ): 70.1 ± 7.3 | |||||
Gender, % male: 86 | |||||
Country: USA | |||||
Shin et al. 1997 [34] | To determine younger patients’ perceptions of quality of life with a stroke by eliciting utility values | Younger patients with arteriovenous malformations who are at risk of a stroke or have experienced one. | Major and minor stroke | No information regarding how stroke severity classifications were developed | Standard gamble |
Age, y(mean)(range): 37(18-57) | |||||
Gender: not reported | |||||
Country: Canada | |||||
Samsa et al. 1998 [17] | To examine attitudes toward hypothetical major stroke | Patients at increased risk of stroke including those with and without a history of cerebrovascular symptoms but at increased risk of stroke due to conditions such as atrial fibrillation, hypertension and vascular heart disease | Major stroke with and without aphasia | No information regarding how stroke severity classifications were developed | Time trade-off |
Age, y(mean): 65 | |||||
Gender, % male: 52 | |||||
Country: USA | |||||
Hallan et al. 1999 [14] | To elicit valid quality of life estimates and the highest acceptable treatment risk of different outcomes after stroke | Healthy people, non stroke medical patients and stroke survivors 20-84 years old | Minor and major stroke | Classifications for minor and major stroke based on Rankin scale 2-3 and 4-5 respectively | Standard gamble, time trade-off and direct scaling |
Age, y(mean): not reported | |||||
Gender: not reported | |||||
Country: Norway | |||||
Robinson et al. 2001 [13] | To elicit patient valuations of health states relevant to the assessment of the prevention of stroke by warfarin anticoagulation therapy | Patients over the age of 60 years with atrial fibrillation | Mild and severe stroke as well as hospital managed warfarin and major bleed | Adapted from 2 previous studies | Standard gamble |
Age, y(mean)(range): 73(60-87) | |||||
Gender, % male: 54 | |||||
Country: England | |||||
Slot and Berge 2009 [35] | To ascertain patients’ preferences for thrombolytic treatment for acute stroke | Elderly people at five day care centres: ischaemic stroke survivors and age- matched control subjects who were at risk of stroke | Mild, moderately severe and severe ischaemic stroke | Based on Modified Rankin Scale for mild (mRS =1), moderately severe (mRS =3) and severe (mRS = 5) stroke | Standard gamble |
Age, y(mean ± SD): 78 ± 6 | |||||
Gender: not reported | |||||
Country: Norway |
Patients’ experience of stroke
Author & date | Title of article | Country | Sample characteristics | Details | |
---|---|---|---|---|---|
1 | Nilsson I, Jansson L, Norberg A. 1997 [45] | To meet with stroke: Patients’ experiences and aspects seen through a screen of crises. | Sweden | n =10 | Narrative interviews one month and two months after discharge. Phenomenological hermeneutic analysis. |
9 male, 1 female | |||||
Age: 53-81 | |||||
2 | Pound P, Gompertz P, Ebrahim S. 1998 [49] | Illness in the context of older age: The case of stroke. | UK | n =40 | In-depth semi-structured interviews. Grounded theory and constant comparison. |
21 male, 19 female | |||||
Age: 40-87 | |||||
Predominantly working-class elderly | |||||
3 | Pound P, Gompertz P, Ebrahim S. 1998 [57] | A patient-centred study of the consequences of stroke. | UK | As above | As above |
4 | Wyller, T.B; Kirkevold, M. 1999 [58] | How does a cerebral stroke affect quality of life? Towards an adequate theoretical account. | Norway | n =6 | Interviewed three years after stroke. Thematic analysis |
4 male, 2 female. | |||||
Age: 65-85 | |||||
5 | Pilkington F. 1999 [59] | A qualitative study of life after stroke. | Canada | n =13 | 32 interviews at 3 time points: during acute stay, 1 month and 3 months after stroke. Longitudinal descriptive exploratory analysis. |
9 male, 4 female | |||||
Age: 40-91 | |||||
6 | Secrest J, Thomas S. 1999 [46] | Continuity and discontinuity: the quality of life following stroke. | US | n =14 | Interviewed between nine months and 23 years after stroke. Existential phenomenological methodology. |
7 male, 7 female | |||||
Age: 40-93 | |||||
7 | Ellis-Hill CS, Payne S, Ward C. 2000 [51] | Self-body split: Issues of identity in physical recovery following a stroke. | UK | n =8 | Life narrative approach, interviews during hospital stay, 6 months and one year post-discharge. Twenty four interviews in total. |
5 male, 3 female | |||||
Age: 56-82 | |||||
8 | Bendz M. 2000 [53] | Rules of relevance after a stroke | Sweden | n =10 | Interviews three to four months after incident. Medical records also analysed. Discourse analysis. |
6 male, 4 female | |||||
Age: 58-65 | |||||
1st time stroke survivors | |||||
9 | Dowswell GP, Lawler JP, Dowswell TP, Young JF, Forster AP, Hearn JP. 2000 [60] | Investigating recovery from stroke: A qualitative study. | UK | n =30 | Interviews after an RCT, 13-16 months post-stroke. Thematic analysis. |
stroke patients | |||||
15 caregivers | |||||
10 | Burton CR. 2000 [39] | Living with stroke: A phenomenological study. | UK | n =6 | Tracked for 12 months after stroke. 73 interviews in total. Phenomenology and grounded theory methods. |
2 male, 4 female | |||||
Age: 52-81 | |||||
11 | Eaves YD. 2000 [50] | `What happened to me’: Rural African American elders’ experiences of stroke | US | n =8 | Descriptive narrative analysis. |
2 male, 6 female | |||||
Age: 56-79 | |||||
African American elders | |||||
10 care-givers | |||||
12 | O’Connell B, Hanna B, Penney W, Pearce J, Owen M, Warelow P. 2001 [38] | Recovery after stroke: A qualitative perspective. | Australia | Stroke survivors | Five focus groups, three with stroke survivors, 2-180 months after stroke, one with carers, and one with key informants. Total of 40 participants. Content analysis |
Age: 20-89 | |||||
Carers and key informants | |||||
13 | Kirkevold M. 2002 [61] | The unfolding illness trajectory of stroke. | Norway | n =9 | 63 interviews. First interview 1-2 weeks after onset. Prospective and longitudinal case studies |
mild to moderately affected stroke patients | |||||
14 | Hilton E. 2002 [54] | The meaning of stroke in elderly women: a phenomenological investigation. | US | n =5 | Interviewed twice in non-institutionalised settings at least 1 year post-stroke. Hermeneutic phenomenology. |
Elderly women | |||||
Age: 66-80 years | |||||
15 | Gubrium JF, Rittman MR, Williams C, Young ME, Boylstein CA. 2003 [62] | Benchmarking as everyday functional assessment in stroke recovery. | US | Male stroke survivors of various ages and from three ethnic groups (Hispanic, African American, and non-Hispanic White) | 40 in-depth qualitative interviews one month following discharge |
16 | Kvigne K, Kirkevold M. 2003 [41] | Living with bodily strangeness: Women’s 17experiences of their changing and unpredictable body following a stroke. | Norway | n =25 | Interviewed three times: during 1st 6 weeks, 6 months and one year post-stroke. Phenomenological and feminist study. |
25 female | |||||
Age: 37-78 | |||||
Women in rural Norway | |||||
17 partnered | |||||
17 | Kvigne K, Kirkevold M, Gjengedal E.2004 [42] | Fighting back - struggling to continue life and preserve the self, following a stroke. | Norway | As above | As above |
18 | Murray CD, Harrison B. 2004 [44] | The meaning and experience of being a stroke survivor: an interpretative phenomenological analysis. | UK | n =10 | 5 interviewed, 5 corresponded by e-mail. Averaged 9 years post-stroke. Interpretative Phenomenological Analysis (IPA) |
4 male, 6 female | |||||
Mean age: 48.8 years | |||||
19 | Carlsson G, Möller A, Blomstrand C. 2004 [48] | A qualitative study of the consequences of `hidden dysfunctions’ one year after a mild stroke in persons <75 years. | Sweden | n =15 | Interviews analysed with grounded theory |
8 male, 7 female | |||||
Age: 30-69 | |||||
Patients with mild stroke living with spouse | |||||
20 | Faircloth CA, Boylstein C, Rittman M, Gubrium JF. 2005 [52] | Constructing the stroke: Sudden-onset narratives of stroke survivors. | US | n =111 | In-depth interviews. Data collected at months1, 6, 12, 18 and 24 after discharge, but only data from 1, 6, and 12 reported here. Narrative interpretive method. |
Male veterans | |||||
Average age: 67 | |||||
From 3 ethnic groups: Puerto Rican Hispanic; African American, and non-Hispanic White. | |||||
21 | Clarke P, Black SE. 2005 [55] | Quality of life following stroke: Negotiating disability, identity, and resources. | Canada | n =8 | Interviewed 7 months to 8 years post stroke. Selected principles of grounded theory used. |
3 male, 5 female | |||||
Age: 60 and above | |||||
Living in a community dwelling | |||||
22 | Lobeck M, Thompson AR, Shankland MC. 2005 [43] | The experience of stroke for men in retirement transition. | UK | n =7 | Interviewed more than 6 months post-stroke. Interpretative Phenomenological Analysis. |
7 male | |||||
Age: 64-70 | |||||
From a working class background. | |||||
23 | Stone SD. 2005 [56] | Reactions to invisible disability: The experiences of young women survivors of hemorrhagic stroke. | Canada | n =22 | Open ended in-depth interviews. Constant comparison method. |
22 female | |||||
Age: 8-49 at the time of stroke | |||||
Age: 19-57 at the time of interview | |||||
From four different countries: Scotland, England, U.S. and Canada, majority Caucasian | |||||
24 | Olofsson A, Andersson SO, Carlberg B. 2005 [63] | `If only I manage to get home I’ll get better’-Interviews with stroke patients after emergency stay in hospital on their experiences and needs. | Sweden | n =9 | Interviews with patients with experience of stroke approximately 4 months previously. Thematic analysis. |
Age: 64-83 | |||||
25 | Alaszewski A, Alaszewski H, Potter J. 2006 [37] | Risk, uncertainty and life threatening trauma: Analysing stroke survivor’s accounts of life after stroke. | UK | n =31 | Interviews with survivor or carer in individual interviews or in focus groups. Analysis based on grounded theory. |
Age: 38-89 | |||||
26 | Boylstein C, Rittman M, Hinojosa R. 2007 [47] | Metaphor shifts in stroke recovery. | US | n =49 | War veterans from Florida and Puerto Rico. In-depth interviews at month 1 and 6 post stroke. Grounded theory |
49 male | |||||
27 | Jones F, Mandy A, Partridge C. 2008 [40] | Reasons for recovery after stroke: A perspective based on personal experience. Disability and Rehabilitation. | UK | n =10 | Interviewed between 6 weeks and 13 months after onset. Phenomenological approach |
6 male, 4 female | |||||
Mean age: 61.8 | |||||
28 | Popovich JM, Fox PG, Bandagi R. [64] | Coping with stroke: Psychological and social dimensions in U.S. Patients. | US | n =60 | Interviewed within the first two weeks after their stroke. Thematic analysis. |
Age: 51-89 | |||||
Ethnicity: Black |
Content analysis
Author | Solomon et al. [ [24]] | Gage et al. [ [33] | Hallan et al. [ [14]] | Slot & Berge [ [35] | Shin et al. [ [34]] | Robinson et al. [ [13]] | Samsa et al. [ [17]] |
---|---|---|---|---|---|---|---|
Year | 1994 | 1996 | 1999 | 2009 | 1997 | 2001 | 1998 |
Stroke severity | Mild/moderate severe | Mild/moderate/major | Minor/major | Mild/moderate/severe | Minor/major | Mild/severe | Major |
Categories
| |||||||
Paralysis | x | x | x | x | x | x | x |
Dependence | x | x | x | x | x | x | x |
Feeling weakness- numbness, tingling | x | x | x | x | x | x | |
Mobility and ambulation | x | x | x | x | x | ||
Expressive problems | x | x | x | x | x | x | |
Coordination & dexterity | x | x | x | x | |||
Memory/thinking | x | x | x | x | |||
Returning to normal activities | x | x | x | x | |||
Facial droop | x | x | x | ||||
Toileting | x | x | |||||
Care arrangements | x | x | |||||
Mortality | x | x | |||||
Pain | x | ||||||
Receptive problems | x | ||||||
Continuing or worsening disability | x | ||||||
Number of categories | 13 | 9 | 9 | 8 | 6 | 5 | 4 |
TBW “Are you thinking about the fact that you had a stroke when you say you have changed, or are you thinking more in general?”R “No, since I had the stroke. I don’t recognize myself. It is awful. You are in a way degraded. I am, even though you cannot see anything on me. Everybody says that I’m so not and so on. There’s no help in that. Nobody realizes how I am in reality.” (Case 4) [58]
Preference elicitation studies (n = 7) | Counts, (%) | Qualitative literature (n = 28) | Counts, (%) |
---|---|---|---|
Paralysis | 7 (100) | Change in self-identity, social role | 26 (93) |
Dependence i.e. feeding, dressing, washing | 7 (100) | Emotional difficulties | 25 (89) |
Feeling weakness. numbness, tingling | 6 (86) | Mobility and ambulation | 24 (86) |
Expressive problems | 6 (86) | Returning to normal regular activities | 24 (86) |
Mobility and ambulation | 5 (71) | Support and networks | 23(82) |
Coordination and dexterity | 4 (57) | Coordination and dexterity | 23 (82) |
Memory and thinking | 4 (57) | Recovery, getting better | 22 (79) |
Returning to normal regular activities | 4 (57) | Dependence i.e. feeding, dressing, washing | 20 (71) |
Facial droop | 3 (43) | Expressive problems | 17 (61) |
Toileting | 2 (29) | Fatigue | 16 (57) |
Discharge from care and care arrangements | 2 (29) | Perception by others | 15 (54) |
Mortality | 2 (29) | Unpredictability, unreliability | 14 (50) |
Pain | 1 (14) | Paralysis | 14 (50) |
Receptive problems | 1 (14) | Concern for NOK | 14 (50) |
Continuing or worsening disability | 1 (14) | Memory and thinking | 13 (46) |
Dizzy and faint | 0 (0) | Discharge from care and care arrangements | 13 (46) |
Sight | 0 (0) | Continuing or worsening disability | 12 (43) |
Fatigue | 0 (0) | Perplexity | 11 (39) |
Mind-body split | 0 (0) | Further risk | 11 (39) |
Loss of swallow | 0 (0) | Feeling weakness. numbness, tingling | 11 (39) |
Concern for NOK | 0 (0) | Mortality | 11 (39) |
Change in self-identity, social role | 0 (0) | Dissociation of self and body | 9 (32) |
Unpredictability, unreliability | 0 (0) | Dizzy and faint | 6 (21) |
Perplexity | 0 (0) | Pain | 6 (21) |
Perception by others | 0 (0) | Sight | 6 (21) |
Support and networks | 0 (0) | Toileting | 4 (14) |
Emotional difficulties | 0 (0) | Facial droop | 3 (11) |
Further risk | 0 (0) | Loss of swallow | 3 (11) |
Recovery, getting better | 0 (0) | Receptive problems | 2 (7) |
“The one thing that’s very difficult for me as a person. . . I cannot relate, or quickly relate, back to where I was before I had the stroke. So, that comparison, I just can’t get it through my head to let that go, that I can’t do that.” (Mr. H. N.) [55]
Comparison of health state descriptions and patients’ experience: thematic synthesis
Domains | Preference elicitation studies (n = 7), (%) | Qualitative literature (n = 28), (%) |
---|---|---|
Biophysical features
| ||
Mobility and ambulation | 5 (71) | 24 (86) |
Coordination and dexterity | 4 (57) | 23 (82) |
Fatigue | 0 (0) | 16 (57) |
Paralysis | 7 (100) | 14 (50) |
Feeling weakness- numbness, tingling | 6 (86) | 11 (39) |
Dizzy/faint | 0 (0) | 6 (21) |
Pain | 1(14) | 6 (21) |
Sight | 0 (0) | 6 (21) |
Toileting | 2 (29) | 4 (14) |
Facial droop | 3 (43) | 3 (11) |
Loss of swallow | 0 (0) | 3 (11) |
Mood and cognition
| ||
Emotional difficulties | 0 (0) | 25 (89) |
Expressive problems | 6 (86) | 17 (61) |
Memory/thinking | 4 (57) | 13 (46) |
Perplexity | 0 (0) | 11 (39) |
Dissociation of self and body | 0 (0) | 9 (32) |
Receptive problems | 1 (14) | 2 (7) |
Prognosis
| ||
Getting better | 0 (0) | 22 (79) |
Continuing or worsening disability | 1 (14) | 12 (43) |
Further risk | 0 (0) | 11 (39) |
Mortality | 2 (29) | 11 (39) |
Social features
| ||
Change in self-identity, social role | 0 (0) | 26 (93) |
Returning to normal activities | 4 (57) | 24 (86) |
Support and networks | 0 (0) | 23 (82) |
Dependence i.e. feeding, dressing, washing | 7 (100) | 20 (71) |
Perception by others | 0 (0) | 15 (54) |
Unpredictability, unreliability | 0 (0) | 14 (50) |
Concern for NOK | 0 (0) | 14 (50) |
Discharge from care and care arrangements | 2 (29) | 13 (46) |
“Such a small and simple thing that you used to do in no time at all without even thinking, you, well, you now have to put all your energy into it... and also when you have to carry something in, you sort of feel how useless it is (I, male 59 years, married)” [53]“This feeling of fatigue, it comes as quick as a bolt of lightning. I don’t feel any signals, and all of a sudden I’m totally exhausted. I should have a timer that tickled me every hour, so I know that I should stop and take a rest” [48]
“I thought that it could not be true! I felt desperate because of what had happened. I thought that it could not be true, so I tried to walk, but I couldn’t. . . . I became very depressed and cried a lot.” [42]
“ this is why I’m so frustrated - everything I do, I’m so slow to what I used to be.” [60]