'PDSAFE' - a multi-dimensional model of falls-rehabilitation for people with Parkinson's. A mixed methods analysis of therapists' delivery and experience.

OBJECTIVE: To explore the clinical reasoning of physiotherapists using PDSAFE; according to disease severity and their experiences of treatment delivery in a large fall-prevention trial for people with Parkinson's (PwP). DESIGN: A descriptive study of delivering PDSAFE. Semi-structured interviews explored therapists' experiences. SETTING: A two-group, home-based, multi-centred, single-blinded, randomised controlled trial showed no overall effect on fall reduction between groups but demonstrated a significant secondary effect relating to disease severity with benefits to balance, falls efficacy and near-falls for all. PARTICIPANTS: Physiotherapists with a background in neurology and older-person rehabilitation were trained in the delivery of PDSAFE INTERVENTION: A multi-dimensional, individually tailored and progressive, home-based programme. RESULTS: Fifteen physiotherapists contributed to the 2587 intervention sessions from the PDSAFE trial and six of those physiotherapists took part in the interviews. The personalised intervention was reflected in the range of strategies and exercises prescribed. Most commonly prescribed fall-avoidance strategies were 'Avoiding tripping', 'Turning' and 'Freezing Cues' and all possible combinations of balance and strength training within the programme were selected. PwP with greater disease severity were more likely to have received less challenging strategies, balance and strengthening exercises than those with lower disease severity. Therapists considered the focus on fall events and fall avoidance strategies an improvement on 'impairment only' treatment. The presence of cognitive deficits, co-morbidities and dyskinesia were the most challenging aspects of delivering the intervention. CONCLUSION: Falls management for PwP is complex and compounded by the progressive nature of the condition. Physiotherapists both delivered and positively received PDSAFE. (248 words) The trial registration number is ISRCTN 48152791.

A randomized controlled feasibility trial exploring partnered ballroom dancing for people with Parkinson's disease.

OBJECTIVE: To determine the feasibility of a Dance Centre delivering a programme of mixed dances to people with Parkinson's and identify suitable outcomes for a future definitive trial. DESIGN: A two-group randomized controlled feasibility trial. METHODS: People with Parkinson's were randomized to a control or experimental group (ratio 15:35), alongside usual care. In addition, participants in the experimental group danced with a partner for one hour, twice-a-week for 10 weeks; professional dance teachers led the classes and field-notes were kept. Control-group participants were given dance class vouchers at the end of the study. Blinded assessments of balance, mobility and function were completed in the home. Qualitative interviews were conducted with a subsample to explore the acceptability of dance. RESULTS: A total of 51 people with Parkinson's (25 male) with Hoehn and Yahr scores of 1-3 and mean age of 71 years (range 49-85 years), were recruited to the study. Dance partners were of similar age (mean 68, range 56-91 years). Feasibility findings focused on recruitment (target achieved); retention (five people dropped out of dancing); outcome measures (three measures were considered feasible, changes were recommended). Proposed sample size for a Phase III trial, based on the 6-minute walk test at six months was 220. Participants described dance as extremely enjoyable and the instructors were skilled in instilling confidence and motivation. The main organizational challenges for a future trial were transport and identifying suitable dance partners. CONCLUSION: We have demonstrated the feasibility of conducting the study through a Dance Centre and recommend a Phase III trial.

Fall frequency, predicting falls and participating in falls research: similarities among people with Parkinson's disease with and without cognitive impairment.

OBJECTIVE: We compared fall frequency and prediction among People with Parkinson's Disease (PwP) with and without cognitive impairment (CI); researchers sometimes overlook the former, concerned about consent, recall and adherence and differences in fall frequency and predictability. METHODS: We recruited 101 PwP from one clinic, used the Montreal Cognitive Assessment to measure CI, noted repeated falls recalled retrospectively over 12 months and evaluated 'repeated falls' and 'difficulty turning' as predictors of falls over three months. RESULTS: Participant median age was 76 years, and time since diagnosis 6 years. Of 40 participants without CI, 40% recalled falls and 55% fell during follow-up (1.9 (±3.8) falls/person), the sensitivity of fall history being 57% and of turning 36%. Of 36 participants with mild CI, 42% recalled falls and 42% fell during follow-up (1.2 (±1.8) falls/person), the sensitivity of fall history being 67% and of turning 69%. Of 25 participants with moderate CI, 60% recalled falls and 58% fell during follow-up (1.2 (±1.8) falls/person), the sensitivity of fall history being 71% and of turning 69%. CONCLUSIONS: Researchers need not exclude people with CI assuming falls are more frequent and less predictable than among those without. Fall rates (falls/person during follow-up) were similar among people with and without CI. Falls and difficulty turning were more sensitive predictors of falling in those with CI than those without: a simple mobility test may suggest an individual's risk of falling if a history is unavailable. Most PwP with moderate CI fall repeatedly: carer involvement facilitates their inclusion in research.

Sequence and onset of whole-body coordination when turning in response to a visual trigger: comparing people with Parkinson's disease and healthy adults.

Turning round is a routine everyday activity that can often lead to instability. The purpose of this study was to investigate abnormalities of turning among people with Parkinson's disease (PwPD) through the measurement of sequence of body segments and latency response. Participants were asked to turn 180° and whole-body movements were recorded using CODAmotion and Visio Fast eye tracking equipment. Thirty-one independently mobile PwPD and 15 age-matched healthy controls participated in the study. We found that contrary to common belief, the head preceded movement of all other body segments (eyes, shoulders, pelvis, first and second foot). We also found interaction between group and body segment (P=0.005), indicating that overall, PwPD took longer to move from head to second foot than age-matched healthy controls. For PwPD only, interactions were found between disease severity and body segment (P<0.0001), between age group and body segment (P<0.0001) and between gender and body segments (P<0.0001). For each interaction, longer time periods were noted between moving the first foot after the pelvis, and moving the second foot after the first, and this was noted for PwPD in Hoehn and Yahr stage III-IV (in comparison to Hoehn and Yahr stage I-II); for PwPD who were under 70 years (in comparison with 70 years or over); and for ladies (in comparison with men). Our results indicate that in PwPD and healthy elderly, turning-on-the-spot might not follow the top-to-bottom approach we know from previous research.

Resuming previously valued activities post-stroke: who or what helps?

PURPOSE: In this article, we aim to develop the understanding of what helps or hinders resumption of valued activities up to 12-months post-stroke. METHOD: As part of a longitudinal study, semi-structured interviews were conducted with 19 people with stroke and eight informal carers 12-months post-stroke. Interviews covered ongoing effects of stroke, experience of trying to resume activities highlighted as important pre-stroke and factors that influenced progress. Interviews were transcribed, coded and analysed in depth to explore this aspect of the experience of living with stroke. RESULTS: Valued activities discussed related to employment; domestic and social roles including driving; hobbies, sports and socialising. Outcomes for individuals were influenced by: aspects of physical or cognitive disability; environmental factors; the adaptability of the individual; support from others and professional help. Inability to resume activities impacted on people's sense of self and quality of life, but some tolerated change and presented themselves as adaptable. CONCLUSIONS: This study indicates a long-term role for rehabilitation services such as: identifying the significance of different types of activities; providing access to support and treatment for debilitating symptoms such as fatigue and dizziness; addressing patients' emotional and behavioural responses to their condition; working with patients' wider social networks and where appropriate, supporting adaptation to a changed way of life.

Going home to get on with life: patients and carers experiences of being discharged from hospital following a stroke.

PURPOSE: In this paper we aim to develop the understanding of what constitutes a 'good' or 'poor' experience in relation to the transition from hospital to home following a stroke. METHOD: Semi-structured interviews were carried out with 20 people and 13 carers within one month of being discharged from hospital following a stroke. Interviews covered views of mobility recovery and support from therapy and services. Interviews were transcribed verbatim, coded and analysed in depth in order to explore the discharge process. RESULTS: Participants described models of recovery, which involved a sense of momentum and getting on with their life. Discharge was successful if: (i) This sense of momentum was maintained, (ii) they felt supported, and (iii) they felt informed about what was happening. Discharge was seen as difficult when: (a) Momentum was perceived to be lost, (b) people did not feel supported, or (c) they felt in the dark about the plans or their recovery. CONCLUSIONS: The discharge experience could be improved by healthcare professionals understanding and exploring patients' individual models of recovery. This would allow professionals to: (a) Access patients concerns, (b) develop programmes addressing these, (c) correct misinterpretations, (d) keep people fully informed, and (e) share and validate the experience, to reduce their sense of isolation.

Dysfunctional turning in Parkinson's disease.

PURPOSE: People with Parkinson's disease (PD) frequently freeze or fall turning: They turn slowly taking numerous steps. We aimed to describe more fully the differences observed on turning between people with and without PD, in particular the extent of left-right asymmetry and the correlations between turning and age, balance and PD severity, using a simple clinical test. METHOD: Twenty-eight people with PD (median age 71; median years since diagnosis eight) and 12 controls (median age 70) performed the video-based Standing Start 180 degrees Turn Test. We counted turning steps (n), evaluated turn time (sec), type and quality (0 - 5, based on independence, ground clearance, stability, continuity and posture) and calculated the 95% limits of left-right agreement. RESULTS: The groups differed (p < 0.004) on step count (medians 4.5 vs. 3), time (2.3 sec vs. 1.7 sec) and quality (4 vs. 5). In the PD group, 75% turned 'on-the-spot' and differences turning left and right were marked (e.g., 95% upper limit for step count 6.6). Among controls, 42% turned 'on-the-spot' and turning was symmetrical (e.g., 95% upper limit for step count 1.7). Step count was most closely correlated with self-assessed disability in PD (r = 0.67; p = 0.001) and with age among controls (r = 0.87; p = 0.001). CONCLUSIONS: People having difficulty turning are likely to have trouble with many everyday activities and thus may benefit from rehabilitation. Directional asymmetry in turning is easily identifiable and future studies should explore its diagnostic value.

The circumstances of falls among people with Parkinson's disease and the use of Falls Diaries to facilitate reporting.

PURPOSE: Falls are common in Parkinson's disease (PD). Falls Diaries are one way of recording fall frequency and the surrounding circumstances; completing them encourages recall, and their content focuses intervention. We reviewed the diaries completed by people with PD during a randomized controlled trial (RCT) of fall prevention to ascertain the key circumstances surrounding falls. METHOD: We asked independently mobile, cognitively intact people with a diagnosis of PD to maintain a Falls Diary throughout a six-month RCT. We sent monthly diary sheets on which to answer questions about the 'Location', 'Fall-related activity', 'Perceived cause', 'Landing' and 'Consequences' of every fall. We coded responses and counted frequencies. RESULTS: Of the 142 RCT participants (mean age 72 years; mean years since diagnosis 8), 135 completed the trial and their diary. We excluded 11 (8%) for missing data and/or unintelligible writing. The 124 remaining diaries recorded 639 falls: 80% happened at home, commonly in bedrooms, living areas, kitchens and gardens. Fallers had been ambulant in 45% of events, standing in 32% and transferring in 21%. Six 'activity-cause combinations' accounted for 55% of falls (tripping 13%; freezing, festination and retropulsion 11%; and postural instability when bending or reaching 9%, transferring 8%, walking 7% and washing or dressing 7%). Misjudgement and distraction played a part in 12% of falls described. CONCLUSIONS: Of over 600 falls surveyed, most happened at home, provoked by postural instability, tripping and freezing. Environmental adaptation and cognitive training should be trialled in falls prevention in PD, plus or minus traditional movement rehabilitation. Most participants completed Falls Diaries successfully. We advocate diary use, with follow-up interviews, in research and clinically. People with handwriting difficulty may require a typed diary, proxy diarist or interview.

Predicting people with stroke at risk of falls.

BACKGROUND: falls are common following a stroke, but knowledge about predicting future fallers is lacking. OBJECTIVE: to identify, at discharge from hospital, those who are most at risk of repeated falls. METHODS: consecutively hospitalised people with stroke (independently mobile prior to stroke and with intact gross cognitive function) were recruited. Subjects completed a battery of tests (balance, function, mood and attention) within 2 weeks of leaving hospital and at 12 months post hospital discharge. RESULTS: 122 participants (mean age 70.2 years) were recruited. Fall status at 12 months was available for 115 participants and of those, 63 [55%; 95% confidence interval (CI) 46-64] experienced one or more falls, 48 (42%; 95% CI 33-51) experienced repeated falls, and 62 (54%) experienced near-falls. All variables available at discharge were screened as potential predictors of falling. Six variables emerged [near-falling in hospital, Rivermead leg and trunk score, Rivermead upper limb score, Berg Balance score, mean functional reach, and the Nottingham extended activities of daily living (NEADL) score]. A score of near-falls in hospital and upper limb function was the best predictor with 70% specificity and 60% sensitivity. CONCLUSION: participants who were unstable (near-falls) in hospital with poor upper limb function (unable to save themselves) were most at risk of falls.

The influence of attention deficits on functional recovery post stroke during the first 12 months after discharge from hospital.

BACKGROUND: Attention deficits have been linked to poor recovery after stroke and may predict outcome. We explored the influence of attention on functional recovery post stroke in the first 12 months after discharge from hospital. METHODS: People with stroke completed measures of attention, balance, mobility and activities of daily living (ADL) ability at the point of discharge from hospital, and 6 and 12 months later. We used correlational analysis and stepwise linear regression to explore potential predictors of outcome. RESULTS: We recruited 122 men and women, mean age 70 years. At discharge, 56 (51%) had deficits of divided attention, 45 (37%) of sustained attention, 43 (36%) of auditory selective attention and 41 (37%) had visual selective attention deficits. Attention at discharge correlated with mobility, balance and ADL outcomes 12 months later. After controlling for the level of the outcome at discharge, correlations remained significant in only five of the 12 relationships. Stepwise linear regression revealed that the outcome measured at discharge, days until discharge and number of medications were better predictors of outcome: in no case was an attention variable at discharge selected as a predictor of outcome at 12 months. CONCLUSIONS: Although attention and function correlated significantly, this correlation was reduced after controlling for functional ability at discharge. Furthermore, side of lesion and the attention variables were not demonstrated as important predictors of outcome 12 months later.

Effectiveness of physiotherapy in Parkinson's disease: the feasibility of a randomised controlled trial.

To study the feasibility of a large randomised controlled trial (RCT) evaluating the effectiveness of physiotherapy in Parkinson's disease (PD), 173 patients were asked to participate in a study with random allocation to best practice physiotherapy, or to no physiotherapy. The primary outcome measures were the Parkinson's disease questionnaire-39, the Parkinson activity scale, and a patient preference outcome scale (PPOS). Only 14% of the patients could be included in the study. The PPOS showed the largest effect size (0.74) with a significant group effect (p<0.05). Specific alterations to the study design to ensure successful RCTs in this field are recommended.

Interference between balance, gait and cognitive task performance among people with stroke living in the community.

PURPOSE: To explore differences in cognitive-motor interference between people with stroke and controls when performing functional tasks and to compare dual task performance of stroke fallers and non-fallers. METHOD: Thirty-six people with stroke (mean age 66.5, SD 11.8, mean time since onset 16 months, range 7 - 56) and 24 controls (mean age 62.3, SD 11.61) performed balance and gait tasks in isolation and in conjunction with a cognitive task (remembering a seven item-shopping list). Three-dimensional movement analysis was used to assess anterior posterior (AP) and lateral (ML) sway; 5 m walk time, stride length and velocity. RESULTS: In the single task condition, people with stroke had greater AP sway, reduced velocity and stride length and a longer 5 m walk time than controls (p < 0.01). In the dual task condition, sway reduced and gait slowed in both groups (p < 0.01 for AP sway, stride length, velocity, walk time); only the increase in walk time was greater in people with stroke than in the controls (F = 4.2, p = 0.046). Cognitive performance was maintained during the balance trials but deteriorated during the dual task gait trials in people with stroke (p = 0.017). Similar trends were noted for fallers and non-fallers with stroke: Only group effects for stride length and velocity reached significance (p < 0.05) and only the reduction in stride length was significantly greater among fallers than non-fallers (F = 12.3, p = 0.001). CONCLUSIONS: People with stroke and controls employed similar strategies during the simultaneous performance of simple functional and silent cognitive tasks and maintained postural stability. Increased walk time and decreased cognitive recall were greater for people with stroke and reduced stride length distinguished fallers from non-fallers.

A pilot study of the effect of aerobic exercise on people with moderate disability multiple sclerosis.

OBJECTIVE: A pilot study to investigate the effect of aerobic exercise on the mobility and function of people with moderate disability multiple sclerosis (MS). DESIGN: A small group, comparative, pre- and post-intervention study. SETTING: A gymnasium within a general hospital. SUBJECTS: Eight subjects, all female, average age 45 years (range 33-61) with moderate disability MS (Kurtzke scale 4-6), were recruited; six completed the study. INTERVENTION: Intervention consisted of bi-weekly sessions of 30 min cycling on a static bike at their maximal level of exertion for 12 weeks. MAIN MEASURES: The stability of each individual's condition was established pre-intervention using three baseline assessments over two weeks. A battery of tests (the 10-metre and 6-min walk tests, the Functional Reach, the Gulick and the Guys Neurological Disability Scale) were completed pre and post intervention. Potential negative effects were recorded on the Fatigue Severity Scale and the Modified Ashworth Scale. An independent rater completed assessments post intervention. Inter-rater reliability was found to be acceptable. RESULTS: Comparisons pre and post intervention (Wilcoxon signed ranked test) showed significant improvement on the Guys Neurological Disability Scale (p = 0.026), with the mean score reducing from 13 to 9, and the 6-min walk test (p = 0.046), with the mean distance increasing from 200 m to 261 m. Other measures failed to reach significance. CONCLUSIONS: Findings from this pilot study suggest overall disability and mobility improved with the aerobic training. A positive treatment effect in this small study suggests the need for a larger trial. Knowledge of how to establish predictive heart rate and how to monitor the effects of cycling with people with MS will be used to inform future clinical trials.

Stops walking when talking as a predictor of falls in people with stroke living in the community.

OBJECTIVE: To test "Stops walking when talking" (SWWT) as a predictor of falls among people with stroke living in the community. METHODS: People with stroke were identified through hospital records. Mobility, ADL (activities of daily living) ability, mental state, mood, and SWWT were assessed in a single session. Participants were followed prospectively for six months, using falls diaries and regular telephone calls. RESULTS: Sixty three participants (36 men, 27 women; mean (SD) age 68.4 (10.6)) were recruited. Four subjects had a brainstem lesion, 30 had right hemisphere, and 29 left hemisphere infarctions. Mean time since onset of stroke was 20 months (range 2-72). Twenty six subjects stopped walking when a conversation was started and 16 of them fell during the six month follow up period (11 experienced repeated falls). For all fallers (>or=1) the positive predictive value of SWWT was 62% (16/26), the negative predictive value 62% (23/37), specificity 70% (23/33) and sensitivity 53% (16/30). For repeat fallers (>or=2) the positive predictive value of SWWT was 42% (11/26), the negative predictive value 89% (33/37), specificity 69% (33/48) and sensitivity 73% (11/15). Those who stopped walking were significantly more disabled (p<0.001)-that is, they were more dependent in activities of daily living, had worse gross function as well as worse upper and lower limb function, and had depression (p = 0.012). CONCLUSIONS: The specificity of the SWWT test was lower but sensitivity was higher than previously reported. Although the SWWT test was easy to use, its clinical usefulness as a single indicator of fall risk in identifying those community dwelling people with stroke most at risk of falls and in need of therapeutic intervention is questionable.

Developing methods to evaluate how people with Parkinson's Disease turn 180 degrees: an activity frequently associated with falls.

PURPOSE: To develop a test that identified fallers from their turning strategies, as people with Parkinson's Disease (PD) commonly fall turning. METHOD: We compared (1) Turn Types demonstrated when turning 180 degrees during the Timed Up and Go Test (TUG Test) by 19 non-fallers and 29 fallers (median age 71) and (2) Turn Types, Turning Steps, Heelstrike, Stability and the Use of Space and Support demonstrated when turning 180 degrees during an everyday activity by 15 non-fallers and 26 fallers (median age 75). Turns were rated from video by observers blinded to group. Inter-observer agreement was tested. RESULTS: Similar proportions of fallers and non-fallers demonstrated multiple-step Turn Types during the TUG Test (69% v 58%; p=0.433) and the everyday activity (66% vs. 46%; p=0.241). When turning, similar proportions of each group lacked Heelstrike, lost Stability and used the available Space and Support (p>0.7); Turning Step counts were also similar (p=0.891). Inter-observer agreement proved acceptable except for Turn Type during everyday activity (Kappa=0.46). CONCLUSIONS: The anticipated differences between fallers and non-fallers were not identified, perhaps obscured by insufficiently or overly challenging protocols and/or the compensations deployed by fallers. Further methodological development is needed in the analysis of fall-related activities with high-risk groups.

A study to evaluate the met and unmet needs of members belonging to Young Stroke groups affiliated with the Stroke Association.

PURPOSE: To examine the met and unmet needs of young people with stroke who accessed services run by the Stroke Association. METHODS: One hundred and thirty-five out of 200 members of 14 participating Young Stroke groups completed and returned the postal version of the Southampton Needs Assessment Questionnaire for Stroke questionnaire. RESULTS: Young Stroke group members had a median of five unmet needs. An analysis of these needs showed that information about the person's stroke, help with finances, assistance with non-care activities (e.g. help with social activities) and help with maintaining intellectual fulfilment were the four most frequently reported ones. There was no association between the number of unmet needs reported and factors such as age, time since stroke and social class. CONCLUSIONS: Young Stroke group members may be more aware of what their unmet needs are and have better knowledge in accessing existing health and social service resources. Nevertheless, these findings show that people with stroke considered the provision of information geared to their own needs as important. Statutory services should personalize information to individual's specific situation and should also tackle other problems, not only physical ones, experienced by young people with strokes.

People with stroke living in the community: Attention deficits, balance, ADL ability and falls.

PURPOSE: To describe levels of attention deficits among people with stroke living in the community and explore relationships between attention, balance, function and falls. METHOD: Forty-eight mobile community-dwelling people with stroke (30 men, 18 women, mean age 68.4 +/- 11.2) were recruited to this cross-sectional investigation through General Practitioners. Twenty-six participants had a right, 21 a left hemisphere infarction and one had a brain stem lesion; mean time since stroke was 46 months (range five to 204). Participants' were interviewed about fall-events; attention, balance and function were assessed using standardised tests. RESULTS: Visual inattention was identified in five participants (10%), deficits of sustained attention in 15 (31%), auditory selective attention in nine (19%), visual selective attention in 17 (35%) and divided attention deficits in 21 participants (43%). Sustained and divided attention scores correlated with balance, ADL ability and fall-status (p < 0.01). The balance and function of subjects with normal attention were better than those with abnormal scores (p < 0.01). Analysis of variance revealed differences between repeat-fallers and non-fallers with no near-falls for divided attention, balance and ADL ability (p < 0.01). CONCLUSIONS: Attention deficits were common among this sample; sustained and divided attention deficits correlated with functional impairments and falls, highlighting that attention deficits might contribute to accident prone behaviour and falling.

An exploratory study of the consistency of balance control and the mobility of people with Parkinson's disease (PD) between medication doses.

OBJECTIVE: To evaluate the consistency of balance control, mobility and perceived difficulties with functional tasks by people on carefully controlled anti-parkinsonian medication programmes, between doses on a single day and across days using standard clinical measures. DESIGN: Small group prospective study. SETTING: A hospital outpatient physiotherapy department. SUBJECTS: Subjects, recruited from a specialist Parkinson's disease (PD) clinic, had to be independently mobile, diagnosed with PD at least five years previously and on a stable drug regime. METHOD: Assessments (timed up and go, functional reach and a tap test) were completed 30 minutes prior to medication and hourly for 4 hours. They were repeated on a second day within a seven-day period. The self-assessment of functional disability was completed during the worst and best periods of the drug cycle. A general linear model (repeated measures analysis of variance) was used to analyse the data. RESULTS: Nine subjects (8 males) with PD (grade III Hoehn and Yahr, average duration of symptoms eight years), average age 72 years, were recruited to the study. Four subjects had worse Hoehn and Yahr scores (grade 4) during the worst phase of the L-dopa cycle. Balance and mobility data did not change significantly over the medication cycle. Tests on day 2 were similar to day 1 with only the tap test showing a significant mean difference (p = 0.02) (2.6, 95% confidence interval (CI) 0.5-4.8). Individuals perceived significantly greater difficulty (mean difference = 7.9, 95% CI 3.6-12.2) (p < 0.001) in achieving functional tasks at the end of dose than peak dose of the medication cycle. CONCLUSION: Measures of balance and mobility remained stable over the cycle. Fluctuations in the perception of difficulties with daily functional tasks were not accompanied by observed fluctuations in performance. The improvement in the mean of the tap test over the days could reflect a learning effect.

The unmet needs of young people who have had a stroke: results of a national UK survey.

BACKGROUND: Most stroke-related studies have consisted of people over the age of 65. This study examined the unmet needs of young people with stroke, living in community housing in the UK. METHOD: People with a stroke (>1 year ago), in two age bands (18-45; 46-65) were sent the Southampton Needs Assessment Questionnaire for people with Stroke. RESULTS: 315 out of 639 (49%) questionnaires were returned (mean age 55, SD 9; 189 males, 126 females). The median number of unmet needs reported was two (IQR 0-6). The most frequently reported unmet needs were: provision of information about the responders' stroke (45%); assistance with finances (24%); non-care activities (19%); and intellectual fulfillment (17%). Responders in the younger age group reported significantly more unmet needs than responders in the older age group (for a holiday, intellectual fulfillment and family support). Responders with poor mobility reported significantly more unmet needs than responders with average and good mobility for 15 unmet needs (three most pressing: respite care/short breaks; adaptations; and access to community environment). Responders who did not return to work reported significantly more unmet needs than responders who had reduced hours or changed jobs and people who returned to the same job with the same hours for seven unmet needs (three most pressing: help with finances; a holiday and speech therapy). CONCLUSION: People of younger age, with poorer mobility and those unable to return to work, report most unmet needs. Further work needs to be done within the community, with employers and professionals, in relation to education and the provision of specifically targeted information in order to facilitate participation and autonomy for people with stroke.