The Post Stroke Checklist

Singapore National Stroke Association, 2014 Stroke Club 1 The Post Stroke Checklist Christopher Chen, FRCP, FAMS Department of Pharmacology, National University of Singapore Singapore

Singapore National Stroke Association, 2014 Stroke Club 2 DISCLOSURES This study was sponsored by Allergan, Inc., Irvine, CA. Writing and editorial assistance was provided by Allergan, Inc., Irvine, CA. All authors met the ICMJE authorship criteria. Neither honoraria nor payments were made for authorship.

Singapore National Stroke Association, 2014 Stroke Club 3 BACKGROUND Stroke is the second leading cause of death and one of the leading contributors to adult disability worldwide Poses a significant personal, social, and financial global burden 4th highest cause of death in Singapore, accounting for 9.0% of total deaths - second highest cause of premature mortality 4 th highest cause of disease burden overall in Singapore The Singapore Ministry of Health recognizes that stroke is one of the four main chronic diseases affecting Singaporeans The effects following a stroke can last for many years and may result in a number of disabilities and impairments that can decrease the quality of a person s life

Singapore National Stroke Association, 2014 Stroke Club 4 BACKGROUND Although national stroke guidelines in Singapore and elsewhere in the world advocate long term care of stroke patients, there is no standardized process for long-term follow-up care to assess and address the holistic needs of stroke survivors Long-term care for stroke survivors is fragmented and lacks an evidence-based, easy-to-use tool to identify persistent long-term problems and streamline referral for treatment A lack of standardized long-term post stroke assessment leads to missed rehabilitation and recovery opportunities for stroke survivors

Singapore National Stroke Association, 2014 Stroke Club 5 DEVELOPING THE PSC To address the lack of long-term stroke management worldwide an international, multidisciplinary group of stroke experts (Global Stroke Community Advisory Panel [GSCAP]) was formed GSCAP, supported by measurement experts, recognized the need for the PSC and subsequently developed the tool

Singapore National Stroke Association, 2014 Stroke Club 6 BACKGROUND The Post Stroke Checklist (PSC) was developed to help healthcare professionals identify post stroke problems amenable to treatment and assist with subsequent referral (if necessary) The PSC is a simple, easy to use checklist covering broad aspects of quality of life after stroke Identifies treatment opportunities where an evidence based intervention is available and would be of value to the stroke survivor Includes 11 concepts/items Each item comprises a dichotomous yes / no response scale and provides referral recommendations (adapted locally) for each problem identified Administered to stroke survivors in the community setting by a healthcare professional 6 to 12 months post-stroke, and annually thereafter

THE POST STROKE CHECKLIST (PSC) Singapore National Stroke Association, 2014 Stroke Club 7

Singapore National Stroke Association, 2014 Stroke Club 8 APPROACH AND EXECUTION Pilot studies were conducted in the United Kingdom and Singapore The goal was to evaluate the feasibility and usefulness of the PSC in clinical practice and assess its relevance to stroke survivors In Singapore, 100 patients were recruited from the Cognitive Outcomes After Stroke (COAST) study, an on-going investigation of stroke patients identified from the acute stroke service Ethical approval was obtained from the National Healthcare Group Domain Specific Review Board (NHG DSRB) in Singapore Patients were eligible to participate if they had experienced a cerebral infarction or intracerebral hemorrhage between 9 and 36 months ago Expressive dysphasic patients were included, provided they were able to respond to the PSC items

Singapore National Stroke Association, 2014 Stroke Club 9 APPROACH AND EXECUTION Clinicians were instructed to take the following steps when administering the PSC: Read each question as worded If patient has difficulty in understanding, repeat the question as worded If the patient continues to have difficulty in understanding, rephrase a key word in the question If the patient continues to have difficulty in understanding, rephrase the whole question During administration of the PSC to English-speaking patients in Singapore, a trained researcher was present in the room, as an observer Noted any issues with the checklist administration Recorded the duration of the assessment visit and the time taken to administer the checklist.

Singapore National Stroke Association, 2014 Stroke Club 10 APPROACH AND EXECUTION Clinician administers the PSC to patient If patient does not understand, the clinician repeats and rephrases as needed Independent researcher observes PSC administration (English speaking patients only) Patient and clinician complete satisfaction with PSC questionnaires Descriptive statistics used to analyze quantitative data Outcomes: Patient and Clinician satisfaction with the PSC (3 questions, 0-10 rating scale) Clinician satisfaction with the PSC (Pragmatic Content and Face Validity Test (PRAC-Test) Time taken to administer the PSC (observer-recorded) Duration of the patient visit (observer-recorded) Number and type of referrals (based on completed PSC) Qualitative data analysis of the PSC administration Outcomes: Comprehension of the PSC to patients Issues with PSC administration

Singapore National Stroke Association, 2014 Stroke Club 11 SINGAPORE PSC PILOT STUDY Patient characteristics Singapore (N=100) n (%) Age of patient: Mean (SD) 61 (10.9) Min-Max 24-95 Missing/No response 1 Patient gender: Male 75 (75.0) Female 25 (25.0) Missing/No response 0 (0.0) Years since most recent stroke event: Mean (SD) [2] 1 (0.4) Min-Max [3] 0-3 Missing/No response 7 Type of healthcare professional visited by the patient for post-stroke monitoring or treatment: Stroke specialist 29 (29.0) General Practitioner 17 (17.0) General Neurologist 12 (12.0) Cardiologist 12 (12.0) Outpatient Polyclinic 9 (9.0) Missing/No response 5 (5.0) Endocrinologist 1 (1.0) Rehabilitation specialist 1 (1.0) Community Stroke Team 1 (1.0) Other 13 (1.0) Patient characteristics Singapore (N=100) n (%) Type of Co-morbidity: Cardiovascular 91 (91.0) Neurological 85 (85.0) Endocrinological/Nutritional 47 (47.0) Gastroenterological 7 (7.0) Urological/Renal 5 (5.0) Opthalmological 5 (5.0) Respiratory 4 (4.0) Rheumatological 3 (3.0) Haematological 1 (1.0) Other 11 (11.0) Missing data/no treatment 5 (5.0) Current post stroke treatment: Pharmacological Treatment 85 (85.0) Anti-platelet 81 (81.0) Anti-hypertensive 37 (37.0) Anti-cholesterol 35 (35.0) Anti-hyperglycemic 17 (17.0) Anti-coagulant 6 (6.0) Current post stroke physical therapy 0 (0.0) Missing data/no treatment 15 (15.0)

Singapore National Stroke Association, 2014 Stroke Club 12 RESULTS ADMINISTRATION TIME Of 45 observed PSC administrations, the mean (SD) duration of the patient visit 17 (7.8) minutes Of 45 observed PSC administrations, the mean (SD) duration taken to administer the PSC 8 (3.8) minutes

Singapore National Stroke Association, 2014 Stroke Club 13 RESULTS PATIENT UNDERSTANDING PSC Item Patient understood the item on the first reading by the clinician Patient understood after the item was repeated Patient understood after an item word was rephrased the whole question was rephrased Patient did not understand the item at all Secondary Prevention 29 (64.4) 1 (2.2) 8 (17.8) 0 (0.0) Activities of daily living 43 (95.6) 2 (4.4) 0 (0.0) 0 (0.0) Mobility 42 (93.3) 3 (6.7) 0 (0.0) 0 (0.0) Spasticity 44 (97.8) 1 (2.2) 1 (2.2) 0 (0.0) Pain 44 (97.8) 1 (2.2) 0 (0.0) 0 (0.0) Incontinence 39 (86.7) 1 (2.2) 5 (11.1) 0 (0.0) Communication 43 (95.6) 1 (2.2) 1 (2.2) 0 (0.0) Mood 43 (95.6) 1 (2.2) 1 (2.2) 0 (0.0) Cognition 42 (93.3) 2 (4.4) 0 (0.0) 0 (0.0) Life after stroke 42 (93.3) 1 (2.2) 1 (2.2) 0 (0.0) Relationship with family 43 (95.6) 0 (0.0) 0 (0.0) 0 (0.0)

Singapore National Stroke Association, 2014 Stroke Club 14 RESULTS PATIENT RESPONSES Problems Male (N=75) n (%) Female (N=25) n (%) Total (N=100) n (%) 1. Absence of Secondary Prevention 11 (14.7) 4 (16.0) 15 (15.0) 2. Activities of Daily Living 11 (14.7) 7 (28.0) 18 (18.0) 3. Mobility 19 (25.3) 7 (28.0) 26 (26.0) 4. Spasticity 18 (24.0) 4 (16.0) 22 (22.0) 5. Pain 24 (32.0) 8 (32.0) 32 (32.0) 6. Incontinence 10 (13.3) 7 (28.0) 17 (17.0) 7. Communication 8 (10.7) 3 (12.0) 11 (11.0) 8. Mood 22 (29.3) 10 (40.0) 32 (32.0) 9. Cognition 29 (38.7) 7 (28.0) 36 (36.0) 10. Life After Stroke 18 (24.0) 7 (28.0) 25 (25.0) 11. Relationship with Family 11 (14.7) 4 (16.0) 15 (15.0)

Singapore National Stroke Association, 2014 Stroke Club 15 RESULTS PATIENT SATISFACTION Patient satisfaction with PSC Male (N=75) Female (N=25) Total (N=100) (0-10 numerical rating scale) n (%) n (%) n (%) Q1 How satisfied are you with the overall assessment you have just received? (0 extremely dissatisfied, 10 extremely satisfied) Mean (SD) 8.5 (1.4) 8.4 (1.6) 8.4 (1.4) Median 9 8 8 Min-Max 5-10 5-10 5-10 Missing/No response 0 0 0 Q2 How satisfied are you that the checklist used by the clinician during the assessment identified your needs correctly? (0 extremely dissatisfied, 10 extremely satisfied) Mean (SD) 8.4 (1.6) 7.9 (1.8) 8.3 (1.7) Median 9 8 8 Min-Max 5-10 5-10 5-10 Missing/No response 0 0 0 Q3 How likely do you think you will receive the type of health and/or care services you think you need? (0 extremely unlikely, 10 extremely likely) Mean (SD) 7.8 (2.0) 8.2 (1.8) 7.9 (2.0) Median 8 8 8 Min-Max 0-10 5-10 0-10 Missing/No response 0 0 0

Singapore National Stroke Association, 2014 Stroke Club 16 RESULTS CLINICIAN SATISFACTION Clinician satisfaction with PSC (0-10 numerical rating scale) Male Patient (N=29) n (%) Female Patient (N=11) n (%) Total (N=40)* n (%) Q1 How satisfied are you with the overall use of the Checklist during this assessment? (0 extremely dissatisfied, 10 extremely satisfied) Mean (SD) 7.8 (1.3) 7.9 (1.3) 7.8 (1.3) Median 8 8 8 Min-Max 5-10 6-10 5-10 Missing/No response 8 2 10 Q2 How satisfied are you with the Checklist in helping you identify the needs of this patient? (0 extremely dissatisfied, 10 extremely satisfied) Mean (SD) 7.9 (1.5) 7.9 (1.6) 7.9 (1.5) Median 8 9 8 Min-Max 4-10 5-10 4-10 Missing/No response 8 2 10 Q3 How satisfied are you with the Checklist in helping you make referrals for this patient? (0 extremely dissatisfied, 10 extremely satisfied) Mean (SD) 7.6 (1.6) 7.3 (1.6) 7.5 (1.6) Median 8 7 8 Min-Max 4-10 5-10 4-10 Missing/No response 8 2 10

Singapore National Stroke Association, 2014 Stroke Club 17 RESULTS CLINICIAN SATISFACTION Property of the PSC Singapore (N=5) n, positive responses (%) Useful 5 (100.0) Informative 5 (100.0) Enhances communication with patients 4 (80.0) Practical 4 (80.0) Exhaustive 4 (80.0) Will help therapeutic decision making 3 (60.0) Simple 3 (60.0) Quick to complete 3 (60.0) All clinicians (n=5, 100%) felt they would like patients to complete the PSC before the visit (in the waiting room) 80% of clinicians (n=4) would probably or definitely recommend the PSC to a colleague, and their reaction would be quite positive

Singapore National Stroke Association, 2014 Stroke Club 18 CONCLUSIONS The high overall satisfaction and positive feedback from patients and clinicians indicate that the PSC is acceptable and useful for identifying the needs of stroke survivors Findings also indicate that the PSC is easy and timely to administer and generally well understood As the PSC is implemented into clinical practice, the tool will help improve the long-term care of stroke survivors which will ultimately improve their quality of life while easing the burden on their families and caregivers

ENDORSEMENTS AND IMPLEMENTATION Endorsements* World Stroke Organization Organizational website National Stroke Association (United States) Organizational website ProEd newsletter and Stroke Smart Magazine Stroke training initiatives Canadian Best Practice Recommendations for Stroke Care Organizational website Stroke discharge packs Stroke training initiatives National Stroke Foundation (Australia) Organizational websites Stroke discharge packs Implementation* Clinical Sites Hershey Medical Center (US) Danube University in Krems (Austria) East Midlands region (UK) Regional Meetings Asia Pacific Neuro-Rehab Ad Board (Hong Kong, India, Taiwan, Korea, Singapore, and Thailand) Australian PSC Implementation Meeting Europe PSC Implementation Meeting Dissemination International Society of Physical Medicine and Rehabilitation Allergan Field Force The PSC development manuscript has been published (Philp et al., 2013) and the pilot manuscript submitted to journal * Endorsements and implementation of the PSC are on-going with several other sites and associations in US, Canada, Europe, and Australia Singapore National Stroke Association, 2014 Stroke Club 19

EASY ACCESS TO THE PSC AT www.worldstrokecampaign.org Singapore National Stroke Association, 2014 Stroke Club 20

EASY ACCESS TO THE PSC AT www.worldstrokecampaign.org Singapore National Stroke Association, 2014 Stroke Club 21

Singapore National Stroke Association, 2014 Stroke Club 22 HOW MIGHT WE MOVE FORWARD IN SINGAPORE? Would the PSC be useful in Singapore? Primary Care Step Down Care Specialist Services Do we need further studies in Singapore? Primary Care Feasibility Prevalence Referrals Improvement of patient outcomes Can the Stroke Association endorse the PSC?