Hostname: page-component-76fb5796d-2lccl Total loading time: 0 Render date: 2024-04-26T00:37:41.931Z Has data issue: false hasContentIssue false
  • English
  • Français

A review of stroke outcome measures valid and reliable for administration by postal survey

Part of: Bespoke shallow archive Weizmann

Published online by Cambridge University Press:  27 July 2010

Elizabeth A Teale  and
John B Young
Elizabeth A Teale*
Affiliation:
Academic Unit of Elderly Care and Rehabilitation, Bradford Royal Infirmary and University of Leeds, UK
John B Young
Affiliation:
Academic Unit of Elderly Care and Rehabilitation, Bradford Royal Infirmary and University of Leeds, UK
*
Address for correspondence: Elizabeth Teale, Academic Unit of Elderly Care and Rehabilitation, Temple Bank House, Bradford Royal Infirmary, Duckworth Lane, Bradford BD9 6RJ. Email: Elizabeth.Teale@bradfordhospitals.nhs.uk
Get access Rights & Permissions [Opens in a new window]

Summary

Collecting outcome measures by patient or proxy-completed postal survey in stroke research offers a pragmatic and cost-effective alternative to interview-based assessments. The psychometric properties of outcome measures cannot be assumed to be equivalent across methods of questionnaire administration. Many stroke outcome measures have variable or unproven psychometric properties when administered by post. The validity of stroke research that uses postal surveys may be improved through the adoption of questionnaires with acceptable postal psychometric properties. This review identifies 60 reports of quantitative stroke studies using one or more of 36 instruments to collect stroke outcome data by postal survey. Three of these instruments have acceptable psychometric properties for postal administration in stroke populations (the Frenchay Activities Index (FAI), Subjective Index of Physical and Social Outcome (SIPSO) and the EuroQoL (EQ5D)). Two further instruments lack evidence to support proxy reliability (Nottingham Extended Activities of Daily Living and London Handicap Score), but have otherwise acceptable properties.

Keywords

strokeoutcome assessment (health care)postal servicereproducibility of resultsquestionnaires
Type
Psychological and social gerontology
Information
Reviews in Clinical Gerontology , Volume 20 , Issue 4 , November 2010 , pp. 338 - 353
Copyright
Copyright © Cambridge University Press 2010

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

1Lindley, RI, Waddell, F, Livingstone, M et al. Can simple questions assess outcome after stroke? Cerebrovasc Dis 1994; 4: 314–24.CrossRefGoogle Scholar
2Parker, C, Dewey, M. Assessing research outcomes by postal questionnaire with telephone follow-up. TOTAL Study Group. Trial of Occupational Therapy and Leisure. Int J Epidemiol 2000; 29: 1065–69.CrossRefGoogle Scholar
3Cochrane Database of Systematic Reviews Stroke Review Group. Stroke Search Strategy (updated 2010); http://www.mrw.interscience.wiley.com/cochrane/clabout/articles/STROKE/frame.html (accessed 2 May 2009).Google Scholar
4Salter, K, Jutai, J, Zettler, L, Moses, M, Foley, N, Teasell, R. Outcome measures in stroke rehabilitation. Evidence based review of stroke rehabilitation, ed. Teasell, R. 11: 1–110 (updated 2009); http://www.ebrsr.com/ (accessed 2 May 2009).Google Scholar
5Blum-Zeltzer, L, Korner-Bitensky, N, Sitcoff, E, Salter, K, Teasell, R. StrokEngine Assess (updated 2009), The Canadian Stroke Network. http://www.medicine.mcgill.ca/Strokengine-assess (accessed 29 April 2009).Google Scholar
6Fitzpatrick, R, Davey, C, Buxton, MJ, Jones, DR. Evaluating patient-based outcome measures for use in clinical trials. Health Technol Assess 1998; 2: 1–74.CrossRefGoogle ScholarPubMed
7Andresen, E. Criteria for assessing the tools of disability outcomes research. Archives Phys Medicine Rehab 2000; 81: S15–20.CrossRefGoogle ScholarPubMed
8Altman, DG. Inter-rater agreement. In Practical Statistics for Medical Research. London: Chapman & Hall/CRC; 1999; pp. 403–9.Google Scholar
9Bland, MJ, Altman, DG. Statistics notes: Cronbach's alpha. BMJ 1997; 314: 572.CrossRefGoogle Scholar
10Bakas, T, Austin, JK, Jessup, SL, Williams, LS, Oberst, MT. Time and difficulty of tasks provided by family caregivers of stroke survivors. J Neurosci Nurs 2004; 36: 95–106.CrossRefGoogle ScholarPubMed
11Barrett, JA, Watkins, C, Plant, R, Dickinson, H, Clayton, L, Sharma, AK, Reston, A, Gratton, J, Fall, S, Flynn, A, Smith, T, Leathley, M, Smith, S, Barer, DH. The COSTAR wheelchair study: a two-centre pilot study of self-propulsion in a wheelchair in early stroke rehabilitation. Clin Rehabil 2001; 15: 32–41.CrossRefGoogle Scholar
12Blake, H, Lincoln, NB. Factors associated with strain in co-resident spouses of patients following stroke. Clin Rehabil 2000; 14: 307–14.CrossRefGoogle ScholarPubMed
13Blake, H, Lincoln, NB, Clarke, DD. Caregiver strain in spouses of stroke patients. Clin Rehabil 2003; 17: 312–17.CrossRefGoogle ScholarPubMed
14Boter, H, de Haan, RJ, Rinkel, GJE. Clinimetric evaluation of a Satisfaction-with-Stroke-Care questionnaire. J Neurol 2003; 250: 534–41.CrossRefGoogle ScholarPubMed
15Boter, H. Multicenter randomized controlled trial of an outreach nursing support program for recently discharged stroke patients. Stroke 2004; 35: 2867–72.CrossRefGoogle ScholarPubMed
16Slot, KB, Berge, E, Dorman, P, Lewis, S, Dennis, M, Sandercock, P; Oxfordshire Community Stroke Project, the International Stroke Trial (UK); Lothian Stroke Register. Impact of functional status at six months on long term survival in patients with ischaemic stroke: Prospective cohort studies. BMJ 2008; 336: 376–79.CrossRefGoogle ScholarPubMed
17Curry, J, Sethi, MK, Ogilvy, CS, Carter, BS. Factors associated with outcome after hemicraniectomy for large middle cerebral artery territory infarction. Neurosurgery 2005; 56: 681–91.CrossRefGoogle ScholarPubMed
18Daneski, K, Coshall, C, Tilling, K, Wolfe, CDA. Reliability and validity of a postal version of the Reintegration to Normal Living Index, modified for use with stroke patients. Clin Rehabil 2003; 17: 835–39.CrossRefGoogle ScholarPubMed
19Dennis, M, Lewis, S, Cranswick, G, Forbes, J. FOOD: a multicentre randomised trial evaluating feeding policies in patients admitted to hospital with a recent stroke. Health Technol Assess 2006; 10: 1–120.CrossRefGoogle ScholarPubMed
20Dorman, P, Slattery, J, Farrell, B, Dennis, M, Sandercock, P. Qualitative comparison of the reliability of health status assessments with the EuroQol and SF-36 questionnaires after stroke. Stroke 1998; 29: 63–68.CrossRefGoogle ScholarPubMed
21Dorman, PJ, Slattery, J, Farrell, B, Dennis, MS, Sandercock, PAG. A randomised comparison of the EuroQol and Short Form-36 after stroke. BMJ 1997; 315: 461.CrossRefGoogle ScholarPubMed
22Dorman, PJ, Dennis, M, Sandercock, P. How do scores on the EuroQol relate to scores on the SF-36 after stroke? Stroke 1999; 30: 2146–51.CrossRefGoogle ScholarPubMed
23Drummond, AER, Parker, CJ, Gladman, JRF, Logan, PA. Development and validation of the Nottingham Leisure Questionnaire (NLQ). Clin Rehabil 2001; 15: 647–56.CrossRefGoogle ScholarPubMed
24Duncan, PW, Reker, DM, Horner, RD, Samsa, GP, Hoenig, H, LaClair, BJ, Dudley, TK. Performance of a mail-administered version of a stroke-specific outcome measure, the Stroke Impact Scale. Clin Rehabil 2002; 16: 493–505.CrossRefGoogle ScholarPubMed
25Edwards, B, O'Connell, B. Internal consistency and validity of the Stroke Impact Scale 2.0 (SIS 2.0) and SIS-16 in an Australian sample. Qual Life Res 2003; 12: 1127–35.CrossRefGoogle Scholar
26Fischer, U, Anca, D, Arnold, M, Nedeltchev, K, Kappeler, L, Ballinari, P, Schroth, G, Mattle, HP. Quality of life in stroke survivors after local intra-arterial thrombolysis. Cerebrovasc Dis 2008; 25: 438–44.CrossRefGoogle ScholarPubMed
27Gilbertson, L, Langhorne, P, Walker, A, Allen, A, Murray, GD. Domiciliary occupational therapy for patients with stroke discharged from hospital: randomised controlled trial. BMJ (Clinical Research Ed) 2000; 320: 603–6.CrossRefGoogle ScholarPubMed
28Gladman, JR, Lincoln, NB, Adams, SA. Use of the extended ADL scale with stroke patients. Age Ageing 1993; 22: 419–24.CrossRefGoogle ScholarPubMed
29Gladman, JR, Lincoln, NB. Follow-up of a controlled trial of domiciliary stroke rehabilitation (DOMINO Study). Age Ageing 1994; 23: 9–13.CrossRefGoogle ScholarPubMed
30Gompertz, P, Pound, P, Ebrahim, S. The reliability of stroke outcome measures. Clin Rehabil 1993; 7: 290–96.CrossRefGoogle Scholar
31Gompertz, P, Pound, P, Ebrahim, S. A postal version of the Barthel Index. Clin Rehabil 1994; 8: 233–39.CrossRefGoogle Scholar
32Gompertz, P, Pound, P, Briffa, J, Ebrahim, S. How useful are non-random comparisons of outcomes and quality of care in purchasing hospital stroke services? Age Ageing 1995; 24: 137–41.CrossRefGoogle ScholarPubMed
33Gorter, JW. Health-related quality of life in a stroke prevention trial: the value of self-reported postal questionnaires. Clin Rehabil 2000; 14: 558.Google Scholar
34Harwood, RH, Gompertz, P, Ebrahim, S. Handicap one year after a stroke: validity of a new scale. J Neurol Neurosurg Psychiatry 1994; 57: 825–29.CrossRefGoogle ScholarPubMed
35Hochstenbach, J, Donders, R, Mulder, T, Van Limbeek, J, Schoonderwaldt, H. Long-term outcome after stroke: a disability-orientated approach. Int J Rehabil Res 1996; 19: 189–200.CrossRefGoogle ScholarPubMed
36Hopman, WM, Verner, J. Quality of life during and after inpatient stroke rehabilitation. Stroke 2003; 34: 801–5.CrossRefGoogle ScholarPubMed
37Howell, E, Graham, C, Hoffman, A. Comparison of patients’ assessments of the quality of stroke care with audit findings. Qual Saf Health Care 2007; 16: 450–55.CrossRefGoogle ScholarPubMed
38Ingles, JL, Eskes, GA, Phillips, SJ. Fatigue after stroke. Arch Phys Med Rehabil 1999; 80: 173–78.CrossRefGoogle ScholarPubMed
39Kersten, P, George, S, Low, J, Ashburn, A, McLellan, L. The Subjective Index of Physical and Social Outcome: its usefulness in a younger stroke population. Int J Rehabil Res 2004; 27: 59–63.CrossRefGoogle Scholar
40Kuroda, A, Kanda, T, Sakai, F. Gender differences in health-related quality of life among stroke patients. Geriatr Gerontol Int 2006; 6: 165–73.CrossRefGoogle Scholar
41Lim, LLY, Fisher, JD. Use of the 12-item Short-Form (SF-12) Health Survey in an Australian heart and stroke population. Qual Life Res 1999; 8: 1–8.CrossRefGoogle Scholar
42Lincoln, NB, Gladman, JRF. The Extended Activities of Daily Living scale: A further validation. Disabil Rehabil 1992; 14: 41–43.CrossRefGoogle Scholar
43Lincoln, NB, Francis, VM, Lilley, SA, Sharma, JC, Summerfield, M. Evaluation of a stroke family support organiser: a randomized controlled trial. Stroke 2003; 34: 116–21.CrossRefGoogle ScholarPubMed
44Lincoln, NB, Flannaghan, T. Cognitive behavioral psychotherapy for depression following stroke: a randomized controlled trial. Stroke 2003; 34: 111–15.CrossRefGoogle ScholarPubMed
45Lincoln, NB, Nicholl, CR, Flannaghan, T, Leonard, M, van der Gucht, E. The validity of questionnaire measures for assessing depression after stroke. Clin Rehabil 2003; 17: 840–46.CrossRefGoogle ScholarPubMed
46Lincoln, NB, Walker, MF, Dixon, A, Knights, P. Evaluation of a multiprofessional community stroke team: a randomized controlled trial. Clin Rehabil 2004; 18: 40–47.CrossRefGoogle ScholarPubMed
47Lindgren, P, Glader, E-L, Jonsson, B. Utility loss and indirect costs after stroke in Sweden. Eur J Cardiovasc Prev Rehabil 2008; 15: 230–33.CrossRefGoogle ScholarPubMed
48Logan, PA, Ahern, J, Gladman, JRF, Lincoln, NB. A randomized controlled trial of enhanced Social Service occupational therapy for stroke patients. Clin Rehabil 1997; 11: 107–13.CrossRefGoogle ScholarPubMed
49Logan, PA, Gladman, JR, Drummond, AE, Radford, KA. A study of interventions and related outcomes in a randomized controlled trial of occupational therapy and leisure therapy for community stroke patients. Clin Rehabil 2003; 17: 249–55.CrossRefGoogle Scholar
50Logan, PA, Gladman, JR, Avery, A, Walker, MF, Dyas, J, Groom, L. Randomised controlled trial of an occupational therapy intervention to increase outdoor mobility after stroke. BMJ 2004; 329: 1372–75.CrossRefGoogle ScholarPubMed
51Murray, J, Forster, A, Young, J. Response and completion rates for postal outcomes booklets in stroke rehabilitation. Int J Therapy Rehabil 2007; 14: 440–45.CrossRefGoogle Scholar
52Myers, JA, McPherson, KM, Taylor, WJ, Weatherall, M, McNaughton, HK. Duration of condition is unrelated to health-state valuation on the EuroQoL. Clin Rehabil 2003; 17: 209–15.CrossRefGoogle ScholarPubMed
53Nouri, FM, Lincoln, NB. An extended activities of daily living scale for stroke patients. Clin Rehabil 1987; 1: 301–5.CrossRefGoogle Scholar
54O'Mahony, PG, Rodgers, H, Thomson, RG, Dobson, R, James, OFW. Is the SF-36 suitable for assessing health status of older stroke patients? Age Ageing 1998; 27: 19–22.CrossRefGoogle ScholarPubMed
55Parker, CJ, Gladman, JR, Drummond, AE, Dewey, ME, Lincoln, NB, Barer, D, Logan, PA, Radford, KA. A multicentre randomized controlled trial of leisure therapy and conventional occupational therapy after stroke. Clin Rehabil 2001; 15: 42–52.CrossRefGoogle ScholarPubMed
56Pound, P, Gompertz, P, Ebrahim, S. Development and results of a questionnaire to measure carer satisfaction after stroke. J Epidemiol Community Health 1993; 47: 500–5.CrossRefGoogle ScholarPubMed
57Pound, P, Gompertz, P, Ebrahim, S. Patients’ satisfaction with stroke services. Clin Rehabil 1994; 8: 7–17.CrossRefGoogle Scholar
58Teasdale, TW, Engberg, AW. Psychosocial consequences of stroke: a long-term population-based follow-up. Brain Inj 2005; 19: 1049–58.CrossRefGoogle ScholarPubMed
59Thomas, SA, Lincoln, NB. Factors relating to depression after stroke. Br J Clin Psychol 2006; 45: 49–61.CrossRefGoogle ScholarPubMed
60Tilling, K, Coshall, C, McKevitt, C, Daneski, K, Wolfe, C. A family support organiser for stroke patients and their carers: A randomised controlled trial. Cerebrovasc Dis 2005; 20: 85–91.CrossRefGoogle ScholarPubMed
61Tommis, Y, Seddon, D, Woods, B, Robinson, CA, Reeves, C, Russell, IT. Rural-urban differences in the effects on mental well-being of caring for people with stroke or dementia. Aging Mental Health 2007; 11: 743–50.CrossRefGoogle ScholarPubMed
62Trigg, R, Wood, VA. The Subjective Index of Physical and Social Outcome (SIPSO): a new measure for use with stroke patients. Clin Rehabil 2000; 14: 288–99.CrossRefGoogle ScholarPubMed
63Trigg, R, Wood, VA. The validation of the Subjective Index of Physical and Social Outcome (SIPSO). Clin Rehabil 2003; 17: 283–89.CrossRefGoogle ScholarPubMed
64van der Werf, SP, Van Den Broek, HLP, Anten, HWM, Bleijenberg, G. Experience of severe fatigue long after stroke and its relation to depressive symptoms and disease characteristics. Eur Neurol 2001; 45: 28–33.CrossRefGoogle ScholarPubMed
65van Wijk, I, Lindeman, E, Kappelle, LJ, van Gijn, J, Koudstaal, PJ, Gorter, JW, Algra, A; LiLAC Study Group. Functional status and use of healthcare facilities in long-term survivors of transient ischaemic attack or minor ischaemic stroke. J Neurol Neurosurg Psychiatry 2006; 77: 1238–43.CrossRefGoogle ScholarPubMed
66van Wijk, I, Gorter, JW, Lindeman, E, Kappelle, LJ, van Gijn, J, Koudstaal, PJ, Algra, A. Mental status and health-related quality of life in an elderly population 15 years after limited cerebral ischaemia. J Neurol 2007; 254: 1018–25.CrossRefGoogle Scholar
67Watkins, CL, Auton, MF, Deans, CF, Dickinson, HA, Jack, CI, Lightbody, CE, Sutton, CJ, van den Broek, MD, Leathley, MJ. Motivational interviewing early after acute stroke: A randomized, controlled trial. Stroke 2007; 38: 1004–9.CrossRefGoogle ScholarPubMed
68Weir, NU, Gunkel, A, McDowall, M, Dennis, MS. Study of the relationship between social deprivation and outcome after stroke. Stroke 2005; 36: 815–19.CrossRefGoogle ScholarPubMed
69Dorman, P, Dennis, M, Sandercock, P. Are the modified ‘simple questions’ a valid and reliable measure of health related quality of life after stroke? J Neurol Neurosurg Psychiatry 2000; 69: 487–93.CrossRefGoogle ScholarPubMed
70Blum-Zeltzer, L, Salter, K. The Stroke Impact Scale, Strokengine Assess, ed. Korner-Bitensky, N, Sitcoff, E (updated 2008). Canadian Stroke Network. http://www.medicine.mcgill.ca/strokengine-assess/module_sis_psycho-en.html (accessed 1 March 2010).Google Scholar
71Duncan, PW, Lai, SM, Tyler, D, Perera, S, Reker, DM, Studenski, S. Evaluation of Proxy Responses to the Stroke Impact Scale. Stroke 2002; 33: 2593–99.CrossRefGoogle Scholar
72Sitcoff, E. The Reintegration Into Normal Living Index, Strokengine Assess, ed. Blum-Zeltzer, L, Korner-Bitensky, N (updated 2008). The Canadian Stroke Network. http://www.medicine.mcgill.ca/strokengine-assess/module_rnli_psycho-en.html (accessed 1 March 2010).Google Scholar
73Tooth, LR, McKenna, KT, Smith, M, O'Rourke, PK. Reliability of scores between stroke patients and significant others on the Reintegration to Normal Living (RNL) Index. Disabil Rehabil 2003; 25: 433–40.CrossRefGoogle ScholarPubMed
74Tooth, LR, McKenna, KT, Smith, M, O'Rourke, P. Further evidence for the agreement between patients with stroke and their proxies on the Frenchay Activities Index. Clin Rehabil 2003; 17: 656–65.CrossRefGoogle ScholarPubMed
75Dorman, PJ, Waddell, F, Slattery, J, Dennis, M, Sandercock, P. Are proxy assessments of health status after stroke with the EuroQol questionnaire feasible, accurate, and unbiased? Stroke 1997; 28: 1883–87.CrossRefGoogle ScholarPubMed
76Price, CIM, Curless, RH, Rodgers, H. Can stroke patients use visual analogue scales? Stroke 1999; 30: 1357–61.CrossRefGoogle ScholarPubMed
77Edwards, P, Roberts, I, Clarke, M, DiGuiseppi, C, Pratap, S, Wentz, R, Kwan, I, Cooper, R. Methods to increase response rates to postal questionnaires. Cochrane Database Syst Rev 2007, issue 2, art no. MR000008. DOI:10.1002/14651858.MR000008.pub4.CrossRefGoogle Scholar
78Barker-Collo, S, Feigin, VL, Dudley, M. Post stroke fatigue – where is the evidence to guide practice? 120 (updated 2007). The New Zealand Medical Association. http://www.nzma.org.nz/journal/120-1264/ (accessed 15 May 2009).Google Scholar
79Chen, MH, Hsieh, CL, Mao, HF, Huang, SL. Differences between patient and proxy reports in the assessment of disability after stroke. Clin Rehabil 2007; 21: 351–56.CrossRefGoogle ScholarPubMed
80Blum-Zeltzer, L. The Barthel Index – StrokEngine Assess, ed. Korner-Bitensky, N, Sitcoff, E (updated 2008). Canadian Stroke Network. http://www.medicine.mcgill.ca/strokengine-assess/module_bi_psycho-en.html (accessed 1 March 2010).Google Scholar
81Segal, ME, Schall, RR. Determining functional/health status and its relation to disability in stroke survivors. Stroke 1994; 25: 2391–97.CrossRefGoogle ScholarPubMed
82Blum-Zeltzer, L. The Frenchay Activities Index, StrokEngine Assess, ed. Korner-Bitensky, N, Sitcoff, E (updated 2008). Canadian Stroke Network http://www.medicine.mcgill.ca/strokengine-assess/module_fai_psycho-en.html (accessed 1 March 2010).Google Scholar