Subjective and objective knowledge and decisional role preferences in cerebrovascular patients compared to controls

Riechel, Christina; Alegiani, Anna Christina; Köpke, Sascha; Kasper, Jürgen; Rosenkranz, Michael; Thomalla, Götz; Heesen, Christoph

doi:10.2147/PPA.S98342

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Subjective and objective knowledge and decisional role preferences in cerebrovascular patients compared to controls

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Author(s): Christina Riechel ¹ , Anna Christina Alegiani ¹ , Sascha Köpke ² , Jürgen Kasper ³ ^, ⁴ , Michael Rosenkranz ¹ ^, ⁵ , Götz Thomalla ¹ , Christoph Heesen ¹ ^, ⁴

Publication date (Electronic): 02 August 2016

Journal: Patient preference and adherence

Publisher: Dove Medical Press

Keywords: knowledge, decisional role preferences, cerebrovascular patients, stroke

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Abstract

Background

Risk knowledge and active role preferences are important for patient involvement in treatment decision-making and adherence. Although knowledge about stroke warning signs and risk factors has received considerable attention, objective knowledge on secondary prevention and further self-esteem subjective knowledge have rarely been studied. The aim of our study was to investigate knowledge and treatment decisional role preferences in cerebrovascular patients compared to controls.

Methods

We performed a survey on subjective and objective stroke risk knowledge and autonomy preferences in cerebrovascular patients from our stroke outpatient clinic (n=262) and from pedestrians on the street taken as controls during a “World Stroke Day” (n=274). The questionnaire includes measures for knowledge and decisional role preferences from previously published questionnaires and newly developed measures, for example, subjective knowledge, revealed on a visual analog scale.

Results

The overall stroke knowledge was low to moderate, with no differences between patients and controls. Knowledge about secondary prevention was particularly low. Only 10%–15% of participants correctly estimated the stroke absolute risk reduction potential of aspirin. The medical data interpretation competence was moderate in both groups. Age and basic mathematical and statistical understanding (numeracy) were the only independent predictors of objective stroke knowledge, whereas previous stroke had no impact on stroke knowledge. However, patients were thought to be better informed than controls. Approximately 60% of both patients and controls claimed to prefer a shared decision-making approach in treatment decisions.

Conclusion

The level of stroke risk knowledge in patients with cerebrovascular diseases was as low as in randomly selected pedestrians, although patients felt better informed. Both groups preferred involvement in treatment decision-making. We conclude that educational concepts for increasing awareness of knowledge gaps as well as for stroke risk and for prevention strategies are needed.

Most cited references 24

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Self-reported long-term needs after stroke.

Siobhan Crichton, Anita Sheldenkar, Della Forster … (2011)

Development of interventions to manage patients with stroke after discharge from the hospital requires estimates of need. This study estimates the prevalence of self-reported need in community-dwelling stroke survivors across the United Kingdom. We conducted a survey of stroke survivors 1 to 5 years poststroke recruited through Medical Research Council General Practice Research Framework general practices and 2 population-based stroke registers. Levels and type of need were calculated with comparisons among sociodemographic groups, disability level, and cognitive status using the χ2 test or Fisher exact test, as appropriate. From 1251 participants, response rates were 60% (national sample) and 78% (population registers sample) with few differences in levels of reported need between the 2 samples. Over half (51%) reported no unmet needs; among the remainder, the median number of unmet needs was 3 (range, 1 to 13). Proportions reporting unmet clinical needs ranged from 15% to 59%; 54% reported an unmet need for stroke information; 52% reported reduction in or loss of work activities, significantly more from black ethnic groups (P=0.006); 18% reported a loss in income and 31% an increase in expenses with differences by age, ethnic group, and deprivation score. In multivariable analysis, ethnicity (P=0.032) and disability (P=0.014) were associated with total number of unmet needs. Multiple long-term clinical and social needs remain unmet long after incident stroke. Higher levels of unmet need were reported by people with disabilities, from ethnic minority groups, and from those living in the most deprived areas. Development and testing of novel methods to meet unmet needs are required.

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Organised inpatient (stroke unit) care for stroke.

(2013)

Organised stroke unit care is provided by multidisciplinary teams that exclusively manage stroke patients in a ward dedicated to stroke patients, with a mobile stroke team or within a generic disability service (mixed rehabilitation ward). To assess the effect of stroke unit care compared with alternative forms of care for people following a stroke. We searched the trials registers of the Cochrane Stroke Group (January 2013) and the Cochrane Effective Practice and Organisation of Care (EPOC) Group (January 2013), MEDLINE (2008 to September 2012), EMBASE (2008 to September 2012) and CINAHL (1982 to September 2012). In an effort to identify further published, unpublished and ongoing trials, we searched 17 trial registers (January 2013), performed citation tracking of included studies, checked reference lists of relevant articles and contacted trialists. Randomised controlled clinical trials comparing organised inpatient stroke unit care with an alternative service. After formal risk of bias assessment, we have now excluded previously included quasi-randomised trials. Two review authors initially assessed eligibility and trial quality. We checked descriptive details and trial data with the co-ordinators of the original trials. We included 28 trials, involving 5855 participants, comparing stroke unit care with an alternative service. More-organised care was consistently associated with improved outcomes. Twenty-one trials (3994 participants) compared stroke unit care with care provided in general wards. Stroke unit care showed reductions in the odds of death recorded at final (median one year) follow-up (odds ratio (OR) 0.87, 95% confidence interval (CI) 0.69 to 0.94; P = 0.005), the odds of death or institutionalised care (OR 0.78, 95% CI 0.68 to 0.89; P = 0.0003) and the odds of death or dependency (OR 0.79, 95% CI 0.68 to 0.90; P = 0.0007). Sensitivity analyses indicated that the observed benefits remained when the analysis was restricted to securely randomised trials that used unequivocally blinded outcome assessment with a fixed period of follow-up. Outcomes were independent of patient age, sex, initial stroke severity or stroke type, and appeared to be better in stroke units based in a discrete ward. There was no indication that organised stroke unit care resulted in a longer hospital stay. Stroke patients who receive organised inpatient care in a stroke unit are more likely to be alive, independent, and living at home one year after the stroke. The benefits were most apparent in units based in a discrete ward. We observed no systematic increase in the length of inpatient stay.

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Information needs and decisional preferences in women with breast cancer.

L F Degner, L J Kristjanson, D Bowman … (1997)

To determine the degree of involvement women with breast cancer wanted in medical decision making, extent to which they believed they had achieved their preferred level of involvement, and types of information they judged to be most important. Cross-sectional survey at 2 tertiary oncology referral clinics and 2 community hospital oncology clinics in Winnipeg, Manitoba. Consecutive sample of 1012 women with a confirmed diagnosis of breast cancer who were scheduled for a visit at 1 of 4 hospital oncology clinics. The following measures were used: (1) Preferences about various levels of participation in treatment decision making; (2) the extent to which subjects believed they had achieved their preferred levels of involvement in decision making; and (3) priority needs for information and how these needs differed by selected sociodemographic, disease, and treatment variables. A total of 22% of women wanted to select their own cancer treatment, 44% wanted to select their treatment collaboratively with their physicians, and 34% wanted to delegate this responsibility to their physicians. Only 42% of women believed they had achieved their preferred level of control in decision making. The 2 most highly ranked types of information were related to knowing about chances of cure and spread of disease. Women younger than 50 years rated information about physical and sexual attractiveness as more important than did older women (P<.001); women older than 70 years rated information about self-care as more important than did younger women (P=.002); and women who had a positive family history of breast cancer rated information about family risk as more important than did other women (P=.03). The substantial discrepancy between women's preferred and attained levels of involvement in treatment decision making suggests that systematic approaches to assess and respond to women's desired level of participation in treatment decision making need to be evaluated. Priorities for information identified in this study provide an empirical basis to guide communication with women seeking care for breast cancer.

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Author and article information

Journal

Journal ID (nlm-ta): Patient Prefer Adherence

Journal ID (iso-abbrev): Patient Prefer Adherence

Journal ID (publisher-id): Patient Preference and Adherence

Title: Patient preference and adherence

Publisher: Dove Medical Press

ISSN (Electronic): 1177-889X

Publication date Collection: 2016

Publication date (Electronic): 02 August 2016

Volume: 10

Pages: 1453-1460

Affiliations

[1 ]Department of Neurology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany

[2 ]Nursing Research Unit, Institute of Social Medicine and Epidemiology, University of Lübeck, Lübeck, Germany

[3 ]Department of Health and Caring Sciences, Faculty of Health Sciences, University of Tromsø, Tromsø, Norway

[4 ]Institute of Neuroimmunology and Multiple Sclerosis, University Medical Center Hamburg-Eppendorf, Hamburg, Germany

[5 ]Department of Neurology, Albertinen-Krankenhaus, Hamburg, Germany

Author notes

Correspondence: Anna Christina Alegiani, Department of Neurology, University Medical Center Hamburg-Eppendorf, Martinistrasse 52, Hamburg D 20246, Germany, Tel +49 40 7410 53770, Fax +49 40 7410 56721, Email a.alegiani@ 123456uke.de

[*]

These authors contributed equally to this work

Article

Publisher ID: ppa-10-1453

DOI: 10.2147/PPA.S98342

PMC ID: 4977072

PubMed ID: 27536077

SO-VID: 2096d69b-a67d-4892-a285-0aad70e2343e

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The full terms of this license are available at https://www.dovepress.com/terms.php and incorporate the Creative Commons Attribution – Non Commercial (unported, v3.0) License ( http://creativecommons.org/licenses/by-nc/3.0/). By accessing the work you hereby accept the Terms. Non-commercial uses of the work are permitted without any further permission from Dove Medical Press Limited, provided the work is properly attributed.

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Patient Preference and Adherence (submit here)

Subjective and objective knowledge and decisional role preferences in cerebrovascular patients compared to controls

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Abstract

Background

Methods

Results

Conclusion

Most cited references 24

Self-reported long-term needs after stroke.

Organised inpatient (stroke unit) care for stroke.

Information needs and decisional preferences in women with breast cancer.

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