Decisional role preferences, risk knowledge and information interests in                 patients with multiple sclerosis

Heesen, Christoph; Kasper, Jürgen; Segal, Julia; Köpke, Sascha; Mühlhauser, Ingrid

doi:10.1191/1352458504ms1112oa

Cited by 140 publications

(162 citation statements)

References 27 publications

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“…Finally, the findings of this quantitative study described the low and moderate levels of awareness. These results are consistent with the findings of the study by Hansen et al [32] They found that 79% of patients tend to acquire the necessary knowledge about disease progression, duration of disease and disease control practices. In a study performed in 2012 Heydari and Shahbazi [33] found that if the elderly have accurate information about proper practices of nutrition, exercise, sleep and rest, and proper use of drugs, many of their problems can be avoided or, if created, can be well-managed, and steps can be taken to improve their quality of life.…”

Section: Discussionsupporting

confidence: 83%

Empowerment in the self-management of hypertension: challenges from the perspective of Iranian elderly patients

et al. 2017

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Uncontrolled hypertension in the elderly causes various diseases and disability. This study was aimed to explore the challenges in self-management empowerment from the perspective of Iranian elderly patients with hypertension. Using exploratory descriptive approach, on 30 hypertension patients in Bushehr by purposive and convenience sampling method. First, qualitative data were collected through interviews with the elderly , and the quantitative data were then collected using a researcher-made questionnaire in three dimensions of knowledge, attitude and performance. In the qualitative phase, coding and summarizing of the data obtained from deep semi-structured interviews with the elderly led to five areas of awareness of changes, autonomy, satisfaction with performance, coping and sense of control. 7 men and 23 women participated in the qualitative phase, in which the average age of participants was 66.17% and 63% were married. Data analysis showed that the mean score of the elderly was equal to 10.17 and 58.26 for the dimensions of knowledge and performance respectively, which were at a weak level; and the mean attitude score was 9.96, which was at a moderate level. Given the challenges in empowering the management of hypertension in elderly, the planned training is recommended to be developed for the elderly and health care staff to achieve the main objective, i.e. the empowerment of the elderly through the self-management of hypertension.

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Section: Discussionsupporting

confidence: 83%

Empowerment in the self-management of hypertension: challenges from the perspective of Iranian elderly patients

et al. 2017

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“…In Vorstudien konnte gezeigt werden, dass bis zu 75 der Patienten aktiv mitentscheiden möchten [22] und die Fähigkeit von MS-Patienten, Risikokalkulationen durchzuführen, durch das Üben mit entsprechenden Krankheitsinformationen signifikant erhöht werden kann [21].…”

Section: Multiple Skleroseunclassified

Partizipative Entscheidungsfindung

et al. 2006

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Involving patients in medical decisions is increasingly being advocated in medical fields other than psychiatry and neurology. A model of shared decision making might prove to be an ideal way of bridging the gap between patient-centred and evidence-based medicine. This report provides a survey of this shared decision making model and a discussion of its implications in the fields of mental health and neurology.

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“…Heesen et al 19 and Kopke et al 20 suggest that MS lends itself to a shared decision-making model. Of 1374 patients, these authors found that most preferred shared decision making or informed choice as their method of decision making (Figure 1).…”

Section: Patient's Rolementioning

confidence: 99%

“…19 Patients often must choose between four injectable therapies that, although effective, are not cures and are regarded by some clinicians as comparable in efficacy. In addition, patients must cope with symptoms daily, which range from mildly annoying to extremely debilitating.…”

Section: Patient's Rolementioning

confidence: 99%

Decision Making in Multiple Sclerosis: Theory to Practice

Morgante¹,

Hartley²,

Lowden³

et al. 2006

International Journal of MS Care

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Multiple sclerosis (MS) is an uncertain disease that manifests itself in neurological symptoms unique to each individual. People with MS and their families experience the day-to-day variability of the disease and often face difficult decisions regarding their care. Decisions include opting for a disease-modifying therapy soon after the diagnosis of MS is confirmed, choosing various pharmaceutical and nonpharmaceutical treatments for managing the symptoms that result, changing therapies and selecting alternatives when prescribed treatments are not successful, and determining whether to enter a clinical trial of a promising medication. When new therapies become available, nurses are faced with the important task of clarifying expectations, helping patients understand the risks and benefits of the new agent and, if appropriate, the rationale for continuing on their current regimen rather than switching therapies. Patients should be taught to appraise how they are doing on their current treatment and then weigh the evidence of something new in the light of their personal disease course and information available from the media and from peers. A framework for helping patients and families to make complicated decisions is an important step in continuing to provide high-quality care. This can be considered a new domain of MS nursing—one that includes consideration of the patient's hopes and dreams combined with the reality of the evidence. Principles of adult learning, cultural sensitivity, and state-of-the-art nursing knowledge are needed by MS nurses more than ever. The future of MS treatment is one of optimism despite its complexity.

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Decisional role preferences, risk knowledge and information interests in patients with multiple sclerosis

Abstract: Patients with MS claimed autonomous roles in their health care decisions. The weak correlation between knowledge and preferences for active roles implicates that other factors largely influence role preferences.

Cited by 140 publications

References 27 publications

Empowerment in the self-management of hypertension: challenges from the perspective of Iranian elderly patients

Empowerment in the self-management of hypertension: challenges from the perspective of Iranian elderly patients

Partizipative Entscheidungsfindung

Decision Making in Multiple Sclerosis: Theory to Practice

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