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Perkiö Kato, N., Jaarsma, T., Casida, J. M., Lee, C. S., Strömberg, A. & Ben Gal, T. (2019). Development of an Instrument for Measuring Self-Care Behaviors After Left Ventricular Assist Device Implantation.. Progress in transplantation, 29(4), 335-343, Article ID 1526924819874358.
Open this publication in new window or tab >>Development of an Instrument for Measuring Self-Care Behaviors After Left Ventricular Assist Device Implantation.
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2019 (English)In: Progress in transplantation, ISSN 2164-6708, Vol. 29, no 4, p. 335-343, article id 1526924819874358Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: Successful long-term left ventricular assist device (LVAD) therapy necessitates a high degree of self-care. We aimed to develop an instrument that measures self-care behaviors in adult patients living with an LVAD.

METHODS: We used the method to develop patient-reported outcomes recommended by the US Food and Drug Administration. Prior to developing the instrument, a literature review was conducted to generate items using the middle-range theory of self-care of chronic illness as a guiding framework. A 2-round Delphi method, involving 17 clinicians with expertise in heart failure and assist devices from the Netherlands, Israel, United States, Canada, and Japan, was used to generate and select items. In the first Delphi survey, the levels of importance, relevance, and clarity of items in the instrument were evaluated. The second Delphi survey was performed to gain consensus on the final selection of items. We also examined face validity.

RESULTS: A preliminary 37-item version of the Self-Care Behavior Scale was produced. The first panel judged 33 items as important and relevant, taking out 4 items due to vague wording and duplication and adding in 4 items. In the final 33-item version, 19 items address self-care maintenance behaviors, 10 items address self-care monitoring behaviors, and 4 items address self-care management behaviors. Patients (N = 25) did not have any difficulties understanding items and report any missing items.

CONCLUSION: The 33-item Self-Care Behavior Scale for patients with heart failure having an LVAD has been developed and is ready for further psychometric testing.

Place, publisher, year, edition, pages
Sage Publications, 2019
Keywords
heart failure, instrument, mechanical circulatory support, patient-reported outcomes, scale development
National Category
Nursing
Identifiers
urn:nbn:se:liu:diva-161720 (URN)10.1177/1526924819874358 (DOI)000495794200007 ()31570068 (PubMedID)
Available from: 2019-11-07 Created: 2019-11-07 Last updated: 2019-11-27Bibliographically approved
Khatib, R., Lee, G. A., Marques-Sule, E., Arnesdatter Hopstock, L., O'Donnell, S., Svavarsdóttir, M. H., . . . Stewart, C. (2019). Evaluating the extent of patient-centred care in a selection of ESC guidelines. European Heart Journal - Quality of Care and Clinical Outcomes, 1-7
Open this publication in new window or tab >>Evaluating the extent of patient-centred care in a selection of ESC guidelines
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2019 (English)In: European Heart Journal - Quality of Care and Clinical Outcomes, ISSN 2058-5225, E-ISSN 2058-1742, p. 1-7Article in journal (Refereed) Epub ahead of print
Abstract [en]

Patient-centred care (PCC) is the cornerstone for healthcare professionals to promote high quality care for patients with cardiovascular conditions. It is defined as ‘Providing care that is respectful of, and responsive to, individual patient preferences, needs and values, and ensuring that patient values guide all clinical decisions’. PCC can improve patient outcomes and allow patients and healthcare professionals to manage care collaboratively using best available evidence. However, there is no clear understanding how extensively guidelines incorporate PCC recommendations. The aim of the study was to evaluate the incorporation of PCC into a selection of guidelines published by the European Society of Cardiology (ESC).Using a narrative literature review and expert consensus, the Science Committee within the Association of Cardiovascular Nursing and Allied Professions (ACNAP) developed a checklist to determine PCC incorporation in clinical guidelines. Nine ESC guidelines were reviewed, with committee members independently evaluating five PCC aspects: patient voice and involvement, multidisciplinary involvement, holistic care recommendations, flexibility to meet patients’ needs, and provision of patient tools. The level of congruence in item ratings by experts was then compared. The incorporation of PCC using these respective five categories, ranged from 4% (patient tools) to 53% in the ‘multidisciplinary involvement’ category.Overall, the inclusion of PCC was low, indicating that patient perspectives and needs were less likely to be taken into account when developing, endorsing, or formulating recommendations. Future development of guidelines should ensure better incorporation of patients’ perspective, in particular, and other PCC aspects highlighted in this study.

Place, publisher, year, edition, pages
Oxford University Press, 2019
National Category
Cardiac and Cardiovascular Systems Nursing
Identifiers
urn:nbn:se:liu:diva-160799 (URN)10.1093/ehjqcco/qcz025 (DOI)
Note

qcz025

Available from: 2019-10-08 Created: 2019-10-08 Last updated: 2019-10-08Bibliographically approved
Andreasson, F., Aidemark, J., Magnusson, L., Strömberg, A. & Hanson, E. J. (2019). Lifeworld in co-designing with informal carers. JOURNAL OF ENABLING TECHNOLOGIES, 13(1), 29-39
Open this publication in new window or tab >>Lifeworld in co-designing with informal carers
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2019 (English)In: JOURNAL OF ENABLING TECHNOLOGIES, ISSN 2398-6263, Vol. 13, no 1, p. 29-39Article in journal (Refereed) Published
Abstract [en]

Purpose

The purpose of this paper is to reflect on carers’ experiences of being involved in the development of a web-based support programme for carers of people with heart failure (CPwHF), and discuss the challenges related to their involvement in the development process. The focus was on the different phases in the project as well as the methodological challenges and opportunities that occurred in the user group sessions conducted.

Design/methodology/approach

This research adopt an explorative design studying a co-design process to develop an information and communication technology based support programme for and with CPwHF. Habermas’ concepts of lifeworld and system are used as a theoretical framework to analyse the co-design process employed in the study.

Findings

Reflecting on the co-design approach adopted, the findings highlight the methodological challenges that arise with carer involvement and the possible tensions that occur between researchers’ ambitions to include users in the design process, and the goal of developing a product or service, in the different phases of the design process.

Originality/value

Findings highlight that there is a tension between the system and lifeworld in the co-design process which are not totally compatible. The paper highlights that there is a need to develop flexible and reflexive human-centred design methodologies, able to meet carers’ needs and ideas, and at the same time balance this with proposed research outcomes.

Place, publisher, year, edition, pages
Emerald Group Publishing Limited, 2019
Keywords
ICT; Carer; Co-design; Heart failure; Human-centred design; Support programme
National Category
Design
Identifiers
urn:nbn:se:liu:diva-164462 (URN)10.1108/JET-05-2018-0023 (DOI)000484263700003 ()2-s2.0-85063910007 (Scopus ID)
Note

Funding Agencies|Swedish National Science Council; Swedish Research Council for Health, Working life and Welfare (VR-FORTE) [2014-4100]

Available from: 2020-03-23 Created: 2020-03-23 Last updated: 2020-03-31Bibliographically approved
Ben Gal, T., Perkiö Kato, N., Yaari, V., Avraham, B., Klompstra, L., Strömberg, A. & Jaarsma, T. (2019). Psychometric Testing of the Hebrew Version of the European Heart Failure Self-Care Behaviour Scale. Heart, Lung and Circulation, Article ID S1443-9506(19)31523-9.
Open this publication in new window or tab >>Psychometric Testing of the Hebrew Version of the European Heart Failure Self-Care Behaviour Scale
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2019 (English)In: Heart, Lung and Circulation, ISSN 1443-9506, E-ISSN 1444-2892, article id S1443-9506(19)31523-9Article in journal (Refereed) Epub ahead of print
Abstract [en]

BACKGROUND: The assessment of self-care behaviour is important for tailoring care to patients and evaluating the effectiveness of heart failure (HF) disease-management programmes. The European HF Self-care Behaviour (EHFScB) scale is a validated instrument used worldwide.

AIM: The purpose of the study was to evaluate psychometric properties of the Hebrew version of the nine-item EHFScB scale in Israeli patients with HF.

METHOD: To develop the Hebrew version of the EHFScB scale, forward and back translation was performed. The psychometric evaluation was based on data from 102 patients with HF (mean age 61±12 yr, male 75%, New York Heart Association [NYHA] class II 42% and NYHA class III 51%) included in two cross-sectional studies performed in 2007 and 2015-2017 in an Israeli hospital. Content validity, construct validity, known-groups validity, and discriminant validity were assessed. Reliability was evaluated with internal consistency.

RESULTS: Content validity and useability were confirmed by HF experts and patients with HF. Construct validity was tested using factor analysis and two factors were extracted (factor 1: consulting behaviour; factor 2: adherence to the regimen). Known-groups validity testing revealed a significant difference before and after an educational intervention in the total score (n=40 [41.6±23.8] vs [67.6±21.8]; p<0.01). A weak correlation between the self-care score and health-related quality of life (r= -0.299, p<0.01) was observed, showing that these concepts were related but not overlapping. Cronbach's alpha was 0.78 for the total scale, 0.76 for factor 1, and 0.68 for factor 2, suggesting that the internal consistency of this scale was acceptable.

CONCLUSIONS: Our study provides support for the useability, validity, and reliability of the nine-item Hebrew version of the EHFScB scale.

Place, publisher, year, edition, pages
Elsevier, 2019
Keywords
Heart failure, Measurement, Reliability, Validity
National Category
Medical and Health Sciences Nursing
Identifiers
urn:nbn:se:liu:diva-162853 (URN)10.1016/j.hlc.2019.10.019 (DOI)31862228 (PubMedID)2-s2.0-85076848868 (Scopus ID)
Available from: 2019-12-25 Created: 2019-12-25 Last updated: 2020-03-26Bibliographically approved
Verheijden Klompstra, L., Johansson Östbring, M., Jaarsma, T., Ågren, S., Fridlund, B., Hjelm, C., . . . Strömberg, A. (2019). The Appropriateness and Presentation of Commonly Available Cardiovascular Web Pages Providing Information About Cardiovascular Diseases.. Computers, Informatics, Nursing, 37(10), 493-497
Open this publication in new window or tab >>The Appropriateness and Presentation of Commonly Available Cardiovascular Web Pages Providing Information About Cardiovascular Diseases.
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2019 (English)In: Computers, Informatics, Nursing, ISSN 1538-2931, E-ISSN 1538-9774, Vol. 37, no 10, p. 493-497Article in journal (Refereed) Published
National Category
Nursing
Identifiers
urn:nbn:se:liu:diva-161240 (URN)10.1097/CIN.0000000000000595 (DOI)31633511 (PubMedID)
Available from: 2019-10-24 Created: 2019-10-24 Last updated: 2020-02-03
Jaarsma, T. & Strömberg, A. (2019). We told you so: knowledge is not enough to improve heart failure self-care behaviour. ESC Heart Failure
Open this publication in new window or tab >>We told you so: knowledge is not enough to improve heart failure self-care behaviour
2019 (English)In: ESC Heart Failure, E-ISSN 2055-5822Article in journal, Editorial material (Refereed) Epub ahead of print
Abstract [en]

n/a

Place, publisher, year, edition, pages
John Wiley & Sons, 2019
National Category
Clinical Medicine
Identifiers
urn:nbn:se:liu:diva-160422 (URN)10.1002/ejhf.1580 (DOI)000483562500001 ()31452305 (PubMedID)2-s2.0-85071650967 (Scopus ID)
Available from: 2019-09-23 Created: 2019-09-23 Last updated: 2019-10-01Bibliographically approved
Mourad, G., Verheijden Klompstra, L., Jaarsma, T., Strömberg, A. & Alwin, J. (2019). What are patients with heart failure willing to pay for an exergame intervention?. In: : . Paper presented at EuroHeartCare.
Open this publication in new window or tab >>What are patients with heart failure willing to pay for an exergame intervention?
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2019 (English)Conference paper, Poster (with or without abstract) (Refereed)
Abstract [en]

Background: Regular physical activity in patients with heart failure (HF) improves physical capacity and quality of life, and may reduce health care utilization. One low-cost effective physical activity intervention to increase exercise capacity is exergaming. Exploring patients’ willingness to pay (WTP) for treatments/interventions is a way to obtain a monetary value for the health consequences of an intervention. This can further be used in economic evaluations.

Aim: The aim of this study was to describe patients´ WTP for an exergame intervention and to determine factors influencing the WTP.

Methods: This is a substudy of the Swedish cohort of the HF-Wii study (evaluating the effect of exergaming on exercise capacity in patients with HF; clinicaltrial.gov NCT01785121) including 34 patients who finished the 1-year follow-up. Structured telephone interviews were conducted focusing on WTP for the exergame intervention they received during the study including an exergame platform, an introduction lesson, installation of the exergame computer, and telephone follow-ups, and with an estimated cost of ∼€440 per patient. The WTP methodology used was adjusted for this specific study.

Patients were also asked to rate their level of satisfaction with the intervention on a Numeric Rating Scale (NRS) from 0-10. In addition, information on background variables and income was collected during the interview, while data on six minute walk test (6MWT) and quality of life was retrieved from previous data collection in the main study.

Results: In total, 29 patients with HF participated in this substudy, mean age 68±9 years, 69% males, and with a mean household disposable income/month of ∼€2700 (±1360). Ten patients (34.5%) had a clinically significant effect of the exergaming and improved more than 30 meters on the 6MWT.

The average WTP for the exergame intervention was ∼€160 (range €0-580). Most patients were satisfied with the exergame intervention and the median score was 8 on the NRS. The satisfaction level was significantly related to WTP (rs=0.468, p=0.012). Patients with higher satisfaction levels were willing to pay more (€210±165) for the exergame intervention than those with lower satisfaction levels (€60±70), p=0.015. Income, changes in 6MWT, and quality of life showed no significant relationship to WTP.

Conclusions: The WTP for an exergame intervention varied largely in patients with HF despite high satisfaction level with the intervention. The satisfaction level was the only factor influencing patients´ WTP. On average, patients were willing to pay about one-third of the cost of the exergame intervention. Future studies should focus on the cost-effectiveness of this intervention.

National Category
Nursing
Identifiers
urn:nbn:se:liu:diva-158027 (URN)
Conference
EuroHeartCare
Available from: 2019-06-24 Created: 2019-06-24 Last updated: 2019-09-16
Andreae, C., Strömberg, A., Chung, M. L., Hjelm, C. & Årestedt, K. (2018). Depressive Symptoms Moderate the Association Between Appetite and Health Status in Patients With Heart Failure. Journal of Cardiovascular Nursing, 33(2), E15-E20
Open this publication in new window or tab >>Depressive Symptoms Moderate the Association Between Appetite and Health Status in Patients With Heart Failure
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2018 (English)In: Journal of Cardiovascular Nursing, ISSN 0889-4655, E-ISSN 1550-5049, Vol. 33, no 2, p. E15-E20Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: Decreased appetite and depressive symptoms are clinical problems in patients with heart failure. Both may result in impaired health status.

OBJECTIVE: The aims of this study were to investigate the association between appetite and health status in patients with heart failure and to explore whether depressive symptoms moderate this association.

METHODS: In this cross-sectional study, patients with heart failure (n = 186; mean age, 71 years), New York Heart Association class II to IV, participated. Data on appetite (Council of Nutrition Appetite Questionnaire), depressive symptoms (Patient Health Questionnaire-9), and health status (EQ-5D 3-level scale [EQ-5D-3L] descriptive system, EQ-5D-3L index, and EQ Visual Analog Scale) were collected by self-rating questionnaires. Pearson correlation was used to investigate the association between appetite and health status. Multiple regression was performed to examine whether depressive symptoms moderate the association between appetite and health status.

RESULTS: There was a significant association between appetite and health status for EQ-5D-3L descriptive system, mobility (P < .001), pain/discomfort (P < .001), and anxiety/depression (P < .001). This association was also shown in EQ-5D-3L index (P < .001) and EQ Visual Analog Scale (P < .001). Simple slope analysis showed that the association between appetite and health status was only significant for patients without depressive symptoms (B = 0.32, t = 4.66, P < .001).

CONCLUSIONS: Higher level of appetite was associated with better health status. In moderation analysis, the association was presented for patients without depressive symptoms. Decreased appetite is an important sign of poor health status. To improve health status, health professionals should have greater attention on appetite, as well on signs of depressive symptoms.

Place, publisher, year, edition, pages
Wolters Kluwer, 2018
Keywords
appetite, association, depression, health status, heart failure, nutritional status
National Category
Cardiac and Cardiovascular Systems
Identifiers
urn:nbn:se:liu:diva-139105 (URN)10.1097/JCN.0000000000000428 (DOI)000440241700003 ()28574973 (PubMedID)2-s2.0-85020167287 (Scopus ID)
Available from: 2017-07-01 Created: 2017-07-01 Last updated: 2018-09-27Bibliographically approved
Riegel, B., Barbaranelli, C., Sethares, K. A., Daus, M., Moser, D. K., Miller, J. L., . . . Jaarsma, T. (2018). Development and initial testing of the self-care of chronic illness inventory. Journal of Advanced Nursing, 74(10), 2465-2476
Open this publication in new window or tab >>Development and initial testing of the self-care of chronic illness inventory
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2018 (English)In: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 74, no 10, p. 2465-2476Article in journal (Refereed) Published
Abstract [en]

Aim: The aim was to develop and psychometrically test the self-care of chronic illness Inventory, a generic measure of self-care. Background: Existing measures of self-care are disease-specific or behaviour-specific; no generic measure of self-care exists. Design: Cross-sectional survey. Methods: We developed a 20-item self-report instrument based on the Middle Range Theory of Self-Care of Chronic Illness, with three separate scales measuring Self-Care Maintenance, Self-Care Monitoring, and Self-Care Management. Each of the three scales is scored separately and standardized 0-100 with higher scores indicating better self-care. After demonstrating content validity, psychometric testing was conducted in a convenience sample of 407 adults (enrolled from inpatient and outpatient settings at five sites in the United States and ResearchMatch.org). Dimensionality testing with confirmatory factor analysis preceded reliability testing. Results: The Self-Care Maintenance scale (eight items, two dimensions: illnessrelated and health-promoting behaviour) fit well when tested with a two-factor confirmatory model. The Self-Care Monitoring scale (five items, single factor) fitted well. The Self-Care Management scale (seven items, two factors: autonomous and consulting behaviour), when tested with a two-factor confirmatory model, fitted adequately. A simultaneous confirmatory factor analysis on the combined set of items supported the more general model. Conclusion: The self-care of chronic illness inventory is adequate in reliability and validity. We suggest further testing in diverse populations of patients with chronic illnesses.

Place, publisher, year, edition, pages
WILEY, 2018
Keywords
chronic illness; comorbidity; factor analysis; instrument development; multimorbidity; nursing theory; psychometrics; self-care; validity
National Category
Nursing
Identifiers
urn:nbn:se:liu:diva-152830 (URN)10.1111/jan.13775 (DOI)000449085600023 ()29943401 (PubMedID)
Available from: 2018-11-22 Created: 2018-11-22 Last updated: 2019-06-27
Hjelmfors, L., Sandgren, A., Strömberg, A., Mårtensson, J., Jaarsma, T. & Friedrichsen, M. (2018). I was told that I would not die from heart failure. Applied Nursing Research, 41, 41-45
Open this publication in new window or tab >>I was told that I would not die from heart failure
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2018 (English)In: Applied Nursing Research, ISSN 0897-1897, E-ISSN 1532-8201, Vol. 41, p. 41-45Article in journal (Refereed) Published
Abstract [en]

Aim and objectives: To describe patients experiences of communication about their heart failure prognosis and explore how these experiences affected their preferences for future communication about the prognosis. Background: Professionals need to discuss about the heart failure prognosis with patients in order to improve their understanding of their illness and address palliative care needs. Methods: An inductive and exploratory design was used. A total of 24 patients (75% men, 52-87 years of age) in New York Heart Association class I-III from primary outpatient care participated in focus group-, or individual semi-structured interviews. Thematic analysis was used to identify and interpret patterns in the data. Findings: Two overarching themes, "The message sent" and "Hoping for the best or preparing for the worst", each with three sub-themes, were discovered during the thematic analysis. Many patients described that professionals had not provided them with any prognosis information at all. Other patients described professional information about prognosis that was given in an either very optimistic or very negative way. However, patients also described situations where professionals had given information in a way that they thought was perfect for them to handle, and in accordance with their preferences. Conclusion: This study shows that patients have different experiences and preferences for communication about prognosis and uses different approaches in order to cope living with a chronic illness such as heart failure.

Place, publisher, year, edition, pages
W B SAUNDERS CO-ELSEVIER INC, 2018
Keywords
Heart failure; Palliative care; Prognosis; Communication; Coping
National Category
Nursing
Identifiers
urn:nbn:se:liu:diva-149476 (URN)10.1016/j.apnr.2018.03.007 (DOI)000435427100008 ()29853212 (PubMedID)
Note

Funding Agencies|Swedish Heart-Lung Foundation [20110417]; King Gustaf Vs and Queen Victorias Foundation

Available from: 2018-07-05 Created: 2018-07-05 Last updated: 2019-06-27
Organisations
Identifiers
ORCID iD: ORCID iD iconorcid.org/0000-0002-4259-3671

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