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Jaarsma, T., Kato, N. P., Klompstra, L., Ben Gal, T., Boyne, J., Hägglund, E., . . . Strömberg, A. (2024). Changes over time in patient-reported outcomes in patients with heart failure. ESC Heart Failure, 11(2), 811-818
Open this publication in new window or tab >>Changes over time in patient-reported outcomes in patients with heart failure
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2024 (English)In: ESC Heart Failure, E-ISSN 2055-5822, Vol. 11, no 2, p. 811-818Article in journal (Refereed) Published
Abstract [en]

AIM: This paper describes the trajectory during 1 year of four patient-reported outcomes (PROs), namely, sleep, depressive symptoms, health-related quality of life (HrQoL), and well-being, in patients with heart failure (HF), their relationship and the patient characteristics associated with changes in these PROs.

METHODS AND RESULTS: Data analyses of PROs from 603 patients (mean age 67 years; 29% female, 60% NYHA II) enrolled in the HF-Wii study. On short term, between baseline and 3 months, 16% of the patients experienced continuing poor sleep, 11% had sustained depressive symptoms, 13% had consistent poor HrQoL, and 13% consistent poor well-being. Across the entire 1-year period only 21% of the patients had good PRO scores at all timepoints (baseline, 3, 6, and 12 months). All others had at least one low score in any of the PROs at some timepoint during the study. Over the 12 months, 17% had consistently poor sleep, 17% had sustained symptoms of depression, 15% consistently rated a poor HrQoL, and 13% poor well-being. Different patient characteristics per PRO were associated with a poor outcomes across the 12 months. Age, education, New York Heart Association, and length of disease were related to two PRO domains and submaximal exercise capacity (6 min test), co-morbidity, and poor physical activity to one.

CONCLUSION: In total, 79% of the patients with HF encountered problems related to sleep, depressive symptoms, HrQoL, and well-being at least once during a 1-year period. This underscores the need for continuous monitoring and follow-up of patients with HF and the need for dynamic adjustments in treatment and care regularly throughout the HF trajectory.

Place, publisher, year, edition, pages
John Wiley & Sons, 2024
Keywords
Heart failure, Patient-reported outcomes, Quality of life, Symptoms
National Category
Nursing Cardiac and Cardiovascular Systems
Identifiers
urn:nbn:se:hj:diva-63384 (URN)10.1002/ehf2.14648 (DOI)001133746900001 ()38158757 (PubMedID)2-s2.0-85180816908 (Scopus ID)GOA;intsam;928822 (Local ID)GOA;intsam;928822 (Archive number)GOA;intsam;928822 (OAI)
Funder
Swedish Research Council, K2013-69X-22302-01-3, 2016-01390Forte, Swedish Research Council for Health, Working Life and Welfare, 2014-4100Swedish Heart Lung Foundation, E085/12
Available from: 2024-01-17 Created: 2024-01-17 Last updated: 2024-04-03Bibliographically approved
Jaarsma, T. T., Kato, N. P., Klompstra, L., Ben Gal, T., Vellone, E., Mårtensson, J., . . . Stromberg, A. (2023). Changes over time in patient-reported outcomes in patients with heart failure. European Journal of Heart Failure, 25, 275-275
Open this publication in new window or tab >>Changes over time in patient-reported outcomes in patients with heart failure
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2023 (English)In: European Journal of Heart Failure, ISSN 1388-9842, E-ISSN 1879-0844, Vol. 25, p. 275-275Article in journal, Meeting abstract (Refereed) Published
Place, publisher, year, edition, pages
John Wiley & Sons, 2023
National Category
Cardiac and Cardiovascular Systems
Identifiers
urn:nbn:se:hj:diva-63024 (URN)001043122801121 ()
Funder
Swedish Heart Lung Foundation
Available from: 2023-12-11 Created: 2023-12-11 Last updated: 2024-02-07Bibliographically approved
Falck, J., Rolander, B., Nygårdh, A., Jonasson, L.-L. & Mårtensson, J. (2023). Experiences of healthcare and treatments in women with lipedema - results from a Swedish national survey. In: : . Paper presented at FDRS 2023 Conference, 14-16 April 2023, Atlanta, USA.
Open this publication in new window or tab >>Experiences of healthcare and treatments in women with lipedema - results from a Swedish national survey
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2023 (English)Conference paper, Oral presentation with published abstract (Refereed)
Abstract [en]

Objectives 

Lipedema is associated with multiple health problems which limit daily life. Still, the disease is frequently misunderstood in healthcare, and research from the patient’s perspective is relatively sparse. A Swedish national survey was conducted, to comprehensively examine health and quality of life among women with lipedema. Furthermore, the study explored participants’ self-care, self-reported effects of different treatments, and experiences when seeking healthcare.

Results

In total, 245 women with lipedema responded to the survey. The majority were 40-59 years old, and over half of the participants were in lipedema stage 3. Overall, in most age groups, women with lipoedema scored approximately 25-35 points lower in their physical and mental health than an age-matched general Swedish female population. Moreover, it often took decades from disease onset, including many healthcare visits, to be correctly diagnosed. Compared to a general female population, women with lipedema scored significantly lower on satisfaction with healthcare in dimensions of availability, information and knowledge, Experiences of emotional support, continuity and coordination, respect and treatment, and participation and involvement. Particularly low scores were recorded in participants’ overall impression of healthcare, including expectations of care, perceived efficiency, being cared for, and accessing information about treatment alternatives. Women with lipedema used several different treatments to manage their health problems. Most common were performing low-intensity exercise and using compression garments, of which approximately half of the participants rated as having a good or a very good effect. Less used, but self-reported as more effective, were conservative and surgical treatments performed by healthcare professionals.  

Conclusion

Lipedema has a significant negative impact on health and quality of life. Still, the diagnosis delay is extensive, and women with lipedema generally report low levels of satisfaction with healthcare. Although managing lipedema symptoms with self-care is common, treatments performed in healthcare were identified as having the most positive effects. Unfortunately, these are less likely to be used, suggesting barriers to healthcare. 

Learning objectives

This research aims to contribute to a holistic understanding of lipedema, including the management of lipedema symptoms from the patient’s perspective and the challenges these women face in healthcare. This is essential when implementing effective treatment plans and prioritising healthcare interventions.

At the conclusion of this activity, participants should be able to: 

  1. Recognize and describe experiences that women with lipedema have regarding their treatment and healthcare
  2. Identify healthcare improvements for women with lipedema
National Category
Nursing
Identifiers
urn:nbn:se:hj:diva-60216 (URN)
Conference
FDRS 2023 Conference, 14-16 April 2023, Atlanta, USA
Available from: 2023-04-21 Created: 2023-04-21 Last updated: 2023-04-21Bibliographically approved
Falck, J., Nygårdh, A., Rolander, B., Jonasson, L.-L. & Mårtensson, J. (2023). Healthcare experiences, health-related stigma, and social support among Swedish women with lipoedema – results from a national survey. In: : . Paper presented at Lipedema World Congress, 5-7 October 2023, Potsdam, Germany.
Open this publication in new window or tab >>Healthcare experiences, health-related stigma, and social support among Swedish women with lipoedema – results from a national survey
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2023 (English)Conference paper, Oral presentation only (Refereed)
Abstract [sv]

Lipoedema is a disease in adipose tissue associated with multiple health problems that negatively impact the quality of life. However, due to body appearance, the disease is frequently misunderstood as lifestyle-induced obesity, and the affected women are at risk of being fat-shamed and lacking prerequisite support from healthcare providers and other people. Although the negative impact lipoedema has on health and social life, research from the affected women´s perspective is relatively sparse. Therefore, we conducted a Swedish national survey to explore healthcare experiences, health-related stigma, and social support among women with lipoedema. 

Methods

An online survey with closed and open questions assessing sociodemographic, lipoedema characteristics, health-care experiences, health-related stigma, and perceived social support was sent out to all Lipoedema Association groups across Sweden. 

Participants

In total, 245 women with lipoedema responded to the survey. The majority of participants were aged 40-59, and over half were in lipoedema stage 3. Most of the women had a combination of lipoedema type 3 and type 4.

Results

The result showed that it often takes decades, including many healthcare visits, from disease onset to diagnosis. Moreover, participants reported an overall significantly lower patient satisfaction with healthcare compared to a general Swedish female population. Especially low scores were found in the dimensions of Emotional support, Continuity and coordination, and Information and knowledge, which related to participants’ dissatisfaction with healthcare providers’ availability, responsiveness, commitment, and compassion for the patient’s worries and needs. Furthermore, compared to a general Swedish female population, women with lipoedema scored significantly more health-related social impairment. When analyzing data for stigma and health-related quality of life, significant correlations across higher levels of stigma and lower physical and social functioning and emotional well-being were found. In this study, participants generally reported a strong perception of social support, with having particularly good support from significant others (i.e., perceived support from a particular person who is not a family member or friend). Moreover, we found that the association between higher levels of social support and better emotional well-being was significant.

Conclusion

The challenges associated with diagnosis delay and the low satisfaction with healthcare underscore an urgent need for healthcare improvements in the management of lipoedema. The impact health-related stigma and social support have on various aspects of functioning and well-being in women with lipoedema is crucial to acknowledge and address in healthcare to enhance the affected women's quality of life. 

National Category
Nursing
Identifiers
urn:nbn:se:hj:diva-62679 (URN)
Conference
Lipedema World Congress, 5-7 October 2023, Potsdam, Germany
Available from: 2023-10-17 Created: 2023-10-17 Last updated: 2023-10-20Bibliographically approved
Fridlund, B. & Mårtensson, J. (2023). Kritisk ­incident-­teknik (3. uppled.). In: M. Henricson (Ed.), Vetenskaplig teori och metod: från idé till examination inom vård- och hälsovetenskap (pp. 185-196). Lund: Studentlitteratur AB
Open this publication in new window or tab >>Kritisk ­incident-­teknik
2023 (Swedish)In: Vetenskaplig teori och metod: från idé till examination inom vård- och hälsovetenskap / [ed] M. Henricson, Lund: Studentlitteratur AB, 2023, 3. uppl, p. 185-196Chapter in book (Other academic)
Place, publisher, year, edition, pages
Lund: Studentlitteratur AB, 2023 Edition: 3. uppl
National Category
Nursing
Identifiers
urn:nbn:se:hj:diva-63543 (URN)9789144161389 (ISBN)
Available from: 2024-02-13 Created: 2024-02-13 Last updated: 2024-02-13Bibliographically approved
Henricson, M. & Mårtensson, J. (2023). Publicering av examensarbete (3. uppled.). In: M. Henricson (Ed.), Vetenskaplig teori och metod: från idé till examination inom vård- och hälsovetenskap (pp. 547-558). Lund: Studentlitteratur AB
Open this publication in new window or tab >>Publicering av examensarbete
2023 (Swedish)In: Vetenskaplig teori och metod: från idé till examination inom vård- och hälsovetenskap / [ed] M. Henricson, Lund: Studentlitteratur AB, 2023, 3. uppl, p. 547-558Chapter in book (Other academic)
Place, publisher, year, edition, pages
Lund: Studentlitteratur AB, 2023 Edition: 3. uppl
National Category
Nursing
Identifiers
urn:nbn:se:hj:diva-63544 (URN)9789144161389 (ISBN)
Available from: 2024-02-13 Created: 2024-02-13 Last updated: 2024-02-13Bibliographically approved
Mårtensson, J. & Fridlund, B. (2023). Vetenskaplig kvalitet i examensarbete (3. uppled.). In: M. Henricson (Ed.), Vetenskaplig teori och metod: från idé till examination inom vård- och hälsovetenskap (pp. 473-490). Lund: Studentlitteratur AB
Open this publication in new window or tab >>Vetenskaplig kvalitet i examensarbete
2023 (Swedish)In: Vetenskaplig teori och metod: från idé till examination inom vård- och hälsovetenskap / [ed] M. Henricson, Lund: Studentlitteratur AB, 2023, 3. uppl, p. 473-490Chapter in book (Other academic)
Place, publisher, year, edition, pages
Lund: Studentlitteratur AB, 2023 Edition: 3. uppl
National Category
Nursing
Identifiers
urn:nbn:se:hj:diva-63547 (URN)9789144161389 (ISBN)
Available from: 2024-02-13 Created: 2024-02-13 Last updated: 2024-02-13Bibliographically approved
Markhus, L. S., Mårtensson, J., Keilegavlen, H. & Fålun, N. (2023). Women with heart failure and their experiences of sexuality and intimacy: A qualitative content analysis. Journal of Clinical Nursing, 32(19-20), 7382-7389
Open this publication in new window or tab >>Women with heart failure and their experiences of sexuality and intimacy: A qualitative content analysis
2023 (English)In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 32, no 19-20, p. 7382-7389Article in journal (Refereed) Published
Abstract [en]

Aim and Objective: This study aimed to explore how women with heart failure experience intimacy and sexual activity.

Background: Knowledge about women diagnosed with heart failure and their sexual activity is scarce. By investigating the experience of sexual activity and intimacy of women diagnosed with heart failure, an alignment between current practice and patients' expectations and needs within this area might be obtained.

Design: A qualitative design was used.

Methods: Fifteen women diagnosed with heart failure were recruited from a heart failure outpatient clinic at a university hospital. The study was carried out from January to September 2018. The inclusion criteria were women >18 years, with estimated New York Heart Association Class II or III living together with a partner. Face-to-face semi-structured interviews were undertaken at the hospital. The interviews were organised around a set of predetermined open-ended questions, transcribed verbatim and analysed using a qualitative content analysis. COREQ guidelines were used.

Results: The analysis revealed one overarching theme characterises how living with heart failure has an impact on women's sexual relationship. Furthermore, three sub-themes were identified: (1) redefining sexual activity, (2) reducing sexual activity and (3) maintaining sexual activity.

Conclusion: Women need information about sexual activity and heart failure in order to prevent fear and anxiety. It is important to include partners in patient consultations at heart failure outpatient clinics and in sexual counselling. It is furthermore essential to educate patients about sexual activity in relation to medication and comorbidities.

Relevance to Clinical Practice: Findings from this study support that information about sexuality and intimacy is a central part of the consultation in a heart failure outpatient clinic, and highlights the importance of not making assumptions about aging, frailty and interest in sexual expression.

Patient Contribution: Data were collected through face-to-face semi-structured interviews.

Place, publisher, year, edition, pages
John Wiley & Sons, 2023
Keywords
heart disease, qualitative approaches, qualitative descriptive, qualitative study, quality of life, sexual well-being, sexuality, women's health
National Category
Nursing
Identifiers
urn:nbn:se:hj:diva-61604 (URN)10.1111/jocn.16775 (DOI)001002658400001 ()37283206 (PubMedID)2-s2.0-85161641891 (Scopus ID)HOA;intsam;887995 (Local ID)HOA;intsam;887995 (Archive number)HOA;intsam;887995 (OAI)
Available from: 2023-06-26 Created: 2023-06-26 Last updated: 2023-12-07Bibliographically approved
Wu, E., Mårtensson, J., Desta, L. & Broström, A. (2022). Adverse events and their management during enhanced external counterpulsation treatment in patients with refractory angina pectoris: observations from a routine clinical practice. European Journal of Cardiovascular Nursing, 21(2), 152-160
Open this publication in new window or tab >>Adverse events and their management during enhanced external counterpulsation treatment in patients with refractory angina pectoris: observations from a routine clinical practice
2022 (English)In: European Journal of Cardiovascular Nursing, ISSN 1474-5151, E-ISSN 1873-1953, Vol. 21, no 2, p. 152-160Article in journal (Refereed) Published
Abstract [en]

AIMS: Enhanced external counterpulsation (EECP) is a non-invasive treatment (35 one-hour sessions) for patients with refractory angina pectoris (RAP). To avoid interruption of treatment, more knowledge is needed about potential adverse events (AE) of EECP and their appropriate management. To describe occurrence of AE and clinical actions related to EECP treatment in patients with RAP and compare the distribution of AE between responders and non-responders to treatment.

METHODS AND RESULTS: A retrospective study was conducted by reviewing medical records of 119 patients with RAP who had undergone one EECP treatment and a 6-min-walk test pre- and post-treatment. Sociodemographic, medical, and clinical data related to EECP were collected from patients' medical records. An increased walking distance by 10% post-treatment, measured by 6-min-walk test, was considered a responder. The treatment completion rate was high, and the occurrence of AE was low. Adverse events occurred more often in the beginning and gradually decreased towards the end of EECP treatment. The AE were either device related (e.g. muscle pain/soreness) or non-device related (e.g. bradycardia). Medical (e.g. medication adjustments) and/or nursing (e.g. extra padding around the calves, wound dressing) actions were used. The AE distribution did not differ between responders (n = 49, 41.2%) and non-responders. Skin lesion/blister occurred mostly in responders and paraesthesia occurred mostly in non-responders.

CONCLUSION: Enhanced external counterpulsation appears to be a safe and well-tolerated treatment option in patients with RAP. However, nurses should be attentive and flexible to meet their patients' needs to prevent AE and early termination of treatment.

Place, publisher, year, edition, pages
Oxford University Press, 2022
Keywords
Adverse events, Cardiac nurses, Clinical actions, Enhanced external counterpulsation, Refractory angina pectoris
National Category
Cardiac and Cardiovascular Systems Nursing
Identifiers
urn:nbn:se:hj:diva-54884 (URN)10.1093/eurjcn/zvab040 (DOI)000755866700001 ()34002207 (PubMedID)2-s2.0-85114404084 (Scopus ID)
Available from: 2021-10-18 Created: 2021-10-18 Last updated: 2022-04-07Bibliographically approved
Hjelmfors, L., Mårtensson, J., Strömberg, A., Sandgren, A., Friedrichsen, M. & Jaarsma, T. (2022). Communication about Prognosis and End-of-Life in Heart Failure Care and Experiences Using a Heart Failure Question Prompt List. International Journal of Environmental Research and Public Health, 19(8), Article ID 4841.
Open this publication in new window or tab >>Communication about Prognosis and End-of-Life in Heart Failure Care and Experiences Using a Heart Failure Question Prompt List
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2022 (English)In: International Journal of Environmental Research and Public Health, ISSN 1661-7827, E-ISSN 1660-4601, Vol. 19, no 8, article id 4841Article in journal (Refereed) Published
Abstract [en]

Background: To further advance the use of a heart-failure-specific question prompt list (HF-QPL) for communication about prognosis and end-of-life care, knowledge about such communication and the perceptions and experiences of professionals is needed. Objectives: 1. to describe health care professionals’ perceptions of communication about prognosis and end-of-life in heart failure (HF) care, and 2. to describe their experiences of using a HF-QPL. Design: A qualitative design that analyzed material from written assignments of nurses and physicians who were using a HF-QPL while participating in a communication course. Methods: Fifteen health care professionals from different regions in the south of Sweden were included. The data were collected from course assignments on 1. their reflection on the suitable timepoint for talking about prognosis for the first time, 2. their reflection on the HF-QPL, and 3. their experiences of using the HF-QPL in clinical practice. Data were analyzed using thematic analysis. Results: Five overarching themes were identified. The first theme was awareness of professional role responsibilities that described the recognition of different responsibilities in these conversations within the HF team. The second theme described the importance of being optimally prepared, and the third that confidence and skills are required to use the HF-QPL. The fourth theme described the HF-QPL as a bridge in the communication between professionals, patients, and family members. The fifth theme identified challenges using the HF-QPL in HF care. Conclusions: Using a HF-QPL in HF care has the potential to start conversation and facilitate discussion about the HF trajectory.

Place, publisher, year, edition, pages
MDPI, 2022
Keywords
heart failure, palliative care, question prompt list
National Category
Nursing
Identifiers
urn:nbn:se:hj:diva-56273 (URN)10.3390/ijerph19084841 (DOI)000786048400001 ()35457710 (PubMedID)2-s2.0-85128232213 (Scopus ID)GOA;;808346 (Local ID)GOA;;808346 (Archive number)GOA;;808346 (OAI)
Funder
Medical Research Council of Southeast Sweden (FORSS)
Available from: 2022-04-25 Created: 2022-04-25 Last updated: 2022-05-06Bibliographically approved
Organisations
Identifiers
ORCID iD: ORCID iD iconorcid.org/0000-0002-7406-8732

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