Weaning patients from mechanical ventilation is a complex process that also affects family members, yet their perspectives remain understudied. AIM:To explore the lived experiences of family members of patients being weaned from mechanical ventilation in intensive care. DESIGN:A qualitative, deductive design was used, inspired by the hermeneutic phenomenological research method described by van Manen. METHODS:Eight family members were purposively included. The data collection consisted of personal diary notes, written during the patients' weaning phase, and individual semi-structured interviews conducted after patient discharge from intensive care. RESULTS:The findings were related to meaningfulness and inherent strength experienced by the family members, which were enhanced by being present at the bedside, near the patient, and involved in care. Family members shaped a temporary structure for their new everyday lives and experienced hope when thinking about the future. CONCLUSIONS:This study explores the lived experiences of family members, emphasising the importance of being near the patient, touching, maintaining contact, and communicating. Family members wish to be involved according to their preferences and capabilities. Such involvement creates meaningfulness, which further promotes family members' inherent strength. Healthcare professionals play a vital role, highlighting the advantages of adopting a person-centred approach towards the family members by considering their resources, capabilities, and suffering, which vary over time and among different persons. To care for family members during patient weaning, healthcare professionals need to understand their needs and contributions, making the delivery of person-centred care essential. This study highlights that person-centred care extends beyond the patient to include family members. Recognising and supporting families as active partners in the weaning process is essential, as their involvement strengthens the well-being of both patients and families. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE:Healthcare professionals should recognise family members as active partners in the weaning process and adapt person-centred care to their individual needs and capacities. PATIENT OR PUBLIC CONTRIBUTION:Only the family members of the patients were involved in the study. REPORTING METHOD:This study adhered to the COREQ criteria.

Background:Lifestyle factors, including diet, physical activity, smoking cessation, and stress management, are crucial for reducing the risk of recurrent cardiac events and promoting overall cardiovascular health. Despite their clinical significance, the experiences of patients with coronary heart disease (CHD) in adjusting to and maintaining these lifestyle changes after their first percutaneous coronary intervention (PCI) remain relatively unexplored, especially in China. This study aims to address this gap by exploring the experiences of patients with CHD in central China as they make adjustments to healthy lifestyles following their first PCI. Methods:A qualitative descriptive study was designed. Eighteen participants from a regional teaching hospital in central China participated in the study conducted from 2022 to 2023. Data were collected through face-to-face interviews guided by semi-structured questions, resulting in five sub-themes and one main theme emerging from the thematic analysis. Results:Adjusting to a healthy lifestyle post-PCI was described as "moving forward despite obstacles", reflecting resilience and determination in overcoming challenges to improve health and well-being. The participants initially trusted their doctors' recommendations and became motivated by the positive effects of lifestyle changes and the desire to alleviate the burden of their loved ones. However, they also faced challenges related to Chinese traditional culture and other physical issues. Conclusion:Adjustment to a healthy lifestyle is essential but challenging. Our findings highlight the influence of external and internal factors on behavioural changes and underscore the need for health professionals to understand and support patients' experiences to inspire and sustain their lifestyle adjustments. Trial Registration:Not applicable.

AIMS:Sense of coherence (SOC) allows individuals to be more resilient to adverse life events, and it is associated with quality of life (QoL), but its long-term effects are unknown in patients with myocardial infarction. This study aimed to examine longitudinal variations of SOC and associations between SOC at baseline and QoL at a 10-year follow-up in relation to gender. METHODS AND RESULTS:This longitudinal study included 61 patients, 16 women and 45 men with a mean age of 57.1 ± 6.5 years, who completed a questionnaire package in relation to hospital discharge, 2 years, 5 years, and 10 years later. The questionnaire package included the Sense of Coherence Scale (SOC-13), 12-item Short Form Health Survey, and Seattle Angina Questionnaire. Data were analysed with repeated measure ANOVA and linear regression. Overall, SOC was stable over the 10-year follow-up, but comprehensibility improved significantly (P = 0.003). A significant main effect for gender was shown regarding SOC total (P = 0.032) and comprehensibility (P = 0.034); women reported lower SOC compared with men. An interaction effect between gender and time was shown in comprehensibility (P = 0.007), as the differences between genders decreased over time. The SOC-13 was significantly associated with all dimensions of QoL; three significant interaction effects showed that the associations were true for women but not for men. CONCLUSION:The SOC is an important aspect to consider in the care of patients with myocardial infarction, as it is associated with long-term QoL, particularly for women. This means that SOC can also be used to identify patients who are at risk for poor QoL after a myocardial infarction.

Lipoedema is a loose connective tissue disease primarily affecting women characterized by an abnormal build-up of painful fat in the legs and arms. In healthcare, lipoedema is often confused with obesity, and today, diagnostic tools and standardized guidelines for adequate treatments are lacking. Still, research on how affected women manage their health problems and whether they are satisfied with their care remains sparse. Therefore, this study aimed to contribute knowledge on healthcare experiences, and their use and self-reported effects of self-care and treatments among women with lipoedema. This national study, with a mixed-methods design, involved 245 women with lipoedema, recruited from all Lipoedema Association groups across Sweden. Data were collected between June and September 2021 through an online survey that included closed- and open-ended questions on self-care, lipoedema treatment, patient satisfaction, and healthcare experiences. Data were analysed using descriptive and inferential statistics, and qualitative reflexive thematic analysis. The results showed a delay in diagnosis spanning decades, often preceded by numerous healthcare visits. Many women attempted to cope with their health problems using various self-care approaches. However, lipoedema treatments performed by healthcare providers were deemed the most effective. Overall, the women reported significantly low satisfaction with healthcare. The lowest score, 48 points out of 100, was found in the overall impression of offered care, reflecting perceived inefficiency and unmet expectations. Compared to a general Swedish female population, the most significant gaps were found in the dimensions of information and knowledge, and emotional support, 22 and 25 points lower, respectively. The women described their experiences in healthcare as a challenging and isolated journey. Four themes were generated: A lonely and demanding journey in the healthcare system; An uncertainty of and inconsistency in available healthcare; A burden of being unheard and disrespected in healthcare; and The impact of lack of knowledge in healthcare. Seeking care for lipoedema is a long and burdensome journey with limited access to tailored care. Many women make significant efforts to manage their health problems independently. This emphasizes a need for timely lipoedema diagnosis, improved support, and better access to effective treatments.

This study aimed to translate the Caregiver Task Inventory-45 (CTI-45) into Mandarin and evaluate its psychometric properties for use among family caregivers of stroke survivors in China. This methodological study included cognitive interviews and a psychometric evaluation of the CTI-45. Questionnaires were distributed to family caregivers at four tertiary hospitals in Tianjin, China. In addition to the eight family caregivers who participated in the cognitive interviews, 251 family caregivers of stroke survivors aged ≥ 18 years, who were biologically or legally related to the survivors, were providing unpaid home care, and were proficient in Mandarin, completed the survey. The CTI-45 was translated according to the European Organisation for Research and Treatment of Cancer (EORTC) translation protocol. Cognitive interviews were then conducted to evaluate the Mandarin CTI-45 using ordinal confirmatory factor analysis (CFA). The suggested one- and three-factor models were both evaluated. Internal consistency reliability was assessed using ordinal alpha and ordinal omega coefficients. The suggested three-factor model was superior compared to the one-factor model and demonstrated acceptable model fit (RMSEA = 0.042, CFI = 0.996, TLI = 0.995, SRMR = 0.072). All three scales demonstrated excellent reliability according to ordinal alpha and ordinal omega: Direct care to the patient 0.96/0.92, Intrapersonal tasks 0.97/0.94, and Interpersonal ties 0.95/0.90. The Mandarin version of the CTI-45 demonstrated good psychometric properties and could be used to assess the multidimensional care needs of family caregivers caring for stroke survivors.

BACKGROUND:Weaning from mechanical ventilation is a complex and central intensive care process. This complexity indicates that the challenges of weaning must be explored from different perspectives. Furthermore, physicians' experiences and the factors influencing their decision-making regarding weaning are unclear. OBJECTIVES:This study aimed to explore and describe the factors influencing physicians' decision-making when weaning patients from invasive mechanical ventilation in Swedish intensive care units (ICUs). METHODS:This qualitative study used an exploratory and descriptive design with qualitative content analysis. Sixteen physicians from five ICUs across Sweden were purposively included and interviewed regarding their weaning experiences. FINDINGS:The physicians expressed that prioritising the patient's well-being was evident, and there was agreement that both the physical and mental condition of the patient had a substantial impact on decision-making. Furthermore, there was a lack of agreement on whether patients should be involved in the weaning process and how their resources, needs, and wishes should be included in decision-making. In addition, there were factors not directly linked to the patient but which still influenced decision-making, such as the available resources and teamwork. Sometimes, it was difficult to point out the basis for decisions; in that decisions were made by gut feeling, intuition, or clinical experience. CONCLUSION:Physicians' decision-making regarding weaning was a dynamic process influenced by several factors. These factors were related to the patient's condition and the structure for weaning. Increased understanding of weaning from the physicians' and ICU teams' perspectives may improve the weaning process by broadening the knowledge about the aspects influencing the decision-making.

IntroductionEarly integration of palliative care (PC) alongside oncology care is widely recognised as beneficial for patients and their next of kin. Sharing the responsibility with colleagues can ease the burden for the physician. However, according to our previous research with physicians, while two out of three expressed a positive attitude towards early integration of PC, only one-third actually implemented it. To facilitate the early integration of PC, the physicians' own attitudes need to be highlighted. The aim of this study was to explore Swedish physicians' personal experiences and their view of the role of the organisation when referring patients with cancer to PC.MethodsA study was performed using a study-specific questionnaire. Physicians working with cancer patients within different specialties participated. Data were collected in a cross-sectional online survey. Quantitative data (items) were analysed using descriptive statistics and open-ended responses were analysed with thematic analysis.ResultsIn total, 130 physicians participated. The majority reported feeling confident when introducing PC to patients (97.6%) They expressed a high degree of medical and emotional relief when the patients were enrolled in PC. Organisational challenges were reported in gaining acceptance from PC providers (50.9%) and in ensuring equal access to PC (54.5%). Thematic analysis identified multifaceted aspects related to navigating barriers and facilitators in the referral process, the benefits achieved from mutual collaboration with PC providers, and the physician related challenges when managing the organisational labyrinth.ConclusionThe physicians expressed confidence in discussing PC with patients. They experienced personal, professional, patient-related and organisational benefits when patients were enrolled in PC. A majority expressed that the patients did not have equal access to PC. To reach this goal, organisational aspects, including communication pathways and geographical restrictions, need to be addressed.

Lipedema is a chronic disease in adipose tissue affecting women. The distinctive body appearance in lipedema, often mistaken for obesity, may be detrimental to social life. In our online cross-sectional survey study, conducted from June to September 2021 among 245 women with lipedema, we found significantly more health-related stigma compared to an aged-matched general female population (N = 1872), leading to an overall lower quality of life. Conversely, strong social support was associated with better social and emotional functioning. As such, healthcare professionals must, even in the early stages, recognize this disease and address its impact on psychosocial health and well-being.

To explore the experiences of sexual health and intimate relationships in women with lipedema. A qualitative interview study. Sixteen women with lipedema recruited from a national lipedema association group in Sweden participated. Data were collected between October 2023 and February 2024 and analysed using content analysis. Four main categories were identified. Being burdened by body shame highlighted the women's body dissatisfaction, difficulties in self-acceptance and shame when being naked in front of their partners. Being hindered by an aching and heavy body captured the experiences of bodily pain and heaviness in intimate situations. Being torn between desire and avoidance revealed that the women longed for intimacy but adopted different strategies to avoid it. Being affected by what is said and what is left unsaid showed the role of the partner's approach as well as the strain of not discussing sexual problems with partners or healthcare providers. Women with lipedema experience physical, psychological and relational challenges in sexual life and intimacy. Still, these challenges remain unaddressed in healthcare settings. Nurses and midwives should, in their unique role in encountering women throughout their lifespans, address and invite dialogues on sexual-related concerns of women affected by lipedema. The study findings provide insights into how lipedema affects women's sexual health and intimate relationships and offer new knowledge that can be applied when planning targeted interventions to promote the sexual health and well-being of women with lipedema. Adherence to the EQUATOR guidelines and COREQ checklist. Two patient representatives from a lipedema association group contributed to this study by distributing study information to their members.

OBJECTIVES:This study determines the effect of an integrated 12-month follow-up support programme on the oral health of patients with head and neck cancer (HNC) who received radiotherapy (RT). METHODS:Participants were randomly assigned to an intervention group (n = 47) or a control group (n = 45). The intervention group received usual care and an integrated supportive programme, which included face-to-face education and telephone coaching. The control group received usual care. After a clinical dental examination, the prevalence of caries, gingival inflammation and plaque were registered. Oral health impact profile (OHIP)-14 and the WHO Oral Health Questionnaire for Adults were used to evaluate oral health in both groups. RESULTS:A total of 79 participants completed a 12-month follow-up. The intervention group had lower caries increment between baseline and the 12-month follow-up compared with controls, although this was not statistically significant. After 12 months, the intervention group had statistically significant better outcomes in the plaque index (p = 0.038) and the OHIP-14 (p = 0.002) than the control group. No statistically significant differences were found between the two groups concerning gingival index. However, the intervention group reported an overall better state of teeth (p = 0.034) and gums after 12 months (p = 0.042). CONCLUSIONS:The integrated supportive programme showed positive effects on improving oral health in patients with HNC regarding plaque control, the state of teeth and gums and oral health-related quality of life during the 12-month follow-up.

Introduction: The demand for percutaneous coronary intervention (PCI) has been steadily increasing along with the number of patients with coronary heart disease (CHD) in China. However, there is a lack of studies investigating health-related quality of life (HRQoL), self-efficacy, and depression among Chinese patients undergoing their first PCI. The aim of this study was to explore the association between depression, self-efficacy, and HRQoL among Chinese patients with CHD undergoing their first PCI. Methods: In this cross-sectional study, 212 Chinese patients with CHD who underwent their first PCI were recruited through convenience sampling from October 2019 to March 2020. HRQoL, self-efficacy, and depression were assessed using the Seattle Angina Questionnaire, Cardiac Self-Efficacy Scale, and Short-Form Cardiac Depression Scale, respectively, along with the collection of patients’ sociodemographic and clinical information. Results: Among the 212 participants, the average age was 59.82 years, and 145 (68.4%) were male. The average scores for self-efficacy, depression, and HRQoL were 33.49 (±10.28), 16.14 (±6.12), and 328.33 (±62.55), respectively. Among the 212 patients who underwent PCI, 134 (63.21%) were found to have depression symptoms according to the cutoff score of 14. A higher body mass index, a diagnosis of acute coronary syndrome, fewer years of CHD diagnosis, the absence of symptoms of depression and greater self-efficacy were significantly positively associated with HRQoL. In total, these variables explained 37.2% of the variance in HRQoL. Conclusion: This study revealed that the HRQoL of patients in this group needs to receive more attention. A comprehensive secondary prevention intervention for CHD patients undergoing their first PCI should emphasize mitigating depression and positively influencing their self-efficacy.

Abstract Background Persons with heart failure need rehabilitation, but often face challenges due to their illness to participate. Yoga is an alternative form of rehabilitation. In this study we introduced tele-yoga that enables participants to practice group yoga at home with a live-streamed instructor via video communication and individual yoga using an application. Expectations of the participants play a crucial role in the perception of health and healthcare experiences. The aim was to explore the relationship between expectations and experiences of tele-yoga in persons with heart failure over time. Methods The study had a longitudinal qualitative design with data collected at 3 time points. Data were collected through interviews and analyzed using summative content analysis. Study participants were recruited from the intervention group of a randomized controlled trial evaluating effects of 12 weeks of group tele-yoga. The interview guide explored participants' expectations of tele-yoga at baseline before the intervention started and their experiences after 3 and 6 months. Results Interviews were conducted with 93 study participants, of which 30 were women, with a mean age of 64.8 years (range 31-84 years). The most frequently expected effect of the yoga was reduced stress, anxiety, and worries (57%). A majority of the participants (84%) reported this effect after 3 and 6 months, described as ways to cope with stress, manage their illness, and reduce anxiety. Fifteen percent of the participants expected improved breathing, and 57% of the participants indeed experienced improved breathing after yoga training. Thirty-five percent of participants expected to have increased flexibility, and 47% indeed experienced that after 3 and 6 months. There was little congruence between expectations and experiences of relief from aches and pain. Most of those expecting relief did not experience it, and several who did not expect relief reported to experience decreased pain. At the 6 month interviews, 3 months after the ending of the tele-yoga intervention, no participant practiced yoga to the same extent as during the intervention. However, the majority stated that they had incorporated yoga techniques, particularly breathing and relaxation, into their daily lives. Conclusions The most prominent experiences of the tele-yoga intervention were improved stress relief, anxiety and worries, and an improved breathing and increased flexibility. Experienced effects were much higher than expected effects.

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.

Abstract 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.

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.

Abstract Background Xerostomia and changes in saliva characteristics are common side-effects in patients with head and neck cancer (HNC) undergoing radiotherapy, which negatively impact their oral health. However, there are no consensus standards for intervention to manage these problems. The aim of this study was to determine the effect of an integrated supportive program on xerostomia and saliva characteristics at a 1-year follow-up of patients with HNC radiated with a low dose to the major salivary glands. Methods The CONSORT guidelines for a randomized controlled trial were used. Participants with a low overall dose to major salivary glands were randomly allocated to an intervention group (n = 47) or a control group (n = 45). The intervention group received usual care and an integrated supportive program, which included three steps: face-to-face education; face-to-face coaching at 1 month post-radiotherapy; and four telephone coaching sessions at 2, 3, 6, and 9 months post-radiotherapy. The face-to-face education consisted of oral hygiene instruction, oral self-care strategies, facial and tongue muscle exercises, and salivary gland massage. Adherence to the intervention was evaluated using a questionnaire completed during the 9 months follow-up. The control group received usual care. The unstimulated saliva flow rate and xerostomia were assessed in both groups. Results A total of 79 participants (40 in the intervention group and 39 in the control group) completed the 12 months follow-up. The intervention group achieved significantly greater relief from xerostomia than the control group after 3 months (intervention group: 35.1 ± 5.9 versus control group: 38.0 ± 5.9, P = 0.027) and 12 months follow-up (intervention group: 18.5 ± 4.1 versus control group: 22.8 ± 4.3, P < 0.001). A higher unstimulated saliva flow rate was observed in the intervention group than the control group at 12 months follow-up (intervention group: 0.16 ± 0.08 versus control group: 0.12 ± 0.07, P = 0.035). Adherence to the intervention was generally good. Conclusion This integrated supportive program with good adherence relieved xerostomia and had a positive effect on unstimulated saliva flow rate among patients with HNC radiated with a low dose to the major salivary glands during the 12 months of follow-up. Trial registration: Chinese Clinical Trial Registry ChiCTR2100051876 (08/10/2021), retrospectively registered.

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.

Background Lipoedema is a chronic disease in adipose tissue that almost exclusively affects women during periods of hormonal alterations. Its main symptoms include an abnormal accumulation of subcutaneous fat in the buttock, hips, and legs, which is associated with pain, swelling, and easy bruising. Herein, a grading in three stages is used to determine disease progression. Problematically, lipoedema manifestations are often confused with lifestyle-induced obesity, which is why the various health problems among affected women often remain unrecognized. Overall, research on lipoedema is scarce. As such, this study examined the health, health-related quality of life (HRQOL), and sense of coherence (SOC) among women with lipoedema. Methods We conducted a national cross-sectional study using an online survey assessing sociodemographic data, lipoedema characteristics, symptom severity, comorbidities, HRQOL (RAND-36), and SOC (SOC-13). In total, 245 women with lipoedema, recruited from all Lipoedema Association groups in Sweden, participated. Data were compiled with descriptive statistics, and mean differences between groups were analysed by using parametric and non-parametric tests. Results Moderate and severe leg heaviness, pain, numbness, cold skin, feeling cold, easy bruising, and sleep problems were found to occur in all lipoedema stages. Moreover, almost all participants reported having comorbidities. Worse physical health and most substantial limitations in daily life were reported among women with the most progressive lipoedema (i.e., stage 3). Social and emotional functioning and SOC were found to be, on the other hand, primarily related to respondents' sociodemographic data and their ages at lipoedema onset. Even though approximately 70% of the women had experienced lipoedema onset before age 30, only three (1.6%) had been diagnosed by a healthcare professional before that age. Conclusion Having lipoedema is associated with several health problems and a lower HRQOL. In addition, the extent of delay in diagnosis within this sample indicates that many women with lipoedema are often underdiagnosed and are left without support from healthcare. These findings call for the need for greater attention on lipoedema. Moreover, further studies on how women with lipoedema manage their health and symptoms, as well as on their experiences of healthcare services and lipoedema treatments, are needed.