Objectives To gather insights on the disease experience of patients with heart failure (HF) with reduced ejection fraction (HFrEF), and assess how patients’ experiences and narratives related to the disease complement data collected through standardised patient-reported outcome measures (PROMs). Also, to explore new ways of evaluating the burden experienced by patients and caregivers. Design Observational, descriptive, multicentre, cross-sectional, mixed-methods study. Setting Secondary care, patient’s homes. Participants Twenty patients with HFrEF (New York Heart Association (NYHA) classification I–III) aged 38–85 years. Measures PROMs EuroQoL 5D-5L (EQ-5D-5L) and Kansas City Cardiomyopathy Questionnaire and patient interview and observation. Results A total of 20 patients with HFrEF participated in the study. The patients’ mean (SD) age was 72.5 (11.4) years, 65% were male and were classified in NYHA functional classes I (n=4), II (n=7) and III (n=9). The study showed a strong impact of HF in the patients’ quality of life (QoL) and disease experience, as revealed by the standardised PROMs (EQ-5D-5L global index=0.64 (0.36); Kansas City Cardiomyopathy Questionnaire total symptom score=71.56 (20.55)) and the in-depth interviews. Patients and caregivers often disagreed describing and evaluating perceived QoL, as patients downplayed their limitations and caregivers overemphasised the poor QoL of the patients. Patients related current QoL to distant life experiences or to critical moments in their disease, such as hospitalisations. Anxiety over the disease progression is apparent in both patients and caregivers, suggesting that caregiver-specific tools should be developed. Conclusions PROMs are an effective way of assessing symptoms over the most recent time period. However, especially in chronic diseases such as HFrEF, PROM scores could be complemented with additional tools to gain a better understanding of the patient’s status. New PROMs designed to evaluate and compare specific points in the life of the patient could be clinically more useful to assess changes in health status.

Background and objectives: Systemic lupus erythematosus (SLE) is an autoimmune condition that can highly impact patients’ quality of life (QoL). However, there is a lack of knowledge about SLE, affecting the general population and health care professionals (HCPs) alike. This lack of knowledge has negative implications for patients and the healthcare system, worsening prognosis, negatively impacting QoL, and increasing healthcare utilization. The aim of this paper is to draw attention, according to the perspective of the participants of this study, to the lack of awareness of SLE and its consequences in Spain, and to suggest improvements. Patients and methods: This qualitative, descriptive, observational, multicenter, and cross-sectional study included 40 patients with moderate or severe SLE, recruited during their routine visits in six university hospitals in Spain. The study also included 11 caregivers and 9 HCPs. All participants were individually interviewed. Data from the interviews were coded and analyzed thematically by two anthropologists following a phenomenological perspective. Results: Our study identified a lack of disease awareness among primary care physicians, emergency medicine doctors, and other specialists treating SLE symptomatology. This led to diagnostic delays, which had a clinical and emotional impact on patients. Furthermore, symptom awareness was found to be context dependent. Differences in symptom awareness between HCPs and patients led to a mismatch between the severity evaluation made by doctors and patients. Some HCPs did not consider the limitations of the current severity evaluation of SLE, and therefore attributed symptoms potentially caused by SLE to the unfavorable socioeconomic conditions patients lived in. Finally, a lack of social awareness among friends, family members, and romantic partners led to lower social support, increased isolation, and negative physical and emotional impact for patients. Gender differences in the provision of support were identified. Conclusion: This study highlights the need to increase SLE awareness among patients, HCPs, and the broader public in order to improve patient QoL. Being aware of the clinical and emotional impact of such lack of awareness, as well as the role played by context on the patient experience of SLE, is a crucial step towards achieving this goal.

Background/Objectives: Evidence of patient experiences with heart failure with preserved ejection fraction (HFpEF) and disease impact on quality of life (QoL) is scarce. This study explored perceived impacts on QoL and healthcare experiences of HFpEF patients and their caregivers. Methods: This was a mixed-methods study with HFpEF patients, ≥40 years, New York Heart Association functional classes I-IV in Spain. Qualitative data were collected through semi-structured interviews with patients (n = 19) and caregivers (n = 17). The EuroQoL 5D-5L, Patient Global Impression of Severity, and Kansas City Cardiomyopathy Questionnaire were used to collect QoL measures. Results: The themes were as follows. (1) Impact of HFpEF on QoL; (2) new roles of informal caregiving; and (3) the increasing value of multidisciplinary care. Qualitative data were supported by a trend of worsening QoL on quantitative measures as HF progressed, despite quantitative measures not fully capturing the burden. Qualitative data further captured discrepancies of QoL perceptions. Conclusions: The impact of HFpEF on patients and their caregivers was similar to the HFrEF population’s. Insights from discrepancies between PROMs data and interviews could help with tailoring QoL questionnaires to capture the broader impact of HFpEF, identify unmet needs, and customize care.

Objectives: Qualitative evidence in ovarian cancer (OC) doctor-patient-caregiver communication is scarce. This study explored the information needs of patients and caregivers, comparing these to healthcare professionals’ (HCPs) perspectives, to uncover why gaps exist. Design: Qualitative, observational, multicentre and cross-sectional study with OC patients, their caregivers and HCPs. Qualitative data were collected through remote semistructured interviews. Themes were identified using thematic analysis. The EORTC QLQ-C30 and the disease-specific EORTC QLQ-OV28 were collected as quality of life measures and analysed descriptively. Setting: Patients were recruited during their routine visits in five university hospitals in Spain. Participants: Patients were ≥18 years of age in stages III or IV according to FIGO classification, were on first line treatment or recurrent and platinum sensitive with the most complex molecular profiles. 19 patients, 7 caregivers and 10 HCPs participated in the study. Results: Three main themes emerged: (a) patient information needs about the disease and pharmacological treatments, (b) patient information needs about non-pharmacological support and (c) caregiver information needs. The first theme was viewed through three differing attitudes (the Involved, Trusting and Indecisive), with HCPs’ agreeing with the attitudes but without adjusting transmitted information accordingly. For the second theme, patients expressly desired more information on psychosexual issues, psychological support and patient associations (PAs), and HCPs concurred with a need for more non-pharmacological support. Regarding the third theme, caregivers expressed not being engaged by HCPs, despite HCPs recognising their importance, with nurses being more empathetic than oncologists on this matter. Conclusions: These results highlight the importance of understanding the information needs of OC patients and their caregivers. This understanding enables HCPs to provide better support, helping patients and caregivers make more informed health decisions.

Qualitative evidence on how patients with human epidermal growth factor receptor 2 metastatic breast cancer (HER2 + MBC) and healthcare professionals (HCPs) understand the concepts of "chronicity" and "palliative" terms is scarce. This study explored the meanings and perceptions of chronic disease and metastatic treatments. qualitative, observational, multicenter and cross-sectional study with HER2 + MBC patients. Qualitative data collected through remote semi-structured interviews with patients (n = 14) and HCPs (n = 10). Themes were identified using a phenomenological approach. Regarding the views and preferences of the term chronic in relation to HER2 + MBC, four different perspectives emerged: 1) the realistic, 2) the optimistic, 3) the critical, and 4) the episodic. For HCPs, there were two differing points of view: 1) advocates for the presentation of HER2 + MBC as chronic, and 2) against presenting the disease as chronic. Regarding the views and impacts of metastatic treatments, it was found that there was miscommunication on the use of the term palliative, leading patients to understand their condition at end of life, and not curative as all oncologists and half of the nurses intended. Results emphasize the need for a shared understanding of the meaning of chronic disease and palliative treatment for effective patient-doctor communication. To optimize communication, it is essential to understand patients' perspective of chronic diseases, preferences in terminology uses, and the impact throughout patients' journeys. "chronicity" and "palliative" in treatment options explanation and medical follow-up should be used more effectively by HCPs. This will be achieved if patients' needs are placed at the center, to adapt to different patient profiles and expectations.

Patients’ quality of life is a key consideration of chronic kidney disease care. Nonetheless, qualitative research on patients’ experience, quality of life, and frequent associated comorbidities remains limited. This study identifies aspects of the disease experience, healthcare journey, and caregiver experience contributing to quality of life for early-stage (stage 3 CKD) and advanced chronic kidney disease (stages 4–5) patients and their caregivers. In this cross-sectional, observational, multicenter study based on qualitative methodology, participants completed a general (Short Form-36) and disease-specific (Kidney Disease Quality of Life Short Form−36) quality of life assessment and semi-structured interviews. Quota and convenience sampling were used to enroll 36 patients selected by clinicians based on chronic kidney disease stage and the presence of key comorbidities (heart failure, hyperkalemia). Twelve caregivers were also invited to participate in patient interviews. All data were examined thematically. Three themes emerged: (1) Impact of chronic kidney disease on quality of life throughout the patient journey (physical, social, and emotional); (2) attitudes toward the disease (characterized by ‘acceptance’ or ‘powerlessness’); and (3) caregivers’ role and burden. Patients’ characteristics and caregiver support must be considered for designing medical interventions and improvement of patient-doctor communication. Family caregivers are pillars clinicians should rely on to raise awareness about chronic kidney disease’s relevance among patients and families.