Search Results (90)

Background and Objectives: Specialized nurses play an essential role in managing pulmonary fibrosis. While tele-nursing has the potential to optimize disease management, current evidence regarding its impact remains limited. This study aimed to evaluate a tele-nursing intervention that provided unscheduled access to a specialized nurse via phone or email for both patients and caregivers. Materials and Methods: This was a prospective, single-center, open-label, and pre–post pilot study. Participants and their caregivers were provided with direct access to a specialized nurse, by phone and email, for unscheduled consultations. Patient-reported experience measures (PREMs) and patient-reported outcome measures (PROMs) were collected at baseline and after three months of tele-nursing access. PREMs were assessed using a 10-point Likert scale questionnaire, and PROMs were evaluated using the King’s Brief Interstitial Lung Disease (K-BILD) and the Living with Pulmonary Fibrosis (L-PF) questionnaires. Results: A total of 47 patients with pulmonary fibrosis receiving antifibrotic drugs were enrolled. At three months, 44 patients and 34 caregivers completed the questionnaires. Four patients did not complete the study due to death, lung transplantation, or transition to end-of-life care. No significant changes were observed in PROMs. However, PREMs showed significant improvements, with most scores exceeding 9/10. Patient satisfaction increased by 28% (p < 0.001), and caregiver satisfaction by 30% (p < 0.001). Caregivers of patients who did not complete the study also reported high satisfaction, comparable to that of other caregivers. Conclusions: A pragmatic and affordable tele-nursing program, based on direct phone and email consultations, may enhance patient and caregiver satisfaction in the management of pulmonary fibrosis. Full article

Sicca syndrome is a common condition that draws the attention of rheumatologists, and is frequently related to Sjögren’s disease (SjD). This study analyzed 164 patients with sicca syndrome (clinically suspected for SjD) who underwent minor salivary gland biopsy (mSGB). Patients completed the Xerostomia Inventory (XI) and Standard Patient Evaluation of Eye Dryness (SPEED) questionnaires to assess Patient-Reported Outcome Measures (PROMs), and biopsies were graded using the Chisholm and Mason system. Patients were classified as seropositive (SSA, SSB, Ro52, Ro60 positive) or seronegative, and also divided into three groups by age. Positive biopsies (60.37%) were more common in older patients (61–80) and associated with confirmed SjD, more severe xerostomia, and stronger lymphocytic infiltrates. Among these, 37.37% were seropositive, showing higher disease activity, hypergammaglobulinemia, and elevated IgG. Seronegative patients had a heavier symptom burden, confirmed by the PROMs, and more fibrosis and fatty replacement in biopsies. Age-stratified analysis showed younger patients (18–40) were more affected by ocular dryness, while older patients had worse xerostomia and more severe histological and ultrasound changes. Younger individuals had higher IgG/IgA, more anemia, and reduced C3. Hydroxychloroquine was used more in younger and seropositive groups; older patients used more topical therapies. These results highlight mSGB’s diagnostic value, especially in seronegative cases, and stress the importance of combining clinical, histological, imaging, and patient-reported outcomes for optimal care. Full article

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. Full article

Background: Arthrodesis of the first metatarsophalangeal joint (MTP1) is a common intervention for hallux rigidus (HR). The procedure eliminates MTP1 motion but results in significant pain relief and high satisfaction rates, although MTP1 is eliminated. Less evidence is available regarding the effects on gait and the presence of compensatory mechanisms. The aim of this study is to investigate the effects of MTP1 arthrodesis on gait and patient-reported outcome measures (PROMs) compared with preoperative functioning and healthy individuals. Methods: In this prospective study, 10 patients (10 feet) with HR who underwent MTP1 arthrodesis were evaluated before and after surgery and compared with 15 healthy controls (30 feet). Gait analysis was performed with a motion capturing system using the multi-segment Oxford foot model. Spatiotemporal parameters and kinematics were quantitatively analyzed. PROMs were evaluated using validated questionnaires including the American Orthopedic Foot and Ankle Society Hallux Metatarsophalangeal-Interphalangeal (AOFAS-HMI) scale, the Numeric Pain Rating Scale (NPRS), and the Manchester–Oxford Foot Questionnaire (MOXFQ). Results: MTP1 joint motion was reduced in HR and further reduced after MTP1 arthrodesis compared with healthy controls. Furthermore, intersegmental ROM analysis revealed increased forefoot frontal plane motion (pronation and supination) in HR compared with healthy controls. This was also observed after MTP1 arthrodesis, while additionally increased frontal plane motion in the hindfoot (inversion and eversion) was observed compared with HR and healthy controls. PROM evaluation revealed improved AOFAS-HMI (from 55.7 to 79.1 points, p = 0.002) and NPRS (from 5.7 to 1.5 points, p = 0.004) scores after surgery. Additionally, improvements in the MOXFQ score (from 51.0 to 20.0 points, p = 0.002) were observed. Conclusions: Due to the loss of sagittal hallux motion, foot and ankle kinematics are changed in HR patients and after MTP1 arthrodesis compared with healthy controls. Loss of MTP1 motion results in increased frontal plane motion of the forefoot in HR, and increased frontal plane motion of the fore- and hindfoot after MTP1 arthrodesis. Additionally, substantial improvements in PROMs were recorded after surgery. Full article

Background: Quality of life (QoL) is a critical indicator in assessing the success of oncological treatments for head and neck malignancies, reflecting their impact on physiological functions and psychosocial well-being beyond mere survival. Treatments (surgery, radiotherapy, chemotherapy) pose multiple functional and emotional challenges, and recent advancements underscore the necessity of evaluating post-treatment QoL. Objective: This literature review investigates the impact of oncological treatment on the QoL of patients with malignant head and neck cancers (oral, oropharyngeal, hypopharyngeal, laryngeal) and identifies factors influencing their QoL index. Methodology: Using a PICO framework, studies from PubMed Central were analyzed, selected based on inclusion (English publications, full text, PROM results) and exclusion criteria. The last research was conducted on 6 April 2025. From 231 identified studies, 49 were included after applying filters (MeSH: “Quality of Life,” “laryngeal cancer,” “oral cavity cancer,” etc.). Data were organized in Excel, and the methodology adhered to PRISMA standards. Results: Treatment Impact: Oncological treatments significantly affect QoL, with acute post-treatment declines in functions such as speech, swallowing, and emotional well-being (anxiety, depression). Partial recovery depends on rehabilitative interventions. Influencing Factors: Treatment type, disease stage, socioeconomic, and demographic contexts influence QoL. De-escalated treatments and prompt rehabilitation improve recovery, while complications like trismus, dysphagia, or persistent hearing issues reduce long-term QoL. Assessment Tools: Standardized PROM questionnaires (EORTC QLQ-C30, QLQ-H&N35, MDADI, HADS) highlighted QoL variations. Studies from Europe, North America, and Asia indicate regional differences in outcomes. Limitations: Retrospective designs, small sample sizes, and PROM variability limit generalizability. Multicentric studies with extended follow-up are recommended. Conclusions: Oncological treatments for head and neck malignancies have a complex impact on QoL, necessitating personalized and multidisciplinary strategies. De-escalated therapies, early rehabilitation, and continuous monitoring are essential for optimizing functional and psychosocial outcomes. Methodological gaps highlight the need for standardized research. Full article

Background: Patient-reported outcome measures (PROMs) are essential for capturing the lived experiences of individuals managing chronic diseases. However, few PROMs have been culturally adapted and validated for Arabic-speaking populations. Aim: This study aimed to translate, culturally adapt, and validate the Long-Term Conditions Questionnaire (LTCQ) for use among Arabic-speaking adults living with chronic diseases in Jordan. Methods: Following forward–backward translation and an expert review, a cross-sectional survey of 1057 adults with chronic illnesses was conducted. The psychometric evaluation involved exploratory and confirmatory factor analyses (EFA and CFA) and Rasch modelling. While the original LTCQ assumed a unidimensional structure, EFA and CFA supported a two-factor solution: Empowerment and Functional Wellbeing, and Health-Related Psychosocial Distress. Results: The Rasch analysis confirmed that the item response thresholds were ordered, with good item targeting, and no differential item functioning (DIF) by gender. The removal of one poorly performing item resulted in a refined 19-item scale with strong reliability and validity. Conclusions: The Arabic LTCQ demonstrated robust psychometric properties and cultural relevance, supporting its use in clinical care, research, and policy initiatives. Future work should examine longitudinal responsiveness and further validate the tool across diverse Arabic-speaking populations. Full article

Background: Triangular fibrocartilage complex (TFCC) tears are a common source of ulnar-sided wrist pain. Surgery has to be performed in case of instability, pain, or if non-operative treatment fails. Overall, the results are very good. However, some patients still suffer from pain after surgery. Post-operative MR imaging can reveal potential pathologies but it needs to be assessed whether depicted changes are normal or whether these findings have a clinical significance. Therefore, the purpose of this study was to evaluate postoperative MR imaging and the function of the patients’ wrists in order to assess which postoperative changes are correlated with pain. Patients and Methods: All patients with a TFCC lesion who were treated arthroscopically at our hospital between January 2012 and December 2016 were retrospectively enrolled. Seventeen patients with complete data sets were enrolled. Post-operative MRI examinations needed to be performed within 24 months after arthroscopy. The mean magnet resonance imaging (MRI) follow-up was 22 months. The average clinical follow-up was 27.3 months. Age, gender, pain level, PROM scores (Munich Wrist Questionnaire, MWQ), follow-up interval, and TFCC classification (Palmer) were documented. The patients underwent a clinical examination and MR imaging. Results: Ten patients (59%) had scar tissue at the triangular fibrocartilaginous complex (TFCC) and nine (53%) had an effusion in the ulnar recess. These findings were not necessarily associated with pain, as six patients without pain and four with pain had scar tissue at the TFCC and six patients without pain and three with pain showed an effusion in the ulnar recessus. Bone marrow edema could be found in the lunate of five patients (29%) (three with pain, two without pain) and in the distal radial ulnar joint (DRUJ) of one patient (6%) with pain. However, typical degenerative changes were not necessarily associated with pain. Conclusions: This present study is the first study correlating postoperative MRI findings after arthroscopic assisted TFCC surgery with both pain and function. Bone edema seems to be associated with pain, whereas scarring at the TFCC is visible on MRI but is not necessarily associated with pain. Full article

Background: While many patients report that their symptoms are influenced by weather conditions prior to their knee arthroplasty (TKA), how weather-related pain (WRP) evolves following surgery remains poorly understood. This study investigated the prevalence of WRP prior to and after TKA, assessed whether TKA resolves preoperative WRP, evaluated the incidence of new-onset WRP postoperatively, and identified associated risk factors. Methods: We prospectively surveyed 87 patients (121 TKAs) at a mean follow-up of 9 years (range: 1–26 years). Patients completed a standardized questionnaire assessing WRP before and after surgery, along with patient-reported outcome measures (WOMAC, UCLA activity score, and SF-12). Statistical analysis was performed to assess the associations between WRP and clinical or demographic variables, as well as patient-reported outcome measures (PROMs) in patients with and without WRP. Results: Preoperatively, 31% of patients (37/121 knees) reported WRP. Following TKA, WRP resolved in 48% of these cases (18/37 knees), persisted in 16% (19/121 knees), and developed de novo in 16% of patients (20 knees). Postoperative WRP was significantly associated with the presence of WRP in other joints (p < 0.0001), and with female sex (p < 0.0008). Preoperatively, patients with WRP had worse WOMAC scores for pain (p = 0.046), stiffness (p = 0.012), and physical function (p = 0.024). Despite these differences, all groups demonstrated significant improvement in PROMs postoperatively, with no differences between groups at final follow-up (p > 0.125). Conclusions: TKA leads to the resolution of WRP in nearly half of affected patients; however, a subset develops new or persistent WRP. Female sex, and multi-joint involvement are associated with WRP after TKA. These findings underscore the importance of preoperative counseling regarding expectations for pain relief, particularly in relation to weather sensitivity. Full article

Background/Objectives: Our aim was to validate a self-reported patient-reported outcome measure (PROM) questionnaire for use by patients undergoing feminising genital reconstructive surgery (fGRS). Methods: We used the Patient Reported Outcomes in Genital REconstructive SurgerieS (PROGRESS) questionnaire to examine key domains: urinary function, sexual function, cosmetic appearance, bowel function, and general health and wellbeing, which were identified as key components by our experienced surgeons. A reduction in score post-operatively represented an improvement in symptoms. Internal consistency was performed to determine the reliability of the questionnaire. Results: Between 2014 and 2024, 117 patients had completed pre- and post-operative questionnaires by week 52. The overall median score for all domains was 0.37 (interquartile range [IQR] 0.32–0.44) at baseline. At week 52 post-surgery, it was 0.24 (IQR 0.16–0.32), with a median difference (% change in overall score) of −0.12 (−35.8%) (p < 0.001). In all domains apart from bowel function, there was a reduction in scores that achieved statistical significance. There were high Cronbach’s alpha scores at baseline and at week 52 for four out of the five domains: general health and wellbeing a = 0.71 at week 0 and a = 0.79 at week 52; sexual function a = 0.83 at week 0 and a = 0.88 at week 52; cosmetic function a = 0.64 at week 0 and a = 0.84 at week 52; urinary function a = 0.74 at week 0 and a = 0.83 at week 52. Bowel function scored poorly, with a = 0.44 at week 0 and a = 0.49 at week 52. Conclusions: The questionnaire is suitable for use in clinical practice as a standardised way to assess functional outcomes following fGRS. Full article

Background/Objectives: Patient-reported outcome measures (PROMs) and clinician-reported outcome measures (CROMs) are used in orthopaedic rehabilitation to evaluate patients’ health status and recovery. However, controversy still exists regarding their relevance and validity. This evaluation was conducted to assess the effectiveness and role of PROMs and CROMs in the orthopaedic rehabilitation outcome of patients who have undergone either total knee arthroplasty or hip arthroplasty. Methods: Outcome measures of 409 patients (68.3 ± 9.3 years; 34.2% male) with total knee arthroplasty and 308 patients (68.1 ± 10.6 years; 36.3% male) with total hip arthroplasty (control group) were assessed at baseline and after 21 days of inpatient rehabilitation. Effect sizes and correlations were analysed as they related to the use of PROMs and CROMs. To reduce statistical distortions caused by ceiling effects, we used a performance score (T2D) relying on two scores taken at the beginning and end of rehabilitation. Results: Large effect sizes (d > 0.97) for CROMs and medium effect sizes (d ≥ 0.65) for PROMs were observed in both groups. The standardised mean difference across all outcomes was 0.83 ± 0.59. PROMs worsened in 13.1% of all patients, while almost no patients showed a deterioration in CROMs. Correlations were highest between the Timed Up and Go and the Health Assessment Questionnaire scores (ρ > 0.45). Conclusions: Different and complementary assessment modalities of PROMs and CROMs serve as valuable clinical tools, providing a valid basis for interpreting patients’ health outcomes. Full article

Background: The Music-Related Quality of Life (MuRQoL) was launched in 2017 as a valid psychometric measure of Cochlear Implant (CI) users’ music experience and its impact on Quality of Life (QoL). This scoping review aimed to explore the implementation and effectiveness of the instrument since its introduction. Methods: PubMed and Google Scholar databases were searched for publications written in English reporting a translation, validation or application of the MuRQoL. Results: Eleven publications were found, including three validated versions and eight studies that applied the MuRQoL in Italy, Turkey, Spain and the US in research and clinical settings for various purposes. The review showcases the reliability, validity and potential clinical utility of the tool underscoring its growing adoption and integration with other assessment tools. Based on the findings, we make recommendations and provide a roadmap for optimizing the use of MuRQoL globally, including naming and terminology conventions. Anecdotal evidence, such as forthcoming or non-English publications offer further insights into the tool’s future potential. Conclusions: The MuRQoL is currently available in four languages and applicable across diverse cultural contexts, populations and settings. It is a versatile, patient-centered tool providing a deep understanding of CI users’ music experiences. As research and validation efforts continue, the instrument has the potential to set a benchmark for assessing the broader impacts of CIs beyond speech perception, emphasizing the significance of music in enriching the lives of individuals with Hearing Loss (HL). Full article

Background/Objectives: The multifactorial nature of immune-mediated inflammatory diseases (IMIDs) requires integrating pathophysiological understanding with subjective patient experiences. Patient-reported outcome measures (PROMs) are a useful tool for incorporating this in routine clinical practice. However, current PROMs do not fully encompass the complete subjective health experiences (SHE) of patients and are thus insufficient for guiding truly personalised care. The SHE model provides insights into SHE through the determinants of disease acceptance and perceived control. While validated across various demographics, its predictive power in IMIDs cohorts remains unexplored. This study aims to assess whether acceptance and perceived control in the SHE model predict health experiences in patients with IMID and how these immunological conditions compare. Methods: Questionnaires regarding health perception, acceptance, control, and subjective health experiences were distributed to 450 Dutch citizens. Descriptive statistics, reliability checks, and partial least squares structural equation modelling were used to examine relationships between variables. Results: Health perception strongly predicts SHE through acceptance and control. Across all conditions, the pathway moves from health perception to control, then to acceptance, and finally to SHE. However, the roles of acceptance and control differ by condition. In burdensome diseases like inflammatory bowel disease and rheumatoid arthritis, acceptance plays a greater role, while control has a stronger influence in conditions like psoriasis. Conclusions: This study supports the predictive validity of the SHE model for IMIDs, showing that disease acceptance and control affect health experiences differently across conditions. These insights improve the understanding of psychological factors in health experiences and call for tailored interventions for patients with IMID. Full article

Background: Angioedema (AE) is a localized, non-pitting swelling affecting subcutaneous and/or submucosal tissues. Despite varying underlying mechanisms, AE significantly impacts patients’ quality of life (QoL), which is closely linked to disease activity and control. Objectives: This study aimed to translate and linguistically validate the angioedema activity score (AAS), angioedema control test (AECT), and angioedema quality of life (AE-QoL) questionnaires into Latvian, and to use these validated tools to assess disease activity, control, and quality of life within the study population. Methods: PROMs, including the AECT, AAS, and AE-QoL, underwent a standardized linguistic validation process. Patients with hereditary angioedema (HAE), mast cell-mediated angioedema (AE-MC), and angioedema of unknown origin (AE-UNK) were recruited from two separate studies conducted at Riga Stradiņš University. Results: We enrolled 41 participants (90.2% women) with a mean age of 46.3 years. AE-MC was the most common (63.4%), followed by HAE (19.5%) and AE-UNK (17.1%). The mean AAS score was 15.8, with no significant differences regarding AE type, gender, or age. The mean AECT score was 8.29, revealing significant gender differences (women: 7, men: 13.5). The AE-QoL total score was 45.5, with significant gender differences in most domains. Strong correlations were found between AE-QoL scores and both AAS and AECT, highlighting the impact of both disease activity and control on QoL. Conclusions: The Latvian adaptation of the AAS, AECT, and AE-QoL questionnaires effectively assesses AE activity, control, and disease-related QoL. Our study reveals poor disease control, underscoring the need for tailored interventions and regular PROM evaluations, with the Latvian version of the AE-QoL questionnaire identifying five distinct domains compared to four in the original version. Full article

Background/Objectives: Chronic rhinosinusitis with nasal polyps (CRSwNP) represents a debilitating disease with significant morbidity and decreased quality of life (QoL). The introduction of biologics in its management has allowed new therapeutic options, and Dupilumab represents the first approved biologic. This study aims to evaluate a possible relationship between the clinical response to biological therapy and mental health in patients with severe CRSwNP. Methods: This is a multicenter study conducted at the Otolaryngology departments of three major Italian health institutions. Participants were patients with CRSwNP treated with Dupilumab. Patients were assessed at baseline and during treatment by submitting them to a survey consisting of a dedicated questionnaire focused on psychological health and two patient-reported outcome measures (PROMs): the 22-item Sino-Nasal Outcome Test (SNOT-22) and a Visual Analogue Scale (VAS) for nasal symptoms. Results: 86 patients were included in the study (58 males and 28 females; mean age: 58.2 years). There was a significant improvement in both symptoms and QoL, with an enhanced psychological state observed in patients after the first administration and within the first months of therapy. Conclusions: This study evaluated the possible correlations between Dupilumab treatment and improvements in mental health in patients with CRSwNP, as assessed through a survey, and clinical conditions, assessed through SNOT-22 and VAS. Our findings showed that Dupilumab not only improved clinical symptoms but also had a positive impact on patients’ mental health, with benefits observed already after the first administration and the first months of therapy. This survey highlights the relevance of psychological well-being and its implications for patients with chronic diseases such as CRSwNP. Full article

Machine learning is an evolving branch of artificial intelligence that is being applied in neurosurgical research. In spine surgery, machine learning has been used for radiographic characterization of cranial and spinal pathology and in predicting postoperative outcomes such as complications, functional recovery, and pain relief. A relevant application is the investigation of patient-reported outcome measures (PROMs) after spine surgery. Although a multitude of PROMs have been described and validated, there is currently no consensus regarding which questionnaires should be utilized. Additionally, studies have reported varying degrees of accuracy in predicting patient outcomes based on questionnaire responses. PROMs currently lack standardization, which renders them difficult to compare across studies. The purpose of this manuscript is to identify applications of machine learning to predict PROMs after spine surgery. Full article