Cleft-related Patient Reported Outcome Measure (PROM) results were formatted into graphical displays for children scoring below the 25th percentile on one or more scales. Reports were piloted in a multidisciplinary clinic where providers reviewed them, and their impact was qualitatively recorded. Graphical PROM reports informed discussions, led to treatment plan changes, and raised awareness of unmet psychosocial needs. Because of the success of this quality improvement pilot, visual PROM reports will become a regular part of our multidisciplinary cleft care. More broadly, graphical PROM data display facilitates better understanding of the patient\'s perspective and leads to more informed visits.

Craving is considered one of the defining characteristics for alcohol or substance use disorders. There is no consensus on the underlying processes of craving, although multiple models exist. Craving is a very individualistic symptom and has to be self-reported. Several instruments have been developed to measure craving, without a recognized gold standard. The patient\'s perspective appears critical to determine the relevance of the numerous existing tools. We assessed the contribution of patients to the development of these instruments. We performed a systematic review of instruments measuring alcohol craving published from 2012 to 2023 from three databases (PubMed, PsycInfo, and Embase) in addition to those identified in a previous review by Kavanagh et al. from 1990 to 2012. We included all articles related to the development or validation of instruments for the assessment of alcohol craving. We identified and included in this review the corresponding instruments. Articles translating existing instruments without validation or on single-item instruments were excluded. We analyzed the articles in accordance with COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) recommendations to assess patient involvement in the creation of patient-reported outcome measures (PROM). Two key aspects were investigated: (1) the general design, encompassing the quality of construct description, identification of elements pertinent to a PROM, particularly the inclusion of concepts provided by patients, and (2) the quality of cognitive interviews (when conducted), to evaluate the comprehensiveness and comprehensibility of the PROM. We included 22 articles identifying 16 instruments for measuring alcohol craving. Patients only contributed to item development for one instrument and its short version (QAU and AUQ). None of the instruments met all of the developmental quality criteria, with 14 classed as \"inadequate\" and two as \"doubtful.\" The current instruments measuring alcohol craving were developed with poor patient contribution, although most articles did not adequately report patient involvement. Patients\' perspectives on craving should be explored for future patient-centered approach.

BACKGROUND: Minimally invasive cardiac surgery (MICS) has garnered significant attention for its potential benefits, including decreased surgical trauma, accelerated recovery, and improved aesthetic outcomes. This case series aims to elucidate the technical aspects and assess the aesthetic, functional, and quality of life outcomes associated with the utilization of a periareolar incision approach in female patients undergoing cardiac surgery.
METHODS: The periareolar MICS technique, performed with or without high-definition (HD) 3D endoscopic visualization, limited rib-spreading, and a periareolar incision spanning the 3 to 9 o\'clock positions, was employed. We present a case series encompassing five female patients who underwent various cardiac procedures for different pathologies using this approach.
RESULTS: No intraoperative complications occurred, and all patients experienced uneventful postoperative recoveries. The periareolar approach resulted in well-healed incisions with minimal scaring, preserving breast contour and yielding satisfactory cosmetic outcomes. Patients reported negligible pain levels and expressed contentment with the scar appearance.
CONCLUSIONS: The periareolar incision technique in MICS represents an efficacious approach characterized by favorable aesthetic outcomes and enhanced patient experience. Further investigations are warranted to compare different MICS approaches with respect to pain management and their impact on quality-of-life domains.

BACKGROUND: Despite the significant impact of oral problems on the quality of life of palliative care patients, comprehensive studies are lacking. This study is the first of its kind to address this gap by including both a dental examination and an intervention and assessing quality of life using the EORTC QLQ OH 15 questionnaire.
OBJECTIVE: The objective of this study is to explore the impact of incorporating dentists into inpatient palliative care, with a focus on enhancing quality of life and alleviating symptom burden.
METHODS: In this monocentric study, data were gathered from a palliative care unit over an 8-month period. At the beginning of the multidisciplinary treatment, T0, patients underwent both a dental examination and interviews utilizing established questionnaires, the EORTC QLQ-C30 (core, general) and OH 15 (oral health). A week later, at T1, patients underwent a follow-up examination and interview. The QLQ-C30 and OH15 are widely recognized instruments developed by the European Organisation for Research and Treatment of Cancer (EORTC) for evaluating health related quality of life in cancer patients.
RESULTS: A total of n = 103 patients (48.5% women) were enrolled in the study. The median duration since their last dental visit was 1 year, and the dental condition at T0 was desolate. At T1, statistically and clinically significant changes in oral quality of life and symptom burden were observed. Noteworthy changes were noted in the OH-QoL score (median 63 vs. 92, p < 0.001), sticky saliva (median 33 vs. 0, p < 0.001), sensitivity to food and drink (median 33 vs. 0, p < 0.001), sore mouth (median 33 vs. 0, p > 0.001), and poorly fitting dentures (median 33 vs. 0 p < 0.001). Additionally, improvements were observed in xerostomia candidiasis and mucositis.
CONCLUSIONS: The study highlights the powerful contribution of integrating a dentist in inpatient palliative care. With very little dental effort and simple ward and bedside treatments, significant improvements in the oral symptom burden of critically ill palliative patients can be achieved. This contributes to improved care status, relief of distressing symptoms, and ultimately improved quality of life. The results strongly support the consideration of dental support as an integral part of palliative care units.

UNASSIGNED: To determine the functional domains and symptom scales that affect patients most following radical cystectomy (RC) and urinary diversion (UD), and if a single instrument (or combination) adequately captures these bothersome symptoms. It is unclear whether current patient reported outcome (PRO) instruments that have been used to assess quality of life in patients following RC and UD adequately cover the most bothersome symptoms affecting patients.
UNASSIGNED: A systematic search of MEDLINE, EMBASE, PubMed, Cinahl and Cochrane was conducted from January 2000 to May 2023 for original articles of patients who had RC and UD since 2000 for muscle invasive bladder cancer. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) process was followed. Extracted data included the PRO measures used, domains reported and scores in the first 12 months post-surgery (short-term) and after 12 months (long-term). A conservative threshold of <70 for functional domains and >30 for symptom domains was used to determine which PRO domains were potentially concerning to patients in each study. Quality assessment was performed using the QUALSYST appraisal tool.
UNASSIGNED: Thirty-five studies met the inclusion criteria, including a total of eight unique PRO instruments. The main findings indicated that physical function was the most concerning PRO for patients with both neobladder (NB) and ileal conduit (IC) in the short and long term. Additionally, bowel, urinary and sexual bother were concerning symptoms for patients with NB in the long-term, but only in the short-term for those with IC.
UNASSIGNED: The main issues are adequately addressed using the combination of EORTC QLQ-C30 and QLQ-BLM30 instruments.

BACKGROUND: Transition of care from hospitalisation to home is a complex process with potential patient safety risks, especially for patients with multimorbidity. Traditionally, the quality of transition of care has been evaluated primarily through readmission rates. However, interpreting the readmission rates presents challenges, and readmission rates fail to capture the patient\'s perspective on the quality of the care transition. Insight into the patient\'s experience with their care or a health service can be provided through the use of patient-reported experience measures (PREMs), and the two PREMs Care Transitions Measure 15 (CTM-15) and Partners at Care Transitions Measure part 1 and 2 (PACT-M1 and PACT-M2) assess on the quality of transition of care from the patients\' perspective. The aim of this study was to translate, culturally adapt, and assess content validity of CTM-15, PACT-M1, and PACT-M2 for Danish-speaking patients with multimorbidity.
METHODS: A two-step approach was used for content validation, involving cognitive debriefing and interviews with patients, representing the target group, as well as quantitative data collection from healthcare professionals representing all three sectors of the Danish healthcare system. The patients were systematically interviewed regarding the aspects of content validity; comprehensibility, relevance, and comprehensiveness. The healthcare professionals assessed the relevance and comprehensiveness of each item through questionnaires, allowing the calculation of a content validity index (CVI). An item CVI ≥ 0.78 is considered good.
RESULTS: The results of the qualitative data indicated that both CTM-15 and the PACT-M questionnaires were considered relevant, and comprehensible, and comprehensive to the target group. The CVI computed at item level determined that PACT-M1 and PACT-M2 demonstrated excellent content validity among the healthcare professionals, whereas the CVI for two items of the CTM-15 fell below the threshold value for \"good\".
CONCLUSIONS: The Danish versions of the PACT-M questionnaires demonstrated good content validity, and the CTM-15 demonstrated acceptable content validity based on qualitative data from patients and quantitative data from healthcare professionals. Further validation of the questionnaires, by assessing their construct validity and reliability is recommended.
In this study, we aimed to translate two questionnaires, CTM-15 and PACT-M, that address patients’ perspectives on the quality of transition of care, into Danish. Furthermore, we assessed their content validity i.e., their relevance, comprehensibility, and comprehensiveness. The study is important because we need to include the patients’ experiences in the overall evaluation of transition of care from hospital admission to home. This is possible through validated questionnaires. In order to investigate the content validity, it is important to include representatives of the target group, in this study patients with multimorbidity, as well as professional experts in the area. We interviewed patients about their perception of the relevance, comprehensibility, and comprehensiveness of the questionnaires. Additionally, we asked healthcare professionals about the relevance and comprehensiveness of the questionnaires. PACT-M demonstrated good content validity according to both patients and healthcare professionals. CTM-15 showed good content validity among patients, however, two items were not considered relevant by healthcare professionals. To ensure the usability of the questionnaires, further investigation into their construct validity, reliability, and responsiveness is necessary. Upon completion of the validation process, the questionnaires will be valuable tools in research projects aiming to improve the transition of care, as well as in quality monitoring and improvement initiatives.

UNASSIGNED: Over the years approach to COPD has changed. The focus of evaluation is shifting from physiological outcome parameters to patient centered outcomes. COPD-RF is one such patient related outcome that is of considerable importance to the patients as fatigue is the second common distressing symptom in COPD & is a major concern for the patients. COPD-RF is not only a reflection of airflow limitation severity but also a result of psychological, behavioral, and physical factors. Therefore, identification of markers which determine COPD RF is essential to improve patient management. This study aims to identify the predictors of COPD Related fatigue (COPD-RF) and its correlation with other outcome tools like FEV1, 6-minute walk distance (6MWD), MMRC grade, BODE index & inflammatory markers.
UNASSIGNED: 50 stable COPD patients were taken in the study. MMRC grade, FEV1, 6MWD, BODE index, CRP level and sputum neutrophil % obtained. COPD-RF was assessed using 13 item (FACIT-fatigue) questionnaire. The correlation analysis was done by spearman rank correlation and ANOVA. Predictors of COPD-RF were identified by multiple linear regression.
UNASSIGNED: Mean age of the population was 56.53 ± 9.29. All GOLD category of severity was equally represented in the study group. The fatigue score showed significant correlation with inflammatory markers (CRP-r=-0.675; neutrophil%- r=-0.485) & 6MWD (r=-.428). Categorical variables (MMRC, FEV1 GOLD stages & BODE quartiles) also showed significant difference of fatigue among categories. BODE index & serum CRP were identified as the statistically significant predictors of fatigue, suggesting COPD-RF could reflect severity of underlying pathophysiologic process i.e. systemic inflammation.
UNASSIGNED: BODE index and CRP levels are the two important surrogate markers that predicts COPR-RF implying a role of systemic inflammation in the pathogenesis of fatigue. Also, COPD-RF could be an indicator of long-term prognosis of the disease & should be routinely evaluated during COPD assessment.

OBJECTIVE: The Pediatric Liver Transplant Quality of Life (PeLTQL) questionnaire is a disease-specific patient reported outcome measure for pediatric liver transplant (LT) recipients. To-date, threshold values above which a change in PeLTQL score is considered meaningful to patients are unavailable. This study proposes the first values for the minimally clinically important difference (MCID) for the PeLTQL.
METHODS: In this retrospective cohort study, anchor and distribution-based methods were used to estimate the MCID for the PeLTQL. Questionnaires completed between March 2013, and July 2022 were included if data from two sequential visits were available. An internal anchor question was used for anchor-based determination of the MCID. A final MCID estimate was ascertained from triangulation of all methods.
RESULTS: PeLTQL data from 65 LT recipients (26 [40%] male, 17 [42%] biliary atresia, median age at LT 3.08 years [interquartile range 0.99-7.30]), and their caregivers were included for analysis. Median patient age at time of baseline PeLTQL completion was 13.84 (10.90-15.86) years. The MCID for self-PeLTQL total scores ranged from 4.53 to 8.46, and from 4.47 to 8.85 for proxy responses. By triangulation, the MCID of the PeLTQL total score was 6.45 and 6.78 for self and proxy responses respectively.
CONCLUSIONS: A change in PeLTQL score of 6.5 or more points suggests a change in health status that is meaningful to the patient, providing the clinical team an opportunity to engage the patient\'s voice in reassessing current health status and management strategies.

Loss of ambulation is common and highly variable in Parkinson\'s disease (PD), and poorly understood from the perspectives of those with PD. Gaining insights to the anticipated perceived trajectories and their drivers, will facilitate patient-centered care. Latent class growth analysis, a person-centered mixture modelling approach, was applied to 16,863 people with PD stratified by early (N = 8612; < 3 years), mid (N = 6181; 3-10 years) and later (N = 2070; > 10 years) disease to discern clusters with similar longitudinal patterns of self-reported walking difficulty, measured by EuroQoL 5D-5L that is validated for use in PD. There were four clusters in early and mid-disease strata, with a fifth identified in later disease. Trajectories ranged from none to moderate walking difficulty, with small clusters with severe problems. The percentage of subjects with moderate (early = 17.5%, mid = 26.4%, later = 32.5%) and severe (early = 3.8%, mid = 7.4%, later = 15.4%) walking difficulty at baseline increased across disease duration groups. The trajectories tended to be stable with variability in moderate and severe groups. Across strata, clusters with moderate to severe problems were associated with more severe impairment, depression, anxiety, arthritis, higher BMI, lower income, and lower education, but no consistent race or gender differences. The findings reveal distinct longitudinal patterns in perceived difficulties in walking in PD.

OBJECTIVE: Head and neck cancer (HNC) patients often suffer from shame and stigma due to treatment limitations or due to societal factors. The purpose of this study was to assess perceived body image, depression, physical and psychosocial function, and self-stigma, as well as to identify factors that predicted shame and stigma in patients with HNC.
METHODS: This cross-sectional study recruited 178 HNC patients from the outpatient radiation department of a medical center in Northern Taiwan. Patients were assessed for patient reported outcomes using the Body Image Scale (BIS), the Hospital Anxiety and Depression Scale-Depression Subscale (HADS-Depression Subscale), the University of Washington Quality of Life Scale (UW-QOL) version 4.0, and the Shame and Stigma Scale (SSS). Data were analyzed by descriptive analysis, Pearson\'s product-moment correlation, and multiple regression.
RESULTS: The two top-ranked subscales of shame and stigma were: \"speech and social concerns\" and \"regret\". Shame and stigma were positively correlated with a longer time since completion of treatment, more body image concerns, and higher levels of depression. They were negatively correlated with being male and having lower physical function. Multiple regression analysis showed that female gender, a longer time since completing treatment, higher levels of body image concern, greater depression, and less physical function predicted greater shame and stigma. These factors explained 74.7% of the variance in shame and stigma.
CONCLUSIONS: Patients\' body image concerns, depression, time since completing treatment, and physical function are associated with shame and stigma. Oncology nurses should assess and record psychological status, provide available resources, and refer appropriate HNC patients to counselling.