Safety and efficacy of fedratinib in patients with myelofibrosis previously treated with ruxolitinib: primary analysis of FREEDOM trial.

The phase 3b FREEDOM trial (ClinicalTrials.gov: NCT03755518) evaluates efficacy/safety of fedratinib in intermediate- or high-risk myelofibrosis patients with platelet count ≥50 × 109/L, previously treated with ruxolitinib. The trial design included protocol specified strategies to mitigate the risk for gastrointestinal (GI) adverse events (AEs), thiamine supplementation, and encephalopathy surveillance. Due to COVID-19, accrual was cut short with 38 patients enrolled. In the efficacy evaluable population (n = 35), nine (25.7%; 95% confidence interval 12.5-43.3) patients achieved primary endpoint of ≥35% spleen volume reduction (SVR) at end of cycle (EOC) 6; and 22 (62.9%) patients showed best overall response of ≥35% SVR up to end of treatment. Sixteen (44.4%) patients showed ≥50% reduction in total symptom score at EOC6 (n = 36). Compared to previously reported JAKARTA-2 trial, rates of GI AEs were lower, and no patient developed encephalopathy. Overall, FREEDOM study showed clinically relevant spleen and symptom responses with fedratinib, and effective mitigation of GI AEs.

Symptom Clusters and Their Impact on Spiritual Well-Being Among Women with Breast Cancer.

Purpose: To explore symptom experience and symptom clusters among Jordanian women with breast cancer and investigate whether these clusters predict patients' spiritual well-being. Patients and Methods: A sample of 142 Jordanian women with breast cancer were asked to complete the Memorial Symptom Assessment Scale (MSAS), Functional Assessment of Chronic Illness Therapy- Spiritual Well-being (FACIT-Sp) scale, and socio-demographic questionnaire. Exploratory factor analysis was used to group symptoms into clusters, and multiple linear regression was used to explore the symptom clusters that predict spiritual well-being. Results: The most prevalent symptoms among women with breast cancer were fatigue, anxiety, tension, and pain. All these symptoms have a prevalence greater than 50%. Three clusters were found: treatment-related symptom cluster consisting of eight symptoms, gastrointestinal symptom cluster consisting of seven symptoms, and psychological symptom cluster consisting of five symptoms. The psychological symptom cluster was the only cluster predicting the women's spiritual well-being (t (141) = -3.049; p < 0.01). Conclusion: Women with breast cancer experience several concurrent symptoms and symptom clusters. Screening for psychological symptom clusters and their treatment improves patients' spiritual well-being. The majority of women with breast cancer did not receive any complementary therapies and hardly any spiritual or psychological support, which should be provided in the future to support their spiritual well-being.

The effectiveness of reminiscence therapy on the symptom management, the life satisfaction, and the self-transcendence in palliative care patients: a randomized controlled trial.

PURPOSE: To examine the effect of individualized reminiscence therapy on the management of global distress and physical and psychological symptoms, life satisfaction and self-transcendence levels of palliative care patients. METHODS: In a single-center palliative care service in western Turkey, 48 patients without cognitive impairment and able to communicate were included in the study. However, 44 patients completed the study. Patients who met the inclusion criteria were randomly assigned to the reminiscence therapy (intervention), unstructured social interviewing (placebo), and control groups (16 people for each group) before the start of the study. The sessions for the interview and placebo groups were conducted face-to-face in the patient's room (while the patient was sitting or lying down) for 15 days (2 weeks), every other day, for a total of eight sessions (each session was approximately 30 min). Data collection instruments-the Memorial Symptom Assessment Scale, the Contentment with Life Assessment Scale, and the Self-Transcendence Scale-were collected at baseline (first day) and after the intervention (day 15th). Statistical significance level was accepted as p < 0.05. RESULTS: There was no decrease in physical and total symptom burden (p > 0.05). There were significant reductions in general distress and psychological symptoms in the intervention and placebo groups within the group (p < 0.05), but there were no significant differences between the control group and all groups when compared (p > 0.05). Group × time interactions were statistically significant for life satisfaction and self-transcendence (p < 0.001), and there was a substantial increase in the intervention group compared to the other groups. CONCLUSION: It may be recommended that reminiscence therapy intervention be included in routine nursing care as it may contribute positively to the psychological recovery of palliative care patients approaching the end of life. TRIAL REGISTRATION: ClinicalTrails.gov (Registration number: NCT05242016). Prospectively registered on 1 February 2022.

Enhanced clinical decisions for management of benign prostatic hyperplasia using patient-reported outcomes: protocol for a prospective observational study.

BACKGROUND: Lower urinary tract symptoms (LUTS) due to benign prostatic hyperplasia (BPH) significantly impact quality of life among older men. Despite the prevalent use of the American Urological Association Symptom Index (AUA-SI) for BPH, this measure overlooks key symptoms such as pain and incontinence, underscoring the need for more comprehensive patient-reported outcome (PRO) tools. This study aims to integrate enhanced PROs into routine clinical practice to better capture the spectrum of LUTS, thereby improving clinical outcomes and patient care. METHODS: This prospective observational study will recruit men with LUTS secondary to BPH aged ≥ 50 years from urology clinics. Participants will be stratified into medical and surgical management groups, with PRO assessments scheduled at regular intervals to monitor LUTS and other health outcomes. The study will employ the LURN Symptom Index (SI)-29 alongside the traditional AUA-SI and other non-urologic PROs to evaluate a broad range of symptoms. Data on comorbidities, symptom severity, and treatment efficacy will be collected through a combination of electronic health records and PROs. Analyses will focus on the predictive power of these tools in relation to symptom trajectories and treatment responses. Aims are to: (1) integrate routine clinical tests with PRO assessment to enhance screening, diagnosis, and management of patients with BPH; (2) examine psychometric properties of the LURN SIs, including test-retest reliability and establishment of clinically meaningful differences; and (3) create care-coordination recommendations to facilitate management of persistent symptoms and common comorbidities measured by PROs. DISCUSSION: By employing comprehensive PRO measures, this study expects to refine symptom assessment and enhance treatment monitoring, potentially leading to improved personalized care strategies. The integration of these tools into clinical settings could revolutionize the management of LUTS/BPH by providing more nuanced insights into patient experiences and outcomes. The findings could have significant implications for clinical practices, potentially leading to updates in clinical guidelines and better health management strategies for men with LUTS/BPH. TRIAL REGISTRATION: This study is registered in ClinicalTrials.gov (NCT05898932).

Translation and validation of the Chinese version of the BCPT Eight Symptom Scale (BESS) in patients with breast cancer.

Objective: This study aimed to translate the Breast Cancer Prevention Trial Eight Symptom Scale (BESS) into Chinese and subsequently examine the latent constructs and psychometric properties of the Chinese BESS (C-BESS) among patients with breast cancer. Methods: In Phase 1, the BESS was translated from English into Chinese using the FACIT translation method. An expert panel was convened to assess the content validity, and pilot testing was performed with 20 patients with breast cancer. In Phase 2, a total of 427 patients with breast cancer from four Grade-A public hospitals in China were recruited to examine psychometric properties of the C-BESS. The internal consistency was evaluated based on the Cronbach's α, and the construct validity was tested using confirmatory factor analysis, convergent validity, and discriminant validity. Results: The C-BESS demonstrated satisfactory content validity index (item-level content validity index [I-CVI]: 0.8-1.0; scale-level content validity index [S-CVI]: 0.97). The Cronbach's α value for the entire C-BESS scale was 0.92. Confirmatory factor analysis indicated that eight-factor structure of the C-BESS was a good fit to the data (CFI = 0.959, AGFI = 0.904, RMSEA = 0.05, RMR = 0.029). The scale exhibited good convergent validity and discriminant validity. Conclusions: This study translated and validated the C-BESS for use in the Chinese population. The results demonstrate that the C-BESS exhibits good reliability and validity, with ideal psychometric properties for assessing the symptom burden in Chinese patients with breast cancer. This tool can be effectively integrated into the routine symptom monitoring of patients with breast cancer in China, helping Chinese clinical professionals in conducting comprehensive assessments of symptom burden.

Cross-cultural adaptation and psychometric validation of point-of-care outcome assessment tools in Chinese palliative care clinical practice.

BACKGROUND: A standardized national approach to routinely assessing palliative care patients helps improve patient outcomes. However, a quality improvement program-based on person centered outcomes within palliative care is lacking in Mainland China. The well-established Australian Palliative Care Outcome Collaboration (PCOC) national model improves palliative care quality. This study aimed to culturally adapt and validate three measures that form part of the PCOC program for palliative care clinical practice in China: The PCOC Symptom Assessment Scale (PCOC SAS), Palliative Care Problem Severity Scale (PCPSS), Palliative Care Phase. METHODS: A study was conducted on cross-cultural adaptation and validation of PCOC SAS, PCPSS and Palliative Care Phase, involving translation methods, cognitive interviewing, and psychometric testing through paired assessments. RESULTS: Cross-cultural adaptation highlighted the need to strengthen the link between the patient's care plan and the outcome measures to improve outcomes, and the concept of distress in PCOC SAS. Analysis of 368 paired assessments (n = 135 inpatients, 22 clinicians) demonstrated that the PCOC SAS and PCPSS had good and acceptable coherence (Cronbach's a = 0.85, 0.75 respectively). Palliative Care Phase detected patients' urgent needs. PCOC SAS and PCPSS showed fair discriminant and concurrent validity. Inter-rater reliability was fair for Palliative Care Phase (k = 0.31) and PCPSS (k = 0.23-0.30), except for PCPSS-pain, which was moderate (k = 0.53). CONCLUSIONS: The Chinese version of PCOC SAS, PCPSS, and Palliative Care Phase can be used to assess outcomes as part of routine clinical practice in Mainland China. Comprehensive clinical education regarding the assessment tools is necessary to help improve the inter-rater reliability.

A comparison of the prevalence of dry mouth and other symptoms using two different versions of the Edmonton Symptom Assessment System on an inpatient palliative care unit.

BACKGROUND: Symptom assessment is key to effective symptom management and palliative care for patients with advanced cancer. Symptom prevalence and severity estimates vary widely, possibly dependent on the assessment tool used. Are symptoms specifically asked about or must the patients add them as additional symptoms? This study compared the prevalence and severity of patient-reported symptoms in two different versions of a multi-symptom assessment tool. In one version, three symptoms dry mouth, constipation, sleep problems were among those systematically assessed, while in the other, these symptoms had to be added as an "Other problem". METHODS: This retrospective cross-sectional study included adult patients with advanced cancer at an inpatient palliative care unit. Data were collected from two versions of the Edmonton Symptom Assessment System (ESAS): modified (ESAS-m) listed 11 symptoms and revised (ESAS-r) listed 9 and allowed patients to add one "Other problem". Seven similar symptoms were listed in both versions. RESULTS: In 2013, 184 patients completed ESAS-m, and in 2017, 156 completed ESAS-r. Prevalence and severity of symptoms listed in both versions did not differ. In ESAS-m, 83% reported dry mouth, 73% constipation, and 71% sleep problems, but on ESAS-r, these symptoms were reported by only 3%, 15% and < 1%, respectively. Although ESAS-r severity scores for these three symptoms were higher than on ESAS-m, differences did not reach statistical significance. CONCLUSION: We identified significant differences in patient symptom reporting based on whether symptoms like dry mouth, obstipation and sleep problems were specifically assessed or had to be added by patients as an "Other problem".

Patient-reported symptoms before adjuvant locoregional radiotherapy for breast cancer: triple-negative histology impacts the symptom burden.

BACKGROUND: Multimodal breast cancer treatment may cause side effects reflected in patient-reported outcomes and/or symptom scores at the time of treatment planning for adjuvant radiotherapy. In our department, all patients have been assessed with the Edmonton Symptom Assessment System (ESAS; a questionnaire addressing 11 major symptoms and wellbeing on a numeric scale of 0-10) at the time of treatment planning since 2016. In this study, we analyzed ESAS symptom severity before locoregional radiotherapy. PATIENTS AND METHODS: Retrospective review of 132 patients treated between 2016 and 2021 (all comers in breast-conserving or post-mastectomy settings, different radiotherapy fractionations) was performed. All ESAS items and the ESAS point sum were analyzed to identify subgroups with higher symptom burden and thus need for additional care measures. RESULTS: The biggest patient-reported issues were fatigue, pain, and sleep problems. Patients with triple negative breast cancer reported a higher symptom burden (mean 30 versus 20, p = 0.038). Patients assigned to adjuvant endocrine therapy had the lowest point sum (mean 18), followed by those on Her-2-targeting agents without chemotherapy (mean 19), those on chemotherapy with or without other drugs (mean 26), and those without systemic therapy (mean 41), p = 0.007. Those with pathologic complete response after neoadjuvant treatment had significantly lower anxiety scores (mean 0.7 versus 1.8, p = 0.03) and a trend towards lower depression scores, p = 0.09. CONCLUSION: Different surgical strategies, age, and body mass index did not impact on ESAS scores, while the type of adjuvant systemic therapy did. The effect of previous neoadjuvant treatment and unfavorable tumor biology (triple negative) emerged as important factors associated with symptom burden, albeit in different domains. ESAS data may facilitate identification of patients who should be considered for additional supportive measures to alleviate specific symptoms.

Acceptability and usefulness of the EORTC 'Write In three Symptoms/Problems' (WISP): a brief open-ended instrument for symptom assessment in cancer patients.

BACKGROUND: The use of open-ended questions supplementing static questionnaires with closed questions may facilitate the recognition of symptoms and toxicities. The open-ended 'Write In three Symptoms/Problems (WISP)' instrument permits patients to report additional symptoms/problems not covered by selected EORTC questionnaires. We evaluated the acceptability and usefulness of WISP with cancer patients receiving active and palliative care/treatment in Austria, Chile, France, Jordan, the Netherlands, Norway, Spain and the United Kingdom. METHODS: We conducted a literature search on validated instruments for cancer patients including open-ended questions and analyzing their responses. WISP was translated into eight languages and pilot tested. WISP translations were pre-tested together with EORTC QLQ-C30, QLQ-C15-PAL and relevant modules, followed by patient interviews to evaluate their understanding about WISP. Proportions were used to summarize patient responses obtained from interviews and WISP. RESULTS: From the seven instruments identified in the literature, only the free text collected from the PRO-CTAE has been analyzed previously. In our study, 161 cancer patients participated in the pre-testing and interviews (50% in active treatment). Qualitative interviews showed high acceptability of WISP. Among the 295 symptoms/problems reported using WISP, skin problems, sore mouth and bleeding were more prevalent in patients in active treatment, whereas numbness/tingling, dry mouth and existential problems were more prevalent in patients in palliative care/treatment. CONCLUSIONS: The EORTC WISP instrument was found to be acceptable and useful for symptom assessment in cancer patients. WISP improves the identification of symptoms/problems not assessed by cancer-generic questionnaires and therefore, we recommend its use alongside the EORTC questionnaires.

Symptoms and symptom clusters in patients with hepatocellular carcinoma and commonly used instruments: An integrated review.

Objective: This study aimed to synthesize the available knowledge of identifying hepatocellular carcinoma (HCC) symptoms and symptom clusters in patients with HCC and instruments used for these assessments to maximize symptom management. Methods: Whittemore and Knafl's integrative review method was employed to guide a systematic search for literature in five databases (PubMed, ScienceDirect, Scopus, CINAHL, and ThaiJO). The retrieved articles were limited to those which were peer-reviewed, published between 2005 and 2022, and had English abstracts. All of identified studies were screened, extracted, and analyzed independently by two researchers. Result: Fourteen articles were included in this review. They were grouped into three themes: symptoms, symptom assessment, and symptom clusters of HCC patients. Fatigue, lack of energy, stomach or abdominal pain/distension, loss of appetite, change in taste, sleep disturbance, distress, and sadness are the most prevalent symptoms reported in HCC patients. The different concurrent symptoms are related to the stage and treatment. Five types of symptom assessment instruments were commonly used (symptoms-specific HCC, general cancer symptom, measuring non-symptom constructs, measuring specific symptoms, such as fatigue, sleep disturbance, anxiety, and depression, and symptom assessment with clinical examination). Furthermore, the symptom clusters in HCC patients were classified into five categories: 1) pain-related symptoms, 2) gastrointestinal symptoms, 3) neuropsychological symptom clusters and sensory symptoms, 4) liver dysfunction-related symptom clusters, and 5) others (including sickness symptom clusters, fatigue clusters, location pain symptoms, and asymptomatic or symptomatic). Conclusion: The findings of this review add to the body of knowledge on symptoms, symptom assessment, and symptom clusters in patients with HCC. Despite a variety of instruments being available, none covers all symptoms experienced by HCC patients. It is recommended that future studies should include larger and more homogenous samples to evaluate assessment instruments more precisely, avoid ambiguity in classifying symptoms into symptom clusters, and increase the effectiveness of symptom management.

Inter-reporter differences in symptom burdens in Japanese children with cancer.

BACKGROUND: Recent studies about inter-reporter differences and patient-reported outcomes (PROs) in childhood cancer from Western countries showed that caregiver proxy reports tend to overestimate symptom burdens in comparison with children's self-reports. However, the results from Western countries may not be generalizable to Asian countries. METHODS: This paper is a secondary analysis of a validation study of the Japanese pediatric version of the Memorial Symptom Assessment Scale including 88 dyads of children aged 7-12 years and 74 dyads of children aged 13-18 years and their caregivers. The study assessed the inter-reporter differences of eight and 31 symptom burdens calculated as symptom scores in children aged 7-12 years and 13-18 years, respectively, and the association between inter-reporter differences and the characteristics of children and caregivers. RESULTS: The majority of children and caregivers scored equally at the dyadic level for almost all symptoms. However, 37.5% of symptoms in children aged 7-12 years and 10.0% of symptoms in children aged 13-18 years showed significant inter-reporter differences, suggesting a general tendency of caregivers to underestimate their children's symptom burden. The caregiver's age was the characteristic most frequently associated with magnitude of inter-reporter differences. CONCLUSIONS: Caregiver proxy reports may be a reliable source of PROs in Japanese children with cancer, as self-reported and caregiver proxy-reported symptom burdens were generally concordant. However, as some significant inter-reporter differences were observed, an effort should be made within the medical community to evaluate the parent-child relationship to minimize inter-reporter differences and achieve better symptom management.

Understanding the incidence, duration, and severity of symptoms through daily symptom monitoring among frail and non-frail older patients receiving metastatic prostate cancer treatments.

INTRODUCTION: Older adults with metastatic prostate cancer (mPC) experience high symptom burden associated with treatment. Frailty may exacerbate treatment toxicity. The aim of this study was to explore short-term treatment toxicity in patients with metastatic prostate cancer. MATERIALS AND METHODS: Older adults with metastatic prostate cancer starting chemotherapy, androgen-receptor-axis targeted therapies, or radium-223 participated in a prospective, multicentre, observational study. Participants self-reported symptoms daily using the Edmonton Symptom Assessment System for one treatment cycle via internet or telephone. The most common moderate-to-severe symptoms (score≥4), their duration, and the proportion of participants who experienced improvements in symptom severity (score<4) after reporting moderate-to-severe symptoms at baseline were determined using descriptive statistics. Once-weekly symptom questionnaires were administered and analyzed using linear mixed effect models. Symptom incidence, duration, and frailty associations were assessed using t-tests and chi-square tests. RESULTS: Ninety participants completed the study (mean age=77 years [standard deviation=6.1], 42% frail [Vulnerable Elders Survey≥3]). The most common moderate-to-severe symptoms across cohorts were fatigue (46.8%), insomnia (42.9%), poor wellbeing (41.2%), pain (37.5%), and decreased appetite (37.1%). Poor wellbeing had a higher incidence in frail participants (62.5% in frail vs. 31.4% in non-frail, p=0.039). Symptom duration varied across cohorts and between frail and non-frail participants. Among participants who reported moderate-to-severe symptoms at baseline, no more than 15% improved in any symptom. There were statistically significant improvements in weekly symptoms for fatigue, decreased appetite, and insomnia in the chemotherapy cohort only. DISCUSSION: Limitations include a short follow-up duration, lack of a control group, and few radium-223 participants. Regular symptom monitoring can help clinicians understand temporal patterns and durations of symptoms and inform supportive care approaches.

Pilot study evaluating feasibility and utility of pharmacist-driven oral antineoplastic agent monitoring program.

INTRODUCTION: Oncologists are increasingly prescribing oral antineoplastic agents which have benefits and challenges impacting patient outcomes. Practice guidelines recommend monitoring symptoms and adherence without outlining any specific tools or methods for monitoring. Pharmacists are successful in monitoring patients on therapy and improving outcomes. We aimed to assess the feasibility and utility of a pharmacist-delivered and medical record-integrated adherence and symptom monitoring program for patients on oral antineoplastic agents. METHODS: This single-center, prospective, interventional study designed and implemented an adherence and monitoring program. A pharmacist contacted patients twice between clinic visits for three months. During telephone encounters, patients were verbally screened for medication adherence and assessed for new or changing symptoms using the Edmonton Symptom Assessment System as a signal of possible adverse events. We measured feasibility via patient enrollment, completed proportion of scheduled contacts, and pharmacist time. Utility was assessed through patient adherence, satisfaction surveys, healthcare resource utilization, and pharmacist interventions (i.e., patient education, adherence assistance, and symptom management). RESULTS: Fifty-one patients participated. Ninety-one percent of scheduled patient contacts were completed. Edmonton Symptom Assessment System was administered by pharmacy personnel 102 times. Patient-reported adherence was 100%. Overall satisfaction was 85% and 100%, for patients and physicians, respectively. Fifty-one (98%) pharmacist recommendations were accepted. There were 14 total utilizations of healthcare resources-5.2 per 1000 patient days. CONCLUSIONS: This study suggests a pharmacist monitoring program for patients taking oral antineoplastic agents is feasible and provides utility. Further research is needed to evaluate whether this program improves safety, adherence, and outcomes in patients using oral antineoplastic agents.

Enhancing Symptom Screening and Patient Education Among Patients with Metastatic Lung Cancer: a Qualitative Analysis.

We explored perspectives of patients with metastatic non-small cell lung cancer (mNSCLC) on symptom screening and population-level patient-reported outcome (PRO) data regarding common symptom trajectories in the year after diagnosis. A qualitative study of patients with mNSCLC was conducted at a Canadian tertiary cancer centre. English-speaking patients diagnosed ≥ 6 months prior to study invitation were recruited, and semi-structured one-on-one interviews were conducted. Patient and treatment characteristics were obtained via chart review. Anonymized interview transcripts underwent deductive-inductive coding and thematic content analysis. Among ten participants (5 (50%) females; median (range) age, 68 (56-77) years; median (range) time since diagnosis, 28.5 (6-72) months; 6 (60%) with smoking histories), six themes were identified in total. Two themes were identified regarding symptom screening: (1) screening is useful for symptom self-monitoring and disclosure to the healthcare team, (2) screening of additional quality-of-life (QOL) domains (smoking-related stigma, sexual dysfunction, and financial toxicity) is desired. Four themes were identified regarding population-level symptom trajectory PRO data: (1) data provide reassurance and motivation to engage in symptom self-management, (2) data should be disclosed after an oncologic treatment plan is developed, (3) data should be communicated via in-person discussion with accompanying patient-education resources, and (4) communication of data should include reassurance about symptom stabilization, acknowledgement of variability in patient experience, and strategies for symptom self-management. The themes and recommendations derived from the patient experience with mNSCLC provide guidance for enhanced symptom screening and utilization of population-level symptom trajectory data for patient education.

Assessment and indicators of kinematic behavior and perceived fatigability

SUMMARY OBJECTIVE: The objective of this study was to investigate the relationship between upper limb kinetics and perceived fatigability in elderly individuals during an upper limb position sustained isometric task. METHODS: A total of 31 elderly participants, 16 men (72.94±4.49 years) and 15 women (72.27±6.05 years), performed a upper limb position sustained isometric task. Upper-limb acceleration was measured using an inertial measurement unit. Perceived fatigability was measured using the Borg CR10 scale. RESULTS: Higher mean acceleration in the x-axis throughout the activity was associated with higher final perceived fatigability scores. Moderate correlations were observed between perceived fatigability variation and mean acceleration cutoffs in all axes during the second half of the activity. In women, significant correlations were found between all perceived fatigability cutoffs and mean acceleration in the y- and x-axes. However, in men, the relationships between perceived fatigability variation and mean acceleration were more extensive and stronger. CONCLUSION: The acceleration pattern of the upper limb is linked to perceived fatigability scores and variation, with differences between sexes. Monitoring upper limb acceleration using a single inertial measurement unit can be a useful and straightforward method for identifying individuals who may be at risk of experiencing high perceived fatigability or task failure.

Protocolo de avaliação para apraxia de fala adquirida / Assessment protocol for acquired apraxia of speech

RESUMO Objetivo Elaborar um protocolo de avaliação do planejamento motor da fala com estímulos fonologicamente balanceados para o português brasileiro e que contemple todas as variáveis necessárias para este diagnóstico. Método Foram realizadas três etapas: Na primeira, construíram-se listas de palavras cujo critério principal foram os padrões silábicos e acentuais. Do levantamento realizado na Etapa 1, procedeu-se à seleção dos vocábulos que compuseram a primeira versão do protocolo na Etapa 2, reunidas em duas tarefas: de repetição e de Leitura em Voz Alta (LVA). Em seguida, investigou-se a ocorrência das palavras usando a base de dados do Corpus Brasileiro (PUC-SP) - Linguateca. Na etapa 3 realizou-se a análise estatística para verificar se as listas de repetição e de LVA estavam equilibradas quanto à ocorrência das palavras. Assim, as listas foram distribuídas em quartis e foram analisadas de forma descritiva e bivariada. O nível de significância utilizado foi de 5%. Resultados Após a realização de todas as etapas, foi possível obter as palavras que compuseram as listas das tarefas de repetição e de LVA. Finalmente, foram então acrescidas ao protocolo as demais tarefas consideradas essenciais para a avaliação da apraxia como as taxas diadococinéticas e a prancha para a emissão oral espontânea. Conclusão O protocolo desenvolvido contém as tarefas consideradas padrão para a avaliação da apraxia de fala pela literatura internacional, o que torna esse instrumento importante para o diagnóstico desse distúrbio em falantes do português brasileiro.

ABSTRACT Purpose To develop an assessment protocol for speech motor planning with phonologically balanced stimuli for Brazilian Portuguese, including all necessary variables for this diagnosis. Methods Three stages were carried out: In the first, word lists were built with the main criterion being syllabic and accentual patterns. From the survey conducted in Stage 1, the words that composed the first version of the protocol lists in Stage 2 were selected, and grouped into two fundamental tasks for diagnosing acquired apraxia of speech (AOS): repetition and Reading Aloud (RA). In Stage 3, the occurrence of words was investigated using the Brazilian Corpus (PUC-SP) - Linguateca database, and a statistical analysis was performed to verify if the repetition and RA lists were balanced in terms of the occurrences. Thus, the lists were distributed in quartiles and submitted to both descriptive and bivariate analyses. A significance level of 5% (p<0.05) was adopted. Results After completion of all stages, the words that composed the lists of the repetition and RA tasks were obtained. Finally, other tasks considered essential for the assessment of AOS, such as diadochokinetic rates and the board for spontaneous oral emission, were then added to the protocol. Conclusion The developed protocol contains the tasks considered standard for the assessment of AOS according to the international literature, which makes this instrument important for diagnosing this disorder in speakers of Brazilian Portuguese.

Percepción temporal de síntomas de disfagia en una cohorte de pacientes con disfagia orofaríngea neurogénica

Introducción: La disfagia resulta de varios mecanismos fisiopatológicos donde sus síntomas no son estáticos ni homogéneos en las personas, especialmente cuando existe disfagia orofaríngea neurogénica. Objetivo: Conocer la percepción y comportamiento en el tiempo de síntomas de disfagia mediante el instrumento Eating Assessment Tool-10 (EAT-10) en pacientes con disfagia orofaríngea neurogénica, con el fin de visualizar la dinámica clínica de esta forma de disfagia. Metodología: Estudio observacional tipo cohorte en pacientes con disfagia orofaríngea neurogénica de causas neurológicas y neuromusculares, con seguimiento a tres y seis meses y diligenciamiento del EAT-10 al momento basal, tercer y sexto mes. Resultados: Un total de 90 personas con evaluación basal, de las cuales el 56,7 % (51/90) lograron seguimiento al tercer mes y 25,6 % (23/90) al sexto mes. Los síntomas de disfagia con mayor autopercepción en los tres momentos fueron la dificultad para tragar sólidos, sensación de comida pegada en garganta y tos al comer. La odinofagia no fue un síntoma habitualmente percibido. La puntuación total del EAT-10 estuvo entre 16,61 ± 9 y 18,1 ± 9,5 puntos en general. En pacientes con seguimiento completo se observó variación en la autopercepción para tragar líquidos y pastillas. Se observó variación del puntaje al ajustarlo por recepción de terapias. Discusión: Las enfermedades neurológicas y neuromusculares impactan directamente la deglución con gravedad entre leve a profunda, donde la autopercepción de síntomas deglutorios es dinámica, pero con síntomas cardinales de disfagia orofaríngea en el tiempo. Conclusiones: El reconocimiento y seguimiento de síntomas de disfagia deben ser aspectos usuales en la atención de pacientes con enfermedades neurológicas y neuromusculares.

Introduction: Dysphagia results from several pathophysiological mechanisms where its symptoms are not static or homogeneous in people, especially when there is neurogenic oropharyngeal dysphagia. Objective: To know the perception and behavior over time of symptoms of dysphagia using the Eating Assessment Tool-10 (EAT-10) in patients with neurogenic oropharyngeal dysphagia to visualize the clinical dynamics of this form of dysphagia. Methodology: Observational cohort study in patients with neurogenic oropharyngeal dysphagia of neurological and neuromuscular causes with, follow-up at three and six months, and completion of the EAT-10 at baseline, third and sixth month. Results: A total of 90 people with baseline evaluation were included, of whom 56.7% (51/90) achieved follow-up at the third month and 25.6% (23/90) at the sixth month. Symptoms of dysphagia with greater self-perception at all three moments were difficulty swallowing solids, sensation of food stuck in the throat and coughing when eating. Odynophagia was not a commonly perceived symptom. The total score of the EAT-10 was between 16.61±9 and 18.1±9.5 points in general. In patients with complete follow-up, variation in self-perception of swallowing liquids and pills was observed. Variation of the score when adjusting for the reception of therapies. Discussion: Neurological and neuromuscular diseases directly impact swallowing with mild to profound severity, where self-perception of swallowing symptoms is dynamic, but with cardinal symptoms of oropharyngeal dysphagia over time. Conclusions: The recognition and monitoring of dysphagia symptoms should be usual aspects in the care of patients with neurological and neuromuscular diseases.

Clinical characteristics and symptom burden of Thai myeloproliferative neoplasm patients.

ABSTRACTObjective Patients living with myeloproliferative neoplasms (MPNs) suffer from symptom burden that affect quality of life. Due to the differences in cultures, climates, and genetic background, we aimed to investigate the symptom burden of Thai MPN patients Methods A comprehensive survey using the MPN-10 questionnaire was carried out between September 1, 2014, and September 30, 2017. The scores obtained were then correlated with clinical outcomes.. Results A total of 145 patients were enrolled. Nearly 90% of patients reported being symptomatic. The mean MPN-10 score was 13.6 (SD = 11). The mean MPN-10 score was highest in PMF, whereas the mean score and intensity of individual items were surprisingly low in ET and PV. Notably, the mean MPN-10 score was significantly higher in patients with documented splenomegaly compared to those with a normal-sized spleen. However, there were no correlations between MPN-10 scores and the mutation status, disease complications such as thrombosis and hemorrhage, progression to myelofibrosis or leukemia, and mortality. Patients who needed regular transfusions reported a higher MPN-10 score compared to those who did not. Conclusion The MPN-10 score did not predict survival outcomes among Thai MPN patients. Higher MPN-10 was associated with more transfusion. Thai MPN patients reported lower MPN-10 compared to western population especially PV and ET.

Observation of changes in quality of life for 5 years after thyroid surgery: an observational cross-sectional study in Korean population.

Purpose: As thyroid cancer patients are experiencing longer disease-free survival periods, evaluating their quality of life after surgery has become crucial. However, studies on this topic have primarily focused on Western populations, leaving a gap in understanding the Korean patient population's experiences and needs. This study aims to address this gap and provide insights into the quality of life of thyroid cancer patients in Korea. Methods: This cross-sectional study evaluated the quality of life of Korean thyroid cancer patients who underwent thyroid lobectomy or total thyroidectomy. Patients were surveyed using the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC-QLQ-C30, ver. 3.0) during outpatient clinic visits from January to September 2015. The results were analyzed by comparing them to scores of the general population and based on the time elapsed since surgery. This approach allowed for a comprehensive evaluation of the quality-of-life outcomes in this patient population. Results: The study found that thyroidectomy had a notable impact on patients' role and cognitive functions. Patients also experienced worsened symptoms such as fatigue, dyspnea, and constipation, which improved over time and returned to normal levels. However, there were no significant changes in other functions and symptoms after surgery. Conclusion: The study's findings showed that thyroidectomy had a relatively minor impact on the functional and symptomatic well-being of patients. Therefore, the results suggest that thyroid surgery may be a safe and effective treatment option for thyroid cancer patients seeking to maintain a good quality of life.

The effect of burdensome symptoms and functional status on quality of life among older patients with cancer: A correlational study.

PURPOSE: The current study aimed to assess the effect of burdensome symptoms and functional status on QoL among Jordanian older patients with cancer presenting to outpatient clinics. METHODS: A correlational design was implemented to collect data from 165 older patients with cancer visiting outpatient oncology clinics. RESULTS: Generally, the participants have a relatively low quality of life (M = 52.22 ± 24.57). The highest needs according to their functional status were difficulty walking a long distance (M = 3.06 ± 1.004; physical functional status), feeling limited in pursuing hobbies or leisure time activities (M = 2.32 ± 1.05; role functional status), feeling nervous (M = 2.36 ± 1.01; emotional functional status), having difficulty concentrating (M = 2.15 ± 1.04; cognitive functional status), and that physical condition or medical treatment interfered with their social activities (M = 2.36 ± 1.10; social functional status). Further, the most common distressing symptom was insomnia (n = 90, 54%), followed by fatigue (n = 79, 47.9%). Lastly, quality of life improved with better functional status (the strongest correlation was with the role functional status: r = 0.503, p < .001) and declined with higher symptom severity (the strongest correlation was with fatigue: r = -0.566, p < .001). CONCLUSIONS: To conclude, the current study sheds light on older patients with cancer burdensome symptoms and functional status and their effect on quality of life. The findings suggest that patients suffer from several functional limitations and distressing symptoms that affect their quality of life, necessitating screening and corrective actions from healthcare providers.