The impact of symptom screening on survival among patients with cancer across varying levels of pre-diagnosis psychiatric care.

BACKGROUND: Patients diagnosed with cancer often experience considerable challenges with mental health, and those who had more intense psychiatric care prior to their cancer diagnosis have a higher risk of mortality. As prior research demonstrated a survival benefit among patients screened for symptoms using the Edmonton symptom assessment system (ESAS), this study aims to examine the association between being ESAS-screened and the risk of mortality across varying intensity levels of pre-diagnosis psychiatric care utilization. METHODS: We conducted a retrospective matched cohort study using population-wide administrative databases. All patients diagnosed with cancer in Ontario, Canada, from January 2007 to December 2015 were identified. Propensity score matching was used to pair ESAS-screened individuals to those not screened. Pairs were also hard matched on a pre-diagnosis psychiatric care utilization gradient. A multivariable Cox proportional hazards regression model was implemented to estimate the association between ESAS and mortality, for each intensity level of pre-diagnosis psychiatric care. RESULTS: The matched cohort consisted of 119,806 patient pairs (ESAS-screened and not screened), of whom 54,468 (45.5%) pairs had prior outpatient psychiatric care and 2249 (1.8%) pairs had experienced emergency department visits or had been hospitalized for psychiatric care. Overall being exposed to ESAS was significantly associated with a 51% decrease in the hazard of mortality (HR 0.49, 95%CI 0.48-0.50, p-value <0.0001). This association was similar across all levels of prior psychiatric use, however, there was no evidence of a differential impact. CONCLUSION: In addition to routinely monitoring symptom severity, including depression, among patients with cancer, it is also important to identify those with preexisting psychiatric comorbidities at the time of diagnosis. This information can be used to ensure that timely and appropriate psycho-oncology services and psycho-social supports are offered to help the patient and their family cope during the cancer disease trajectory.

Exploring the clinical meaningfulness of the Scale for the Assessment and Rating of Ataxia: A comparison of patient and physician perspectives at the item level.

BACKGROUND: The Scale for the Assessment and Rating of Ataxia (SARA) is commonly used as the primary outcome measure in therapeutic trials. Driven by spontaneous comments from ataxia patients participating in a trial, we aimed to examine the clinical meaningfulness of the SARA from their perspective. METHODS: Twenty mildly to moderately affected individuals with spinocerebellar ataxia type 3 (SARA score 11.3 ± 4.1) completed a custom-designed survey. SARA item scores were compared with self-reported complaints in everyday life. Discrepancies between SARA ratings and patients' daily life experiences were reported as "overestimation" (i.e., a SARA item score more than 0, but no corresponding complaints) or "underestimation" (i.e., a SARA item score of 0, yet accompanying complaints). RESULTS: Patient-physician discrepancies were present in essentially all SARA items except for gait. The mean number of overestimated SARA points per patient was 3.1 ± 2.1. Underestimation occurred less frequently, but was relatively common in stance and fast alternating hand movements. Three quarters of patients marked gait as the most valuable SARA item, while the remaining 25% selected stance. CONCLUSION: On average, a quarter of total SARA score does not reflect meaningful impairments from a patient's perspective. Our data suggest that it is doubtful whether potential improvements at some of the items will be perceived as comparably important by mildly to moderately affected ataxia patients. These observations question the utility of delta SARA score as the most appropriate primary endpoint in clinical trials and call for the addition of outcome measures, such as the Patient Global Impression of Change scale and validated ataxia-specific patient-reported outcome measures.

Podiatrists' views and experiences of using real time clinical gait analysis in the assessment and treatment of posterior tibial tendon dysfunction.

BACKGROUND: Real time clinical gait analysis (RTCGA) is often incorporated as part of a general or lower limb musculoskeletal (MSK) adult patient assessment. However, it is not known if RTCGA is clinically effective as a useful outcome measure or aids in decision making. Whether there is a clinical worth in conducting RTCGA in adult MSK consultations remains controversial. The aim of this study was to provide unique insights into MSK podiatrists use and opinions of RTCGA, using Posterior Tibial Tendon Dysfunction (PTTD) as an exemplar adult condition. METHODS: A qualitative approach was employed to explore MSK podiatrists' views and experiences of RTCGA when assessing or treating patients with PTTD. Semi-structured interviews were conducted via Skype video calls which were transcribed using an orthographic transcription method. Thematic analysis was employed to identify key meanings and report patterns within the data. RESULTS: Twenty nine MSK podiatrists who used RTCGA in the assessment and treatment of PTTD participated in the study. Five themes were identified as 1) RTCGA Method; 2) Working with RTCGA; 3) RTCGA uses; 4) What could aid RTCGA; 5) How RTCGA skills are acquired. This is the first known study to explore this topic of relevance to clinicians and researchers alike. Clinical observations were not only kinematic, but also included patient perceived experiences such as pain and orthotic comfort with normative kinematic reference values not perceived as important to that management goal. The most common barefoot RTCGA observations performed were the rearfoot to leg angle, medial bulge, forefoot abduction and arch integrity. However, a high amount of variation in many gait observations was noted between participants. Documentation methods also varied with a four-point scale system to grade motion and position most often employed and RTCGA was most often learnt through experience. The main barriers to performing RTCGA were clinical time and space restrictions. CONCLUSION: Findings from this study have provided a view of how podiatry MSK clinicians utilise RTCGA within their practice. MSK podiatrists use RTCGA as both an outcome measure and as an aid in decision making. This implies a perceived worth in conducting RTCGA, however further work is recommended that focusses on development of a national guideline to RTCGA to be adopted.

Relationship between symptoms and both stage of change in adopting a healthy life style and quality of life in patients with liver cirrhosis: a cross-sectional study.

BACKGROUND: Previous studies of patients with liver cirrhosis have not considered the broad range of symptoms or the association between healthy behavior and quality of life. The purposes of this study were to examine the association between symptoms and adopting exercise and consuming fruits and vegetables and to identify factors associated with quality of life in patients with liver cirrhosis. METHODS: This cross-sectional study enrolled 91 consecutive patients with liver cirrhosis in one tertiary general hospital in South Korea between February 2016 and January 2017. Each study participant completed a self-administered questionnaire that measured symptom, stage of change in engaging in exercise and consumption of fruits and vegetables, and the Korean version of the 36-item Short-Form Health Survey. Multivariate ordinal logistic regression analysis and multiple regression models was used, respectively, to examine the association between each symptom with stage of change in engaging in exercise and consumption of fruits and vegetables and to evaluate factors affecting quality of life. RESULTS: Experiencing nausea was associated with more readiness for change in engaging in exercise, but experiencing shortness of breath was associated with less readiness for change in engaging in exercise. Experiencing right upper quadrant pain was associated with more readiness for change in engaging in consumption of fruits and vegetables. Muscle cramps, anorexia, right upper quadrant pain and body pain, itching, ascites or edema, bruising, and change in appearance negatively affected quality of life. CONCLUSIONS: The results suggest that the types of symptoms experienced by a patient with liver cirrhosis hinder or promote the patient's adoption of exercise and dietary behavior. Experiencing symptoms may negatively affect quality of life. Caregivers should provide supportive care to patients with liver cirrhosis, which includes assessing and managing symptoms to improve quality of life.

Patients Undergoing Ileoanal Pouch Surgery Experience a Constellation of Symptoms and Consequences Representing a Unique Syndrome: A Report from the Patient-Reported Outcomes After Pouch Surgery (PROPS) Delphi Consensus Study.

BACKGROUND: Functional outcomes after ileoanal pouch creation have been studied; however, there is great variability in how relevant outcomes are defined and reported. More importantly, the perspective of patients has not been represented in deciding which outcomes should be the focus of research. OBJECTIVE: The primary aim was to create a patient-centered definition of core symptoms that should be included in future studies of pouch function. DESIGN: This was a Delphi consensus study. SETTING: Three rounds of surveys were used to select high-priority items. Survey voting was followed by a series of online patient consultation meetings used to clarify voting trends. A final online consensus meeting with representation from all 3 expert panels was held to finalize a consensus statement. PATIENTS: Expert stakeholders were chosen to correlate with the clinical scenario of the multidisciplinary team that cares for pouch patients, including patients, colorectal surgeons, and gastroenterologists or other clinicians. MAIN OUTCOME MEASURES: A consensus statement was the main outcome. RESULTS: patients, 62 colorectal surgeons, and 48 gastroenterologists or nurse specialists completed all 3 Delphi rounds. Fifty-three patients participated in online focus groups. One hundred sixty-one stakeholders participated in the final consensus meeting. On conclusion of the consensus meeting, 7 bowel symptoms and 7 consequences of undergoing ileoanal pouch surgery were included in the final consensus statement. LIMITATIONS: The study was limited by online recruitment bias. CONCLUSIONS: This study is the first to identify key functional outcomes after pouch surgery with direct input from a large panel of ileoanal pouch patients. The inclusion of patients in all stages of the consensus process allowed for a true patient-centered approach in defining the core domains that should be focused on in future studies of pouch function. See Video Abstract at http://links.lww.com/DCR/B571. LOS PACIENTES SOMETIDOS A CIRUGA DE RESERVORIO ILEOANAL EXPERIMENTAN UNA CONSTELACIN DE SNTOMAS Y CONSECUENCIAS QUE REPRESENTAN UN SNDROME UNICO: Un Informe de los Resultados Reportados por los Pacientes Posterior a la Cirugía de Reservorio (PROPS) Estudio de Consenso DelphiANTECEDENTES:Los resultados funcionales después de la creación del reservorio ileoanal han sido estudiados; sin embargo, existe una gran variabilidad en la forma en que se definen y reportan los resultados relevantes. Más importante aún, la perspectiva de los pacientes no se ha representado a la hora de decidir qué resultados deberían ser el foco de investigación.OBJETIVO:El objetivo principal era crear en el paciente una definición centrada de los síntomas principales que debería incluirse en los estudios futuros de la función del reservorio.DISEÑO:Estudio de consenso Delphi.ENTORNO CLINICO:Se emplearon tres rondas de encuestas para seleccionar elementos de alta prioridad. La votación de la encuesta fue seguida por una serie de reuniones de consulta de pacientes en línea que se utilizan para aclarar las tendencias de votación. Se realizo una reunión de consenso final en línea con representación de los tres paneles de expertos para finalizar una declaración de consenso.PACIENTES:Se eligieron partes interesadas expertas para correlacionar con el escenario clínico del equipo multidisciplinario que atiende a los pacientes con reservorio: pacientes, cirujanos colorrectales, gastroenterólogos / otros médicos.PRINCIPALES MEDIDAS DE VALORACION:Declaración de consenso.RESULTADOS:Ciento noventa y cinco pacientes, 62 cirujanos colorrectales y 48 gastroenterólogos / enfermeras especialistas completaron las tres rondas Delphi. 53 pacientes participaron en grupos focales en línea. 161 interesados participaron en la reunión de consenso final. Al concluir la reunión de consenso, siete síntomas intestinales y siete consecuencias de someterse a una cirugía de reservorio ileoanal se incluyeron en la declaración de consenso final.LIMITACIONES:Sesgo de reclutamiento en línea.CONCLUSIONES:Este estudio es el primero en identificar resultados funcionales claves después de la cirugía de reservorio con información directa de un gran panel de pacientes con reservorio ileoanal. La inclusión de pacientes en todas las etapas del proceso de consenso permitió un verdadero enfoque centrado en el paciente para definir los dominios principales en los que debería centrarse los estudios futuros de la función del reservorio. Consulte Video Resumen en http://links.lww.com/DCR/B571.

Patient and GP experiences of pathways to diagnosis of a second primary cancer: a qualitative study.

BACKGROUND: More people are surviving a first primary cancer and experiencing a second, different cancer. However, little is known about the diagnostic journeys of patients with second primary cancer (SPC). This study explores the views of patients and general practitioners (GPs) on their experiences of pathways to diagnosis of SPC, including the influence of a previous diagnosis of cancer on symptom appraisal, help-seeking and referral decisions. METHODS: Qualitative interviews with patients with a SPC diagnosis and case-linked GP interviews in a Scottish primary care setting. In-depth face to face or telephone interviews were conducted, underpinned by a social constructionist approach. Interviews were transcribed and Braun and Clarke's thematic analysis undertaken. Three analysts from the research team read transcripts and developed the coding framework using QSR NVivo version 10, with input from a fourth researcher. Themes were developed from refined codes and interpreted in the context of existing literature and theory. RESULTS: Interviews were conducted with 23 patients (aged 43-84 years) with a SPC diagnosis, and 7 GPs. Five patient themes were identified: Awareness of SPC, symptom appraisal and help-seeking, pathways to diagnosis, navigating the healthcare system, and impact of SPC. GPs interviews identified: experience and knowledge of SPC and referrals and decision-making. CONCLUSIONS: Insights into the pathway to diagnosis of SPC highlights the need for increased awareness of and vigilance for SPC among patients and healthcare providers (HCPs), and emotional support to manage the psychosocial burden.

The patient perspective in the era of personalized medicine: What about scanxiety?

Frequency of scanning has accelerated in the era of personalized medicine and is related, but not restricted, to the exploding number of clinical trials for new cancer treatments. Particularly in drug trials, but also in clinical practice, patients are followed up by scans frequently, which may vary from every 6 to 12 weeks until progression. The authors aimed to raise awareness for this underreported but widely present "Sword of Damocles" scan-related issue also referred to as 'scanxiety.'

Gender differences in experience and reporting of acute symptoms among cleaning staff.

BACKGROUND: Cleaning tasks pose risks of hazardous chemical exposure and adverse health effects for cleaning workers. We examined gender differences among cleaning staff in the experience of chemical-related symptoms and in reporting to supervisors. METHODS: We analyzed cross-sectional reports from 171 university hospital or campus cleaning staff on chemical exposures to cleaning products, experience of acute symptoms, reporting of symptoms to supervisors, as well as demographic and psychosocial factors (risk perception, job demand/control, supervisor/co-worker support, and safety climate). Results were analized using multivariable logistic regression, adjusting for demographic, job, and psychosocial factors. Interactions of gender and psychosocial variables were also examined. RESULTS: Men and women reported different frequencies for exposure-related tasks. Acute symptoms of chemical exposure were more prevalent in women compared with men (46.0% vs. 25.4%; adjusted odds ratio [OR] = 2.63; 95% confidence interval [CI] 1.27-5.46). Women were more concerned about exposure to cleaning chemicals (p = 0.029) but reported symptoms to their supervisor less often than men (18.5% vs. 40.6%, adjusted OR = 0.28; 95% CI 0.09-0.93). More supervisor support was significantly associated with less frequent symptom experience among women (OR = 0.83; 95% CI 0.70-0.99). Asian workers and less educated workers were less likely than others to report symptoms to supervisors. Gender differences in symptom reporting to supervisors were not explained by psychosocial factors. CONCLUSIONS: Women may have increased susceptibility or perception of symptoms from cleaning compared to men, but this may be mitigated by supervisor support. Female Asian workers with lower education may perceive more significant barriers in reporting work-related symptoms to supervisors. Further research is needed to explore factors related to underreporting.

Nursing work in the COVID-19 pandemic and repercussions for workers' mental health.

OBJECTIVE: To reflect about the work context of nursing professionals in the COVID-19 pandemic and the repercussions for these professionals' mental health. METHOD: This is a theoretical reflective study with two thematic axes: i) Pandemic by COVID-19: epidemiological condition, manifestations, and preventive measures; ii) Precariousness of work in times of pandemic and impacts on the worker's mental health. RESULTS: The COVID-19 pandemic made explicit the reflects of precariousness in the health sector. For example, the psychological suffering of nursing workers was evidenced due to the scarcity of personal protective equipment, the weakness in the description of the protocols and the flows for the effective control of infections, the long working hours, the inadequate professional training for crisis scenario and uncertainty in relation to therapeutic measures. CONCLUSION: The present article brings to light the aggravation of a scenario that raises the potential for negative impact on the mental health of nursing workers.

Factors affecting anxiety and depression in young breast cancer survivors undergoing radiotherapy.

PURPOSE: This study examined anxiety and depression, and their relationship with symptom assessment, uncertainty, social support, and stress in young breast cancer patients receiving radiotherapy. METHODS: This is a descriptive quantitative study. The participants were 126 patients under 50 years of age with breast cancer undergoing radiotherapy. RESULTS: The anxiety and depression levels were higher among those who were married (t = -2.318, p = .022), non-religious (t = 4.510, p = .005), and had a higher monthly income (F = 2.840, p = .041). The hierarchical regression analysis model included symptom assessment, uncertainty, social support, and stress, and accounted for about 49% of the variance in anxiety and depression (F = 7.688, p < .001). Additionally, uncertainty (ß = 0.304, p = .001) and stress (ß = 0.308, p = .001) were significant predictors of anxiety and depression. CONCLUSIONS: Based on the results of this study, nursing interventions are needed to reduce uncertainty and stress in order to reduce anxiety and depression in young breast cancer patients undergoing radiation treatment.

Patients' and clinicians' perspectives on item importance, scoring, and clinically meaningful differences for the Endometriosis Symptom Diary (ESD) and Endometriosis Impact Scale (EIS).

BACKGROUND: The Endometriosis Symptom Diary (ESD) and Endometriosis Impact Scale (EIS) are patient-reported outcome measures developed to evaluate efficacy in clinical trials and clinical practice. The ESD is a daily electronic diary assessing symptom severity; the EIS is a weekly electronic diary assessing symptom impact. This study explored the importance of symptoms (ESD items) and impacts (EIS domains), perspectives on scoring algorithms, and clinically important difference (CID) thresholds to inform clinical trial score interpretation. METHODS: Endometriosis patients in Germany (n = 8) and the US (n = 17), and expert clinicians (n = 4) in Germany, the US, Spain, and Finland participated in semi-structured qualitative interviews comprising structured tasks. Interview transcripts were analyzed using thematic analysis techniques. RESULTS: Quality and severity of endometriosis-associated pelvic pain varied considerably among patients; some experienced pelvic pain daily, others during menstrual bleeding (dysmenorrhea) only. Patients and clinicians ranked "worst pelvic pain" as the most meaningful pain concept assessed by the ESD, followed by constant and short-term pelvic pain. Preferences for summarizing daily pain scores over the 28-day menstrual cycle depended on individuals' experience of pain: patients experiencing pain daily preferred scores summarizing data for all 28 days; patients primarily experiencing pain during selected days, and their treating clinicians preferred scores based on the most severe pain days. Initial CID exploration for the "worst pelvic pain" 0-10 numerical rating scale (0-10 NRS) revealed that, for most patients, a 2- or 3-point reduction was considered meaningful, depending on baseline severity. Patients and clinicians ranked "emotional well-being" and "limitations in physical activities" as the most important EIS domains. CONCLUSIONS: This study informs the use of the ESD and EIS as clinically relevant measures of endometriosis symptoms and their impact. Findings from the ESD highlight the importance of individual-patient assessment of pain experience and identify "worst pelvic pain" as the most meaningful symptom assessed. Aggregating scores over the 28-day menstrual cycle may inform meaningful endpoints for clinical trials. Diverse EIS concepts (e.g. impact on emotional well-being and physical activities) are meaningful to patients and clinicians, emphasizing the importance of evaluating the impact on both to comprehensively assess treatment efficacy and decisions. TRIAL REGISTRATION: Not applicable. Qualitative, non-interventional study; registration not required.

The psychological symptoms of patients with mild symptoms of coronavirus disease (2019) in China: A cross-sectional study.

AIMS: To determine psychological symptoms of patients with mild symptoms of coronavirus disease 2019 in China and to explore the influencing factors. DESIGN: A cross-sectional study. METHODS: A convenience sample of 296 mild coronavirus disease 2019 patients were recruited from a Fangcang hospital in Wuhan, Hubei Province, from 3-5 March, 2020. Participants were assessed using a sociodemographic and clinical characteristics questionnaire, and Symptom Check List 90. The binary logistic regression was utilized to explore the influencing factors of psychological symptoms of patients with mild symptoms of coronavirus disease 2019. RESULTS: In total, 296 of 299 patients with mild symptoms of coronavirus disease 2019 participated in the study (response rate: 99.0%). The findings revealed that 12.8% patients with mild symptoms have mental health problems; the most common psychological symptoms are phobic anxiety (58.4%), paranoid ideation (50.7%) and psychoticism (40.2%). Female patients [OR = 3.587, 95% CI (1.694-7.598)] and those having physical symptoms currently [OR = 2.813, 95% CI (1.210-6.539)] are at higher risk, while those in the middle duration of hospitalization [OR = 0.278, 95% CI (0.121-0.639)] protect against mental-health problems. CONCLUSIONS: The minority of patients with mild symptoms of coronavirus disease 2019 were still suffering from psychological symptoms. Healthcare providers are recommended to pay particular attention to screening these high-risk groups (women, those in the initial stages of hospitalization and those with physical symptoms currently) and implement targeted psychological care as required. IMPACT: This study found that most patients of coronavirus disease 2019 in Fangcang hospital exhibited normal mental health at par with the general Chinese norm and the minority of them were suffering from psychological symptoms. The findings can provide a reference for healthcare providers to screen high-risk psychological symptoms groups and implement targeted psychological intervention for patients with coronavirus disease 2019.

Use of PROMIS® to screen for depression in children with arthritis.

BACKGROUND: Children with JIA may experience difficulty with health related quality of life (HRQOL). The Patient Reported Outcomes Measurement Information System (PROMIS) a patient related outcome (PRO) measure, covers HRQOL domains that include physical function, mental health, and social interactions. During initial use, we found PROMIS identified children with symptoms of depression, sometimes before they shared those feelings with parents or members of the clinic team. We studied the use of PROMIS for this purpose, and to determine what demographic, clinical, and other characteristics might be related to higher depressive symptom scores. METHODS: From March 2014 - February 2017, at each visit, all JIA patients having met ILAR classification criteria seen by M.L.M. received the PROMIS Short Form 35 v.1.0, as part of routine care. T scores were calculated from raw scores for mobility, anxiety, depressive symptoms, fatigue, peer relationships, and pain interference domains. Data extracted by optical mark recognition software were merged with electronic medical record (EMR data), extracted by Extract/Transform/Load software, including joint counts, visit age, ANA, RF, and HLA-B27 status. Mixed effects models were used to identify significant associations of independent variables with depression T scores. RESULTS: Data from 148 patients were analyzed (114 females for 435 visits, 34 males for 118 visits; 13.8 ± 2.8 years): 70 persistent oligoarthritis, 9 extended oligoarthritis, 19 ERA, 21 polyarthritis (RF-), 5 polyarthritis (RF+), 11 undifferentiated arthritis, 3 psoriatic arthritis, 10 systemic arthritis). T scores showed wide ranges within individual JIA categories, with similar mean scores for all groups. Univariate linear mixed effects models showed significant relationships to depression T scores of gender and race (males and Asian patients with lower T scores, p < .0001, p = 0.091, respectively), joint count (p = 0.002), pain interference score (p = 0.0004), and Patient and Physician Global Assessment (p = 0.004, p < .0001, respectively). No particular JIA category was associated with Depression T scores. HRQOL domains were interrelated (p < .0001), including patients reporting symptoms of depression tending also to report symptoms of anxiety. PROMIS identified 15 patients who did not otherwise report depressive symptoms, but needed referral for counseling; eight did not endorse depressive symptoms until the 2nd or 3rd visit. Only 3 patients had disease flare. Concerns besides arthritis such as parental conflict or school bullying were elicited in 7 patients during interviews with the social worker. All patients expressed being worried about their arthritis. CONCLUSION: PROMIS is useful in screening JIA patients for symptoms of depression, particularly to identify patients who might not otherwise report these symptoms. The other PROMIS domain scores are related to reporting of symptoms of depression, as is Patient and Physician Global Assessment. Future studies will use PROMIS questionnaires incorporated into the EMR, permitting data entry by tablets and an online patient portal. This will make possible comparisons of HRQOL in children with JIA to those with other chronic rheumatic and non-rheumatic diseases.

Expanding Stroke Preparedness to Vulnerable Populations: A Music Video for the Deaf Community.

Background Acute stroke treatments reduce disability after stroke, but eligibility for these treatments depends on rapid hospital arrival after symptom onset. Stroke preparedness interventions teach stroke symptoms and the importance of calling 911, thereby increasing patient eligibility for stroke treatments. Stroke preparedness interventions for the Deaf community are lacking. We sought to adapt a stroke preparedness music video, which was initially created for the hearing, for the Deaf community. Methods and Results We used a community-engaged approach, partnering with members of the Deaf community, to adapt the video over 4 months. Adaptation involved assessing the comprehensibility and appropriateness of the video and interpreting the song lyrics into American Sign Language. Conclusions We collaborated with the Deaf community to create a stroke preparedness video for the Deaf. Future research will involve refining the video and testing its efficacy to increase stroke symptom recognition and intent to call 911.

Prioritizing care for women with breast cancer based on survival stage: A study examining the association between physical symptoms, psychological distress and unmet needs.

PURPOSE: 1) To examine the differences in physical symptoms, psychological distress and unmet needs between short-term (2-5 years) and long-term (>5 years) breast cancer survivors (BCSs). 2) To explore how physical symptoms and psychological distress impact unmet needs among women in different survival stages. METHOD: Three hundred forty-nine people with breast cancer completed questionnaires. Short-term (2-5 years) and long-term (>5 years) survival stages were examined. Physical symptoms (number of physical symptoms); psychological distress, including fear of recurrence (FOR) (FOR visual analogue scale (VAS)) and depressive symptoms (Center for Epidemiological Studies-Depression Scale); and unmet needs (Chinese Cancer Survivors' Unmet Needs scale) were measured. Structural equation modelling with multi-group analysis was used to assess differences between short- and long-term survivors in the magnitude of paths. RESULTS: In total, 157 women who had survived <5 years and 192 women who had survived >5 years were recruited. The path coefficients from physical and depressive symptoms to unmet needs were similar between short-term BCSs and long-term BCSs (p > .05). However, the path coefficient from FOR to unmet needs among women who had survived for >5 years was significantly greater than that among those who had survived <5 years (p < .001). CONCLUSION: Based on these results, health care professionals should be aware of the FOR that women experience even 5 years after their initial diagnosis. Providing survivorship care plans with comprehensive side effect-related information soon after treatment is recommended.

Cough reflex testing in acute stroke: A survey of current UK service provision and speech and language therapist perceptions.

BACKGROUND: Silent aspiration (SA)-airway entry of food, drink or other material without a cough response-is common post-stroke. Clinical swallowing examination misses up to 40% of dysphagic patients with SA. This may put these patients at risk of aspiration pneumonia, prolonged length of hospital stay and increased healthcare costs. After stroke, the laryngeal cough reflex is frequently impaired with significant relationships between pneumonia rates and reduced cough strength and sensitivity. There has been a significant amount of recent interest in cough reflex testing (CRT) as a potential means to improve clinical identification of patients at risk of SA. However, there is a lack of consensus regarding the methodology and protocols for use of CRT with widely varying outcomes reported in the literature. AIMS: To provide an overview of current practice in the UK with regards to clinical use of CRT by speech and language therapists (SLTs) in acute stroke settings and to explore the perceptions regarding its potential application in clinical dysphagia management and the barriers and facilitators associated with adopting CRT in clinical practice. METHODS & PROCEDURES: A cross-sectional web-based survey was developed, piloted and delivered. The survey targeted all UK-based SLTs working in acute stroke settings. OUTCOMES & RESULTS: A total of 129 SLTs with varying levels of experience of CRT from all regions of the UK responded. Only four SLT services in the UK were reported to be currently using CRT clinically with acute stroke patients. A total of 29% of respondents who were not using CRT were considering introducing CRT into their service's dysphagia protocol. Variation was reported in the procedures and protocols. Overall, users reported improved confidence in the clinical detection of SA and felt that the introduction of CRT had improved their patient-related outcomes. Issues included difficulties procuring citric acid, implications for SLT time (including service set-up and delivery of CRT) and restricted access to instrumental assessments. CONCLUSIONS & IMPLICATIONS: This survey gives valuable insight into the current practice and perceptions of SLTs in the UK working in acute stroke settings in relation to CRT. It highlights discrepancies between reported approaches and recommendations from existing guidelines and validation studies. The variation in responses indicates a need to develop a consensus statement and further research to guide practice. What this study adds What is already known on the subject CRT is gaining popularity as a screening tool for the clinical identification of SA with acute stroke patients. However, there is a lack of consensus in the literature regarding the methodology and protocols with widely varying outcomes. Further work needs to be done to standardize its use, especially if it is to be incorporated into dysphagia protocols for use in the acute stroke setting. What this paper adds to existing knowledge This survey of SLTs working in acute stroke settings highlights variability in practice in CRT service delivery in the UK, reflecting findings from the existing CRT literature. What are the potential or actual clinical implications of this work? The findings of this study support the need for further research relating to clinical screening tests for SA and standardization of methodology and protocols for CRT use if its use is to be continued clinically.

Association of Self-reported Presenting Symptoms With Timeliness of Help-Seeking Among Adolescents and Young Adults With Cancer in the BRIGHTLIGHT Study.

Importance: Evidence regarding the presenting symptoms of cancer in adolescents and young adults can support the development of early diagnosis interventions. Objective: To examine common presenting symptoms in adolescents and young adults aged 12 to 24 years who subsequently received a diagnosis of cancer and potential variation in time to help-seeking by presenting symptom. Design, Setting, and Participants: This multicenter study is a cross-sectional analysis of the BRIGHTLIGHT cohort study, which was conducted across hospitals in England. Participants included adolescents and young adults aged 12 to 24 years with cancer. Information on 17 prespecified presenting symptoms and the interval between symptom onset and help-seeking (the patient interval) was collected through structured face-to-face interviews and was linked to national cancer registry data. Data analysis was performed from January 2018 to August 2019. Exposures: Self-reported presenting symptoms. Main Outcomes and Measures: The main outcomes were frequencies of presenting symptoms and associated symptom signatures by cancer group and the proportion of patients with each presenting symptom whose patient interval was longer than 1 month. Results: The study population consisted of 803 adolescents and young adults with valid symptom information (443 male [55%]; 509 [63%] aged 19-24 years; 705 [88%] White). The number of symptoms varied by cancer group: for example, 88 patients with leukemia (86%) presented with 2 or more symptoms, whereas only 9 patients with melanoma (31%) presented with multiple symptoms. In total, 352 unique symptom combinations were reported, with the 10 most frequent combinations accounting for 304 patients (38%). Lump or swelling was reported by more than one-half the patients (419 patients [52%; 95% CI, 49%-56%]). Other common presenting symptoms across all cancers were extreme tiredness (308 patients [38%; 95% CI, 35%-42%]), unexplained pain (281 patients [35%; 95% CI, 32%-38%]), night sweats (192 patients [24%; 95% CI, 21%-27%]), lymphadenopathy (191 patients [24%; 95% CI, 21%-27%]), and weight loss (190 patients [24%; 95% CI, 21%-27%]). The relative frequencies of presenting symptoms also varied by cancer group; some symptoms (such as lump or swelling) were highly prevalent across several cancer groups (seen in >50% of patients with lymphomas, germ cell cancers, carcinomas, bone tumors, and soft-tissue sarcomas). More than 1 in 4 patients (27%) reported a patient interval longer than 1 month; this varied from 6% (1 patient) for fits and seizures to 43% (18 patients) for recurrent infections. Conclusions and Relevance: Adolescents and young adults with cancer present with a broad spectrum of symptoms, some of which are shared across cancer types. These findings point to discordant presenting symptom prevalence estimates when information is obtained from patient report vs health records and indicate the need for further symptom epidemiology research in this population.

Perceptions of Kinesiophobia in Relation to Physical Activity and Exercise After Myocardial Infarction: A Qualitative Study.

OBJECTIVE: Physical activity and exercise are central components in rehabilitation after a myocardial infarction. Kinesiophobia (fear of movement) is a well-known barrier for a good rehabilitation outcome in these patients; however, there is a lack of studies focusing on the patient perspective. The aim of this study was to explore patients' perceptions of kinesiophobia in relation to physical activity and exercise 2 to 3 months after an acute myocardial infarction. METHODS: This qualitative study design used individual semi-structured interviews. Face-to-face interviews were conducted with 21 patients post-myocardial infarction who were screened for kinesiophobia (≥32 on the Tampa Scale for Kinesiophobia Heart). The interviews were transcribed and analyzed according to an inductive content analysis. RESULTS: An overarching theme was defined as "coping with fear of movement after a myocardial infarction-a dynamic process over time" comprising 2 subthemes and explaining how coping with kinesiophobia runs in parallel processes integrating the patient's internal process and a contextual external process. The 2 processes are described in a total of 8 categories. The internal process was an iterative process governed by a combination of factors: ambivalence, hypervigilance, insecurity about progression, and avoidance behavior. The external process contains the categories of relatives' anxiety, prerequisites for feeling safe, information, and the exercise-based cardiac rehabilitation program. CONCLUSION: Coping with fear of movement after a myocardial infarction is a dynamic process that requires internal and external support. To further improve cardiac rehabilitation programs, person-centered strategies that support the process of each person-as well as new treatment strategies to reduce kinesiophobia-need to be elaborated. IMPACT: Patients with a myocardial infarction were found to be ambivalent about how they expressed their fear of movement; therefore, it is crucial for physical therapists to acknowledge signs of fear by listening carefully to the patient's full story in addition to using adequate self-reports and tests of physical fitness. These results will inform the design, development, and evaluation of new treatment strategies, with the overall aim of reducing kinesiophobia and increasing physical activity and participation in exercise-based cardiac rehabilitation.

A Multilevel Modeling Approach to Examine Incongruent Illness Appraisals in Family Care Dyads Over Time.

Over the past two decades, there has been movement toward a dyadic perspective of the illness experience. Although multilevel models have led to great insights into how dyads are affected by illness as family units, these models are still underutilized for understanding incongruent illness appraisals. Such incongruent appraisals can have implications for how the dyad collaborates to manage illness, the health of the dyad, and clinical outcomes. The focus of this article is to describe and promote the application of multilevel models to longitudinal dyadic data to understand incongruent illness appraisals over time. In particular, we present a data exemplar so researchers can apply these models to their own data and clinical questions to understand the ways care dyads converge and diverge in their appraisals and determine factors associated with such variability. We comment on the implications and extensions of these models for family nursing research and practice.