Epidemiological study about the mental state of patients after a pulmonary embolism or deep venous thrombosis event.

Venous thromboembolism (VTE) occurs frequently and represents a serious threat to patient health. However, its effects on mental health have not been studied sufficiently. The objective of this study was to investigate whether VTE alters the patients' mental state. We gathered questionnaire data on 100 patients (59 men, 41 women; age ranging from 24 to 85 years) concerning psychological symptoms and body image. Our results show that after a VTE, patients develop psychological symptoms, some of which persist for more than 2 years. Examples of those symptoms include depression, intrusion, and increased scrutiny of the body. Intrusion (flashbacks, nightmares, and other traumatic sensations of reliving the thrombotic event) affected 69% of patients and may lead to social isolation, occasionally including loss of employment. Depression affected more than 50% of patients. Productivity typically decreases, and body functionality and feeling of health changed in 34-76% of patients. However, anxiety, disordered impulse control, and maladjustment were less frequent (40% or less), and patients' emotional attitude to their bodies (liking their bodies or being angry with their bodies, feelings of shame and attractiveness) tended not to change over time. Nevertheless, we feel it may be advisable to identify patients with relevant psychological changes after VTE by means of a short evidence-based questionnaire and to offer them psychological treatment in order to improve management and quality of life of these patients. The goal is, therefore, to develop diagnostic and therapeutic recommendations.

Post Pulmonary Embolism Syndrome

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The German version of the Pulmonary Embolism Quality of Life (PEmb-QoL) questionnaire: reliability, responsiveness and structural validity.

PURPOSE: The Pulmonary Embolism Quality of Life (PEmb-QoL) questionnaire is the only existing disease-specific instrument for measuring quality of life after pulmonary embolism (PE). It includes six dimensions: frequency of complaints, limitations in activities of daily living, work-related problems, social limitations, intensity of complaints and emotional complaints. The present study aimed to determine the psychometric properties including responsiveness and structural validity of the German version. METHODS: The analysis used data from participants of the LEA cohort study at University Hospital Augsburg. The PEmb-QoL was administered via postal surveys 3, 6 and 12 months post-PE. Internal consistency and test-retest reliability were evaluated by calculating Cronbach's alpha and intra-class correlation coefficients (ICC). Standardized response means (SRM) were calculated for investigating responsiveness. For evaluating the fit of the factor structure, confirmatory factor analysis (CFA) was conducted. RESULTS: Overall, we used data from 299 patients 3 months after PE. Cronbach's alpha (0.87-0.97) and ICC (0.53-0.90) were in an acceptable to good range. SRM scores showed good responsiveness of all dimensions. CFA revealed the four-factor model including one general factor to have a good model fit. CONCLUSION: Despite existing floor effect, most standard criteria of reliability and validity were met and indications for appropriateness of the PEmb-QoL summary score could be found. Apart from some restrictions concerning the factor structure and the dimension of social limitations, our results support the use of the PEmb-QoL questionnaire for evaluating PE-specific quality of life. Future studies should seek replication in different samples to ensure generalizability of the findings.

Quality of Life 3 and 12 Months Following Acute Pulmonary Embolism: Analysis From a Prospective Multicenter Cohort Study.

BACKGROUND: Few data are available on the long-term course and predictors of quality of life (QoL) following acute pulmonary embolism (PE). RESEARCH QUESTION: What are the kinetics and determinants of disease-specific and generic health-related QoL 3 and 12 months following an acute PE? STUDY DESIGN AND METHODS: The Follow-up after Acute Pulmonary Embolism (FOCUS) study prospectively followed up consecutive adult patients with objectively diagnosed PE. Patients were considered for study who completed the Pulmonary Embolism Quality of Life (PEmb-QoL) questionnaire at predefined visits 3 and 12 months following PE. The course of disease-specific QoL as assessed using the PEmb-QoL and the impact of baseline characteristics using multivariable mixed effects linear regression were studied; also assessed was the course of generic QoL as evaluated by using the EuroQoL Group 5-Dimension 5-Level utility index and the EuroQoL Visual Analog Scale. RESULTS: In 620 patients (44% women; median age, 62 years), overall disease-specific QoL improved from 3 to 12 months, with a decrease in the median PEmb-QoL score from 19.4% to 13.0% and a mean individual change of -4.3% (95% CI, -3.2 to -5.5). Female sex, cardiopulmonary disease, and higher BMI were associated with worse QoL at both 3 and 12 months. Over time, the association with BMI became weaker, whereas older age and previous VTE were associated with worsening QoL. Generic QoL also improved: the mean ± SD EuroQoL Group 5-Dimension 5-Level utility index increased from 0.85 ± 0.22 to 0.87 ± 0.20 and the visual analog scale from 72.9 ± 18.8 to 74.4 ± 19.1. INTERPRETATION: In a large cohort of survivors of acute PE, the change of QoL was quantified between months 3 and 12 following diagnosis, and factors independently associated with lower QoL and slower recovery of QoL were identified. This information may facilitate the planning and interpretation of clinical trials assessing QoL and help guide patient management. CLINICAL TRIAL REGISTRATION: German Clinical Trials Registry (Deutsches Register Klinischer Studien: www.drks.de); No.: DRKS00005939.

The lived experience with pulmonary embolism: A qualitative study using focus groups.

BACKGROUND: Pulmonary embolism (PE) is the third most common cause of cardiovascular death. However, comprehensive knowledge on the lived experience of patients with PE is lacking so far. The objective of this study was to fill this gap using a qualitative research approach. METHODS: A qualitative study using focus group methodology was conducted. Sampling of patients followed the maximum variation strategy. Sample size was determined by saturation. The patients were presented eight questions, which asked for their experiences in terms of prodromal and acute symptoms, changes of physical and mental well-being, daily life and social life, and experiences with PE medication and treatment. The focus group discussions were digitally recorded and transcribed verbatim. The constant comparative method was used for data analysis. RESULTS: Five focus groups with n = 18 participants (50% female, median age 56 years) in total were performed. Major identified themes were: (1) progressing dyspnea and pain as major prodromal and acute symptoms, (2) persisting dyspnea and loss of physical fitness, (3) depression, fears and threat monitoring, (4) exhaustion which improves over time, (5) social contacts ranging between ignorance and overprotection, (6) anticoagulants as lifesavers and threat, (7) quick versus delayed diagnosis, (8) left alone by health care providers, and (9) unsupportive health care system. CONCLUSION: PE may be associated with considerable mental health problems and the existing health care system is experienced as not supportive by a number of patients. Further results from larger, quantitative studies are needed to estimate the extent of the identified problems.

Long-term health-related quality of life after surgery in patients with chronic thromboembolic pulmonary hypertension.

PURPOSE: To assess the dynamic of various health-related quality of life (HRQoL) parameters 3 years after pulmonary thromboendarterectomy (PTE), and to identify factors affecting HRQoL parameters in patients with chronic thromboembolic pulmonary hypertension (CTEPH) in the long-term follow-up after surgery. METHODS: This prospective cohort study included 128 patients with CTEPH before and after the PTE (3 year follow-up). The HRQoL was examined using the Short-Form 36 Health Survey Questionnaire (SF-36). RESULTS: In patients with CTEPH 3 years after PTE, a significant improvement in all the HRQoL parameters. The summary indicators of the physical and mental components of health remained at the same level as 1 year after the PTE and did not exceed 50 points. The residual pulmonary hypertension was a leading factor limiting parameters of physical and mental health 3 years after a PTE. In addition, the parameters of physical activity were adversely affected by age and the age-adjusted Charlson Comorbidity Index. CONCLUSIONS: In the study group of patients with CTEPH, PTE contributes to a significant improvement in all HRQoL parameters, which observed both 1 year and 3 years after surgery. The leading factor adversely affecting the physical and emotional components of health in the long-term period after PTE was residual pulmonary hypertension recorded in the early postoperative period. In addition, some physical HRQoL parameters are affected by age and age-adjusted Charlson Comorbidity Index.

Awareness and Perception of Thromboembolism and Thromboprophylaxis among Hospitalized Patients in Jordan.

BACKGROUND AND OBJECTIVE: Despite the established importance of thromboprophylaxis in patients with Venous Thromboembolism (VTE), a limited number of studies have assessed the awareness of VTE and thromboprophylaxis therapy among the affected patients. The aim of the current study was to assess awareness and to explore variables associated with awareness about VTE and its thromboprophylaxis. METHODS: A cross-sectional study was conducted on hospitalized patients who received thromboprophylaxis (5000 units of heparin subcutaneously (SC) q8-12h, or 30-40 mg of enoxaparin SC once daily). In addition to the sociodemographic variables, awareness and perception of VTE and its thromboprophylaxis were assessed using a validated questionnaire. Multiple logistic regressions were conducted to build a model of variables significantly associated with VTE awareness. RESULTS: A total of 225 patients participated in the study, with only 38.2% and 22.2% of the participants being aware of Deep Vein Thrombosis (DVT) and Pulmonary Embolism (PE) respectively. Logistic regression showed that the participants with low educational level had 3.046 value, with the odds being not aware of DVT or PE compared with participants with high educational level. Participants without a personal history of VTE had 7.374 value, with the odds being not aware of DVT or PE compared with those who had a personal history of VTE. Participants who had a negative perception of VTE had 2.582 value, with the odds being not aware of DVT or PE compared with participants who had a positive perception and those who did not have any information about DVT or PE had 13.727 value, with the odds being not aware of DVT or PE. CONCLUSION: The findings reveal that there is a lack of awareness about VTE and its thromboprophylaxis among the study participants. Patients with lower educational level and those with no history of previous VTE need awareness improvement about VTE and its thromboprophylaxis. Clinical Pharmacists need to focus on providing information about VTE and improving patients' perception about VTE and its thromboprophylaxis with the aim of improving the awareness about VTE, and hence the better health outcome.

Changes in Mental Status and Dyspnea Followed by Pulseless Electrical Activity.

Following back surgery a man developed extensive pulmonary emboli that proved fatal.

Cross-cultural adaptation of the Cambridge Pulmonary Hypertension Outcome Review for use in patients with pulmonary hypertension in Colombia.

OBJECTIVE: To conduct a cross-cultural adaptation of the Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR) as an instrument to evaluate the perception of symptoms, functional limitation, and health-related quality of life (HRQoL) in subjects diagnosed with pulmonary arterial hypertension (PAH) or chronic thromboembolic pulmonary hypertension (CTEPH) in Colombia. METHODS: The adaptation process involved 3 phases: translation, cognitive debriefing interviews, and a validation survey. To evaluate the psychometric properties, we recruited individuals ≥ 18 years of age who had been diagnosed with PAH or CTEPH to take part in the latter two stages of the adaptation process. All individuals were being followed on an outpatient basis by the pulmonary hypertension programs at Hospital Universitario San Ignacio, Fundación Clínica Shaio,and Clínicos IPS, all located in the city of Bogotá, Colombia. RESULTS: A Spanish-language version of the CAMPHOR was developed for use in Colombia. The internal consistency was excellent for the symptoms, functioning, and quality of life scales (Cronbach's alpha coefficients of 0.92, 0.87, and 0.93, respectively). Test-retest reliability was above 0.70. The evaluation of the convergent validity and known group validity of the CAMPHOR scales confirmed that there were moderate and strong correlations with the related constructs of the Medical Outcomes Study 36-item Short-Form Health Survey, version 2, as well as showing their capacity to discriminate disease severity. CONCLUSIONS: The Spanish-language version of the CAMPHOR developed for use in Colombia was the result of a translation and cultural adaptation process that allows us to consider it equivalent to the original version, having shown good psychometric properties in the study sample. Therefore, its use to assess the impact of interventions on the HRQoL of patients with PAH or CTEPH is recommended, in research and clinical practice.

Quality of life and functional limitations after pulmonary embolism and its prognostic relevance.

BACKGROUND: While the importance of patients' quality of life (QoL) in chronic cardiac or pulmonary disease is uncontroversial, the burden of an acute pulmonary embolism (PE) on QoL has received little attention thus far. OBJECTIVES: We aimed to validate the German PEmb-QoL questionnaire, identify associations between QoL and clinical/functional parameters, and investigate the prognostic relevance of QoL for long-term survival in survivors of an acute PE episode. PATIENTS/METHODS: Patients were invited for a clinical follow-up visit including assessment of QoL using the German PEmb-QoL questionnaire 6 months after an objectively confirmed PE at a single center. Internal consistency reliability, construct-related validity, and regressions between PEmb-QoL and clinical patient-characteristics were assessed using standard scale construction techniques. RESULTS: Overall, 101 patients [median age, 69 ([interquartile range] IQR 57-75) years; women, 48.5%] were examined 208 (IQR 185-242) days after PE. Internal consistency reliability and construct-related validity of the PEmb-QoL questionnaire were acceptable. As many as 47.0% of patients reported dyspnea, 27.5% had right ventricular (RV) dysfunction on transthoracic echocardiography (TTE), and 25.3% were diagnosed with post-PE impairment (PPEI) at 6-month follow-up. Furthermore, 15.9% of patients were diagnosed with depression 6 months after an acute PE. The QoL was affected by dyspnea, preexisting pulmonary disease, and PPEI, and a reduced QoL was associated with an increased risk for long-term mortality after an observation period of 3.6 years. CONCLUSIONS: The German PEmb-QoL questionnaire is a reliable instrument for assessing QoL 6 months after PE. The QoL was affected by dyspnea, preexisting pulmonary disease, and PPEI and was associated with long-term mortality.

Coping with everyday life and physical activity in the aftermath of an acute pulmonary embolism: A qualitative study exploring patients' perceptions and coping strategies.

INTRODUCTION: There is an increasing awareness that patients with acute pulmonary embolism (APE) suffer long-term consequences like fatigue, anxiety, and reduced physical capacity. However, we lack knowledge on how patients manage everyday life and physical activity following an APE. The study aimed to explore how patients experience and cope with daily life and physical activity in the first year following an APE. MATERIALS AND METHODS: Semi-structured individual interviews were performed with 16 patients, 6-12 months after a first-time APE event. The methodological framework for the analysis was interpretive description. RESULTS: Most participants had managed to return to their daily routines at the time of the interview, although some struggled more than others. They experienced their daily life and well-being to be negatively affected by fatigue, anxious thoughts and bodily hypervigilance, and were concerned about themselves, their family, friends and life situation. In many cases, they lacked advice from health professionals. Participants used various strategies for re-engaging in everyday life and physical activities, reflecting their physical and mental resources, contextual support, and different life situation. One central theme was the challenge of coming to terms with a more vulnerable identity, and adjusting this identity to established family and work roles. CONCLUSIONS: Most participants had managed to resume their everyday life 6-12 months after the APE event, but were still limited in their daily activities and found it difficult to sustain a sufficient level of physical activity. They described different barriers and facilitators, which should be addressed in future rehabilitation interventions.

[Patients' perspective of living with PAH or CTEPH in Sweden]. / Patientens perspektiv på att leva med PAH eller CTEPH i Sverige - Enkätstudie visar på betydelsen av adekvat och upprepad information.

For patients living with chronic conditions, the daily life will change due to symptoms, drug treatment, and psychosocial factors caused by the disease. Our studies show that Swedish patients with PAH or CTEPH are satisfied with the information they have received, but still have a wish for more. Therefore, it is important to repeat the information on a regular basis and to make sure that patients have understood and remember the messages. In order to increase the knowledge about their disease, improve compliance with treatment and quality of life, patients and next of kin should continuously be informed by the multidisciplinary team at the PAH/CTEPH-specialist care centers.

Health-related quality of life and mortality in patients with pulmonary embolism: a prospective cohort study in seven European countries.

PURPOSE: Little is known about the quality of life following pulmonary embolism (PE). The aim of the study was to assess the 12-month illness burden in terms of health-related quality of life (HrQoL) and mortality, in relation to differences in patient characteristics. METHODS: The PREFER in VTE registry, a prospective, observational study conducted in seven European countries, was used. Within 2 weeks following an acute symptomatic PE, patients were recruited and followed up for 12 months. Associations between patient characteristics and HrQoL (EQ-5D-5L) and mortality were examined using a regression approach. RESULTS: Among 1399 PE patients, the EQ-5D-5L index score at baseline was 0.712 (SD 0.265), which among survivors gradually improved to 0.835 (0.212) at 12 months. For those patients with and without active cancer, the average index score at baseline was 0.658 (0.275) and 0.717 (0.264), respectively. Age and previous stroke were significant factors for predicting index scores in those with/without active cancer. Bleeding events but not recurrences had a noticeable impact on the HrQoL of patients without active cancer. The 12-month mortality rate post-acute period was 8.1%, ranging from 1.4% in Germany, Switzerland, and Austria to 16.8% in Italy. Mortality differed between patients with active cancer and those without (42.7% vs. 4.7%). CONCLUSION: PE is associated with a substantial decrease in HrQoL at baseline which normalizes following treatment. PE is associated with a high mortality rate especially in patients with cancer, with significant country variation. Bleeding events, in particular, impact the burden of PE.

Massive pulmonary embolism presenting initially as acute psychosis.

This is a case of a 68-year-old man with Parkinson's disease who was admitted in the psychiatry floor for new-onset aggressive behaviour and hallucinations. On the third day of hospitalisation, he suddenly developed dyspnoea followed by an ECG showing atrial fibrillation with rapid ventricular response. A few seconds later, he went into cardiac arrest; he was resuscitated after multiple rounds of Advanced Cardiovascular Life Support. A transthoracic echo showed hypokinetic and enlarged right ventricle. A CT Chest showed a saddle embolus. Patient was provided with systemic thrombolysis, which led to an improvement in his haemodynamic status. Interestingly, his psychotic symptoms also improved. In this paper, we present and review how pulmonary embolism can be associated with acute psychosis.

Long-term psychosocial impact of venous thromboembolism: a qualitative study in the community.

OBJECTIVES: Venous thromboembolism (VTE) is a serious, potentially traumatic, life-threatening condition and a major cause of mortality and morbidity. The aim of this study was to obtain detailed understandings of the impact of VTE and examine individual's experiences over the first year since a first-time VTE. DESIGN: A longitudinal qualitative interview study using inductive thematic analysis. This study presents follow-up data for 11 participants, first interviewed 6 months following a first-time VTE. SETTING: Outpatients recruited from a community haematology clinic in a UK District General Hospital. PARTICIPANTS: Eleven participants (seven females and four males) recruited from a community haematology clinic. Participants had experienced a first-time VTE and participated in qualitative interviews 3 months previously. INTERVENTION: Audio-recorded semistructured interviews with a sample of 11 participants who experienced a first-time deep vein thrombosis or pulmonary embolism within the previous year. Interviews were transcribed and analysed using inductive thematic analysis. RESULTS: Four overarching themes were identified: life changing and forever changed, the trauma of care, 'thrombo-neuroses' and through adversity comes growth. Theme content varied according to age and developmental stage, presence of VTE symptoms and the experience of diagnosis. CONCLUSIONS: The data demonstrate the psychosocial impact of VTE and its diagnosis as physically and psychologically challenging, and individuals reported being forever changed by the experience. Participants' reported continued high levels of trauma and anxiety symptoms, triggered by physical (eg, symptoms) and psychological (eg, health anxiety, negative emotions) reminders of VTE. Wider primary care service issues including misdiagnosis maintained negative emotions and health anxiety with implications for relationships with professionals. Targeted clinical interventions to better identify and support individuals at risk of distress and enhance psychological well-being and reduce distress are discussed.

Cross-cultural adaptation of the Cambridge Pulmonary Hypertension Outcome Review for use in patients with pulmonary hypertension in Colombia / Adaptación transcultural de la escala Cambridge Pulmonary Hypertension Outcome Review en pacientes con hipertensión pulmonar en Colombia

ABSTRACT Objective: To conduct a cross-cultural adaptation of the Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR) as an instrument to evaluate the perception of symptoms, functional limitation, and health-related quality of life (HRQoL) in subjects diagnosed with pulmonary arterial hypertension (PAH) or chronic thromboembolic pulmonary hypertension (CTEPH) in Colombia. Methods: The adaptation process involved 3 phases: translation, cognitive debriefing interviews, and a validation survey. To evaluate the psychometric properties, we recruited individuals ≥ 18 years of age who had been diagnosed with PAH or CTEPH to take part in the latter two stages of the adaptation process. All individuals were being followed on an outpatient basis by the pulmonary hypertension programs at Hospital Universitario San Ignacio, Fundación Clínica Shaio,and Clínicos IPS, all located in the city of Bogotá, Colombia. Results: A Spanish-language version of the CAMPHOR was developed for use in Colombia. The internal consistency was excellent for the symptoms, functioning, and quality of life scales (Cronbach's alpha coefficients of 0.92, 0.87, and 0.93, respectively). Test-retest reliability was above 0.70. The evaluation of the convergent validity and known group validity of the CAMPHOR scales confirmed that there were moderate and strong correlations with the related constructs of the Medical Outcomes Study 36-item Short-Form Health Survey, version 2, as well as showing their capacity to discriminate disease severity. Conclusions: The Spanish-language version of the CAMPHOR developed for use in Colombia was the result of a translation and cultural adaptation process that allows us to consider it equivalent to the original version, having shown good psychometric properties in the study sample. Therefore, its use to assess the impact of interventions on the HRQoL of patients with PAH or CTEPH is recommended, in research and clinical practice.

RESUMEN Objetivo: Realizar la adaptación transcultural del cuestionario Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR) como instrumento para evaluar la percepción de síntomas, la limitación funcional y la calidad de vida relacionada con la salud (CVRS) en una población colombiana de sujetos con diagnóstico de hipertensión arterial pulmonar (HAP) e hipertensión pulmonar tromboembólica crónica (HPTEC). Métodos: Estudio de validación de pruebas de determinación de precisión y propiedades psicométricas desarrollado en 3 fases: traducción con adaptación cultural mediante panel bilingüe, aplicación inicial y general para la evaluación de características psicométricas en una cohorte de pacientes > 18 años, con diagnóstico de HAP e HPTEC, en seguimiento por consulta externa de programas de hipertensión pulmonar del Hospital Universitario San Ignacio, Fundación Clínica Shaio y Clínicos IPS. Resultados: Se obtuvo una versión en castellano de la escala CAMPHOR. La consistencia interna observada para los dominios de síntomas, actividades y calidad de vida (valores del coeficiente alfa de Cronbach de 0,92, 0,87 y 0,93 respectivamente) fue adecuada. La confiabilidad prueba-reprueba estuvo por encima de 0,70 y la evaluación de la validez convergente y de grupos conocidos de las subescalas confirmó las correlaciones moderadas y fuertes con constructos relacionados del SF36v2, así como la capacidad discriminatoria según la severidad de la enfermedad. Conclusiones: La versión en castellano de la escala CAMPHOR presentó un proceso de traducción lingüística y adaptación cultural que permite considerarla equivalente a la versión original, demostrando adecuadas propiedades psicométricas en la muestra estudiada. Por ello se recomienda su utilización tanto en la investigación como en la práctica clínica, con el fin de evaluar el impacto de las intervenciones en la CVRS.

Determining the minimal clinically important difference for the PEmbQoL questionnaire, a measure of pulmonary embolism-specific quality of life.

Essentials The minimal clinically important difference (MCID) for PEmbQoL has not yet been determined. We estimated the MCID for PEmbQoL and its subscales via anchor- and distribution-based approaches. Our results indicate that MCID for PEmbQoL appears to be 15 points. Our work enables interpretation of changes or differences in PEmbQoL. SUMMARY: Background Pulmonary embolism (PE) reduces quality of life (QOL). The PEmbQoL questionnaire, a PE-related QOL measure, was recently developed and validated and has been used to quantify disease-specific QOL in clinical studies of patients with PE. However, to date, interpretation of PEmbQoL scores has been limited by a lack of information on the minimal clinically important difference (MCID) of this measure. Objective To determine the MCID for PEmbQoL and its subscales using anchor-based and distribution-based approaches. Methods We analyzed data from the ELOPE Study, a prospective, multicenter cohort study of long-term outcomes after a first episode of acute PE. At baseline and 1, 3, 6 and 12 months after PE, we measured generic QOL (SF-36), PE-specific QOL (PEmbQoL) and dyspnea severity (UCSD Shortness of Breath Questionnaire). We used time-varying repeated-measures mixed-effect models to estimate anchor-based MCID and effect sizes to estimate distribution-based MCID. Results Eighty-two patients participated in this sub-study. Their mean age was 49.4 years, 60% were male and 84% had PE diagnosed in an outpatient setting. Using both anchor- and distribution-based approaches, the MCID for PEmbQoL appears to be 15 points. Based on this MCID, 42%, 59%, 66% and 75% of patients experienced at least one MCID unit of improvement in PEmbQoL from baseline to 1, 3, 6 and 12 months, respectively. Conclusion Our results provide new information on the MCID of PEmbQoL, a PE-specific QOL questionnaire that can be used by researchers and clinicians to measure and interpret changes in PE-specific QOL over time, or as an outcome in clinical trials.

Determinants of Health-Related Quality of Life 1 Year after Pulmonary Thromboendarterectomy.

BACKGROUND: Pulmonary thromboendarterectomy (PTE) is a recognized treatment for patients with chronic thromboembolic pulmonary hypertension (CTEPH), with good long-term hemodynamic results. The aim of this study was to test the hypothesis that the dynamics of health-related quality of life (QoL), 1 year after PTE, depend both on the clinical determinants associated with the underlying disease and the adverse events occurring in the early postoperative period. METHODS: This prospective cohort study included 136 patients with CTEPH. All patients before and after PTE (1-year follow-up) were examined in terms of QoL, by using the Short Form 36 Health Survey Questionnaire. RESULTS: One year after PTE, a significant improvement in the QoL of patients was observed in all subscales of the Short Form 36 Health Survey Questionnaire, except in the general health scale. Multivariate analysis showed that the predictors adversely affecting the dynamics of QoL after PTE were the presence of comorbidities (such as chronic obstructive pulmonary disease [COPD] and coronary artery disease) and early postoperative complications (specific ones for this category of patients are residual pulmonary hypertension and neurological complications, and nonspecific ones are atrial fibrillation and heart failure). CONCLUSIONS: The determinants that affect the dynamics of QoL 1 year after PTE in patients with CTEPH were the presence of comorbidities (COPD and coronary artery disease) and adverse events in the early postoperative period (residual pulmonary hypertension, neurological complications, atrial fibrillation, and heart failure).

Validating the Chinese version of the PEmb-QoL questionnaire: A measure for quality of life assessment after pulmonary embolism.

PURPOSE: The purpose of the study was to test the psychometrical properties of the Chinese version of the Pulmonary Embolism Quality of Life (PEmb-QoL) questionnaire. METHODS: We translated the English version of the PEmb-QoL into Chinese. Patients at various periods after pulmonary embolism diagnosed at Peking Union Medical College Hospital between May 2016 and Dec 2017 were invited to complete the questionnaire. Standard psychometrical tests and criteria were used to evaluate the acceptability, reliability and validity of the Chinese version of the PEmb-QoL. RESULTS: A total of 108 participants completed the questionnaire and were included for further analysis. The Chinese version of the PEmb-QoL showed good internal consistency (Crohnbach's alpha ranging from 0.643 to 0.930), inter-item correlations (0.369-0.599), and item-total correlations (0.341-0.893). Test-retest reliability was also good (0.759-0.896). Moderate correlations between PEmb-QoL and SF-36 dimensions, and low correlations between PEmb-QoL and clinical characteristics supported convergent and discriminant validity. Exploratory factor analysis suggested four underlying dimensions: work-related problems, daily activity limitations, emotional complaints and frequency and intensity of complaints. CONCLUSIONS: The Chinese version of the PEmb-QoL questionnaire is both valid and reliable for measuring quality of life in patients at various periods after pulmonary embolism, proving the universality of this disease-specific questionnaire.