ABSTRACT
INTRODUCTION: Patients with pulmonary hypertension (PH) have an impaired functional capacity and poor health-related quality of life (HRQoL). The one-minute sit-to-stand test (1-min STST) can be used for the assessment of functional capacity. AIMS: Our aim was to evaluate the 1-min STST performance and its association with patient-reported HRQoL in patients with PH. METHODS: We prospectively assessed functional capacity in 98 PH patients (mean age 66 ± 15 years, 55% female) using the 1-min STST. Patients had to stand up and sit down from a chair as many times as possible within one minute. Patients' HRQoL was evaluated with the Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR) questionnaire, which consists of the three subcategories symptoms, activities and quality of life (QoL). RESULTS: We observed a significant correlation of the 1-min STST performance with all HRQoL subcategories assessed with the CAMPHOR questionnaire: A lower number of 1-min STST repetitions correlated with more symptoms (rs = -.398, p < .001), worse functioning (rs = -.551, p < .001) and a decreased QoL (rs = -.407, p < .001). Furthermore, in the multivariable linear regression analysis, adjusted for age, sex, body mass index (BMI) and mean pulmonary artery pressure (mPAP), lower 1-min STST performance was an independent predictor for worse symptoms (est. ß = -0.112, p = .003), activities (est. ß = -0.198, p < .001) and QoL (est. ß = -0.130, p < .001) assessed with the CAMPHOR questionnaire. CONCLUSION: Our results indicate that regardless of age, sex, BMI and mPAP the 1-min STST performance is associated with all CAMPHOR HRQoL subcategories in patients with PH. Therefore, the 1-min STST performance might be a new option to assess functional capacity correlated to HRQoL in patients with PH.
Subject(s)
Hypertension, Pulmonary , Quality of Life , Humans , Female , Male , Hypertension, Pulmonary/physiopathology , Hypertension, Pulmonary/psychology , Hypertension, Pulmonary/diagnosis , Aged , Middle Aged , Surveys and Questionnaires , Exercise Test , Prospective StudiesABSTRACT
BACKGROUND: The adverse effects of pulmonary arterial hypertension (PAH) on physical, emotional, and health-related quality of life (HRQoL) remain primarily unrecognized, especially in resource-limited settings. OBJECTIVES: This study aims to characterize the HRQoL of patients with PAH in this area and also identify the potential role of clinically relevant characteristics, including the 6-min walk distance test (6MWD), WHO-Functional Classification (WHO-FC), and mental health in the occurrence of lowering quality of life. DESIGN: This was a cross-sectional observational study. METHODS: Inpatients with PAH were chosen from a tertiary hospital located in Gansu province, China. All participants were interviewed face-by-face by using questionnaires, including items from the 36-Item Short Form Health Survey (SF-36), the self-rating anxiety scale, and the self-rating depression scale. Data on demographic and clinically relevant characteristics, including WHO-FC and 6MWD, were also collected by tracing medical recorders. Multiple linear regression analysis was used to determine the association between demographic, clinically relevant characteristics data, and physical component summary (PCS) or mental component summary (MCS) in SF-36. RESULTS: Of the 152 participants, SF-36 differed significantly from Chinese norms in all eight domains, with role-physical (21.55 ± 9.87) less than one-third of the norm (88.79 ± 28.49). Multiple linear regression results showed that the factors with the greatest impact on PCS were anxiety scores (ß = -0.22, p = 0.001), followed by WHO-FC (ß = -0.16, p = 0.014) and 6MWD (ß = 0.15, p = 0.036). The factors with the greatest impact on MCS were WHO-FC (ß = -0.30, p < 0.001), followed by anxiety (ß = -0.23, p = 0.001) and depression scores (ß = -0.16, p = 0.013). CONCLUSION: HRQoL was substantially reduced among PAH patients in the resource-limited area, mainly the physiological functions. WHO-FC and anxiety scores were independently associated with both PCS and MCS in SF-36. Clinicians should make reasonable rehabilitation programs and plans for patients according to their cardiac function grade and the severity of clinical symptoms. In addition, psychological interventions should also be taken, especially for those with anxiety symptoms, so as to improve their HRQoL.
Subject(s)
Mental Health , Quality of Life , Humans , Male , Female , Middle Aged , Cross-Sectional Studies , China , Adult , Aged , Walk Test , Hypertension, Pulmonary/physiopathology , Hypertension, Pulmonary/psychology , Hypertension, Pulmonary/diagnosis , Surveys and Questionnaires , Anxiety/epidemiology , Anxiety/diagnosis , Pulmonary Arterial Hypertension/physiopathology , Pulmonary Arterial Hypertension/psychology , Pulmonary Arterial Hypertension/diagnosis , Depression/epidemiology , Depression/diagnosisABSTRACT
BACKGROUND: Health-related quality of life (HRQOL) is frequently impaired in pulmonary arterial hypertension. However, little is known about HRQOL in other forms of pulmonary hypertension (PH). RESEARCH QUESTION: Does HRQOL vary across groups of the World Symposium on Pulmonary Hypertension (WSPH) classification system? STUDY DESIGN AND METHODS: This cross-sectional study included patients with PH from the Pulmonary Vascular Disease Phenomics (PVDOMICS) cohort study. HRQOL was assessed by using emPHasis-10 (e-10), the 36-item Medical Outcomes Study Short Form survey (physical component score [PCS] and mental component score), and the Minnesota Living with Heart Failure Questionnaire. Pearson correlations between HRQOL and demographic, physiologic, and imaging characteristics within each WSPH group were tested. Multivariable linear regressions compared HRQOL across WSPH groups, adjusting for demographic characteristics, disease prevalence, functional class, and hemodynamics. Cox proportional hazards models were used to assess associations between HRQOL and survival across WSPH groups. RESULTS: Among 691 patients with PH, HRQOL correlated with functional class and 6-min walk distance but not hemodynamics. HRQOL was severely depressed across WSPH groups for all measures except the 36-item Medical Outcomes Study Short Form survey mental component score. Compared with Group 1 participants, Group 2 participants had significantly worse HRQOL (e-10 score, 29 vs 24 [P = .001]; PCS, 32.9 ± 8 vs 38.4 ± 10 [P < .0001]; and Minnesota Living with Heart Failure Questionnaire score, 50 vs 38 [P = .003]). Group 3 participants similarly had a worse e-10 score (31 vs 24; P < .0001) and PCS (33.3 ± 9 vs 38.4 ± 10; P < .0001) compared with Group 1 participants, which persisted in multivariable models (P < .05). HRQOL was associated in adjusted models with survival across Groups 1, 2, and 3. INTERPRETATION: HRQOL was depressed in PH and particularly in Groups 2 and 3 despite less severe hemodynamics. HRQOL is associated with functional capacity, but the severity of hemodynamic disease poorly estimates the impact of PH on patients' lives. Further studies are needed to better identify predictors and treatments to improve HRQOL across the spectrum of PH.
Subject(s)
Hypertension, Pulmonary , Quality of Life , Humans , Female , Male , Middle Aged , Hypertension, Pulmonary/physiopathology , Hypertension, Pulmonary/psychology , Cross-Sectional Studies , Aged , Surveys and QuestionnairesABSTRACT
BACKGROUND: Sarcoidosis-associated pulmonary hypertension (SAPH) is a prevalent and serious complication of sarcoidosis. No SAPH-specific self-report instruments for assessing SAPH symptoms and their impact on patients are available to date. This study sought to determine whether the Pulmonary Arterial Hypertension-Symptoms and Impact (PAH-SYMPACT™) questionnaire is suitable for use in patients with SAPH. METHODS: Patients diagnosed with SAPH participated in qualitative one-on-one telephone interviews to better understand SAPH symptoms and their impacts on patients' lives and to determine the appropriateness of the PAH-SYMPACT™ for use in patients with SAPH. The interviews comprised concept elicitation, completion of the PAH-SYMPACT™, and cognitive debriefing. Interview transcripts were analyzed by content analysis. RESULTS: Eleven patients with SAPH were interviewed between August 2019 and June 2020. In the concept elicitation, all 11 participants endorsed shortness of breath and nine participants (82%) rated it as their "most bothersome or severe" symptom. Impacts endorsed by all 11 participants were difficulty walking uphill or up stairs and difficulty in performing daily activities. Cognitive debriefing indicated that the PAH-SYMPACT™ items were relevant and understandable to most participants and reflected their experiences of SAPH. Participants indicated that no key symptoms or impacts of SAPH were missing. They also reported that the PAH-SYMPACT™ instructions and response options were clear, and that it would be feasible to complete the 11 symptom items and one oxygen use item as part of their daily schedule. CONCLUSIONS: This study suggests the PAH-SYMPACT™ is suitable for assessing symptoms and their impact in patients with SAPH. However, larger longitudinal studies are needed to confirm that it is fit for use in this patient population and that it can be used to reliably detect temporal changes in patients' symptom status. Trial registration Not applicable.
Subject(s)
Hypertension, Pulmonary/complications , Hypertension, Pulmonary/psychology , Quality of Life , Sarcoidosis/complications , Sarcoidosis/psychology , Surveys and Questionnaires/standards , Aged , Female , Humans , Interviews as Topic , Male , Middle Aged , Pulmonary Arterial Hypertension , Qualitative Research , Quality of Life/psychologyABSTRACT
BACKGROUND: Pulmonary arterial hypertension (PAH) has an identifiable genetic cause in 5% of all PAH cases. Due to health benefits conferred by the early detection of PAH and the recent identification of additional PAH-associated genes, we decided to offer (extended) genetic testing to all incident and prevalent idiopathic PAH (iPAH) and pulmonary veno-occlusive disease (PVOD) patients in our clinic. Here, we report the lessons learned from (re-)contacting iPAH/PVOD patients concerning the uptake and analysis of identified PAH-associated genes and patient perspectives of the approach. METHODS: Between January 2018 and April 2020, all iPAH/PVOD patients who were not previously genetically tested (contact group) and those who tested negative on prior analysis of BMPR2 and SMAD9 variants (re-contact group) were (re-)contacted for (additional) genetic testing. RESULTS: With our approach, 58% of patients (84 out of 165) opted for genetic counselling, and a pathogenic variant was found in 12% of cases (n = 10) (re-contact group, 11%, and contact group, 13%). Eighty-six percent of participants of the survey study appreciated being (re-)contacted for genetic testing. Mild psychosocial impacts were observed. CONCLUSIONS: Our report shows the importance of (re-)contact and interest of patients (as indicated by the uptake, mild psychosocial impact and appreciation) in PAH.
Subject(s)
Attitude , Genetic Testing/methods , Hypertension, Pulmonary/genetics , Patients/psychology , Adult , Aged , Bone Morphogenetic Protein Receptors, Type II/genetics , Female , Genetic Testing/ethics , Humans , Hypertension, Pulmonary/diagnosis , Hypertension, Pulmonary/psychology , Male , Middle Aged , Smad8 Protein/geneticsABSTRACT
This research aimed to evaluate the right ventricular segmentation ability of magnetic resonance imaging (MRI) images based on deep learning and evaluate the influence of curcumin (Cur) on the psychological state of patients with pulmonary hypertension (PH). The heart MRI images were detected based on the You Only Look Once (YOLO) algorithm, and then the MRI image right ventricle segmentation algorithm was established based on the convolutional neural network (CNN) algorithm. The segmentation effect of the right ventricle in cardiac MRI images was evaluated regarding intersection-over-union (IOU), Dice coefficient, accuracy, and Jaccard coefficient. 30 cases of PH patients were taken as the research object. According to different treatments, they were rolled into control group (conventional treatment) and Cur group (conventional treatment + Cur), with 15 cases in each group. Changes in the scores of the self-rating anxiety scale (SAS) and self-rating depression scale (SDS) of the two groups of patients before and after treatment were analyzed. It was found that the average IOU of the heart target detection frame of the MRI image and the true bounding box before correction was 0.7023, and the IOU after correction was 0.9016. The Loss of the MRI image processed by the CNN algorithm was 0.05, which was greatly smaller than those processed by other algorithms. The Dice coefficient, Jaccard coefficient, and accuracy of the MRI image processed by CNN were 0.89, 0.881, and 0.994, respectively. The MRI images of PH patients showed that the anterior wall of the right ventricle was notably thickened, and the main pulmonary artery was greatly widened. After treatment, the SAR and SDS scores of the two groups were lower than those before treatment (P < 0.05), and the SAR and SDS scores of the curcumin group were lower than those of the control group (P < 0.05). To sum up, the right ventricular segmentation ability of MRI images based on deep learning was improved, and Cur can remarkably alleviate the psychological state of PH patients, which provided a reference for the diagnosis and treatment for PH patients.
Subject(s)
Algorithms , Anxiety Disorders/prevention & control , Curcumin/therapeutic use , Deep Learning , Depressive Disorder/prevention & control , Hypertension, Pulmonary/drug therapy , Magnetic Resonance Imaging/methods , Adolescent , Adult , Aged , Anti-Inflammatory Agents, Non-Steroidal/therapeutic use , Anxiety Disorders/epidemiology , Anxiety Disorders/pathology , Case-Control Studies , Depressive Disorder/epidemiology , Depressive Disorder/pathology , Female , Follow-Up Studies , Humans , Hypertension, Pulmonary/pathology , Hypertension, Pulmonary/psychology , Male , Middle Aged , Neural Networks, Computer , Young AdultABSTRACT
BACKGROUND: Patients with pulmonary hypertension (PH) have progressive and disabling symptoms, as well as a burden of treatments and a difficult clinical evaluation that make health-related quality of life a particularly relevant endpoint in this disease. The objective of the study was to evaluate patient-reported outcomes of patients receiving specific treatment for PH in a tertiary hospital using a specific questionnaire (Cambridge Pulmonary Hypertension Outcome Review-CAMPHOR) in the pharmacy consultation. METHODS: A cross-sectional, observational, descriptive study was conducted. It included all patients receiving specific treatment for PH in a tertiary hospital in Madrid, Spain. The inclusion period comprised between August to December 2019. CAMPHOR questionnaires containing three domains: symptoms, activities and quality of life were completed by the patients at the pharmacy consultation. Demographic and clinical variables, including WHO Functional Class (WHO FC), PH-specific tests and hemodynamic parameters, were recorded. Non-parametric analyses to assess relations between variables and CAMPHOR domains were performed. RESULTS: Thirty-six patients consented to participate in the study and completed the questionnaire. Median scores for symptoms, activities, and quality of life domains were 5.5 (2.5-10), 8.0 (4.5-10.5) and 3.5 (1-7.5), respectively. Statistically significant differences were found in the three domains when comparing by WHO FC, in the activities domain for 6-m walking test and in the quality of life domain for patients who had emergency visits or hospitalizations in the last year. CONCLUSIONS: The CAMPHOR questionnaire could be useful as a complementary test to achieve an integrated evaluation of PH patients, who could complete it easily during their routine pharmacy visits.
Subject(s)
Hypertension, Pulmonary/physiopathology , Hypertension, Pulmonary/psychology , Patient Reported Outcome Measures , Quality of Life , Aged , Cross-Sectional Studies , Female , Humans , Male , Middle Aged , Psychometrics , Severity of Illness Index , Spain , Surveys and Questionnaires , Tertiary Care CentersABSTRACT
BACKGROUND: The medical management of patients with pulmonary hypertension (PH) has advanced, with few evidence-based recommendations about psychosocial and behavioral health interventions. There is also a lack of comprehensive understanding of PH psychosocial and behavioral health needs. Some psychosocial and behavioral health interventions have been tested; however, there is a gap in the systematic evaluation of nonpharmacological complementary approaches to augment PH management when addressing psychosocial and behavioral health needs. OBJECTIVES: The objectives are to explore psychosocial and behavioral health needs and describe psychosocial and behavioral health interventions for patients with PH. METHODS: We conducted an integrative systematic review of publications between January 1, 2010, and January 31, 2020, obtained from electronic databases: EMBASE, PubMed, Cumulative Index of Nursing and Allied Health Literature, Cochrane, PsycINFO, and Web of Science. The literature searches focused on empirical literature reporting psychosocial needs and psychosocial and behavioral health interventions for adult PH patients. We included peer-reviewed studies published in English. Search terms used in the study were: "hypertension," "pulmonary hypertension," "psychosocial," "depression," "anxiety," "quality of life," "behavioral health," "self-management," "psychosocial intervention," and "psychological distress." Excluded were opinion and discussion publications, reviews, non-PH populations, and pediatric articles. We used the constant comparison method to guide the synthesis of reports applying the Joanna Briggs quality assessment guidelines. RESULTS: A total of 44 articles meeting the criteria were included for final consideration. We conducted an integrative systematic review of 27 quantitative studies, narrative synthesis of 10 qualitative studies, and 7 psychosocial and behavioral health intervention studies. PH patients reported psychosocial needs, such as financial, social connections, sexual health, and palliative care needs, as well as levels of psychological distress symptoms. The results from both quantitative and qualitative studies revealed similar overarching psychosocial and behavioral health conceptual categories. Patients described their ongoing needs in PH management by relying on their psychosocial and behavioral health capabilities to adjust to changes at each stage of disease progression. Patients had high levels of psychosocial and behavioral health needs requiring interventions beyond medical treatment. DISCUSSION: Pilot studies testing psychosocial and behavioral health interventions reported improvement in levels of anxiety and depression and health-related quality of life. Larger scale studies are needed to advance this knowledge. Psychosocial and behavioral health interventions with cognitive-guided foci have the potential of meeting these unmet needs.
Subject(s)
Cognitive Behavioral Therapy/methods , Health Behavior , Health Promotion/methods , Hypertension, Pulmonary/psychology , Hypertension, Pulmonary/therapy , Anxiety/prevention & control , Humans , Hypertension, Pulmonary/complications , Primary Health Care/methods , Quality of LifeSubject(s)
Coronavirus Infections/epidemiology , Coronavirus Infections/psychology , Fear , Health Services Accessibility/statistics & numerical data , Hypertension, Pulmonary/psychology , Hypertension, Pulmonary/therapy , Patients/psychology , Pneumonia, Viral/epidemiology , Pneumonia, Viral/psychology , Adult , Aged , COVID-19 , Female , Humans , Male , Middle Aged , Pandemics , Poland/epidemiologySubject(s)
Hypertension, Pulmonary , Medical Overuse/prevention & control , Patient Care Management , Pulmonary Wedge Pressure , Vascular Resistance , Clinical Decision-Making , Humans , Hypertension, Pulmonary/diagnosis , Hypertension, Pulmonary/physiopathology , Hypertension, Pulmonary/psychology , Hypertension, Pulmonary/therapy , Patient Care Management/ethics , Patient Care Management/methods , Patient Selection/ethics , Severity of Illness Index , Terminology as TopicABSTRACT
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.
Subject(s)
Hypertension, Pulmonary/surgery , Pulmonary Embolism/surgery , Adult , Chronic Disease , Cohort Studies , Female , Humans , Hypertension, Pulmonary/psychology , Male , Middle Aged , Prospective Studies , Pulmonary Embolism/psychology , Quality of Life/psychology , Treatment OutcomeABSTRACT
BACKGROUND: Pulmonary hypertension (PH) is defined as an elevation of mean pulmonary-arterial pressure by >â20âmmHg at rest, which may lead to right heart failure. Physical exercise has not been regularly recommended for PH patients for fear of symptom deterioration or occurrence of exercise-induced adverse events. METHODS: Three electronic databases were searched for randomized, controlled trials investigating exercise training in PH patients using the following keywords: "pulmonary hypertension" OR "pulmonary arterial hypertension" AND "exercise" OR "pulmonary rehabilitation" AND "randomized". RESULTS: Five studies involving 187 PH patients were included in this systematic review. Exercise programs lasted for 3â-â12 weeks (e.âg. endurance training for 10â-â45 minutes; 60â-â80â% of the peak heart rate). PH patients significantly improved exercise capacity compared to controls in 6-minute walk distance (+â45âm; 95â% CI: 26âmâ-â64âm) or peak oxygen consumption (+â2.3âml/kg/min; 95â% CI: 1.8â-â2.9âml/kg/min), both pâ<â0.001. Also, physical and mental quality of life improved significantly by exercise training. No exercise-induced adverse events were observed. CONCLUSION: Supervised exercise training can safely and significantly improve physical performance and quality of life in clinically stable PH patients with optimal drug treatment. However, larger studies including a wider range of PH are mandatory.
Subject(s)
Exercise Therapy/methods , Exercise Tolerance , Exercise , Hypertension, Pulmonary/therapy , Randomized Controlled Trials as Topic , Humans , Hypertension, Pulmonary/psychology , Physical Fitness , Quality of Life/psychology , Treatment OutcomeABSTRACT
Pulmonary hypertension (PH) is a chronic disease which severely impairs quality of life (QoL). The Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR) is the first disease-specific tool to assess patient-reported symptoms, functioning and QoL in PH patients. The aim of this study was to adapt and validate the CAMPHOR for use in Croatia. The adaptation process involved three stages: translation (bilingual and lay panel), cognitive debriefing interviews with patients and psychometric validation. For the latter stage, a postal survey was conducted with 50 patients to examine the reliability and validity of the adapted scale. All three scales of the Croatian CAMPHOR demonstrated excellent internal consistency (Symptoms = 0.93; Activity limitations = 0.94; QoL = 0.92) and test-retest reliability correlations (Symptoms = 0.90; Activity limitations = 0.95; QoL = 0.90). Predicted correlations with the SF-36 scales provided evidence for construct validity of the CAMPHOR scales. Evidence for known group validity was shown by the ability of the scales to distinguish between participants based on patient-perceived general health and disease severity. The Croatian version of the CAMPHOR is a valid and reliable tool for use in clinical routine and clinical research.
Subject(s)
Hypertension, Pulmonary/psychology , Quality of Life/psychology , Severity of Illness Index , Surveys and Questionnaires/standards , Activities of Daily Living/psychology , Adaptation, Physiological , Adult , Aged , Croatia , Female , Humans , Male , Middle Aged , Outcome Assessment, Health Care , Reproducibility of Results , TranslatingABSTRACT
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.
Subject(s)
Hypertension, Pulmonary/physiopathology , Pulmonary Embolism/physiopathology , Quality of Life , Surveys and Questionnaires/standards , Adolescent , Adult , Aged , Colombia , Cross-Cultural Comparison , Female , Humans , Hypertension, Pulmonary/psychology , Language , Male , Middle Aged , Patient Reported Outcome Measures , Psychometrics , Pulmonary Embolism/psychology , Quality of Life/psychology , Reference Values , Reproducibility of Results , Severity of Illness Index , Statistics, Nonparametric , Translations , Young AdultABSTRACT
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.
Subject(s)
Hypertension, Pulmonary/psychology , Patient Education as Topic , Pulmonary Embolism/psychology , Adolescent , Adult , Age Distribution , Aged , Aged, 80 and over , Child , Chronic Disease , Female , Health Knowledge, Attitudes, Practice , Humans , Hypertension, Pulmonary/epidemiology , Male , Medication Adherence , Middle Aged , Patient Care Team , Patient Satisfaction , Pulmonary Embolism/epidemiology , Quality of Life , Sex Distribution , Surveys and Questionnaires , Sweden/epidemiology , Young AdultABSTRACT
BACKGROUND: Pulmonary arterial hypertension (PAH) remains a life-threatening condition, despite modern therapies. We prospectively investigated the therapeutic health-related quality of life (HRQOL) effects of goal-oriented sequential combination therapy based on exercise capacity in patients newly diagnosed with PAH. METHODS: To examine the changes in HRQOL in PAH patients, we treated 30 patients newly diagnosed with PAH with goal-oriented sequential combination therapy based on exercise capacity. We monitored exercise capacity by cardiopulmonary exercise testing and observed the benefit of using a peak VO2 cut-off of 15 mL/kg/min to guide combination therapy. First-line treatment was an endothelin receptor antagonist (ERA); second-line treatment was the addition of a phosphodiesterase-5 inhibitor (PDE-5I). At baseline and at 3, 6, and 12 months, HRQOL was evaluated by using the eight-item Medical Outcomes Survey Short Form Health Survey. RESULTS: At 12 months, 100% of PAH patients were receiving an ERA, and 82% an ERA + PDE-5I. The mean physical component summary (PCS) score was 33.5 at baseline, 41.2 at 3 months, 40.8 at 6 months, and 42.0 at 12 months, and the mean mental component summary (MCS) scores were 45.6, 47.0, 50.0, and 50.1, respectively. PCS score was significantly greater at 3 months than at baseline (P = 0.035). MCS score was comparable at 3 months and at baseline, but was significantly greater at 6 and 12 months than at baseline (P = 0.033, P = 0.028, respectively). Thus, PCS score improved soon after initiation of therapy, and MCS score improved later. CONCLUSIONS: Together, these results suggest that goal-oriented sequential combination therapy based on exercise capacity improves HRQOL in patients with PAH.
Subject(s)
Endothelin Receptor Antagonists/therapeutic use , Exercise , Hypertension, Pulmonary , Phosphodiesterase 5 Inhibitors/therapeutic use , Quality of Life , Adult , Combined Modality Therapy , Exercise Tolerance , Female , Humans , Hypertension, Pulmonary/psychology , Hypertension, Pulmonary/therapy , Male , Middle Aged , Surveys and QuestionnairesABSTRACT
STUDY QUESTION: We investigated whether domiciliary oxygen therapy (DOXT) increases exercise capacity and quality of life in patients with pulmonary arterial or distal chronic thromboembolic pulmonary hypertension (PAH/CTEPH) presenting with mild resting hypoxaemia and exercise-induced oxygen desaturation. MATERIALS AND METHODS: 30 patients with PAH/CTEPH, mean±sd age 60±15â years, pulmonary artery pressure 39±11â mmHg, resting arterial oxygen saturation measured by pulse oximetry (S pO2 ) ≥90%, S pO2 drop during a 6-min walk test ≥4%, on pulmonary hypertension-targeted medication, were randomised in a double-blind crossover protocol to DOXT and placebo (ambient air) treatment, each over 5â weeks, at 3â L·min-1 via nasal cannula overnight and when resting during the day. Treatment periods were separated by 2â weeks of washout. Co-primary outcomes were changes in 6-min walk distance (6MWD, breathing ambient air) and physical functioning scale of the 36-item short-form medical outcome questionnaire during treatment periods. RESULTS: DOXT increased the 6MWD from baseline 478±113â m by a mean (95% CI) of 19 (6-32) m, and physical functioning from 52±29 by 4 (0-8) points. Corresponding changes with placebo were 1 (-11-13)â m in 6MWD and -2 (-6-2) points in physical functioning. Between-treatment differences in changes were 6MWD 18 (1-35)â m (p=0.042) and physical functioning 6 (1-11) points (p=0.029). DOXT significantly improved the New York Heart Association functional class versus placebo. ANSWER TO THE QUESTION: This first randomised trial in PAH/CTEPH patients with exercise-induced hypoxaemia demonstrates that DOXT improves exercise capacity, quality of life and functional class. The results support large long-term randomised trials of DOXT in PAH/CTEPH.
Subject(s)
Exercise Tolerance , Hypertension, Pulmonary/physiopathology , Oxygen Inhalation Therapy , Thromboembolism/physiopathology , Adolescent , Adult , Aged , Aged, 80 and over , Chronic Disease , Cross-Over Studies , Double-Blind Method , Female , Humans , Hypertension , Hypertension, Pulmonary/psychology , Intention to Treat Analysis , Male , Middle Aged , Oximetry , Pressure , Pulmonary Artery , Quality of Life , Thromboembolism/psychology , Treatment Outcome , Walking , Young AdultABSTRACT
BACKGROUND: Patients considering destination therapy left ventricular assist devices (DT LVAD) often have high comorbid burden but the association between these comorbidities and post-decision outcomes is unknown. METHODS: We included subjects in DECIDE-LVAD (NCT02344576), a stepped-wedge multicenter trial of patients considering LVADs, recording comorbidities per INTERMACS protocol. We compared decisional conflict, regret, perceived stress, quality of life (EQ-VAS), depression (PHQ-2), struggle with- and acceptance of illness by comorbid burden and amongst the most common comorbidities. RESULTS: Of 239 patients, LVAD recipients (nâ¯=â¯164) and non-recipients (nâ¯=â¯75) had a similar proportion with ≥1 comorbidity (70% v. 80%, Pâ¯=â¯.09). Patients with comorbidities were younger regardless of LVAD implantation status. After adjusting for age, overall and amongst LVAD recipients, patients with ≥1 comorbidity had higher mean decision conflict at baseline (23.2⯱â¯1.5 vs. 17.4⯱â¯2.2), and at 6 months, higher stress (13.0⯱â¯0.6 vs. 10.4⯱â¯1.0) and struggle with illness (13.3⯱â¯0.4 vs. 11.1⯱â¯0.6) than those without comorbidities (Pâ¯<â¯.05). No difference was noted in decision regret, PHQ-2, EQ-VAS, acceptance of illness and survival overall and amongst LVAD recipients. Of the three most common comorbidities, while patients with pulmonary hypertension had worse decision regret, depression, stress and acceptance of illness at 6-month follow-up than those who did not have pulmonary hypertension, no difference was noted in patients with chronic renal disease or high body mass index. CONCLUSION: Patients considering LVAD implantation with comorbidities experience increased decision conflict, stress and struggle with illness. These findings provide insights in the role comorbidities play in patient decision-making and decisional outcomes.
Subject(s)
Conflict, Psychological , Emotions , Heart Failure/psychology , Heart Failure/therapy , Heart-Assist Devices/psychology , Prosthesis Implantation/psychology , Adaptation, Psychological , Age Factors , Aged , Body Mass Index , Comorbidity , Contraindications, Procedure , Decision Making, Shared , Female , Follow-Up Studies , Health Surveys , Heart Failure/epidemiology , Heart-Assist Devices/statistics & numerical data , Humans , Hypertension, Pulmonary/epidemiology , Hypertension, Pulmonary/psychology , Male , Middle Aged , Quality of Life , Renal Insufficiency, Chronic/epidemiology , Renal Insufficiency, Chronic/psychology , Stress, Psychological , Time Factors , Visual Analog ScaleABSTRACT
BACKGROUND: Pulmonary Hypertension Association UK (PHA-UK) is the only charity in the UK especially for people affected by pulmonary hypertension (PH). To better understand the impact of PH on patients and carers beyond clinical symptoms, the PHA-UK carried out a cross-sectional survey on the effect of PH on daily living, along with a follow-up survey assessing the financial impact of PH. METHODS: This is a descriptive cross-sectional survey of adult patients with PH in the UK. A quantitative survey of four key topics (time to diagnosis, quality of life [QoL], financial impact and specialist treatment), was made available to PHA-UK members and patients on PH therapy, with a follow-up financial impact survey sent to those responders who agreed to be contacted further. Data collection was carried out in January and February 2017 for the main survey, and November and December 2017 for the financial impact survey. RESULTS: The main survey was completed by 567 individuals, and the financial follow-up survey by 171. Mean age of responders was 69 ± 17 years with 70% female. 60% of respondents said PH had a major impact on their QoL, with 45% reporting that treatment and management improves their QoL 'a lot'. The time between first experiencing symptoms and diagnosis was ≥1 year for 48% of patients, with 40% seeing 4+ doctors before diagnosis. 63% of patients reported financial worries. Patients in part-time and full-time work reported the greatest financial burden, with a 13 and 33% fall in monthly income respectively. Patients had positive experiences of treatment in specialist centres, with 62% rating their care 'excellent', and 92% saying they preferred travelling to a specialist centre rather than seeing a local non-specialist. CONCLUSIONS: This study reports the largest UK survey exploring issues affecting patients with PH. The study shows that despite the availability of new therapies, patients are still experiencing delays prior to diagnosis, and experiencing both emotional and financial impacts from the disease. By identifying the areas patients find most important in their treatment, this research can inform future care policies and long-term management to support patients living with PH and their families.