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1.
JMIR Hum Factors ; 11: e51789, 2024 May 23.
Article in English | MEDLINE | ID: mdl-38781581

ABSTRACT

BACKGROUND: Early users found Engagement and Visualization to Improve Symptoms in Oncology Care (ENVISION), a web-based application designed to improve home management of hospice patients' symptoms and support patients' and family caregivers' well-being, to be generally useful and easy to use. However, they also raised concerns about potential challenges users with limited technological proficiency might experience. OBJECTIVE: We sought to concurrently accomplish two interrelated study aims: (1) to develop a conceptual framework of digital inclusivity for health information systems and (2) to apply the framework in evaluating the digital inclusivity of the ENVISION application. METHODS: We engaged ENVISION users (N=34) in a qualitative study in which data were collected via direct observation, think-aloud techniques, and responses to open-ended queries. Data were analyzed via theory elaboration and basic qualitative description. RESULTS: Accessibility, relevance, and impact were identified as 3 essential considerations in evaluating a health system's digital inclusivity. Study findings generally supported ENVISION's digital inclusivity, particularly concerning its perceived relevance to the work of family caregivers and hospice clinicians and its potentially positive impact on symptom management and quality of life. Limitations to ENVISION's digital inclusivity centered around issues of accessibility, particularly operability among individuals with limited technological knowledge and skills. CONCLUSIONS: The Accessibility, Relevance, and Impact conceptual framework of digital inclusivity for health information systems can help identify opportunities to strengthen the digital inclusivity of tools, such as ENVISION, intended for use by a broad and diverse range of users.


Subject(s)
Home Care Services , Hospice Care , Qualitative Research , Humans , Hospice Care/methods , Female , Male , Middle Aged , Symptom Assessment/methods , Adult , Caregivers/psychology , Quality of Life
2.
Nefrología (Madrid) ; 44(2): 159-164, Mar-Abr. 2024. ilus
Article in Spanish | IBECS | ID: ibc-231565

ABSTRACT

La hiponatremia es un trastorno multifactorial definido como una disminución en la concentración plasmática de sodio. Su diagnóstico diferencial requiere una evaluación adecuada del volumen extracelular. Sin embargo, la determinación del volumen extracelular, simplemente basada en la historia clínica, las constantes vitales, el examen físico y los hallazgos de laboratorio, conducen en ocasiones a un diagnóstico erróneo por lo que el enfoque terapéutico puede ser equivocado. El empleo de ecografía a pie de cama (Point-of-Care Ultrasound [PoCUS]), mediante la combinación de ecografía pulmonar (Lung Ultrasound [LUS]), Venous Excess UltraSound (VExUS) y la ecocardioscopia (Focused Cardiac Ultrasound [FoCUS]) permiten, en combinación con el resto de los parámetros, una valoración holística mucho más precisa del estado del volumen extracelular del paciente.(AU)


Hyponatremia is a multifactorial disorder defined as a decrease in plasma sodium concentration. Its differential diagnosis requires an adequate evaluation of the extracellular volume. However, extracellular volume determination, simply based on the clinical history, vital signs, physical examination, and laboratory findings can leads to misdiagnosis and inappropriate treatment. The use of Point-of-Care Ultrasound (PoCUS), through the combination of Lung Ultrasound (LUS), Venous Excess UltraSound (VExUS) and Focused Cardiac Ultrasound (FoCUS), allows a much more accurate holistic assessment of the patient's extracellular volume status in combination with the other parameters.(AU)


Subject(s)
Humans , Female , Aged , Hyponatremia/diagnosis , Precision Medicine , Diagnosis, Differential , Ultrasonography/methods , Osmolar Concentration , Inpatients , Physical Examination , Symptom Assessment
3.
Nefrología (Madrid) ; 44(2): 268-275, Mar-Abr. 2024. tab, ilus, graf
Article in Spanish | IBECS | ID: ibc-231577

ABSTRACT

La fibrilación auricular (FA) es la arritmia crónica más frecuente en pacientes con enfermedad renal crónica (ERC). La anticoagulación oral con antagonistas de la vitamina K (AVK) y actualmente los anticoagulantes orales de acción directa (ACOD) han sido el pilar fundamental para la prevención de eventos tromboembólicos. Sin embargo, no existen ensayos clínicos aleatorizados de su perfil riesgo-beneficio en pacientes con ERC estadio 5 en diálisis peritoneal (DP) y son pocas las evidencias en la literatura sobre esta población. El objetivo del estudio fue conocer la prevalencia, tratamiento y profesionales implicados en el manejo de la FA en DP en nuestro entorno mediante el análisis descriptivo de una encuesta enviada a diferentes unidades de DP de España. Se incluyeron en el estudio 1.403 pacientes en programa de DP, de los cuales 186 (13,2%) presentaban FA no valvular (FANV). Además, observamos que la valoración de los scores para el inicio del tratamiento anticoagulante la realizaba mayoritariamente el cardiólogo (60% de los centros), así como la prescripción de anticoagulación (cardiólogo 47% o en conjunto con el nefrólogo 43%). En conclusión, los pacientes en DP presentan una notable prevalencia de FANV. Reciben frecuentemente anticoagulación oral (ACO) con AVK, así como con ACOD. Los datos obtenidos respecto a las escalas utilizadas para la valoración de riesgo tromboembólico y de sangrado, tratamiento e implicación por parte de Nefrología indican que existe una necesidad de formación e involucramiento del nefrólogo en esta patología.(AU)


Atrial fibrillation is the most frequent chronic arrhythmia in patients with chronic kidney disease. Oral anticoagulation with vitamin K antagonists and now direct oral anticoagulants have been and are the fundamental pillar for the prevention of thromboembolic events. However, there are no randomized clinical trials on the risk-benefit profile of oral anticoagulation in patients with chronic kidney disease stage 5 on peritoneal dialysis and there is little evidence in the literature in this population. The objective of our study was to know the prevalence, treatment and professionals involved in the management of atrial fibrillation in peritoneal dialysis patients. For this purpose, we performed a descriptive analysis through a survey sent to different peritoneal dialysis units in Spain. A total of 1403 patients on peritoneal dialysis were included in the study, of whom 186 (13.2%) had non-valvular atrial fibrillation. In addition, the assessment of the scores of thromboembolic and bleeding risks for the indication of oral anticoagulation was mainly carried out by the cardiologist (60% of the units), as well as its prescription (cardiologist 47% in consensus with the nephrologist 43%). In summary, patients on peritoneal dialysis have a remarkable prevalence of non-valvular atrial fibrillation. Patients frequently receive oral anticoagulation with vitamin K antagonists, as well as direct oral anticoagulants. The data obtained regarding the scales used for the assessment of thromboembolic and bleeding risk, treatment and involvement by Nephrology indicates that there is a need for training and involvement of the nephrologist in this pathology.(AU)


Subject(s)
Humans , Male , Female , Atrial Fibrillation/drug therapy , Prevalence , Peritoneal Dialysis , Vitamin K , Factor Xa Inhibitors , Symptom Assessment , Nephrology , Kidney Diseases , Cross-Sectional Studies , Retrospective Studies
5.
Rev. esp. cir. ortop. traumatol. (Ed. impr.) ; 68(2): 168-178, Mar-Abr. 2024. ilus, tab, graf
Article in Spanish | IBECS | ID: ibc-231901

ABSTRACT

Objetivo: Comparar a mediano y largo plazo los resultados quirúrgicos postoperatorios, sobre todo la tasa del síndrome adyacente, tasa de eventos adversos y tasa de reoperación, de los pacientes operados con artroplastia cervical o artrodesis cervical anterior en los ensayos clínicos aleatorizados (ECA) publicados de un nivel cervical. Métodos: Revisión sistemática y metaanálisis. Se seleccionaron 13 ECA. Se analizaron los resultados clínicos, radiológicos y quirúrgicos, tomando como variables primarias la tasa del síndrome adyacente, tasa de eventos adversos y tasa de reoperación. Resultados: Fueron 2.963 los pacientes analizados. El grupo de artroplastia cervical mostró una menor tasa de síndrome adyacente superior (p<0,001), menor tasa de reoperación (p<0,001), menor dolor radicular (p=0,002) y una mejor puntuación en el índice de discapacidad cervical (p=0,02) y en el componente físico SF-36 (p=0,01). No se encontraron diferencias significativas en la tasa del síndrome adyacente inferior, tasa de eventos adversos, dolor cervical ni componente mental SF-36. Se halló en la artroplastia cervical un rango de movilidad medio de 7,91 grados en el seguimiento final y una tasa de osificación heterotópica de 9,67%. Conclusión: En el seguimiento a mediano y largo plazo, la artroplastia cervical mostró menor tasa de síndrome adyacente superior y menor tasa de reintervención. No se hallaron diferencias estadísticamente significativas en la tasa del síndrome adyacente inferior ni en la tasa de eventos adversos.(AU)


Objective: To compare medium- and long-term postoperative surgical results, especially the adjacent syndrome rate, adverse event rate, and reoperation rate, of patients operated on with cervical arthroplasty or anterior cervical arthrodesis in published randomized clinical trials (RCTs), at one cervical level. Methods: Systematic review and meta-analysis. Thirteen RCTs were selected. The clinical, radiological and surgical results were analyzed, taking the adjacent syndrome rate and the reoperation rate as the primary objective of the study. Results: Two thousand nine hundred and sixty three patients were analyzed. The cervical arthroplasty group showed a lower rate of superior adjacent syndrome (P<0.001), lower reoperation rate (P<0.001), less radicular pain (P=0.002), and a better score of neck disability index (P=0.02) and SF-36 physical component (P=0.01). No significant differences were found in the lower adjacent syndrome rate, adverse event rate, neck pain scale, or SF-36 mental component. A range of motion of 7.91 degrees was also found at final follow-up, and a heterotopic ossification rate of 9.67% in patients with cervical arthroplasty. Conclusion: In the medium and long-term follow-up, cervical arthroplasty showed a lower rate of superior adjacent syndrome and a lower rate of reoperation. No statistically significant differences were found in the rate of inferior adjacent syndrome or in the rate of adverse events.(AU)


Subject(s)
Humans , Male , Female , Arthroplasty , Spine/surgery , Spinal Injuries , Arthrodesis , Symptom Assessment , Drug-Related Side Effects and Adverse Reactions , Wounds and Injuries
6.
Rev. esp. cir. ortop. traumatol. (Ed. impr.) ; 68(2): T168-T178, Mar-Abr. 2024. ilus, tab, graf
Article in English | IBECS | ID: ibc-231902

ABSTRACT

Objetivo: Comparar a mediano y largo plazo los resultados quirúrgicos postoperatorios, sobre todo la tasa del síndrome adyacente, tasa de eventos adversos y tasa de reoperación, de los pacientes operados con artroplastia cervical o artrodesis cervical anterior en los ensayos clínicos aleatorizados (ECA) publicados de un nivel cervical. Métodos: Revisión sistemática y metaanálisis. Se seleccionaron 13 ECA. Se analizaron los resultados clínicos, radiológicos y quirúrgicos, tomando como variables primarias la tasa del síndrome adyacente, tasa de eventos adversos y tasa de reoperación. Resultados: Fueron 2.963 los pacientes analizados. El grupo de artroplastia cervical mostró una menor tasa de síndrome adyacente superior (p<0,001), menor tasa de reoperación (p<0,001), menor dolor radicular (p=0,002) y una mejor puntuación en el índice de discapacidad cervical (p=0,02) y en el componente físico SF-36 (p=0,01). No se encontraron diferencias significativas en la tasa del síndrome adyacente inferior, tasa de eventos adversos, dolor cervical ni componente mental SF-36. Se halló en la artroplastia cervical un rango de movilidad medio de 7,91 grados en el seguimiento final y una tasa de osificación heterotópica de 9,67%. Conclusión: En el seguimiento a mediano y largo plazo, la artroplastia cervical mostró menor tasa de síndrome adyacente superior y menor tasa de reintervención. No se hallaron diferencias estadísticamente significativas en la tasa del síndrome adyacente inferior ni en la tasa de eventos adversos.(AU)


Objective: To compare medium- and long-term postoperative surgical results, especially the adjacent syndrome rate, adverse event rate, and reoperation rate, of patients operated on with cervical arthroplasty or anterior cervical arthrodesis in published randomized clinical trials (RCTs), at one cervical level. Methods: Systematic review and meta-analysis. Thirteen RCTs were selected. The clinical, radiological and surgical results were analyzed, taking the adjacent syndrome rate and the reoperation rate as the primary objective of the study. Results: Two thousand nine hundred and sixty three patients were analyzed. The cervical arthroplasty group showed a lower rate of superior adjacent syndrome (P<0.001), lower reoperation rate (P<0.001), less radicular pain (P=0.002), and a better score of neck disability index (P=0.02) and SF-36 physical component (P=0.01). No significant differences were found in the lower adjacent syndrome rate, adverse event rate, neck pain scale, or SF-36 mental component. A range of motion of 7.91 degrees was also found at final follow-up, and a heterotopic ossification rate of 9.67% in patients with cervical arthroplasty. Conclusion: In the medium and long-term follow-up, cervical arthroplasty showed a lower rate of superior adjacent syndrome and a lower rate of reoperation. No statistically significant differences were found in the rate of inferior adjacent syndrome or in the rate of adverse events.(AU)


Subject(s)
Humans , Male , Female , Arthroplasty , Spine/surgery , Spinal Injuries , Arthrodesis , Symptom Assessment , Drug-Related Side Effects and Adverse Reactions , Wounds and Injuries
7.
Health Qual Life Outcomes ; 22(1): 28, 2024 Mar 26.
Article in English | MEDLINE | ID: mdl-38532393

ABSTRACT

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


Subject(s)
Neoplasms , Quality of Life , Humans , Symptom Assessment , Palliative Care , Pain , Surveys and Questionnaires
8.
Strahlenther Onkol ; 200(6): 507-511, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38530418

ABSTRACT

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


Subject(s)
Patient Reported Outcome Measures , Triple Negative Breast Neoplasms , Humans , Female , Middle Aged , Radiotherapy, Adjuvant , Aged , Retrospective Studies , Adult , Triple Negative Breast Neoplasms/radiotherapy , Triple Negative Breast Neoplasms/pathology , Symptom Assessment , Fatigue/etiology , Sleep Wake Disorders/etiology , Chemotherapy, Adjuvant , Mastectomy , Combined Modality Therapy , Symptom Burden
9.
Pain Manag Nurs ; 25(3): e243-e249, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38480085

ABSTRACT

OBJECTIVE: This study aims to investigate the effect of an educational intervention on cancer patients receiving palliative care and their caregivers concerning symptom management and family needs. METHODS: This study involved 120 participants-60 cancer patients and their respective caregivers-divided into intervention and control groups. Over a 2-week period, the intervention group received a comprehensive educational program focusing on symptom management, while the control group did not receive any educational intervention. The Edmonton Symptom Assessment System (ESAS) and Palliative Performance Scale (PPS) were used to assess patients' symptoms, their intensity, and performance, while the Family Need Scale (FNS) was utilized to evaluate caregivers' needs. These assessments were conducted at the beginning and end of the study. Primary outcomes focused on symptom assessment using ESAS and PPS, along with evaluating caregivers' needs through FNS. Secondary outcomes involved assessing participant satisfaction with the intervention. RESULTS: At the end of the study, comparing initial and second evaluations, both ESAS and PPS scores significantly increased in the intervention and control groups (p = .003, p = .002, respectively). Additionally, a statistically significant decrease in the severity of symptoms, except for lethargy/hypokinesis, was observed in the intervention group compared to the control group. The FNS scale indicated that family needs satisfaction was higher in the intervention group compared to the control group. The data obtained demonstrated that there was a reduction the pain, fatigue, depression, anxiety, drowsiness, and shortness of breath levels in the intervention group compared to the control group, but there was no significant difference other than these symptoms. CONCLUSIONS: The educational intervention positively impacted symptom management and family needs. Optimizing symptom control would greatly benefit palliative care patients and their caregivers.


Subject(s)
Caregivers , Neoplasms , Palliative Care , Humans , Female , Male , Palliative Care/methods , Palliative Care/standards , Middle Aged , Neoplasms/complications , Neoplasms/therapy , Neoplasms/psychology , Aged , Caregivers/psychology , Caregivers/education , Adult , Symptom Assessment/methods , Pain Management/methods , Pain Management/standards , Surveys and Questionnaires
10.
Clín. salud ; 35(1): 21-26, Mar. 2024. tab
Article in English | IBECS | ID: ibc-231079

ABSTRACT

Background: This preliminary study examined the mediating role of illness representations on health-related quality of life (HRQoL) between adherent and poorly adherent obstructive sleep apnea patients (OSA) to the automatic positive airway pressure (APAP) therapy. Method: A total of 185 patients were assessed on determinants of APAP treatment, illness representations, family coping, and self-efficacy, at T1 (prior to APAP treatment) and T2 (1 to 2 months with APAP treatment). Results: Regarding the determinants of APAP, adherent patients showed higher self-efficacy, outcome expectations, and decisional balance index, compared to poorly adherent patients. Adherent patients also showed higher family coping and HRQoL, but less threatening cognitive representations compared to poorly adherent patients. Illness cognitive and emotional representations mediated the relationship between self-efficacy/family coping and HRQoL, in adherent patients. Only illness cognitive representations mediated the relationship between self-efficacy and HRQoL in poorly adherent patients. Conclusions: The results highlight the importance of illness representations during OSA treatment in the promotion of adherence to APAP.(AU)


Antecedentes: Este estudio preliminar examina el papel mediador de la representación de la enfermedad en la calidad de vida relacionada con la salud (CVRS) entre pacientes con apnea obstructiva del sueño (AOS) observantes y poco observantes de la terapia de presión positiva automática en las vías respiratorias (APAP). Método: Se evaluó a un total de 185 pacientes sobre los determinantes del tratamiento APAP, las representaciones de la enfermedad, el afrontamiento familiar y la autoeficacia en T1 (antes del tratamiento APAP) y T2 (1 a 2 meses con tratamiento APAP). Resultados: En cuanto a los determinantes de la APAP, los observantes mostraron mayor autoeficacia, expectativas de resultados e índice de equilibrio decisional en comparación con los poco observantes. Los observantes también mostraron un mayor afrontamiento familiar y CVRS pero menos representaciones cognitivas amenazantes en comparación con los observantes deficientes. Las representaciones cognitivas y emocionales de la enfermedad mediaron la relación entre la autoeficacia/afrontamiento familiar y la CVRS en pacientes observantes. Solo las representaciones cognitivas de enfermedad mediaron la relación entre la autoeficacia y la CVRS en pacientes de baja observancia. Conclusiones: Los resultados destacan la importancia de las representaciones de la enfermedad durante el tratamiento de la AOS en la promoción de la adherencia a la APAP.(AU)


Subject(s)
Humans , Male , Female , Sleep Apnea, Obstructive , Quality of Life , Continuous Positive Airway Pressure , Self Efficacy , Symptom Assessment/psychology , Mental Health , Psychology, Clinical , Proof of Concept Study , Family Relations
16.
Hipertens. riesgo vasc ; 41(1): 62-65, Ene-Mar, 2024. ilus, tab
Article in Spanish | IBECS | ID: ibc-231668

ABSTRACT

El síndrome post-COVID-19 es un conjunto de síntomas y signos que persisten durante más de 12 semanas después de una infección por COVID-19 y actualmente carece de una definición clínica estandarizada. Únicamente se ha informado un caso en el que un feocromocitoma se confundió con un síndrome post-COVID-19. La sintomatología de este síndrome es variable y abarca desde la cefalea y la fatiga hasta la disnea persistente y las alteraciones neurocognitivas. Además, el SARS-CoV-2 puede afectar al sistema nervioso autónomo, contribuyendo a síntomas que se asemejan a los del feocromocitoma. Se recalca la importancia y la necesidad de discernir entre síntomas relacionados con la COVID-19 y otras afecciones, ya que la especificidad de las manifestaciones clínicas del síndrome post-COVID-19 es muy baja y puede ser confundido con otras enfermedades vitales. Se presenta un caso en el que un feocromocitoma fue confundido con un síndrome post-COVID-19 en una paciente sin antecedentes médicos.(AU)


Post-COVID-19 syndrome is a set of symptoms and signs that persist for more than 12 weeks after COVID-19 infection and currently lacks a standardised clinical definition. Only one case has been reported in which a pheochromocytoma was mistaken for post-COVID-19 syndrome. The symptomatology of this syndrome is variable and ranges from headache and fatigue to persistent dyspnoea and neurocognitive disturbances. In addition, SARS-CoV-2 can affect the autonomic nervous system, contributing to symptoms resembling those of pheochromocytoma. The importance and need to discern between COVID-19-related symptoms and other conditions is emphasised, as the specificity of the clinical manifestations of post-COVID-19 syndrome is very low and can be confused with other vital pathologies. A case is presented in which a pheochromocytoma was mistaken for post-COVID-19 syndrome in a patient with no medical history.(AU)


Subject(s)
Humans , Female , Middle Aged , Pheochromocytoma , Headache , /diagnosis , Hypertension , Symptom Assessment , Bronchopneumonia , /epidemiology , Arterial Pressure , Inpatients , Physical Examination
17.
Enferm. nefrol ; 27(1): 30-35, ene.-mar. 2024. graf
Article in Spanish | IBECS | ID: ibc-232072

ABSTRACT

Objetivo: Determinar la relación entre calidad de vida percibida por el paciente en hemodiálisis, el momento de medición de esta y el número de síntomas/complicaciones acontecidos durante la sesión.Material y Método: Estudio observacional longitudinal en pacientes en hemodiálisis con capacidad cognitiva conservada. Se recogieron variables sociodemográficas y clínicas, así como calidad de vida mediante instrumento Coop-Wonka.El estudio se desarrolló en 2 fases:Primera fase: evaluación calidad de vida preHD, cuestionario autoadministrado (en las 12 h previas a 1ª sesión semanal).Segunda fase: 4 semanas más tarde, cumplimentación del mismo cuestionario de calidad de vida, administrado por enfermería (al finalizar 1ª sesión semanal).Durante cuatro semanas se recogieron todos los síntomas, complicaciones mecánicas y situaciones de estrés experimentadas por el paciente durante las sesiones.Resultados: Se estudiaron 61 pacientes, 39 hombres (64%). Edad 67,7±13 años. Tiempo en hemodiálisis 68,7±79 meses. Las puntuaciones globales de calidad de vida relacionada con la salud fueron 25,6±6,9 puntos (1ª fase) y 24,2±7 puntos (2ª fase), con diferencias significativas entre ambos periodos. Se registraron 328 síntomas (0,44±0,54/paciente y sesión).El tiempo en hemodiálisis se relacionó con sintomatología y calidad de vida, presesión y post-sesión.Y la sintomatología se relacionó con calidad de vida relacionada con la salud pre y post-sesión.Conclusiones: A mayor tiempo en hemodiálisis los pacientes presentan peor calidad de vida y más sintomatología durante las sesiones. La percepción sobre su estado de salud, es mejor post-sesión en comparación con la percibida antes de la sesión de diálisis. (AU)


Objective: To determine the relationship between patients’ perceived quality of life on hemodialysis, the timing of its measurement, and the number of symptoms/complications occurring during the session.Material and Method: Longitudinal observational study in hemodialysis patients with preserved cognitive capacity. Sociodemographic and clinical variables and quality of life were collected using the Coop-Wonka instrument. The study was conducted in 2 phases:First phase: pre-HD quality of life evaluation, self-administered questionnaire (12 hours before the 1st weekly session).Second phase: 4 weeks later, completion of the same quality of life questionnaire, administered by nursing staff at the end of the 1st weekly session. All symptoms, mechanical complications, and stress situations experienced by the patient during the sessions were recorded for four weeks.Results: Sixty-one patients were studied, 39 men (64%). The mean age was 67.7±13 years. Time on hemodialysis was 68.7±79 months. Overall scores for health-related quality of life were 25.6±6.9 points (1st phase) and 24.2±7 points (2nd phase), with significant differences between both periods. 328 symptoms were recorded (0.44±0.54/patient and session). Time on hemodialysis was related to symptomatology and quality of life, pre-session and post-session. Symptoma-tology was related to health-related quality of life pre and post-session.Conclusions: Patients who have been on hemodialysis for more extended periods have worse quality of life and more symptoms during the sessions. Their perception of their health status is better post-session compared to pre-dialysis sessions. (AU)


Subject(s)
Humans , Middle Aged , Aged , Aged, 80 and over , Renal Dialysis , Quality of Life , Symptom Assessment , Longitudinal Studies
18.
BMC Palliat Care ; 23(1): 75, 2024 Mar 16.
Article in English | MEDLINE | ID: mdl-38493155

ABSTRACT

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


Subject(s)
Neoplasms , Sleep Wake Disorders , Adult , Humans , Palliative Care , Inpatients , Symptom Assessment , Prevalence , Cross-Sectional Studies , Retrospective Studies , Neoplasms/complications , Neoplasms/epidemiology , Neoplasms/therapy , Constipation/diagnosis , Constipation/epidemiology
19.
Hepatol Commun ; 8(4)2024 Apr 01.
Article in English | MEDLINE | ID: mdl-38497942

ABSTRACT

BACKGROUND: While there is a growing need for interventions addressing symptom burden in patients with decompensated cirrhosis (DC), the lack of validated symptom assessment tools is a critical barrier. We investigated the psychometric properties of the revised Edmonton Symptom Assessment System (ESAS-r) in a longitudinal cohort of patients with DC. METHODS: Adult outpatients with DC were prospectively recruited from a liver transplant center and completed ESAS-r at baseline and week 12. We examined reliability, floor/ceiling effects, structural validity, and known-groups validity. We examined the convergent and predictive validity of ESAS-r with health-related quality of life using the Short Form Liver Disease Quality of Life (SF-LDQOL) and responsiveness to changes in anxiety and depression using the Hospital Anxiety and Depression Scale and Patient Health Questionnaire-9 from baseline to week 12. RESULTS: From August 2018 to September 2022, 218 patients (9% Child-Pugh A, 59% Child-Pugh B, and 32% Child-Pugh C) were prospectively recruited and completed the ESAS-r, SF-LDQOL, Patient Health Questionnaire-9, and Hospital Anxiety and Depression Scale at baseline and week 12 (n = 135). ESAS-r had strong reliability (Cronbach's alpha 0.86), structural validity (comparative fit index 0.95), known-groups validity (Child-Pugh A: 25.1 vs. B: 37.5 vs. C: 41.4, p = 0.006), and convergent validity (r = -0.67 with SF-LDQOL). Floor effects were 9% and ceiling effects were 0.5%. Changes in ESAS-r scores from baseline to week 12 significantly predicted changes in SF-LDQOL (ß = -0.36, p < 0.001), accounting for 30% of the variation. ESAS-r was strongly responsive to clinically meaningful changes in SF-LDQOL, Patient Health Questionnaire-9, and Hospital Anxiety and Depression Scale. CONCLUSIONS: ESAS-r is a reliable, valid, and responsive tool for assessing symptom burden in patients with DC and can predict changes in health-related quality of life. Future directions include its implementation as a key outcome measure in cirrhosis care and clinical trials.


Subject(s)
Quality of Life , Symptom Burden , Adult , Humans , Reproducibility of Results , Symptom Assessment , Liver Cirrhosis/complications , Liver Cirrhosis/diagnosis
20.
Nurs Sci Q ; 37(2): 154-165, 2024 Apr.
Article in English | MEDLINE | ID: mdl-38491883

ABSTRACT

In this article, the authors aimed to determine the effect of the training and follow-up based on the Neuman systems model provided to patients undergoing chemotherapy on their self-efficacy and symptom control. The study was carried out with a randomized controlled experimental study model design. The sample consisted of 102 patients including 52 in the experimental group and 50 in the control group. The data were collected using the Patient Information Form, the Cancer Behavior Inventory-Brief (CBI-B), and the Edmonton Symptom Assessment Scale (ESAS). A personal training program prepared according to the Neuman systems model was applied to the experimental group patients. In the intergroup comparison of the experimental and control group patients, there was an increase in the posttest CBI-B scores and a decrease in the ESAS scores in the experimental group compared to the control group, and the intergroup difference was statistically significant (p < .05). According to the results, to improve the self-efficacy and symptom control in patients undergoing chemotherapy, using this education and follow-up program is recommended.


Subject(s)
Neoplasms , Self Efficacy , Humans , Follow-Up Studies , Neoplasms/drug therapy , Research Design , Symptom Assessment/methods
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