Impact of Lighting Assessment and Optimization on Participation and Quality of Life in Individuals with Vision Loss.

This pilot study was designed to investigate the effects of a holistic lighting intervention on the quality of life for individuals with low vision. Sixty participants (44 women; median age 69 years) with visual impairment received lighting interventions, including a home visit and consultation in a lighting lab. Assisted by low vision consultants, participants evaluated their performance using the Canadian Occupational Performance Measure (COPM) before and after the intervention. Improvements in visual functioning and quality of life were evaluated using the 39-item National Eye Institute Visual Function Questionnaire (NEI VFQ-39), the Groffman Visual Tracing Test, and the Farnsworth Dichotomous Test (D15). Following the lighting intervention, scores improved for all activities in the COPM (p < 0.01), for near activities and vision-specific role difficulties in the VFQ-39 (p < 0.05), and overall in the D15 test (p < 0.05). These results suggest the intervention provided an effective method for improving the participants' quality of life and performance.

A pilot study examining the efficacy of hochuekkito for improving quality of life in patients with myeloproliferative neoplasms.

BACKGROUND: The prognosis of Philadelphia chromosome-negative myeloproliferative neoplasms is relatively favorable, but the quality of life can be severely affected by myeloproliferative neoplasm-related symptoms such as fatigue, pruritus, night sweats, bone pain, fever and weight loss. In this study, we administered hochuekkito, a traditional herbal medicine, to patients with myeloproliferative neoplasms and investigated whether there was a reduction in myeloproliferative neoplasm-related symptoms. METHODS: We conducted a randomized parallel-group pilot study. Patients were assigned to a hochuekkito administration or non-hochuekkito administration group. Myeloproliferative neoplasm-related symptoms based on Myeloproliferative Neoplasm Symptom Assessment Form total symptom score and European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Core 30 were examined before hochuekkito administration and 4 and 8 weeks after administration. RESULTS: Among the 42 patients included in the analysis, 21 were assigned to the hochuekkito group and 21 were assigned to the control group. After administering hochuekkito, the median values of Myeloproliferative Neoplasms Symptom Assessment Form total symptom score at 4 and 8 weeks in the hochuekkito group demonstrated a decreasing trend; however, the difference between the two groups was not significant. CONCLUSIONS: In this study, we were unable to demonstrate significant differences between the hochuekkito and control groups in terms of the efficacy of hochuekkito in treating myeloproliferative neoplasm-related symptoms. However, there were cases that presented prominent improvement in symptoms in the hochuekkito group. The only reported adverse event was grade 1 impaired hepatic function. Therefore, hochuekkito might be a therapeutic option for patients with severely affected quality of life due to myeloproliferative neoplasm-related symptoms.

Repercussões do câncer na qualidade de vida de homens em tratamento quimioterápico / Cancer repercussions on the quality of life of men in chemotherapeutic treatment

Resumo Objetivo: Esse estudo objetivou avaliar o nível de qualidade de vida entre pacientes do sexo masculino em tratamento quimioterápico. Metodologia: Trata-se de estudo descritivo com abordagem quantitativa, realizado de abril a junho de 2019, no serviço de quimioterapia de um hospital escola da região norte do Ceará. A coleta de dados foi realizada através de questionário sociodemográfico e de instrumento para avaliação da qualidade de vida. Resultados: Participaram do estudo 61 pacientes, com média de idade de 60,29 anos, casados e com baixa escolaridade, cujos domínios de qualidade de vida que apresentaram menores médias de escores foram o físico e autoavaliação da qualidade de vida. Já os domínios melhores avaliados foram o psicológico, relações sociais e meio ambiente. Conclusão: A autoavaliação da qualidade de vida geral dos participantes obteve avaliação relativamente satisfatória, evidenciando-se que os impactos do câncer na qualidade de vida dos pacientes do sexo masculino em tratamento quimioterápico afetam principalmente os aspectos relacionados ao domínio físico, o que demanda a prestação de assistência multiprofissional e de enfermagem integral e holística, que busque mitigar as implicações dessa patologia e melhorar a qualidade de vida dos sujeitos.

Resumen Objetivo: Evaluar el nivel de calidad de vida de los pacientes masculinos sometidos a quimioterapia. Método: Se trata de un estudio descriptivo con abordaje cuantitativo, realizado de abril a junio de 2019, en el servicio de quimioterapia de un hospital universitario de la región norte de Ceará. La recolección de datos se realizó a través de un cuestionario sociodemográfico y un instrumento para evaluar la calidad de vida. Resultados: En el estudio participaron 61 pacientes, con una edad promedio de 60,29 años, casados ​​y con bajo nivel educativo. En los dominios de calidad de vida, las puntuaciones medias más bajas fueron la calidad de vida física y autoevaluada. Los dominios mejor evaluados fueron el psicológico, las relaciones sociales y el medio ambiente. Conclusión: La autoevaluación de la calidad de vida general de los participantes obtuvo una evaluación relativamente satisfactoria, mostrando que los impactos del cáncer en la calidad de vida de los pacientes masculinos sometidos a quimioterapia inciden principalmente en aspectos relacionados con el dominio físico, lo que demanda la prestación de asistencia multiprofesional y de enfermería integral y holística, la cual busca mitigar las implicaciones de esta patología y mejorar la calidad de vida de los sujetos.

ABSTRACT Objective: To assess the level of quality of life among male patients undergoing chemotherapy. Method: This a descriptive study with a quantitative approach carried out from April to June 2019, at the chemotherapy service of a teaching hospital in northern Ceará. The data collection was carried out using a sociodemographic questionnaire and an instrument to assess the quality of life. Results: 61 patients participated in the study; they were of an average age of 60.29 years old, married and with low education. The quality of life domains that had lower mean scores were physical and self-rated quality of life. The best assessed domains were psychological, social relationships and the environment. Conclusion: The self-assessment of the general quality of life of the participants obtained a relatively satisfactory evaluation showing that the impact of cancer on the quality of life of male patients undergoing chemotherapy mainly affected aspects related to the physical domain, which demands a multi-professional approach with comprehensive and holistic nursing to mitigate the implications of this pathology and to improve the quality of life of the subjects

Health-related quality of life and work impairment in idiopathic inflammatory myopathies in South Australia.

AIM: The idiopathic inflammatory myopathies (IIM) are rare autoimmune diseases that are usually chronic and often present with skeletal muscle inflammation and weakness. We sought to examine the impact of IIM in a cohort of 50 South Australian patients on health-related quality of life (HRQOL) and work productivity (WP). We uniquely categorized patients across gender, IIM subtypes, employment status, and also whether there was extramuscular involvement from IIM. METHODS: Multiple modalities were used, as recommended by the International Myositis Assessment and Clinical Studies Group (IMACS), to assess the impact of IIM, including manual muscle strength testing (MMT-8), the Physician and Patient Global Activity Assessments (PHGAA, PTGAA), Myositis Disease Activity Assessment Tool (MDAAT), and serum creatinine kinase (CK) levels. The impacts of IIM on HRQOL and WP were analyzed using the Medical Outcomes Study 36-items Short Form (SF-36) and Work Productivity and Activity Impairment (WPAI) questionnaires, respectively. RESULTS: We found significantly lower HRQOL outcome scores in most of the SF-36 domains when compared to the most recent population norms (P ≤ .01). Physical health was predominantly affected with relative preservation of emotional health. There were also significant associations between MMT-8, PHGAA and PTGAA scores and HRQOL and WP. CONCLUSIONS: Our findings highlight the significant impact of IIM on HRQOL and WP in a well-characterized cohort of patients with IIM within Australia, and therefore the importance of a holistic approach to the management of these patients.

Conjuntura de clientes colostomizados de um centro integrado de saúde, referência no estado do Piauí / Conjuncture of colostomized clients of na integrated health center, reference in the state of Piauí / Conjuntura de clientes colostomizados de un centro integrado de salud, referencia en el estado del Piauí

Objetivo: analisar a real conjuntura de clientes colostomizados quanto ao conhecimento sobre importância da colostomia, as mudanças ocorridas na sua vida e as dificuldades enfrentadas frente à qualidade de vida. Método: trata-se de uma pesquisa exploratória, descritiva com abordagem qualitativa realizada no Centro Integrado de Saúde referência no estado do Piauí, com 17 clientes que utilizavam bolsa de colostomia. Os dados foram coletados nos meses de março e abril de 2015. Para a análise dos dados, utilizou-se o Discurso do Sujeito Coletivo. Resultados: as pessoas que utilizavam a bolsa de colostomia desenvolveram formas de enfrentamento, dentre essas se destacaram a reflexão, o conhecimento sobre o problema de saúde, o isolamento social e a adaptação. Conclusão: é necessário orientar e fortalecer as estratégias de enfrentamento, pois as mesmas contribuem para diminuir as complicações relacionadas às mudanças físicas e psicológicas do paciente

Objective: to analyze the real situation of colostomized clients in terms of knowledge about the importance of the colostomy, the changes that occurred in their life and the difficulties faced in the quality of life. Method: this is an exploratory, descriptive study with a qualitative approach performed at the Integrated Health Center in the state of Piauí, with 17 clients using a colostomy bag. The data were collected in the months of March and April of 2015. For the analysis of the data, the Discourse of the Collective Subject was used. Results: people who used the colostomy bag developed forms of coping, such as reflection, knowledge about the health problem, social isolation and adaptation. Conclusion: it is necessary to orient and strengthen coping strategies, since they contribute to reduce the complications related to the physical and psychological changes of the patient

Objetivo: analizar la real coyuntura de clientes colostomizados en cuanto al conocimiento sobre la importancia de la colostomía, los cambios ocurridos en su vida y las dificultades enfrentadas frente a la calidad de vida. Método: trata de una investigación exploratoria, descriptiva con abordaje cualitativo realizada en el Centro Integrado de Salud referencia en el estado de Piauí, con 17 clientes que utilizaban bolsa de colostomía. Los datos fueron recolectados en los meses de marzo y abril de 2015. Para el análisis de los datos, se utilizó el Discurso del Sujeto Colectivo. Resultados: las personas que utilizaban la bolsa de colostomía desarrollaron formas de enfrentamiento, entre ellas se destacaron la reflexión, el conocimiento sobre el problema de salud, el aislamiento social y la adaptación. Conclusión: es necesario orientar y fortalecer las estrategias de enfrentamiento, pues las mismas contribuyen a disminuir las complicaciones relacionadas con los cambios físicos y psicológicos del paciente

Patient experience of long-term recovery after open fracture of the lower limb: a qualitative study using interviews in a community setting.

OBJECTIVES: Treatment of open fractures is complex and patients may require muscle and skin grafts. The aim of this study was to gain a greater understanding of patient experience of recovery from open fracture of the lower limb 2-4 years postinjury. DESIGN: A phenomenological approach was used to guide the design of the study. Interviews took place between October 2016 and April 2017 in the participants' own homes or via telephone. SETTING: England, UK. PARTICIPANTS: A purposive sample of 25 patients were interviewed with an age range of 26-80 years (median 51), 19 were male and six female, and time since injury was 24-49 months (median 35 months). RESULTS: The findings identified a focus on struggling to recover as participants created a new way of living, balancing moving forward with accepting how they are, while being uncertain of the future and experiencing cycles of progress and setbacks. This was expressed through three themes: (i) 'being disempowered' with the emotional impact of dependency and uncertainty, (ii) 'being changed' and living with being fragile and being unable to move freely and (iii) 'being myself' with a loss of self, feeling and looking different, alongside recreation of self in which they integrated the past, present and future to find meaningful ways of being themselves. CONCLUSION: This study identified the long-term disruption caused by serious injury, the hidden work of integration that is required in order to move forward and maximise potential for recovery. Supportive strategies that help people to self-manage their everyday emotional and physical experience of recovery from injury are required. Research should focus on developing and testing effective interventions that provide support and self-management within a holistic rehabilitation plan. TRIAL REGISTRATION NUMBER: Current Controlled Trials ISRCTN33756652; Post-results.

Autohemotherapy with ozone as a possible effective treatment for Fibromyalgia.

OBJECTIVE: The objective of this study is to evaluate the effectiveness of autohemotherapy with ozone in the management of fibromyalgia (FM). DESIGN: 20 FM patients (according to the criteria of the American College of Rheumatology), were treated with 10 sessions of ozone hemotherapy (2 sessions per week) with a concentration of 30-60 mcgr/ml. The health condition of the patients was evaluated before and after treatment, through the Fibromyalgia Impact Questionnaire (FIQ). Blood samples were obtained from all patients by venous puncture for biochemical routine analysis and serotonin levels in serum and the following peripheral blood mononuclear cells (BMCs) were isolated for oxidative stress quantification: reactive oxygen species (ROS) generation, and lipid peroxidation (LP) and protein carbonyl (PC) content, as these are signs of oxidative cell damage. RESULTS: All patients treated with ozone reported an improvement in sleep and mental alertness, a marked decrease of asthenia accompanied by a decrease of FIQ as well as tender points, and a moderate increase of serotonin levels. Also, an important decrease of LP and PC was observed; ROS also decreased, although less obvious, which indicates a reduction in oxidative stress levels. CONCLUSIONS: The autohemotherapy with ozone in patients with FM showed an important decline of tender points and FIQ score, as well as a decrease of oxidative stress levels. This treatment allows patients to face life with greater vitality and less drug use, diminishing harmful side effects. Further investigation should be carried out, including groups with more patients and clinical trials, to elucidate the effect of ozone therapy in patients suffering from FM.

Calidad de vida de pacientes con enfermedad pulmonar obstructiva crónica, participantes en un programa educativo integral / Quality of life of patients with chronic obstructive pulmonary disease participating in a comprehensive educational program

Resumen Introducción: La Enfermedad Pulmonar Obstructiva Crónica (EPOC) es una enfermedad altamente prevalente que se caracteriza principalmente por la disnea, la cual genera un impacto sobre la calidad de vida del individuo. El programa de cuidado respiratorio integral ofrece una intervención esencialmente educativa, individualizada y multidisciplinaria enfocada en las necesidades del paciente y su familia, buscando mejorar la calidad de vida. Objetivo: Describir el efecto de un programa educativo de cuidado integral en la calidad de vida de pacientes con enfermedad pulmonar obstructiva crónica. Materiales y métodos: Se realizó un estudio descriptivo transversal incluyendo pacientes con diagnóstico de EPOC en quienes se aplicó el cuestionario para medición de calidad de vida Saint George al ingreso y a los seis meses de estar vinculado al programa. Se realizaron pruebas estadísticas no paramétricas debido al comportamiento no gaussiano de las variables. Resultados: Se incluyeron un total de 31 pacientes con promedio de edad 82,7 años, 43,3% tenían antecedente de tabaquismo, de las variaciones en la encuesta Saint George se observó un cambio significativo en el dominio de actividad y en el puntaje global de la encuesta al ser aplicada a los seis meses de seguimiento. Conclusiones: La implementación del programa educativo integral parece apoyar la mejoría en la calidad de vida de los participantes con diagnóstico de EPOC. Futuros estudios prospectivos podrán validar esta hipótesis.

Abstract Introduction: The Chronic Obstructive Pulmonary Disease (COPD) is a highly prevalent disease, characterized mainly by dyspnea, which has an impact on the quality of life of the person. The program of comprehensive respiratory care offers an essentially educational, individualized and multidisciplinary intervention focused on the needs of the patient and its family, seeking to improve the quality of life and associated morbidities. Objective: To describe the quality of life in a comprehensive care program for patients with chronic obstructive pulmonary disease. Methods: A cross-sectional retrospective descriptive study was carried out, including patients diagnosed with COPD, in whom the Saint George quality of life questionnaire was applied at admission and six months after being linked to the program. Student's t test was performed for the analysis by normality tests. Results: A total of 31 patients with an average age of 82.7 years were included, 43.3% had a history of smoking, variations in the Saint George survey showed a significant change in the domain of activity and in the overall score when applied to the six-month follow-up. Conclusions: The implementation of the comprehensive educational program seems to support the improvement in the quality of life of participants diagnosed with COPD. Future prospective studies may validate this hypothesis.

Use of Complementary and Alternative Therapies in Outpatients with Atopic Dermatitis from a Dermatological University Department.

BACKGROUND: Treatment of atopic dermatitis (AD) may be challenging, therefore some patients seek complementary and alternative medications (CAM). We determined prevalence and predictors for CAM use in a hospital cohort of AD patients. MATERIAL AND METHODS: Between January 1, 2012, and December 31, 2017, AD patients referred to the dermatological outpatient clinic at Bispebjerg Hospital were included in the study. Information on CAM use, demographics and disease characteristics were obtained by questionnaire, and associations were determined by χ2 and t test separately for children (< 16 years) and adults (≥16 years). RESULTS: In total 441 filled in the questionnaire on AD, and 433 patients responded to the questions about CAM use: 198 children and 235 adults. A total of 137 (31.6%) had used one or more CAM. CAM use in children was significantly associated with prior use of ≥2 conventional treatments (p = 0.047) and topical calcineurin inhibitors (p = 0.021), a higher number of affected eczema sites (p < 0.001) including more frequent affection of the face and extremities, a higher SCORAD score (p = 0.045), and low mean overall self-rated health (p = 0.003). CAM use in adults was significantly associated with lower age of onset of AD (p = 0.004), comorbid allergic rhinoconjunctivitis (p = 0.039), frequent use of moisturizing cream (p = 0.024), facial and neck eczema (p = 0.005) and high educational level (p = 0.043). CONCLUSION: CAM use is frequent in both children and adult AD patients. CAM users are characterized by long disease duration, a significant disease burden and by having a longer education. The high prevalence of CAM may indicate that patients' expectations regarding treatment of AD are not redeemed in the conventional health care system.

Predictors of treatment success in children with difficult to treat atopic dermatitis using a personalized integrative multidisciplinary (PIM) treatment programme.

BACKGROUND: A 6-week personalized integrative multidisciplinary treatment programme (PIM) was developed for children with difficult to treat AD who appeared unresponsive to treatment according to current guidelines. OBJECTIVE: The aim of the present study was to identify clinical and psychosocial characteristics that predict long-term treatment success after PIM. METHODS: Treatment was considered successful when there was a 75% reduction on the Self-Administered Eczema Area and Severity Index and/or little impact of AD on daily life, measured with the Children's Dermatology Life Quality Index (score ≤ 6), 6 months after the end of PIM. PIM is a personalized, integrative, multidisciplinary treatment programme with clearly defined goals and strategies, addressing atopic, paediatric, mental health comorbidities and general well-being, for children and adolescents aged 8- to 18 years. Multivariate logistic regression models were constructed using a backward selection procedure. Questionnaires were used to assess psychosocial characteristics; clinical data was extracted from medical records. RESULTS: In total, 79 children/adolescents with difficult to treat AD completed PIM and long-term treatment results were available for 74 children/adolescents. The majority (77%) of children/adolescents demonstrated long-term treatment success with PIM. Predictors of long-term treatment success (adjusted ORs) included maternal disease acceptance OR (95% CI) 1.84 (1.15-2.94). A group (23%) of mostly females OR (95% CI) 0.10 (0.02-0.54) with multiple somatic complaints OR (95% CI) 0.88(0.80-0.97), from families where the mother has anxiety for the use of topical corticosteroids OR (95% CI) 0.62(0.40-0.94), is less likely to obtain long-term treatment success. CONCLUSION: Most children and adolescents with difficult to treat AD, seemingly unresponsive to conventional treatment according to current guidelines, are able to improve with PIM. Psychosocial and family but not clinical variables, predicted long-term treatment success after participating in PIM.

Repercussões do diagnóstico de câncer para homens e mulheres: um estudo comparativo / Impact of the diagnosis of cancer for men and women: a comparative study / Repercusiones del diagnóstico de cáncer para hombres y mujeres: un estudio comparativo

O estudo objetivou identificar e descrever as repercussões do diagnóstico de câncer para homens e mulheres, buscando compreender suas similaridades e diferenças. Realizaram-se entrevistas semiestruturadas com oito homens com câncer de próstata e oito mulheres com câncer de mama, residentes em Goiás. As entrevistas foram gravadas, transcritas, lidas exaustivamente e organizadas a posteriori, ancoradas no construcionismo social, nas seguintes temáticas: significados do processo saúde-doença-cuidado, o diagnóstico e o tratamento e suas implicações. Os resultados mostraram que o diagnóstico de câncer despertou sentimentos negativos e questionamentos profissionais e pessoais nos grupos, os quais foram enfrentados por meio da religiosidade/espiritualidade e no relacionamento com pessoas queridas. Além disso, demonstrou que questões de gênero precisam ser consideradas na assistência direcionada aos grupos pesquisados.

The current study aimed to identify and describe the impact of the diagnosis of cancer for men and women, finding out to understand the similarities and differences between the two groups. Semi-structured interviews were carried out with eight men with prostatic cancer and eight women with breast cancer, who have living in Goiás. The interviews were recorded, transcribed, read exhaustively and posteriori organized, anchored in social constructionism, in the themes: the meanings of the health-disease-care process, the diagnosis, and the treatment and its implications. The results showed that the diagnosis of cancer caused negative feelings for both groups. Other factors were questions related to personal professional dimensions that were coping with religiosity/spirituality and in the relationship with loved ones. In addition, it was demonstrated that gender issues need to be considered in health care directed to the two groups researched.

El estudio tuvo como objetivo identificar y describir las repercusiones del diagnóstico de cáncer para hombres y mujeres, buscando entender sus similitudes y diferencias. Se realizaron entrevistas semi estructuradas con ocho hombres con cáncer de próstata y ocho mujeres con cáncer de mama, residentes en Goiás. Las entrevistas fueron grabadas, transcritas, leídas exhaustivamente y organizadas a posteriori, ancladas en el construccionismo social, en las temáticas: significado del proceso salud-enfermedad-cuidado, el diagnóstico y el tratamiento y sus implicaciones. Los resultados muestran que el diagnóstico de cáncer despertó en ambos grupos sentimientos negativos y preguntas relacionadas a las dimensiones profesional y personal, las cuales fueron enfrentadas por la religiosidad/espiritualidad y en la relación con sus seres queridos. Además, demostró que cuestiones de género deben ser consideradas en la asistencia en salud dirigida a esa población.

Low-Level Nighttime Light Therapy for Age-Related Macular Degeneration: A Randomized Clinical Trial.

Purpose: To investigate the safety, acceptability, and effectiveness of light therapy on the progression of AMD over 12 months. Methods: This was a phase I/IIa, prospective, proof-of-concept, single-center, unmasked randomized controlled trial. Sixty participants (55 to 88 years) with early AMD in the study eye and neovascular AMD (nAMD) in the fellow eye were recruited from a hospital nAMD clinic. Eligible participants were randomized (ratio 1:1) to receive light therapy or to an untreated control group. Light therapy was delivered via a light-emitting mask (peak 505 nm, 23 scotopic Td), which was worn each night for 12 months. Co-primary outcome measures were disease progression (onset of nAMD or increased drusen volume beyond test-retest limits) and change in time constant of cone dark adaptation. Other main outcomes included adverse events, compliance, and subjective sleep quality data. Results: Disease progression over 12 months was seen in 38.1% (18.1%-61.6% confidence interval [CI]) of intervention participants and 48.3% (29.4%-67.5% CI) of controls (Mantel-Haenszel test, common odds ratio = 0.763, P = 0.495). A significantly larger delay in cone adaptation was observed in the intervention group (1.66 ± 0.61 minutes) than in the control group (0.66 ± 0.49 minutes) over the follow-up period. No reported adverse events were deemed to be associated with the intervention. Conclusions: Although acceptable to the patients, light therapy did not have a substantial effect on the progression of early AMD over 12 months. Further investigation is necessary to discover the permanency and cause of the adverse effect of light therapy on dark adaptation.

The Experience of Living With a Gluten-Free Diet: An Integrative Review.

Celiac disease represents a problem in our society, not only because of its interest in terms of healthcare, but also because of its increasing prevalence in recent years and the impact it has on sufferers and their families. This integrative review investigated current knowledge about the experience of living with a gluten-free diet, as well as social support and the role played by nurses and/or associations in the process. A total of 18 articles were selected. Results revealed greater family support is needed to deal with the day-to-day issues of a gluten-free diet. Furthermore, women diagnosed with celiac disease have more psychological distress than men according to some studies. Sufferers of celiac disease report that more information is needed at all levels (hotel and catering, healthcare, social), which would help generate coping strategies. The few studies retrieved that talk about this topic show that following a gluten-free diet affects the personal, family, emotional, social, and financial dimensions of sufferers of celiac disease. The nurse tends to be the person whom those coping with the illness go to for support, although celiac disease associations are also a fundamental pillar in this support. Policy makers need to adapt health services to the needs of individuals with celiac disease.

A quality of life survey in patients with long-term silicone oil or phthisis bulbi.

AIM: The aim of this study is to determine whether there is any difference in the quality of life of patients with a blind eye with long-term silicone oil compared to without. METHOD: Patients with either long-term silicone oil in situ (N = 17), defined as a period greater than 6 months duration with no plan for future removal, or those with a phthisical, non oil-filled eye were identified (N = 13). Two validated questionnaires (NEI VFQ-25 and the FACE-Q) that cover indicators for visual function, pain and cosmesis were sent to all patients in the two cohorts. RESULTS: There was no significant difference found in quality of life outcomes between the two groups in terms of visual function, pain or cosmesis. CONCLUSION: The results of this study support a holistic approach to the consent process before vitreoretinal surgery. Patients that may need to undergo multiple vitreoretinal procedures, where the endstage result is a long-term silicone oil fill, should be informed that their functional outcome may be similar to having no surgical intervention.

Impacto de la enfermedad oncológica infantil. PErcepción de las familias y de las enfermeras. Proyecto de investigación / Research project. The impact of pediatric oncologic disease: families' and nurses' perception

Introducción. Vivir la experiencia de tener un hijoa con cáncer es una situación que genera una crisis en la familia que afecta no solo a nivel estructural, sino también emocional. Las enfermeras son las profesionales miembros del equipo multidisciplinar que se relacionan más tiempo con estas familias, por lo que es interesante saber cómo evidencian esta experiencia para poder mejorar la práctica asistencial, que debe contemplar una orientación holística dentro de los cuidados de alta complejidad que precisa un niño oncológico. Objetivos. Analizar el impacto en las familias producido por el debut de una enfermedad oncológica infantil; describir la percepción de las enfermeras sobre el impacto y la vivencia de las familias en el inicio de una enfermedad oncológica infantil y comparar la percepción que tienen las familias con la percepción de las enfermeras con respecto al debut de la enfermedad oncológica infantil. Ámbito de estudio. Unidad de Oncología y Hospital de Día del Hospital Sant Joan de Déu de Barcelona. Metodología. Estudio cualitativo siguiendo un enfoque basado en la fenomenología hermenéutica de Heidegger. Los participantes serán las familias de niños con cáncer y las enfermeras dedicadas a su cuidado. Para la recogida de datos se utilizará la entrevista en profundidad y, si se considerara pertinente, el grupo de discusión. El tipo de análisis utilizado será el de la temática bajo el método de análisis del contenido, siguiendo el método de análisis Guía QUAGOL (Qualitative Analysis Guide of Leuven) (AU)

Introduction. Going through the experience of having a child with cancer often results in a structural and emotional crisis for the family. Nurses, as professional members of a multidisciplinary team, interrelate the most with the families of oncologic pediatric patients. It is of great interest to provide evidence of nurses’ experience, in order to improve the care practice for children with cancer. Due to these patients’ highly complex needs in terms of care, a holistic approach is required. Objectives. To design a study which will determine the impact that the debut of an oncologic disease on a child has on families, by comparing nurses’ perception on the impact and experience of families going through this process to those of the actual family. Field of study. Oncology Unit and Day Hospital Sant Joan de Déu, Barcelona. Methodology. A qualitative study based on Heidegger’s hermeneutic phenomenology. The subjects of study will be parents of children with cancer and nurses involved in their care. For data collection, interviews and group discussions (if considered relevant) will be collected. The type of analysis used will be content analysis, following the QUAGOL Guide (Qualitative Analysis Guide of Leuven) (AU)

The impact of primary open-angle glaucoma: Quality of life in Indian patients.

PURPOSE: Glaucoma significantly affects the quality of life (QoL) of a patient. Despite the huge number of glaucoma patients in India, not many, QoL studies have been carried out. The purpose of the present study was to evaluate the QoL in Indian patients with varying severity of glaucoma. METHODS: This was a hospital-based, cross-sectional, analytical study of 180 patients. The QoL was assessed using orally administered QoL instruments comprising of two glaucoma-specific instruments; Glaucoma Quality of Life-15 (GQL-15) and Viswanathan 10 instrument, and 1 vision-specific instrument; National Eye Institute Visual Function Questionnaire-25 (NEIVFQ25). RESULTS: Using NEIVFQ25, the difference between mean QoL scores among cases (88.34 ± 4.53) and controls (95.32 ± 5.76) was statistically significant. In GQL-15, there was a statistically significant difference between mean scores of cases (22.58 ± 5.23) and controls (16.52 ± 1.24). The difference in mean scores with Viswanathan 10 instrument in cases (7.92 ± 0.54) and controls (9.475 ± 0.505) was also statistically significant. QoL scores also showed moderate correlation with mean deviation, pattern standard deviation, and vertical cup-disc ratio. CONCLUSION: In our study, all the three instruments showed decrease in QoL in glaucoma patients compared to controls. With the increase in severity of glaucoma, corresponding decrease in QoL was observed. It is important for ophthalmologists to understand about the QoL in glaucoma patients so as to have a more holistic approach to patients and for effective delivery of treatment.

The Psychoexposome: A holistic perspective beyond health and disease / Psicoexposoma: una perspectiva holística más allá de la salud y la enfermedad

Background: The concept of the exposome has emerged as a new strategy for studying all environmental exposures throughout an individual’s life and their impact on human health. Nowadays, electronic devices are available to collect data about an individual’s geolocation, biological function, or exposure biomarkers. The appearance of "omic" sciences and advances in bioinformatics have allowed massive data-gathering and analysis from various scientific fields. Objective: to propose the term Psychoexposome in line with the concept of the exposome from the field of environmental sciences. Method: a literature review of psychological terms associated with the exposome concept was carried out and the rationale and benefits of a psychoexposme approach for psychological sciences is discussed. Results: the terms psychology, psychiatry and neurological diseases are scarce in the exposome approach. A long tradition in psychology of performing epidemiological studies and in the study of multifactorial influences traits places psychologists at an advantageous starting point for conducting psychoexposome studies. Conclusion: psychology may take advantage from both exposome and omic sciences to create an integrated psychoexposome approach that may help in deciphering the etiology of psychological disorders and improving people's mental health (AU)

Antecedentes: el concepto de exposoma surgió como una estrategia para impulsar el estudio exhaustivo de las exposiciones ambientales a lo largo de la vida del individuo y su impacto en la salud. El desarrollo de dispositivos electrónicos para obtener datos de geolocalización, biológicos o biomarcadores de exposición y los avances en las ciencias "ómicas" y en bioinformática permiten la recopilación y el análisis masivo de datos muy diversos. Objetivo: proponer el término psicoexposoma en línea con el concepto de exposoma generado desde las ciencias ambientales. Método: se llevó a cabo una revisión de la literatura para buscar la inclusión de términos psicológicos asociados al concepto de exposoma. Se discute la justificación de un enfoque de psicoexposición para las ciencias psicológicas. Resultados: los términos psicología, psiquiatría o enfermedades neurológicas son escasos en el enfoque del exposoma. La experiencia en el control de variables ambientales sitúa al psicólogo en un punto de partida ventajoso para realizar estudios de psicoexposoma. Conclusión: la psicología puede aprovechar tanto las ciencias de la exposición como las ciencias "ómicas" para crear un enfoque integrado de psicoexposición que pueda ayudar a descifrar la etiología de los trastornos psicológicos y a promover la salud mental del individuo (AU)

Profil clinique et immunologique des patients infectés par le VIH à l'initiation du traitement antirétroviral au centre hospitalier régional de Sokodé (Togo), une décennie après la gratuité de la trithérapie

Introduction : L'initiation tardive du Traitement Anti-Rétroviral (TAR) est fréquente dans les pays à ressources limitées, où la plupart des individus ne connaissent pas leur statut sérologique jusqu'à ce qu'ils soient symptomatiques.Matériel et méthodes : Il s'est agi d'une étude transversale et analytique, qui s'est déroulée du 1er janvier 2016 au 31 décembre 2016 dans le service de médecine générale du Centre Hospitalier Régional (CHR) de Sokodé, le service de référence dans la prise en charge de l'infection à VIH dans la région centrale du Togo.Résultats : Cent-neuf patients dont 15 enfants (13,8%) ont été inclus dans la file active du service de médecine générale du CHR de Sokodé par l'initiation du TAR. La moyenne d'âge des patients était de 32,38 ans [1-59 ans] avec une prédominance féminine (67,9%). La majorité des patients était classée aux stades III (60 cas ; 55%) et au stade IV (11 cas ; 10,1%). Les manifestations cliniques ou affections opportunistes étaient dominées par la diarrhée chronique (15 cas), la fièvre prolongée inexpliquée (12 cas) et la candidose oropharyngée (12 cas). Le taux moyen des CD4 des patients était de 328,54 cellules/mm3 [0-2216 cellules/mm3] et la co-infection VIH-VHB a été retrouvée dans 13,8% (n = 15). L'association Ténofovir (TDF) - Lamivudine (3TC) - Efavirenz (EFV) (87,2% ; n = 95) a été la plus prescrite pour l'initiation du TAR.Conclusion : Le profil des patients infectés par le VIH à l'initiation du TAR à Sokodé est caractérisé par un stade avancé de l'infection à VIH

Cuidados paliativos en hematología clínica: experiencia de una consulta integrativa en pacientes con mieloma múltiple / Palliative care in clinical haematology: Experience of an integrative outpatient clinic in patients with multiple myeloma

OBJETIVO: Describir la experiencia tras el primer año de funcionamiento de una consulta integrativa de cuidados paliativos en pacientes con mieloma múltiple. Materiales y MÉTODOS: Se revisaron las historias clínicas de los pacientes visitados por primera vez en la consulta de cuidados paliativos en pacientes con mieloma múltiple. Durante la primera y las 3 siguientes visitas se evaluaron: dolor, anorexia, estreñimiento, insomnio, náuseas y vómitos, disnea, ansiedad y tristeza; mediante una escala visual numérica [0-10]. Se calculó la carga sintomática de los síntomas físicos y emocionales mediante el sumatorio de las puntuaciones de sus escalas visuales numéricas. La intensidad del dolor y su interferencia se evaluó mediante la versión española del Brief Pain Inventory modificada ad hoc. RESULTADOS: De febrero a diciembre 2013, se visitaron 67 pacientes (mediana desde el diagnóstico 355 días), y tras 3 visitas de seguimiento (mediana 60 días) la proporción de pacientes con dolor moderado-severo (escala visual numérica≥5) se redujo para el «dolor máximo» (57 vs.18%; p < 0,0001) y el «dolor promedio» (24 vs.2%; p < 0,0001). La proporción de pacientes sin interferencia por el dolor mejoró: actividad general (52 vs.82%; p = 0,0001), sueño (73 vs.91%; p = 0,01), estado de ánimo (52 vs.87,5%; p = 0,0001). La carga sintomática física y emocional, y la proporción de pacientes deprimidos (13 vs.5%; p = 0,001) mejoraron. CONCLUSIONES: La integración de los cuidados paliativos en la atención de los pacientes con mieloma múltiple no solo es posible, sino que mejora de forma significativa los síntomas emocionales y físicos

AIM: To describe the experience after the first year of operation of an integrative palliative care clinic for patients with multiple myeloma. MATERIALS AND METHODS: The medical records were reviewed of patients seen for the first time in the integrative palliative care clinic for patients with multiple myeloma. During the first, and the next 3 visits, pain, anorexia, constipation, insomnia, nausea and vomiting, dyspnoea, anxiety, and sadness were evaluated using a visual numeric scale [0-10]. The symptomatic burden of physical and emotional symptoms was calculated by summing the scores of their visual numeric scale. The pain intensity and its interference were assessed using the Spanish version of the Brief Pain Inventory modified ad hoc. RESULTS: From February to December 2013, 67 patients (median 355 days from diagnosis) were seen, and after 3 follow up visits (median 60 days from the first visit) the proportion of patients with moderate-severe pain (visual numeric scale ≥ 5) was reduced for 'worst pain' (57% vs.18%; P < .0001) and 'average pain' (24% vs.2%; P < .0001). The proportion of patients without interference from pain improved in, general activity (52% vs.82%; P=.0001), sleep (73% vs.91%; P =.01), and mood (52% vs.87.5%; P = .0001). There was also improvement in the physical and emotional symptom burden, and the proportion of depressed patients (13% vs.5%; P = .001). CONCLUSIONS: The integration of palliative care in the care of patients with multiple myeloma is not only possible, but also significantly improves the emotional and physical symptoms

The association between pain catastrophising and kinesiophobia with pain and function in people with plantar heel pain.

BACKGROUND: Psychological variables, including catastrophic thoughts and kinesiophobia, are common in people with chronic musculoskeletal pain and are associated with pain and function. However, the role of each factor has not been evaluated in people with plantar heel pain (plantar fasciitis). METHODS: Thirty-six participants diagnosed with plantar heel pain were recruited. Main outcome measures included the Pain Catastrophising Scale, Tampa Scale of Kinesiophobia, the Foot Health Status Questionnaire and a Visual Analogue Scale. Hierarchical regression models were developed to evaluate the association between each psychological variable with variations in foot pain, first step pain and foot function. RESULTS: In a full model with age, sex and BMI, kinesiophobia contributed to 21% of the variability in foot function and was a significant predictor in this model (Beta=-0.49, P=0.006). In a separate model, catastrophising explained 39% of the variability in foot function and was a significant predictor in this model (Beta=-0.65, P<0.001). Finally, pain catastrophising accounted for 18% of the variability in first step pain and was a significant predictor in a model that also included age, sex and BMI (Beta=0.44, P=0.008). CONCLUSIONS: After controlling for age, sex and BMI, kinesiophobia and catastrophising were significantly associated with foot function, while catastrophising was associated with first step pain in people with plantar heel pain. In addition to addressing biological factors in the management of plantar heel pain, clinicians should consider the potential role of pain catastrophising and kinesiophobia in this population.