RESUMO
PURPOSE: To determine which demographic and clinical characteristics are predictive of vision-related quality of life (VrQoL) and quality of life (QoL) in patients with macular oedema receiving intravitreal anti-vascular endothelial growth factor (VEGF) treatment. METHODS: Vision-related quality of life (VrQoL) and quality of life (QoL) were measured in 712 patients with retinal exudative disease receiving anti-VEGF treatment at baseline, 6 and 12 months. VrQoL was measured using an item-response theory based 47-question item bank (EyeQ), whereas QoL was measured using the EuroQol Five Dimensions (EQ-5D) questionnaire. The EQ-5D score was dichotomized into a perfect score of 1 and a suboptimal score of <1. Demographic and clinical patient characteristics were considered as possible predictors of (Vr)QoL. Prediction models for (Vr)QoL were created with linear mixed models and generalised estimating equations, using a forward selection procedure. RESULTS: A worse VrQoL was predicted by poorer LogMAR visual acuity of the better eye, female sex, single civil status, older age, longer length of anti-VEGF treatment at baseline and the presence of non-ocular and ocular comorbidities. Suboptimal EQ-5D scores were predicted by poorer LogMAR visual acuity of the better eye, female sex, single civil status, older age, the presence of non-ocular comorbidities and a lower educational background. CONCLUSIONS: Along with visual acuity of the better eye, which is the main factor used in clinical decision making, other patient characteristics should also be considered for the risk assessment of (Vr)QoL, such as sex, age, civil status, comorbidities and length of anti-VEGF treatment.
Assuntos
Edema Macular , Inibidores da Angiogênese/uso terapêutico , Feminino , Humanos , Injeções Intravítreas , Edema Macular/induzido quimicamente , Edema Macular/tratamento farmacológico , Qualidade de Vida , Ranibizumab/uso terapêutico , Fator A de Crescimento do Endotélio Vascular/uso terapêutico , Transtornos da Visão , Acuidade VisualRESUMO
PURPOSE: Patients with exudative and nonexudative age-related macular degeneration (AMD) can experience physical, mental, social, administrative or financial burden that are associated with the treatment of this progressive chronic disease. The role of healthcare providers in supporting patients who experience high treatment burden can be important, especially when it comes to effective communication. Despite previous research underlining the need to improve patient-provider communication in AMD care, patient experiences with communication, and how these are related to perceived treatment burden, remain underexplored. METHODS: A survey was distributed among Dutch patients with AMD, which contained questions on several aspects of communication with the patient's ophthalmologist, such as the Quality Of communication Through the patients' Eyes (QUOTE-COMM, including task-, affect- and therapy-oriented communication) questionnaire. Patients were primarily enlisted through a patient association. RESULTS: A total of 162 patients completed the questionnaire, of which 133 provided fully completed responses. While patients reported positive experiences with affect-oriented communication of their ophthalmologist, they rated task- and therapy-oriented communication as below their expectations. Most patients wished to receive (additional) information on AMD-related costs (71%), future perspectives (71%) and coping with negative emotions pertaining to the disease (68%). Both lower experience scores on task- and affect-oriented communication and lower self-efficacy were associated with higher administrative burden and mental burden among patients. CONCLUSION: Our study shows that current communication, information provision and decision-making do not fully meet patients' needs and preferences. Enhancing patient-provider communication seems important, as effective dialogue is likely to diminish patients' perceived treatment burden.
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BACKGROUND: Although pulsed-dye-laser therapy is currently the gold standard for the treatment of port-wine stains, few objective data are available on its long-term efficacy. Using objective color measurements, we performed a 10-year follow-up of a previously conducted prospective clinical study of the treatment of port-wine stains with a pulsed-dye laser. METHODS: We invited the patients to undergo repeated color measurements performed by the same procedures as in the previous study. The results at long-term follow-up were compared with color measurements obtained before treatment and after completion of an average of five laser treatments of the complete port-wine stain. A questionnaire was used to investigate patients' satisfaction with the treatment and their perception of long-term changes in the stain. RESULTS: Of the 89 patients from whom color measurements were obtained in the previous study, 51 were included in this study. The patients had received a median of seven additional treatment sessions since the last color measurement, which had been made after an average of five treatments. The median length of follow-up was 9.5 years. On average, the stain when measured at follow-up was significantly darker than it was when measured after the last of the initial five laser treatments (P=0.001), but it was still significantly lighter than it was when measured before treatment (P<0.001). Fifty-nine percent of patients were satisfied with the overall treatment result. Six percent of patients reported that the stain had become lighter since their last treatment, 59% that it was unchanged, and 35% that it had become darker. CONCLUSIONS: Using objective color measurements, we observed significant redarkening of port-wine stains at long-term follow-up after pulsed-dye-laser therapy. Patients should be informed about the possibility of redarkening before beginning treatment.
Assuntos
Terapia com Luz de Baixa Intensidade , Mancha Vinho do Porto/radioterapia , Adolescente , Adulto , Criança , Feminino , Seguimentos , Humanos , Masculino , Satisfação do Paciente , Recidiva , Pigmentação da Pele , Inquéritos e QuestionáriosRESUMO
Radiotherapy with very high energy electrons has been investigated for a couple of decades as an effective approach to improve dose distribution compared to conventional photon-based radiotherapy, with the recent intriguing potential of high dose-rate irradiation. Its practical application to treatment has been hindered by the lack of hospital-scale accelerators. High-gradient laser-plasma accelerators (LPA) have been proposed as a possible platform, but no experiments so far have explored the feasibility of a clinical use of this concept. We show the results of an experimental study aimed at assessing dose deposition for deep seated tumours using advanced irradiation schemes with an existing LPA source. Measurements show control of localized dose deposition and modulation, suitable to target a volume at depths in the range from 5 to 10 cm with mm resolution. The dose delivered to the target was up to 1.6 Gy, delivered with few hundreds of shots, limited by secondary components of the LPA accelerator. Measurements suggest that therapeutic doses within localized volumes can already be obtained with existing LPA technology, calling for dedicated pre-clinical studies.