Calidad de vida en personas con hemofilia: una revisión de la literatura

Introducción: La hemofilia es una enfermedad poco frecuente; no obstante, los avances en los tratamientos de pacientes hemofílicos en las últimas décadas han generado cambios en su calidad de vida. Esto ha motivado el desarrollo de múltiples investigaciones al respecto. Objetivo: Revisar la literatura sobre la calidad de vida en el paciente hemofílico, producida en el periodo 2008-2012. Método: Se consultaron algunas bases de datos científicas utilizando como palabras clave “hemofilia” y “calidad de vida”. Se recopiló la información encontrada y se organizó según los objetivos propuestos en “factores negativos” y “factores protectores” de la calidad de vida a nivel fisiológico, psicosocial y cultural; “instrumentos para la evaluación de la calidad de vida” a nivel específico y general; y antecedentes empíricos de los últimos cinco años en los que se evaluara la calidad de vida o se realizara alguna intervención en la misma. Resultados: En general la información disponible sobre el comportamiento epidemiológico de la hemofilia es limitada. El interés por factores protectores y negativos es principalmente de tipo fisiológico, aunque se encontraron factores de tipo psicosocial y cultural, lo que indica la importancia de profundizar en esta temática. Existen pocos instrumentos especializados para la evaluación de la calidad de vida en hemofílicos. La evidencia empírica se centra en la evaluación. Conclusión: El estudio de la calidad de vida en pacientes hemofílicos amerita ser abordado de manera interdisciplinaria.

Avaliação nutricional de pacientes com câncer

Pós-graduação em Alimentos e Nutrição - FCFAR

Métodos de estimativa de peso e altura na avaliação de desnutrição de pacientes com câncer

To calculate the estimated and actual height and weight measures in cancer patients, evaluate the correlation and concordance of these measures and to identify the malnutrition patients. 62 cancer patients, treated at the Amaral Carvalho Hospital (Jaú- SP). For classifi cation of nutritional status, the Patient-Generated Subjective Global Assessment, the Body Mass Index and the relationship with usual weight were used. For the estimated weight was used the algorithm Chumlea et al.7 and estimated height, the equation proposed by Chumlea et al.8 and Kwok & Whitelaw24. The Pearson Correlation Coeffi cient and the Intraclass Correlation Coeffi cient was calculated and simple linear regression was conducted. To compare the malnutrition detected by different methods, the Cochran’s Q test were performed. There was a strong and signifi cant correlation between the estimated and actual weight (r=0,95; CI95%=0,92-0,97; p<0,001) and excellent concordance (ρ=0,95). For height measurements, a signifi cant correlation was observed between the actual and estimated measurement the method Chumlea et al.8 (r=0,78; CI95%=0,66-0,86; p<0,001) and Kwok & Whitelaw24 (r=0,85; CI95%: 0,75-0,90; p<0,001). Concordance was “Good” (ρ=0,72) and “Moderate” (ρ=0,67) between the actual height and estimated by Chumlea et al.8 and Kwok & Whitelaw,24 respectively. There was a strong correlation between the actual and estimated weight and height measures. The reproducibility of the equation proposed by Chumlea et al.8 to calculate height was better. The nutritional status, the patients classifi ed as malnutrition was greater when using the Patient-Generated Subjective Global Assessment and the relationship with usual weight.

Behavioral measures to reduce non-adherence in renal transplant recipients: a prospective randomized controlled trial

Solid-organ transplant recipients present a high rate of non-adherence to drug treatment. Few interventional studies have included approaches aimed at increasing adherence. The objective of this study was to evaluate the impact of an educational and behavioral strategy on treatment adherence of kidney transplant recipients. In a randomized prospective study, incident renal transplant patients (n = 111) were divided into two groups: control group (received usual transplant patient education) and treatment group (usual transplant patient education plus ten additional weekly 30-min education/counseling sessions about immunosuppressive drugs and behavioral changes). Treatment adherence was assessed using ITAS adherence questionnaire after 3 months. Renal function at 3, 6, and 12 months, and the incidence of transplant rejection were evaluated. The non-adherence rates were 46.4 and 14.5 % in the control and treatment groups (p = 0.001), respectively. The relative risk for non-adherence was 2.59 times (CI 1.38-4.88) higher in the control group. Multivariate analysis demonstrated a 5.84 times (CI 1.8-18.8, p = 0.003) higher risk of non-adherence in the control group. There were no differences in renal function and rejection rates between groups. A behavioral and educational strategy addressing the patient's perceptions and knowledge about the anti-rejection drugs significantly improved the short-term adherence to immunosuppressive therapy.

Complete continence after botulinum neurotoxin type A injections for refractory idiopathic detrusor overactivity incontinence: patient-reported outcome at 4 weeks

Objective improvement following intradetrusor injections of botulinum neurotoxin type A (BoNTA) is well documented. Although patient-related outcome measures are highly recommended for monitoring overactive bladder symptoms, no study before has dealt with the question of patient-reported complete continence after BoNTA treatment using validated questionnaires.

Avaliação da composição corporal e do estado nutricional em doentes com neoplasias gastrointestinais : bioimpedância elétrica e tomografia axial computorizada, que correlação?

Tese de mestrado, Nutrição Clínica, Faculdade de Medicina, Universidade de Lisboa, 2015

The effect of motor control exercise versus placebo in patients with chronic low back pain

Background: While one in ten Australians suffer from chronic low back pain this condition remains extremely difficult to treat. Many contemporary treatments are of unknown value. One potentially useful therapy is the use of motor control exercise. This therapy has a biologically plausible effect, is readily available in primary care and it is of modest cost. However, to date, the efficacy of motor control exercise has not been established. Methods: This paper describes the protocol for a clinical trial comparing the effects of motor control exercise versus placebo in the treatment of chronic non-specific low back pain. One hundred and fifty-four participants will be randomly allocated to receive an 8-week program of motor control exercise or placebo (detuned short wave and detuned ultrasound). Measures of outcomes will be obtained at follow-up appointments at 2, 6 and 12 months after randomisation. The primary outcomes are: pain, global perceived effect and patient-generated measure of disability at 2 months and recurrence at 12 months. Discussion: This trial will be the first placebo-controlled trial of motor control exercise. The results will inform best practice for treating chronic low back pain and prevent its occurrence.

The Responsiveness, Content Validity, and Convergent Validity of the Measure Yourself Concerns and Wellbeing (MYCaW) Patient-Reported Outcome Measure

Objective Measure Yourself Concerns and Wellbeing (MYCaW) is a patient-centred questionnaire that allows cancer patients to identify and quantify the severity of their ‘Concerns’ and Wellbeing, as opposed to using a pre-determined list. MYCaW administration is brief and aids in prioritising treatment approaches. Our goal was to assess the convergent validity and responsiveness of MYCaW scores over time, the generalisability of the existing qualitative coding framework in different complementary and integrative healthcare settings and content validity. Methods Baseline and 6-week follow-up data (n=82) from MYCaW and FACIT-SpEx questionnaires were collected for a service evaluation of the ‘Living Well With The Impact of Cancer’ course at Penny Brohn Cancer Care. MYCaW construct validity was determined using Spearman's Rank Correlation test, and responsiveness indices assessed score changes over time. The existing qualitative coding framework was reviewed using a new dataset (n=158) and coverage of concern categories compared to items of existing outcome measures. Results Good correlation between MYCaW and FACIT-SpEx score changes were achieved (r= -0.57, p≥0.01). MYCaW Profile and Concern scores were highly responsive to change: SRM=1.02 and 1.08; effect size=1.26 and 1.22. MYCaW change scores showed the anticipated gradient of change according to clinically relevant degrees of change. Categories including ‘Spirituality’, ‘weight change’ and ‘practical concerns’ were added to the coding framework to improve generalisability. Conclusions MYCaW scores were highly responsive to change, allowing personalized patient outcomes to be quantified; the qualitative coding framework is generalisable across different oncology settings and has broader coverage of patient-identified concerns compared with existing cancer-related patient-reported outcome measures.

Conventional versus hypofractionated high-dose intensity-modulated radiotherapy for prostate cancer: 5-year outcomes of the randomised, non-inferiority, phase 3 CHHiP trial

BACKGROUND: Prostate cancer might have high radiation-fraction sensitivity that would give a therapeutic advantage to hypofractionated treatment. We present a pre-planned analysis of the efficacy and side-effects of a randomised trial comparing conventional and hypofractionated radiotherapy after 5 years follow-up.

METHODS: CHHiP is a randomised, phase 3, non-inferiority trial that recruited men with localised prostate cancer (pT1b-T3aN0M0). Patients were randomly assigned (1:1:1) to conventional (74 Gy delivered in 37 fractions over 7·4 weeks) or one of two hypofractionated schedules (60 Gy in 20 fractions over 4 weeks or 57 Gy in 19 fractions over 3·8 weeks) all delivered with intensity-modulated techniques. Most patients were given radiotherapy with 3-6 months of neoadjuvant and concurrent androgen suppression. Randomisation was by computer-generated random permuted blocks, stratified by National Comprehensive Cancer Network (NCCN) risk group and radiotherapy treatment centre, and treatment allocation was not masked. The primary endpoint was time to biochemical or clinical failure; the critical hazard ratio (HR) for non-inferiority was 1·208. Analysis was by intention to treat. Long-term follow-up continues. The CHHiP trial is registered as an International Standard Randomised Controlled Trial, number ISRCTN97182923.

FINDINGS: Between Oct 18, 2002, and June 17, 2011, 3216 men were enrolled from 71 centres and randomly assigned (74 Gy group, 1065 patients; 60 Gy group, 1074 patients; 57 Gy group, 1077 patients). Median follow-up was 62·4 months (IQR 53·9-77·0). The proportion of patients who were biochemical or clinical failure free at 5 years was 88·3% (95% CI 86·0-90·2) in the 74 Gy group, 90·6% (88·5-92·3) in the 60 Gy group, and 85·9% (83·4-88·0) in the 57 Gy group. 60 Gy was non-inferior to 74 Gy (HR 0·84 [90% CI 0·68-1·03], pNI=0·0018) but non-inferiority could not be claimed for 57 Gy compared with 74 Gy (HR 1·20 [0·99-1·46], pNI=0·48). Long-term side-effects were similar in the hypofractionated groups compared with the conventional group. There were no significant differences in either the proportion or cumulative incidence of side-effects 5 years after treatment using three clinician-reported as well as patient-reported outcome measures. The estimated cumulative 5 year incidence of Radiation Therapy Oncology Group (RTOG) grade 2 or worse bowel and bladder adverse events was 13·7% (111 events) and 9·1% (66 events) in the 74 Gy group, 11·9% (105 events) and 11·7% (88 events) in the 60 Gy group, 11·3% (95 events) and 6·6% (57 events) in the 57 Gy group, respectively. No treatment-related deaths were reported.

INTERPRETATION: Hypofractionated radiotherapy using 60 Gy in 20 fractions is non-inferior to conventional fractionation using 74 Gy in 37 fractions and is recommended as a new standard of care for external-beam radiotherapy of localised prostate cancer.

FUNDING: Cancer Research UK, Department of Health, and the National Institute for Health Research Cancer Research Network.

Anti-VEGF treatment of patients with diabetic macular edema : Studies of visual acuity, macular edema and patient-reported outcomes

The aim of this thesis was to describe and evaluate visual acuity, macular edema and patientreported outcomes (PRO) following anti-VEGF treatment of diabetic macular edema (DME) patients in a real-world setting. Using a longitudinal study design, a cohort of DME patients was followed from baseline to 1 year after treatment start. Data were collected from two eye clinics at two county hospitals. Social background characteristics, medical data and PRO were measured before treatment initiation, at four month and after 1 year. A total of 57 patients completed the study. Mean age was 69 years and the sample was equally distributed regarding sex. At baseline, the patients described their general health as low. One year after treatment initiation, 30 patients had improved visual acuity and 27 patients had no improvement in visual acuity. The patients whose visual acuity improved reported an improvement in several subscales in patient-reported outcome measures (PROM), which was in contrast to the group that experienced a decline in visual acuity, where there was no improvement in PROM. Outcomes from the study can be useful for developing and providing relevant information and support to patients undergoing this treatment.

Intelligent outcome measures in liaison psychiatry:essential even if not desirable. Commentary on... a multidimensional Framework for Routine Outcome Measurement in Liaison Psychiatry (FROM-LP)

Service development is guided by outcome measures that inform service commissioners and providers. Those in liaison psychiatry should be encouraged to develop a positive approach that integrates the collection of outcome measures into everyday clinical practice. The Framework for Routine Outcome Measurement in Liaison Psychiatry (FROM-LP) is a very useful tool to measure service quality and clinical effectiveness, using a combination of clinician-rated and patient-rated outcome measures and patient-rated experience measures. However, it does not include measures of cost-effectiveness or training activities. The FROM-LP is a significant step towards developing nationally unified outcome measures.

Do health care providers use online patient ratings to improve the quality of care?

Background: Physician-rating websites have become a popular tool to create more transparency about the quality of health care providers. So far, it remains unknown whether online-based rating websites have the potential to contribute to a better standard of care. Objective: Our goal was to examine which health care providers use online rating websites and for what purposes, and whether health care providers use online patient ratings to improve patient care. Methods: We conducted an online-based cross-sectional study by surveying 2360 physicians and other health care providers (September 2015). In addition to descriptive statistics, we performed multilevel logistic regression models to ascertain the effects of providers' demographics as well as report card-related variables on the likelihood that providers implement measures to improve patient care. Results: Overall, more than half of the responding providers surveyed (54.66%, 1290/2360) used online ratings to derive measures to improve patient care (implemented measures: mean 3.06, SD 2.29). Ophthalmologists (68%, 40/59) and gynecologists (65.4%, 123/188) were most likely to implement any measures. The most widely implemented quality measures were related to communication with patients (28.77%, 679/2360), the appointment scheduling process (23.60%, 557/2360), and office workflow (21.23%, 501/2360). Scaled-survey results had a greater impact on deriving measures than narrative comments. Multilevel logistic regression models revealed medical specialty, the frequency of report card use, and the appraisal of the trustworthiness of scaled-survey ratings to be significantly associated predictors for implementing measures to improve patient care because of online ratings. Conclusions: Our results suggest that online ratings displayed on physician-rating websites have an impact on patient care. Despite the limitations of our study and unintended consequences of physician-rating websites, they still may have the potential to improve patient care.

Clinical utility of the personal questionnaire

The demand to implement routine outcome assessment in mental health care services calls for measures with clinical utility, i. e, feasible to therapists, acceptable to clients and generalizable to settings. This research aims to explore the clinical utility of a patient-generated measure, the Personal Questionnaire (PQ). An on-line survey was designed (study I) and administered to an international sample of 25 therapists with experience using the PQ (study II). Results suggest that the PQ is perceived as a clinically significant and fairly practical measure, useful not only in assessing outcome but also in various clinical tasks. Furthermore, it is relatively well accepted by clients and it is extremely generalizable to different clients, clinical approaches and settings. Specific suggestions to increase the PQ’s clinical utility are provided. Exploring therapists’ perspectives and practices will improve the appropriateness of measures to real-world clinical settings; A utilidade clínica do Personal Questionnaire RESUMO: O movimento para implementar a avaliação rotineira de resultados nos serviços de saúde mental pede medidas com utilidade clínica, i. e, práticas para terapeutas, aceitáveis para clientes e generalizáveis para contextos clínicos. Este estudo tem como objetivo explorar a utilidade clínica de uma medida gerada pelo cliente, o Personal Questionnaire (PQ). Um questionário on-line foi desenvolvido (estudo I) e administrado a uma amostra internacional de 25 terapeutas com experiência de uso do PQ (estudo II). Os resultados sugerem que o PQ é considerado um instrumento valioso para a prática clínica, relativamente prático, útil como indicador de resultado e também como ferramenta clínica. Adicionalmente, é bem aceite pelos clientes e bastante generalizável para diferentes clientes, abordagens terapêuticas e contextos clínicos. Sugestões específicas para melhorar a utilidade clínica do PQ são fornecidas. Explorar as perspetivas e práticas dos terapeutas face a medidas de resultado possibilita uma melhor adequação à prática clínica.

Nutritional status and information needs of medical oncology patients receiving treatment at an Australian public hospital

This study aimed to identify: i) the prevalence of malnutrition according to the scored Patient Generated-Subjective Global Assessment (PG-SGA); ii) utilization of available nutrition resources; iii) patient nutrition information needs; and iv) external sources of nutrition information. An observational, cross-sectional study was undertaken at an Australian public hospital on 191 patients receiving oncology services. According to PG-SGA, 49% of patients were malnourished and 46% required improved symptom management and/or nutrition intervention. Commonly reported nutrition-impact symptoms included: peculiar tastes (31%), no appetite (24%) and nausea (24%). External sources of nutrition information were accessed by 37%, with popular choices being media/internet (n=19) and family/friends (n=13). In a sub-sample (n=65), 32 patients were aware of the available nutrition resources, 23 thought the information sufficient and 19 patients had actually read them. Additional information on supplements and modifying side effects was requested by 26 patients. Malnutrition is common in oncology patients receiving treatment at an Australian public hospital and almost half require improved symptom management and/or nutrition intervention. Patients who read the available nutrition information found it useful, however awareness of these nutrition resources and the provision of information on supplementation and managing symptoms requires attention.