Effectiveness of a decision aid for patients with knee osteoarthritis: a randomized controlled trial.

OBJECTIVE: To assess the effectiveness of a Patient Decision Aid (PtDA) for knee osteoarthritis. METHOD: Randomized controlled trial, in which 193 patients were allocated to the PtDA or usual care. Outcome measures were the Decisional Conflict Scale (DCS), knowledge of osteoarthritis and arthroplasty, satisfaction with the decision-making process (SDMP) and treatment preference, assessed immediately after the intervention. At 6 months, the same measures were applied in non-operated patients, whereas those who underwent arthroplasty completed the SDMP and the Decisional Regret Scale (DRS). RESULTS: The PtDA produced a significant immediate improvement of decisional conflict (MD = -11.65, 95%CI: -14.93, -8.37), objective knowledge (MD = 10.37, 99%IC: 3.15, 17.70) and satisfaction (MD = 6.77, 99%CI: 1.19, 12.34), and a different distribution of preferences (χ2 = 8.74, p = 0.033). Patients with less than secondary education obtained a stronger effect on decisional conflict (p = 0.015 for the interaction) but weaker for knowledge (p = 0.051). At 6 months, there were no significant differences in any variable, including the rate of total knee replacement. Operated patients showed a low level of regret, which was not affected by the intervention. CONCLUSION: The PtDA is effective immediately after its application, but it shows no effects in the medium-term. Future research should investigate which subgroups of patients could benefit more from this intervention, as well as the longitudinal evolution of decision-related psychological variables.

Calidad de vida relacionada con la salud en pacientes con ataxias espinocerebelosas / Health-related quality of life in patients with spinocerebellar ataxia

Introducción. El deterioro progresivo de los pacientes con ataxias espinocerebelosas (AEC) genera un gran impacto sobre su calidad de vida relacionada con la salud (CVRS). En este estudio se evalúa la CVRS en una muestra de pacientes diagnosticados de AEC y se pretende estimar la capacidad predictiva de un conjunto de variables sociodemográficas en las distintas dimensiones que conforman el cuestionario. Métodos. Se evaluó a un total de 80 pacientes diagnosticados de AEC, a través de un cuestionario sociodemográfico y del cuestionario genérico de salud SF-36. Se estudiaron variables sociodemográficas como sexo, edad, existencia de cuidador, situación laboral y tiempo desde el diagnóstico de la enfermedad. Resultados. Las dimensiones que componen el SF-36 muestran correlaciones positivas y significativas entre ellas. Las puntuaciones medias obtenidas en cada una de las dimensiones difieren según el sexo, siendo significativa la diferencia solo en la dimensión salud general, con media más alta en los hombres. En relación con la edad, se encuentran diferencias significativas en las dimensiones vitalidad y función social, con puntuaciones mayores en el rango de menor edad (menores de 34 años). La variable que explica la mayor parte de la varianza del cuestionario es la existencia de cuidador. Conclusiones. El Cuestionario de Salud SF-36 es un instrumento válido y fiable para medir la CVRS en pacientes con diagnóstico de AEC. Asimismo, la variable existencia de cuidador parece determinar la calidad de vida autopercibida por estos pacientes (AU)

Introduction. The progressive deterioration of patients with spinocerebellar ataxia (SCA) has a major impact on their health-related quality of life (HRQOL). This study evaluates HRQOL in a sample of patients diagnosed with SCA and aims to estimate the predictive ability of a set of sociodemographic variables for the different dimensions of the General Health Questionnaire. Methods. A total of 80 patients diagnosed with SCA were assessed using a sociodemographic questionnaire and the SF-36 General Health Questionnaire. The sociodemographic variables studied were sex, age, presence of a carer, employment status, and time elapsed from diagnosis of the disease. Results. The 8 subscales of the SF-36 show positive and significant correlations to one another. Mean scores obtained on each SF-36 subscale differ between women and men, although this difference is significant only on the general health subscale, with men scoring higher than women. We found significant age differences on the vitality and social function subscales, with higher scores among younger patients (< 34 years). The variable ‘presence of a carer’ accounts for most of the total variance of the questionnaire. Conclusions. The SF-36 is a valid and useful instrument for evaluating HRQOL in patients diagnosed with SCA. Presence of a carer seems to be a determinant of self-perceived quality of life in these patients (AU)

A qualitative study on a decision aid for breast cancer screening: Views from women and health professionals.

This qualitative study evaluates a decision aid that includes the benefits and harms of breast cancer screening and analyses women's perception of the information received and healthcare professionals' perceptions of the convenience of providing it. Seven focus groups of women aged 40-69 years (n = 39) and two groups of healthcare professionals (n = 23) were conducted in Catalonia and the Canary Islands. The focus groups consisted of guided discussions regarding decision-making about breast cancer screening, and acceptability and feasibility of the decision aid. A content analysis was performed. Women positively value receiving information regarding the benefits and harms of breast cancer screening. Several women had difficulties understanding some concepts, especially those regarding overdiagnosis. Women preferred to share the decisions on screening with healthcare professionals. The professionals noted the lack of inclusion of some harms and benefits in the decision aid, and proposed improving the clarity of the statistical information. The information on overdiagnosis generates confusion among women and controversy among professionals. Faced with the new information presented by the decision aid, the majority of women prefer shared decision-making; however, its feasibility might be limited by a lack of knowledge and attitudes of rejection from healthcare professionals.

Health-related quality of life in patients with spinocerebellar ataxia. / Calidad de vida relacionada con la salud en pacientes con ataxias espinocerebelosas.

INTRODUCTION: The progressive deterioration of patients with spinocerebellar ataxia (SCA) has a major impact on their health-related quality of life (HRQOL). This study evaluates HRQOL in a sample of patients diagnosed with SCA and aims to estimate the predictive ability of a set of sociodemographic variables for the different dimensions of the General Health Questionnaire. METHODS: A total of 80 patients diagnosed with SCA were assessed using a sociodemographic questionnaire and the SF-36 General Health Questionnaire. The sociodemographic variables studied were sex, age, presence of a carer, employment status, and time elapsed from diagnosis of the disease. RESULTS: The 8 subscales of the SF-36 show positive and significant correlations to one another. Mean scores obtained on each SF-36 subscale differ between women and men, although this difference is significant only on the general health subscale, with men scoring higher than women. We found significant age differences on the vitality and social function subscales, with higher scores among younger patients (< 34 years). The variable 'presence of a carer' accounts for most of the total variance of the questionnaire. CONCLUSIONS: The SF-36 is a valid and useful instrument for evaluating HRQOL in patients diagnosed with SCA. Presence of a carer seems to be a determinant of self-perceived quality of life in these patients.

Breast cancer patients' narrative experiences about communication during the oncology care process: a qualitative study.

To analyse the perception about the information and communication received to evaluate oncologic care of breast cancer patients in Spain. Qualitative study based on conducting in-depth interviews. An inductive thematic analysis of the illness narratives was performed. Intentional theoretical sampling of 41 people diagnosed with breast cancer. The information provided during care process is assessed as appropriate, as it includes personalised skills focused on communication and considers organisational and contextual issues. In some cases, the information was considered partial, heterogeneous and at times contradictory, which revealed a lack of continuity. To provide and adequately cover information needs from the patient perspective, it is necessary to ensure access, both in its physical (material) and intellectual (comprehension) dimension, keeping in mind elements of social capital (social networks) and cultural capital (values, beliefs, non-verbal language) that facilitate or hinder access. The current state of transition to a horizontal model in the doctor-patient relationship, could account for the difficulties, deficits and contradictions in communication and information that breast cancer patients perceive in many contexts.

Cost-effectiveness of electroconvulsive therapy compared to repetitive transcranial magnetic stimulation for treatment-resistant severe depression: a decision model.

BACKGROUND: Electroconvulsive therapy (ECT) is widely applied to treat severe depression resistant to standard treatment. Results from previous studies comparing the cost-effectiveness of this technique with treatment alternatives such as repetitive transcranial magnetic stimulation (rTMS) are conflicting. METHOD: We conducted a cost-effectiveness analysis comparing ECT alone, rTMS alone and rTMS followed by ECT when rTMS fails under the perspective of the Spanish National Health Service. The analysis is based on a Markov model which simulates the costs and health outcomes of individuals treated under these alternatives over a 12-month period. Data to populate this model were extracted and synthesized from a series of randomized controlled trials and other studies that have compared these techniques on the patient group of interest. We measure effectiveness using quality-adjusted life years (QALYs) and characterize the uncertainty using probabilistic sensitivity analyses. RESULTS: ECT alone was found to be less costly and more effective than rTMS alone, while the strategy of providing rTMS followed by ECT when rTMS fails is the most expensive and effective option. The incremental cost per QALY gained of this latter strategy was found to be above the reference willingness-to-pay threshold used in these types of studies in Spain and other countries. The probability that ECT alone is the most cost-effective alternative was estimated to be around 70%. CONCLUSIONS: ECT is likely to be the most cost-effective option in the treatment of resistant severe depression for a willingness to pay of €30,000 per QALY.

Deep brain stimulation in Parkinson's disease: meta-analysis of randomized controlled trials.

Until recent years there has been no evidence from randomized controlled trials (RCTs) on the efficacy of deep brain stimulation (DBS) for Parkinson's disease (PD). This review and meta-analysis of RCTs describes the efficacy of DBS in improving motor signs, functionality and quality of life of PD patients. Several electronic databases were consulted up to April 2013. RCTs that compared DBS plus medication versus medication (alone or plus sham DBS) in PD patients were included. Outcome measures were motor function, waking time on good functioning without troublesome dyskinesias, levodopa-equivalent dose reduction, medication-induced complications, activities of daily living, health-related quality of life, and neurocognitive and psychiatric effects. Six RCTs (n = 1,184) that compared DBS plus medication versus medication alone were included. The results show that DBS significantly improves patients' symptoms, functionality and quality of life. Effects sizes are intense for the reduction of motor signs and improvement of functionality in the off-medication phase, in addition to the reduction of the required medication dose and its associated complications. Moderate effects were observed in the case of motor signs and time in good functionality in the on-medication phase, in addition to the quality of life. Although the number of RCTs obtained is small, the total sample size is relatively large, confirming the efficacy of DBS in the control of motor signs and improvement of patients' functionality and quality of life. More controlled research is required on the neurocognitive and psychiatric effects of DBS.

Calidad de vida relacionada con la salud en pacientes con esclerosis lateral amiotrófica / Quality of life related to health in patients with amyotrophic lateral sclerosis

Introducción: El deterioro progresivo de los pacientes con esclerosis lateral amiotrófica (ELA) genera un gran impacto sobre su calidad de vida relacionada con la salud (CVRS). En este estudio se evalúa la CVRS en una muestra de pacientes diagnosticados de ELA y se pretende estimar la capacidad predictiva de un conjunto de variables sociodemográficas en las distintas dimensiones que conforman el cuestionario. Métodos: Se evaluó a un total de 63 pacientes diagnosticados de ELA, a través de un cuestionario sociodemográfico y del cuestionario genérico de salud SF-36. Se estudiaron variables sociodemográficas como sexo, edad, existencia de cuidador, situación laboral y tiempo desde el diagnóstico de la enfermedad. Resultados: El cuestionario SF-36 muestra una correlación positiva entre las diferentes dimensiones que la componen lo que demuestra su confiabilidad. Las puntuaciones medias obtenidas en cada una de las dimensiones del SF-36 son mayores en hombres que en mujeres, aunque esta diferencia es significativa solo en la dimensión Rol físico, siendo el grupo de pacientes de menor edad (menos de 56 años) quienes presentan puntuaciones medias más altas en la mayoría de las dimensiones del SF-36. La mayor parte de la variancia de la prueba queda explicada por la variable existencia de cuidador. Conclusiones: Se confirma la capacidad del SF-36 como medida válida y fiable de la CVRS para pacientes con un diagnóstico de ELA, que discrimina entre pacientes con diferentes estados de salud según su nivel de dependencia

Introduction: Progressive deterioration in patients with amyotrophic lateral sclerosis (ALS) has a major impact on their health-related quality of life (HRQOL). The objectives of this study are to evaluate HRQOL in a sample of patients diagnosed with ALS and estimate the predictive capability of a set of sociodemographic variables for the different scales covered by a general health survey. Methods: A total of 63 patients diagnosed with ALS were assessed using a sociodemographic questionnaire and the SF-36 general health survey. The sociodemographic variables studied were sex, age, presence of a caregiver, employment status, and time from diagnosis of disease. Results: The SF-36 survey shows positive correlations between the different scales composing it, which proves its reliability. The mean scores obtained for each of the SF-36 scales were higher in men than in women, although the only statistically significant difference was for the Physical Role scale. The lowest age range (less than 56 years) presented the highest mean scores for most of these dimensions. Most of the variance in the test is explained by the variable 'presence of caregiver'. Conclusions: The SF-36 health survey has been confirmed as a valid and useful tool for evaluating HRQOL in ALS patients, and it discriminates between patients in different states of health according to their level of dependency

[Health-related quality of life in patients with amyotrophic lateral sclerosis]. / Calidad de vida relacionada con la salud en pacientes con esclerosis lateral amiotrófica.

INTRODUCTION: Progressive deterioration in patients with amyotrophic lateral sclerosis (ALS) has a major impact on their health-related quality of life (HRQOL). The objectives of this study are to evaluate HRQOL in a sample of patients diagnosed with ALS and estimate the predictive capability of a set of sociodemographic variables for the different scales covered by a general health survey. METHODS: A total of 63 patients diagnosed with ALS were assessed using a sociodemographic questionnaire and the SF-36 general health survey. The sociodemographic variables studied were sex, age, presence of a caregiver, employment status, and time from diagnosis of disease. RESULTS: The SF-36 survey shows positive correlations between the different scales composing it, which proves its reliability. The mean scores obtained for each of the SF-36 scales were higher in men than in women, although the only statistically significant difference was for the Physical Role scale. The lowest age range (less than 56 years) presented the highest mean scores for most of these dimensions. Most of the variance in the test is explained by the variable 'presence of caregiver'. CONCLUSIONS: The SF-36 health survey has been confirmed as a valid and useful tool for evaluating HRQOL in ALS patients, and it discriminates between patients in different states of health according to their level of dependency.

Patient involvement in health research: a contribution to a systematic review on the effectiveness of treatments for degenerative ataxias.

This study aims to incorporate patients' perspective in the design of a systematic review of scientific literature on the effectiveness of degenerative ataxias (DA) treatments. 53 patients with DA from different regions of Spain were consulted using the Delphi method, with three rounds via e-mail. In the first round, obtained information was on treatments used and relevant self-perceived health problems related to DA. The following two rounds were used to prioritize and achieve a consensus on the answers. The participation rate was 100% for all rounds. The most relevant self-perceived health problems were limitations in activities of daily living (ADL), visual and auditory problems and diminished self-esteem. The bibliographic search for the systematic review was enriched by these patient contributions. No study offered information on treatment effectiveness for the following problems prioritized by patients: ADL, social relationships, disease acceptance and quality of life. Thus some of the self-perceived DA-related health problems identified by the patients have never been investigated and should be considered to improve future research projects which should be adapted to meet patients' needs. Effective participation of patients can extend the value of systematic reviews to ensure they respond to both clinicians' information needs and patients' expectations.