Attitudes of Individuals with Gaucher Disease toward Substrate Reduction Therapies.

Type 1 Gaucher disease (GD) is the most common lysosomal storage disorder. Previously, treatment for GD was limited to intravenous enzyme replacement therapies (ERTs). More recently, oral substrate reduction therapies (SRTs) were approved for treatment of GD. Although both therapies alleviate disease symptoms, attitudes toward SRTs and patient perceptions of health while using SRT have not been well established. Electronic surveys were administered to adults with GD and asked about treatment history, attitudes toward SRTs, and perception of health while using SRTs as compared to ERTs, if applicable to the participant. ERT users that were offered treatment with SRTs cited potential side effects, wanting more research on SRTs, and satisfaction with their current treatment regimen as reasons for declining SRTs. SRT users expressed convenience and less invasiveness as reasons for choosing SRTs. Additionally, those using SRTs most often perceived their health to be similar to when they previously used ERT. Participant responses illustrate that attitudes toward SRTs can be variable and that one particular treatment may not be ideal for all patients with GD depending on individual perceptions of factors such as convenience, invasiveness, or side effects. Thus, individuals with GD should be counseled adequately by healthcare providers about both ERTs and SRTs for treatment of GD now that SRTs are clinically available.

Cancer patients' preferences for therapy decisions can be grouped into categories and separated by demographic factors.

PURPOSE: Shared decision-making is based on comparable understanding of decision criteria on both sides that requires knowledge about preferences, reception/prioritization of benefits and covariates influencing these criteria. We addressed identification of cancer patients' preferences for treatment decisions and covariates for preference patterns in certain patient cohorts. DESIGN: Using preference surveys ordinal ranking of decisional preferences in life (PL) and during therapy (PT) were obtained and aggregated by factorial analysis. Demographic and clinical data enabled clustering of patient groups including non-malignant control group with distinct preference patterns. Covariates for these patterns were determined by multivariate ANOVA. RESULTS: 1777 cancer and 367 non-oncological patients (≥18 years) were evaluable (response 56.0%). Patient-reported PT was grouped into distinctive categories: immediate treatment effectivity, long-term effects and survival, empathy, easy treatment and employability/healing. Gender, parenthood, family status, age and educational level mainly determine importance of PL (52.1% variance) and PT (55.1% variance) enabling discrimination of specific preference patterns in patients: older males, non-single, younger males, non-single female with children and young, single patients without children that mainly significantly differed from non-cancer patients (p < 0.001). CONCLUSION: Relevance of decisional PL/PT appears to be cancer-specific and distinct between cancer patient groups. If patients recognize direct social responsibility, immediate treatment effects gain importance accompanied by reduced impact of employability, rehabilitation and financial security. For young and independent patients empathy has similar impact as treatment effects. Consequently, clinical research should consider age-specific endpoints and distinct decisional preferences to match patients' perspective by specific evidence.

A brief, multidimensional measure of clients' therapy preferences: The Cooper-Norcross Inventory of Preferences (C-NIP).

Addressing and accommodating client preferences in psychotherapy have been consistently associated with improved treatment outcomes; however, few clinically useful and psychometrically acceptable measures are available for this purpose. The aim of this study was to develop a brief, multidimensional clinical tool to help clients articulate the therapist style they desire in psychotherapy or counseling. An online survey composed of 40 therapy preference items was completed by 860 respondents, primarily female (n = 699), British (n = 650), White (n = 761), and mental health professionals themselves (n = 615). Principal components analysis resulted in four scales that accounted for 39% of the total variance: Therapist Directiveness vs. Client Directiveness, Emotional Intensity vs. Emotional Reserve, Past Orientation vs. Present Orientation, and Warm Support vs. Focused Challenge. These scales map well onto dimensions of therapist activity and cover most of the major preference dimensions identified in the research literature. Internal consistency coefficients ranged between .60 and .85 (M = .71). Tentative cutoff points for strong preferences on each dimension were established. The 18-item Cooper-Norcross Inventory of Preferences (C-NIP) is a multidimensional measure with clinical utility, but additional validity data are needed.

Abordar y acomodar las preferencias del cliente en psicoterapia se asoció consistentemente con mejoras en los resultados del tratamiento; sin embargo, pocas medidas clínicamente útiles y psicométricamente aceptables están disponibles para este propósito. El objetivo fue desarrollar una herramienta clínica multidimensional breve para ayudar a que los clientes articulen el estilo terapéutico que desean en la psicoterapia o consejería. Una encuesta online compuesta por 40 ítems de preferencias de terapia fue completada por 860 sujetos, principalmente mujeres (n = 699), británicos (n = 650), blancos (n = 761) y profesionales de la salud mental (n = 615). Un análisis de componentes principales aisló cuatro escalas que representan el 39% de la varianza total: Directividad del terapeuta vs. Directividad del cliente, Intensidad emocional vs. Reserva emocional, Orientación pasada vs. Orientación presente y Apoyo caluroso vs. Cambio focalizado. Estas escalas recogen las dimensiones de la actividad del terapeuta y cubren la mayoría de las principales dimensiones de preferencias identificadas en la literatura. Los coeficientes de consistencia interna oscilaron entre 0,60 y 0,85 (M = 0,71). Se establecieron puntos de corte provisionales para fuertes preferencias en cada dimensión. El Inventario de Preferencias Cooper-Norcross-18 ítems (C-NIP) es una medida multidimensional con utilidad clínica, pero se necesitan datos adicionales de validez.