ABSTRACT
Despite the low prevalence of each rare disease, the total burden is high. Patients with rare diseases encounter numerous barriers, including delayed diagnosis and limited access to high-quality treatments. In order to tackle these challenges, the European Commission launched the European Reference Networks (ERNs), cross-border networks of healthcare providers and patients representatives. In parallel, the aims and structure of these ERNs were translated at the federal and regional levels, resulting in the creation of the Flemish Network of Rare Diseases. In line with the mission of the ERNs and to ensure equal access to care, we describe as first patient pathways for systemic sclerosis (SSc), as a pilot model for other rare connective and musculoskeletal diseases. Consensus was reached on following key messages: 1. Patients with SSc should have multidisciplinary clinical and investigational evaluations in a tertiary reference expert centre at baseline, and subsequently every three to 5 years. Intermediately, a yearly clinical evaluation should be provided in the reference centre, whilst SSc technical evaluations are permissionably executed in a centre that follows SSc-specific clinical practice guidelines. In between, monitoring can take place in secondary care units, under the condition that qualitative examinations and care including interactive multidisciplinary consultations can be provided. 2. Patients with early diffuse cutaneous SSc, (progressive) interstitial lung disease and/or pulmonary arterial hypertension should undergo regular evaluations in specialised tertiary care reference institutions. 3. Monitoring of patients with progressive interstitial lung disease and/or pulmonary (arterial) hypertension will be done in agreement with experts of ERN LUNG.
Subject(s)
Connective Tissue Diseases , Lung Diseases, Interstitial , Scleroderma, Diffuse , Scleroderma, Systemic , Humans , Rare Diseases/complications , Rare Diseases/epidemiology , Rare Diseases/therapy , Scleroderma, Systemic/diagnosis , Scleroderma, Systemic/therapy , Connective Tissue Diseases/diagnosis , Connective Tissue Diseases/complications , Lung Diseases, Interstitial/diagnosis , Lung Diseases, Interstitial/therapy , Lung Diseases, Interstitial/complicationsABSTRACT
PIP: This comparative study examined the relationship between self-efficacy theory and contraceptive practices in male and female adolescents enrolled in Midwestern University. A survey method was employed to obtain data from 101 female and 106 male subjects aged 18-20, sexually active, single, and who had one sexual partner for at least 3 months. Findings suggest that both genders need to develop the necessary communication skills in sexual matters and contraceptive issues. Females scored low on several self-efficacy statements that involve the ability to communicate about sexual matters and securing the use of contraception. They also obtained a low score in statements that require assertiveness in preventing sexual intercourse in highly involved situations. Meanwhile, male subjects scored low in items involving communication skills. Finally, contraceptive self-efficacy was found to be significantly different for males and females in the following areas: females need to learn how to assume responsibility and to become more effective in securing contraceptives; and males need to learn to be assertive about avoiding sexual intercourse when not using contraception and to develop the ability to talk about using contraceptives.^ieng
