Patient-reported outcomes and measures are under-utilised in advanced therapy medicinal products trials for orphan conditions.

Objectives: Advanced therapy medicinal products (ATMPs) are medicines based on genes, tissues, or cells and can include gene therapy, somatic-cell therapy, and tissue-engineered medicines. Patient-reported outcomes (PROs) are reports on health and well-being that come directly from the individual without external interpretation. Patient-reported outcome measures (PROMs) are questionnaires aimed at assessing the individual and subjective experience with health and other psychosocial aspects.

Assessment highlights need for improvement in standards of development of core outcome sets for rare genetic diseases.

Objectives: A rare disease is classified as such if it affects less than one person in 2,000. The Core Outcome Set STandards for Development (COS-STAD) is a set of standards that represent the minimum recommendations to be considered in the process of core outcome set (COS) development. The aim of this study was to provide a baseline assessment of COS development standards for rare genetic diseases.

The impact of psychiatric disorders on caregivers: An integrative predictive model of burden, stigma, and well-being.

Purpose: The study investigates the predictors of caregivers' experienced burden, stigma, and well-being, when looking after family members diagnosed with a psychiatric disorder.

Design And Methods: This cross-sectional study included 168 caregivers; perceived burden, stigma, well-being, knowledge, illness perception, and medical variables were assessed.

Findings: A number of correlates of burden, stigma, and well-being have been identified and are being discussed.

Mapping psychosocial interventions in familial colorectal cancer: a rapid systematic review.

Background: Approximately 5% of colorectal cancer (CRC) cases are part of a well-defined inherited genetic syndrome and up to approximately 30% of these cases have a clinically defined familial basis. Psychosocial interventions in familial colorectal cancer address aspects mainly focused on affective, cognitive and behavioural outcomes. The present review aims to systematically map out the available psychosocial interventions for individuals with a family history of CRC and describe the current state of the research.

Developing genetic counselling services in an underdeveloped healthcare setting.

Genetic counselling services are well established in North America, Western Europe and Australia. In other regions, genetic counselling services are still emerging. Where this is the case, an in-depth understanding of the main stakeholders' needs, challenges and opportunities will inform the changes and innovations required to bring genetic counselling closer to the community.

Screeners vs. Non-screeners for Colorectal Cancer among People over 50 Years of Age: Factual and Psychological Discriminants.

Background And Aims: Colorectal cancer (CRC) is the third most frequent form of cancer worldwide, and approximately one third of cases have a positive family history of CRC or associated cancers. Colonoscopy is one of the most effective methods of screening for CRC. Uptake of colonoscopy is suboptimal, and many countries lack a national screening programme.

Psychological factors and psychosocial interventions for cancer related pain.

The present paper is aimed at briefly presenting psychological factors involved in cancer related pain and what psychosocial interventions are efficient in reducing it. Cancer related pain is a complex experience and the most integrative and recommended approach is the biopsychosocial model. It has been proved that chronic pain is more strongly related to psychological factors than to treatment or illness related factors.