Training Genetic Counsellors to Deliver an Innovative Therapeutic Intervention: their Views and Experience of Facilitating Multi-Family Discussion Groups.

Innovations in clinical genetics have increased diagnosis, treatment and prognosis of inherited genetic conditions (IGCs). This has led to an increased number of families seeking genetic testing and / or genetic counselling and increased the clinical load for genetic counsellors (GCs). Keeping pace with biomedical discoveries, interventions are required to support families to understand, communicate and cope with their Inherited Genetic Condition. The Socio-Psychological Research in Genomics (SPRinG) collaborative have developed a new intervention, based on multi-family discussion groups (MFDGs), to support families affected by IGCs and train GCs in its delivery. A potential challenge to implementing the intervention was whether GCs were willing and able to undergo the training to deliver the MFDG. In analysing three multi-perspective interviews with GCs, this paper evaluates the training received. Findings suggests that MFDGs are a potential valuable resource in supporting families to communicate genetic risk information and can enhance family function and emotional well-being. Furthermore, we demonstrate that it is feasible to train GCs in the delivery of the intervention and that it has the potential to be integrated into clinical practice. Its longer term implementation into routine clinical practice however relies on changes in both organisation of clinical genetics services and genetic counsellors' professional development.

Patients' perception on the quality of care for multiple endocrine neoplasia disorders in Europe: an online survey from a patient support group.

PURPOSE: European Patient Advocacy Groups (ePAGs) within the Endo-ERN identified a lack of knowledge about quality of care (QoC) of patients with multiple endocrine neoplasia (MEN). The aim of this study was to identify inequalities in care and to encourage improvements. METHODS: The European MEN Alliance (EMENA) developed and conducted a survey, using the European Commissions' EUSurvey platform. Patient groups and healthcare professionals (HCPs) distributed the survey. RESULTS: A total of 288 participants completed the survey (MEN1 n = 203, MEN2 n = 67, MEN3 n = 18) from 18 European countries. The majority of respondents were recruited via patient groups (58%), aged between 41 and 60 years (53%) and were female (67%). All participants reported having been diagnosed on average 5.58 years (95%-CI: 4.45-6.60) after first symptoms occurred. This timeframe was lower in the group with MEN2 (2.97 years, 95%-CI: 1.37-4.57). Most of the participants (67%) received their diagnosis by a positive gene test after presenting with one or more MEN-related tumours. Overall QoC was rated as either "good" (43%) or "excellent" (36%). CONCLUSION: The results of this unique Europe-wide, patient-driven survey on QoC of patients with MEN show that ratings for overall QoC were lower than ratings for different aspects of care. This may be because of the complex nature of care for genetic syndromes. Furthermore, patients who connect with patient groups may be deemed "expert patients" whose answers are not representative of the overall MEN patient community. We hope that Endo-ERN can support further education and training for HCPs based on these results.

Developing an intervention to facilitate family communication about inherited genetic conditions, and training genetic counsellors in its delivery.

Many families experience difficulty in talking about an inherited genetic condition that affects one or more of them. There have now been a number of studies identifying the issues in detail, however few have developed interventions to assist families. The SPRinG collaborative have used the UK Medical Research Council's guidance on Developing and Evaluating Complex Interventions, to work with families and genetic counsellors (GCs) to co-design a psycho-educational intervention to facilitate family communication and promote better coping and adaptation to living with an inherited genetic condition for parents and their children (<18 years). The intervention is modelled on multi-family discussion groups (MFDGs) used in psychiatric settings. The MFDG was developed and tested over three phases. First focus groups with parents, young people, children and health professionals discussed whether MFDG was acceptable and proposed a suitable design. Using evidence and focus group data, the intervention and a training manual were developed and three GCs were trained in its delivery. Finally, a prototype MFDG was led by a family therapist and co-facilitated by the three GCs. Data analysis showed that families attending the focus groups and intervention thought MFDG highly beneficial, and the pilot sessions had a significant impact on their family' functioning. We also demonstrated that it is possible to train GCs to deliver the MFDG intervention. Further studies are now required to test the feasibility of undertaking a definitive randomised controlled trial to evaluate its effectiveness in improving family outcomes before implementing into genetic counselling practice.