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Stakeholder attitudes towards establishing a national genomics registry of inherited cancer predisposition: a qualitative study.

ABSTRACT: This study aimed to describe the acceptability and perceived barriers and enablers to establish a national registry targeting carriers of pathogenic variants in cancer susceptibility genes from stakeholders' perspectives. Such a registry may effectively target carriers to translate existing research findings into optimised clinical care and provide a population-level resource for further clinical research and new gene and therapy discovery. In-depth interviews were conducted with individuals from four stakeholder groups: carriers of pathogenic variants, healthcare professionals, data custodians from the field of familial cancer, and heads of molecular pathology laboratories. Interview data were subjected to a qualitative analysis guided by a thematic analysis framework using NVivo software. A total of 28 individuals were interviewed: 11 carriers, 8 healthcare professionals, 5 laboratory heads, and 4 data custodians. All carriers and healthcare professionals were enthusiastic about the potential research applications of the registry. Carriers described that altruistic motivations provided the foundation of their support of the planned registry. Some carriers felt comfortable with a broad consent (consenting once, prospectively), while others preferred a narrow consent approach (consenting each time data is accessed). Some carriers and data custodians and registry developers also expressed a reluctance to link family member data without appropriate consent. Participants' enthusiasm and support for a national registry herald a productive and responsive research partnership once the registry has been established. Participants' views can be used to inform the approaches to be taken to develop and manage such a registry as an implicit codesign approach.

SUBMITTER: Meiser B

PROVIDER: S-EPMC8799807 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:Background:The integration of digital treatments into national mental health services is on the agenda in the European Union. The E-COMPARED consortium conducted a survey aimed at exploring stakeholders' knowledge, acceptance and expectations of digital treatments for depression, and at identifying factors that might influence their opinions when considering the implementation of these approaches. Method:An online survey was conducted in eight European countries: France, Germany, Netherlands, Poland, Spain, Sweden, Switzerland and The United Kingdom. Organisations representing government bodies, care providers, service-users, funding/insurance bodies, technical developers and researchers were invited to participate in the survey. The participating countries and organisations reflect the diversity in health care infrastructures and e-health implementation across Europe. Results:A total of 764 organisations were invited to the survey during the period March-June 2014, with 175 of these organisations participating in our survey. The participating stakeholders reported moderate knowledge of digital treatments and considered cost-effectiveness to be the primary incentive for integration into care services. Low feasibility of delivery within existing care services was considered to be a primary barrier. Digital treatments were regarded more suitable for milder forms of depression. Stakeholders showed greater acceptability towards blended treatment (the integration of face-to-face and internet sessions within the same treatment protocol) compared to standalone internet treatments. Organisations in countries with developed e-health solutions reported greater knowledge and acceptability of digital treatments. Conclusion:Mental health stakeholders in Europe are aware of the potential benefits of digital interventions. However, there are variations between countries and stakeholders in terms of level of knowledge about such interventions and their feasibility within routine care services. The high acceptance of blended treatments is an interesting finding that indicates a gradual integration of technology into clinical practice may fit the attitudes and needs of stakeholders. The potential of the blended treatment approach, in terms of enhancing acceptance of digital treatment while retaining the benefit of cost-effectiveness in delivery, should be further explored. Funding:The E-COMPARED project has received funding from the European Union Seventh Framework Programme (FP7/2007-2013) under grant agreement no. 603098.

Project description:BackgroundPrevious studies have shown that attitudes towards depression may be influenced by country-specific social and cultural factors. A survey was carried out to collect beliefs on and attitudes toward depression in Italy, which has an established community-based mental health system.MethodsA telephone survey was carried out in a probabilistic sample aged ≥15 years. A 20-item questionnaire was administered to explore knowledge of depression, stigma, causal beliefs, treatment preference, and help-seeking attitudes.ResultsOf the 1001 participants, 98% were aware of depression, and 62% had experienced it, either directly or indirectly. A widespread belief (75%) was that people suffering from depression should avoid talking about their problem. A minority of the sample viewed depression as a condition that should be managed without recourse to external help or a "socially dangerous" illness. Among perceived causes of depression, most respondents mentioned life stressors or physical strains. Psychologists were often indicated as an adequate source of professional help. Half of the sample believed that depression should be pharmacologically treated, but drugs were often seen as addictive. Referring to a primary care physician (PCP) was considered embarrassing; furthermore, many people thought that PCPs are too busy to treat patients suffering from depression.ConclusionsOur findings indicate that depression is seen as a reaction to significant life events that should be overcome with the support of significant others or the help of health professionals (mainly psychologists). However, there are still barriers to the disclosure of depressive symptoms to PCPs, and concerns about the addictive effect of antidepressants. In the presence of a gap between people's beliefs and what health professionals consider appropriate for the treatment of depression, a "shared decision making" approach to treatment selection should be adopted taking into account the patients' preference for psychological interventions to ensure active compliance with effective treatments.

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Stakeholder attitudes towards establishing a national genomics registry of inherited cancer predisposition: a qualitative study.

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