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Quality issues concerning genetic counselling for presymptomatic testing: a European Delphi study.

ABSTRACT: Genetic counselling for presymptomatic testing is complex, bringing both ethical and practical questions. There are protocols for counselling but a scarcity of literature regarding quality assessment of such counselling practice. Generic quality assessment tools for genetic services are not specific to presymptomatic testing (PST). Therefore, the aim of this study was to identify aspects of effective counselling practice in PST for late-onset neurological disorders. We used the Delphi method to ascertain the views of relevant European experts in genetic counselling practice, ascertained via published literature and nomination by practitioners. Ethical approval was obtained. Questionnaires were sent electronically to a list of 45 experts, (Medical Doctors, Geneticists, Genetic Counsellors and Genetic Nurses), who each contributed to one to three rounds. In the first round, we provided a list of relevant indicators of quality of practice from a literature review. Experts were requested to evaluate topics in four domains: (a) professional standards; (b) service standards; (c) the consultant's perspective; and (d) protocol standards. We then removed items receiving less than 65% approval and added new issues suggested by experts. The second round was performed for the refinement of issues and the last round was aimed at achieving final consensus on high-standard indicators of quality, for inclusion in the assessment tool. The most relevant indicators were related to (1) consultant-centred practice and (2) advanced counselling and interpersonal skills of professionals. Defined high-standard indicators can be used for the development of a new tool for quality assessment of PST counselling practice.

SUBMITTER: Paneque M

PROVIDER: S-EPMC4613464 | biostudies-literature | 2015 Nov

REPOSITORIES: biostudies-literature

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Quality issues concerning genetic counselling for presymptomatic testing: a European Delphi study.

Paneque Milena M Sequeiros Jorge J Skirton Heather H

European journal of human genetics : EJHG 20150218 11

Genetic counselling for presymptomatic testing is complex, bringing both ethical and practical questions. There are protocols for counselling but a scarcity of literature regarding quality assessment of such counselling practice. Generic quality assessment tools for genetic services are not specific to presymptomatic testing (PST). Therefore, the aim of this study was to identify aspects of effective counselling practice in PST for late-onset neurological disorders. We used the Delphi method to ...[more]

PMID: 25689925

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Project description:BackgroundCurrent guideline-recommended monitoring of patients prescribed long-term opioid therapy (LTOT) for chronic pain will likely result in increased identification of behaviors of concern for misuse and addiction, but there is a dearth of empiric evidence about how these behaviors should be managed.ObjectiveTo establish expert consensus about treatment approaches for common and challenging concerning behaviors that arise among patients on LTOT.DesignWe used a Delphi approach, which allows for generation of consensus.ParticipantsParticipants were clinical experts in chronic pain and opioid prescribing recruited from professional societies and other expert groups.Main measuresThe Delphi process was conducted online, and consisted of an initial brainstorming round to identify common and challenging behaviors, a second round to identify management strategies for each behavior, and two rounds to establish consensus and explore disagreement/uncertainty.Key resultsForty-two participants completed round 1, 22 completed round 2, 30 completed round 3, and 28 completed round 4. Half of round 1 participants were female (52%), and the majority were white (83%). Most (71%) were physicians, and most participants practiced in academic primary (40%) or specialty care (19%).The most frequently cited common and challenging behaviors were missing appointments, taking opioids for symptoms other than pain, using more opioid medication than prescribed, asking for an increase in opioid dose, aggressive behavior, and alcohol and other substance use. Across behaviors, participants agreed that patient education and information gathering were important approaches. Participants also agreed that stopping opioids is not important initially, but if initial approaches do not work, tapering opioids and stopping opioids immediately may become important approaches.ConclusionsThis study presents clinical expert consensus on how to manage concerning behaviors among patients on LTOT. Future research is needed to investigate how implementing these management strategies would impact patient outcomes, practice and policy.

Dataset Information

Quality issues concerning genetic counselling for presymptomatic testing: a European Delphi study.

Publications

Quality issues concerning genetic counselling for presymptomatic testing: a European Delphi study.

Similar Datasets

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