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      Comparing cancer genetic counselling using telegenetics with in-person and telephone appointments: Results of a partially randomised patient-preference pilot study

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          Abstract

          Introduction

          Direct-to-patient telegenetics, which uses video conferencing to connect health professionals directly to patients’ devices, has been widely adopted during the pandemic. However, limited evidence currently supports its use in cancer genetic counselling.

          Methods

          Before the pandemic, we conducted a two-arm partially randomised patient-preference pilot trial to evaluate direct-to-patient telegenetics for patients and genetic counsellors. Patients were randomised to a standard care (telephone/in-person) or direct-to-patient telegenetics appointment. Patients completed questionnaires before, during and after appointments measuring: psychological distress, perceived genetic counsellor empathy, telegenetics satisfaction and technical challenges. Genetic counsellor-reported outcomes –measured using purpose-designed questionnaires– included telegenetics satisfaction, therapeutic alliance and time for assessment. Open-ended patient and genetic counsellor questionnaire responses were synthesised using content analysis.

          Results

          Fifty-six patients and seven genetic counsellors participated. Thirteen patients switched appointment type. No significant differences in distress ( P = 0.84) were identified between direct-to-patient telegenetics and standard care. Perceived genetic counsellor empathy was high for all appointment types. There was no evidence of differences in reported maximum empathy scores between direct-to-patient telegenetics and standard care [telephone ( P = 0.57); in-person ( P = 0.44)]. Patients reported high direct-to-patient telegenetics satisfaction despite technical challenges in most appointments (65%). Genetic counsellors were satisfied with direct-to-patient telegenetics and perceived high therapeutic alliance irrespective of appointment type. No significant differences in genetic counsellor time were identified between direct-to-patient telegenetics and standard care [telephone ( P > 0.90); in-person ( P = 0.35)].

          Discussion

          Our results suggest that direct-to-patient telegenetics is a satisfactory service delivery model that does not appear to compromise patient–genetic counsellor relationships or increase patient distress. These findings support direct-to-patient telegenetics use in cancer genetic counselling, although larger trials are needed.

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          Most cited references38

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          Three approaches to qualitative content analysis.

          Content analysis is a widely used qualitative research technique. Rather than being a single method, current applications of content analysis show three distinct approaches: conventional, directed, or summative. All three approaches are used to interpret meaning from the content of text data and, hence, adhere to the naturalistic paradigm. The major differences among the approaches are coding schemes, origins of codes, and threats to trustworthiness. In conventional content analysis, coding categories are derived directly from the text data. With a directed approach, analysis starts with a theory or relevant research findings as guidance for initial codes. A summative content analysis involves counting and comparisons, usually of keywords or content, followed by the interpretation of the underlying context. The authors delineate analytic procedures specific to each approach and techniques addressing trustworthiness with hypothetical examples drawn from the area of end-of-life care.
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            Short screening scales to monitor population prevalences and trends in non-specific psychological distress

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              Recommendations for planning pilot studies in clinical and translational research.

              Advances in clinical and translation science are facilitated by building on prior knowledge gained through experimentation and observation. In the context of drug development, preclinical studies are followed by a progression of phase I through phase IV clinical trials. At each step, the study design and statistical strategies are framed around research questions that are prerequisites for the next phase. In other types of biomedical research, pilot studies are used for gathering preliminary support for the next research step. However, the phrase "pilot study" is liberally applied to projects with little or no funding, characteristic of studies with poorly developed research proposals, and usually conducted with no detailed thought of the subsequent study. In this article, we present a rigorous definition of a pilot study, offer recommendations for the design, analysis and sample size justification of pilot studies in clinical and translational research, and emphasize the important role that well-designed pilot studies play in the advancement of science and scientific careers. © 2011 Wiley Periodicals, Inc.
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                Author and article information

                Contributors
                (View ORCID Profile)
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                Journal
                Journal of Telemedicine and Telecare
                J Telemed Telecare
                SAGE Publications
                1357-633X
                1758-1109
                July 14 2022
                : 1357633X2211125
                Affiliations
                [1 ]Prince of Wales Hereditary Cancer Centre, Prince of Wales Hospital, Randwick, NSW, Australia
                [2 ]Department of Clinical Genetics, Royal North Shore Hospital, St Leonards, NSW, Australia
                [3 ]Prince of Wales Clinical School, UNSW Medicine and Health, UNSW Sydney, Kensington, NSW, Australia
                [4 ]School of Women’s and Children’s Health, UNSW Medicine and Health, UNSW Sydney, Kensington, NSW, Australia
                [5 ]Kids Cancer Centre, Sydney Children's Hospital, Randwick, NSW, Australia
                [6 ]Stats Central, Mark Wainwright Analytical Centre, UNSW Sydney, Kensington, NSW, Australia
                [7 ]School of Population Health, UNSW Medicine and Health, UNSW Sydney, Kensington, NSW, Australia
                Article
                10.1177/1357633X221112556
                15e6cacb-5e67-4cb1-877d-f7a02ed981f4
                © 2022

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