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Genetics-related service and information needs of childhood cancer survivors and parents: a mixed-methods study.

ABSTRACT: Genetics in paediatric oncology is becoming increasingly important in diagnostics, treatment and follow-up care. Genetic testing may offer a possibility to stratify survivors follow-up care. However, survivors' and parents' preferences and needs for genetics-related services are largely unknown. This mixed-methods study assessed genetics-related information and service needs of survivors and parents. Six hundred and twenty-two participants (404 survivors: mean age: 26.27 years; 218 parents of survivors: mean age of child: 13.05 years) completed questionnaires. Eighty-seven participants (52 survivors; 35 parents) also completed in-depth telephone interviews. We analysed data using multivariable logistic regression and qualitative thematic analyses. Thirty-six of 50 families who were offered cancer-related genetic testing chose to undergo testing. Of those not offered testing, 11% of survivors and 7.6% of parents indicated that they believed it was 'likely/very likely' that the survivor had inherited a gene fault. Twenty-nine percent of survivors and 36% of parents endorsed access to a genetics specialist as important in their care. Survivors (40.9%) and parents (43.7%) indicated an unmet need for information about genetics and childhood cancer. Parents indicated a higher unmet need for information related to the survivors' future offspring than survivors (p?

SUBMITTER: Vetsch J

PROVIDER: S-EPMC6906423 | biostudies-literature | 2020 Jan

REPOSITORIES: biostudies-literature

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Genetics-related service and information needs of childhood cancer survivors and parents: a mixed-methods study.

Vetsch Janine J Wakefield Claire E CE Tucker Katherine M KM McCarthy Maria M Signorelli Christina C Walwyn Thomas T Alvaro Frank F Cohn Richard J RJ

European journal of human genetics : EJHG 20190730 1

Genetics in paediatric oncology is becoming increasingly important in diagnostics, treatment and follow-up care. Genetic testing may offer a possibility to stratify survivors follow-up care. However, survivors' and parents' preferences and needs for genetics-related services are largely unknown. This mixed-methods study assessed genetics-related information and service needs of survivors and parents. Six hundred and twenty-two participants (404 survivors: mean age: 26.27 years; 218 parents of su ...[more]

PMID: 31363185

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Project description:BACKGROUND:Current medical professions involve an extensive knowledge of the latest validated scientific data to implement disease diagnosis, therapeutic strategies, and patient care. Although clinicians can refer to a growing number and type of information sources to keep current with new scientific achievements, there are still various concerns about medical information validity, quality, and applicability into clinical practice. Novel strategies are required to identify physicians' real-life needs with the final aim to improve modern medical information delivery. OBJECTIVE:Our research used an innovative tool to collect real-time physician queries in order to investigate information needs and seeking behavior of Italian neurologists treating patients with multiple sclerosis (MS) and migraine. METHODS:The study was designed as an exploratory mixed methods (ie, qualitative and quantitative) study involving 15 consecutive days of observation. A total of 50 neurologists (n=25 MS and n=25 migraine specialists) were recruited. Data were collected using an instant messaging mobile app designed for this research. At each information-seeking event, moderators triggered a computer-assisted personal interview including both semistructured interview and close-ended questions. Interactions and physician queries collected using the mobile app were coded into emerging themes by content analysis. RESULTS:Neurologist queries were relevant to the following major themes: therapy management (36/50, 71%) and drug-related information (34/50, 67%), followed by diagnostic strategies and procedures (21/50, 42%). Quantitative analysis indicated online resources were preferentially used by clinicians (48/50, 96%) compared with offline sources (24/50, 47%). A multichannel approach, in which both online and offline sources were consulted to meet the same need, was adopted in 33% (65/198) of information-seeking events. Neurologists more likely retrieved information from online relative to offline channels (F=1.7; P=.01). MS specialists were 53% more likely to engage in one information-seeking event compared with migraine neurologists (risk ratio 1.54; 95% CI 1.16-2.05). MS specialists tended to be more interested in patient-related content than migraine clinicians (28% [7/25] vs 10% [2/25], P=.06), who conversely more likely sought information concerning therapy management (85% [21/25] vs 60% [15/25], P=.05). Compared with MS clinicians, migraine specialists had a harder time finding the required information, either looking at online or offline channels (F=12.5; P=.01) and less frequently used offline channels (30% [8/25] vs 60% [15/25] of information-seeking events, P=.02). When multiple sources needed to be consulted to retrieve an information item, a reduced satisfaction rate was observed both among migraine and MS specialists (single source vs multiple sources P=.003). CONCLUSIONS:This study provides a detailed description of real-life seeking behavior, educational needs, and information sources adopted by Italian MS and migraine neurologists. Neurologist information needs and seeking behavior reflect the specific characteristics of the specialty area in which they operate. These findings suggest identification of time- and context-specific needs of clinicians is required to design an effective medical information strategy.

Project description:BackgroundMedicines are central to healthcare in aging populations with chronic multi-morbidity. Their safe and effective use relies on a large and constantly increasing knowledge base. Despite the current era of unprecedented access to information, there is evidence that unmet information needs remain an issue in clinical practice. Unmet medicines information needs may contribute to sub-optimal use of medicines and patient harm. Little is known about medicines information needs in the primary care setting. The aim of this study was to investigate the nature of medicines information needs in routine general practice and understand the challenges and influences on the information-seeking behaviour of general practitioners.MethodsA mixed methods study involving 18 New Zealand general practitioner participants was undertaken. Quantitative data were collected to characterize the medicines information needs arising during 642 consultations conducted by the participants. Qualitative data regarding participant views on their medicines information needs, resources used, challenges to meeting the needs and potential solutions were collected by semi-structured interview. Integration occurred by comparison of results from each method.ResultsOf 642 consultations, 11% (n = 73/642) featured at least one medicines information need. The needs spanned 14 different categories with dosing the most frequent (26%) followed by side effects (15%) and drug interactions (14%). Two main themes describing the nature of general practitioners' medicines information needs were identified from the qualitative data: a 'common core' related to medicine dose, side effects and interactions and a 'perplexing periphery'. Challenges in the perplexing periphery were the variation in information needs, complexity, 'known unknowns' and 'unknown unknowns'. Key factors affecting general practitioners' strategies for meeting medicines information needs were trust in a resource, presence of the patient, how the information was presented, scarcity of time, awareness of the existence of a resource, and its accessibility.ConclusionsGeneral practitioners face challenges in meeting wide-ranging medicines information needs in patients with increasingly complex care needs. Recognising the challenges and factors that influence resource use in practice can inform optimisation of medicines information support resources. Resources for general practitioners must take into account the complexity and time constraints of real-world practice. An individually responsive approach involving greater collaboration with pharmacists and specialist medicines information support services may provide a potential solution.

Dataset Information

Genetics-related service and information needs of childhood cancer survivors and parents: a mixed-methods study.

Publications

Genetics-related service and information needs of childhood cancer survivors and parents: a mixed-methods study.

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