Genetics-related service and information needs of childhood cancer survivors and parents: a mixed-methods study.
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ABSTRACT:
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]
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Project description:BackgroundInternet and social media platforms offer insights into the lived experiences of survivors of cancer and their caregivers; however, the volume of narrative data available is often cumbersome for thorough analysis. Survivors of gynecological cancer have unique needs, such as those related to a genetic predisposition to future cancers, impact of cancer on sexual health, the advanced stage at which many are diagnosed, and the influx of new therapeutic approaches.ObjectiveThis study aimed to present a unique methodology to leverage large amounts of data from internet-based platforms for mixed methods analysis. We analyzed discussion board posts made by survivors of gynecological cancer on the American Cancer Society website with a particular interest in evaluating the psychosocial aspects of survivorship.MethodsAll posts from the ovarian, uterine, and gynecological cancers (other than ovarian and uterine) discussion boards on the American Cancer Society Cancer Survivors Network were included. Posts were web scraped using Python and organized by psychosocial themes described in the Quality of Cancer Survivorship Care Framework. Keywords related to each theme were generated and verified. Keywords identified posts related to the predetermined psychosocial themes. Quantitative analysis was completed using Python and R Foundation for Statistical Computing packages. Qualitative analysis was completed on a subset of posts as a proof of concept. Themes discovered through latent Dirichlet allocation (LDA), an unsupervised topic modeling technique, were assessed and compared with the predetermined themes of interest.ResultsA total of 125,498 posts made by 6436 survivors of gynecological cancer and caregivers between July 2000 and February 2020 were evaluated. Of the 125,489 posts, 23,458 (18.69%) were related to the psychosocial experience of cancer and were included in the mixed methods psychosocial analysis. Quantitative analysis (23,458 posts) revealed that survivors across all gynecological cancer discussion boards most frequently discussed the role of friends and family in care, as well as fatigue, the effect of cancer on interpersonal relationships, and health insurance status. Words related to psychosocial aspects of survivorship most often used in posts included "family," "hope," and "help." Qualitative analysis (20 of the 23,458 posts) similarly demonstrated that survivors frequently discussed coping strategies, distress and worry, the role of family and caregivers in their cancer care, and the toll of managing financial and insurance concerns. Using LDA, we discovered 8 themes, none of which were directly related to psychosocial aspects of survivorship. Of the 56 keywords identified by LDA, 2 (4%), "sleep" and "work," were included in the keyword list that we independently devised.ConclusionsWeb-based discussion platforms offer a great opportunity to learn about patient experiences of survivorship. Our novel methodology expedites the quantitative and qualitative analyses of such robust data, which may be used for additional patient populations.
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Project description:This study describes how cancer survivors' information needs about recurrence, late effects, and family risks of cancer evolve over the course of their survivorship period.Three annual surveys were conducted from 2006 to 2008 in a cohort of Pennsylvania cancer survivors diagnosed with colon, breast, or prostate cancer in 2005 (round 1, N = 2,013; round 2, N = 1,293; round 3, N = 1,128). Outcomes were information seeking about five survivorship topics. Key predictors were survey round, cancer diagnosis, and the interaction between these variables. Mixed-effects logistic regression analyses were performed to predict information seeking about each topic, adjusting for demographic variables, clinical characteristics, and clustering of repeated observations within individuals.Information seeking about reducing risks of cancer recurrence was the most frequently reported topic across survivors and over time. Breast cancer survivors were more likely to seek about survivorship topics at round 1 compared with other survivors. In general, information seeking declined over time, but cancer-specific patterns emerged: the decline was sharpest for breast cancer survivors, whereas in later years female colon cancer survivors actually sought more information (about how to reduce the risk of family members getting colon cancer or a different cancer).Cancer survivors' information needs varied over time depending on the topic, and these trends differed by cancer type.Clinicians may need to intervene at distinct points during the survivorship period with information to address concerns about cancer recurrence, late effects, and family members' risks.
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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.
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