28 research outputs found

    Content shared on social media for national cancer survivors day 2018.

    Get PDF
    BACKGROUND:Studies estimate that the number of cancer survivors will double by 2050 due to improvements in diagnostic accuracy and treatment efficacy. Despite the growing population of cancer survivors, there is a paucity of research regarding how these individuals experience the transition from active treatment to long-term surveillance. While research has explored this transition from more organized venues, such as support groups for cancer survivors, this paper explores the discourses surrounding cancer survivorship on social media, paying particular attention to how individuals who identify as cancer survivors represent their experience. METHODS:We identified social media posts relating to cancer survivorship on Twitter and Instagram in early June 2018, in order to coincide with National Cancer Survivorship Day on June 3, 2018. We used nine pre-selected hashtags to identify content. For each hashtag, we manually collected the 150 most recent posts from Twitter and the 100 most recent plus the top 9 posts from Instagram. Our preliminary sample included 1172 posts; after eliminating posts from one hashtag due to irrelevance, we were left with 1063 posts. We randomly sampled 200 of these to create a subset for analysis; after review for irrelevant posts, 193 posts remained for analysis (118 from Instagram and 75 from Twitter). We utilized a grounded theory approach to analyze the posts, first open-coding a subset to develop a codebook, then applying the codebook to the rest of the sample and finally memo writing to develop themes. RESULTS:Overall, there is substantial difference in the tone and thematic content between Instagram and Twitter posts, Instagram takes on a more narrative form that represents journeys through cancer treatment and subsequent survivorship, whereas Twitter is more factual, leaning towards advocacy, awareness and fundraising. In terms of content type, 120 posts (62%) of the sample were images, of which 42 (35%) were images of the individual posting and 28 (23%) were images of patients posted by family or friends. Of the remaining images, 14 (12%) were of support groups and 7 (6%) were of family or friends. We identified four salient themes through analysis of the social media posts from Twitter and Instagram: social support, celebrating milestones and honoring survivors, expressing identity, and renewal vs. rebirth. DISCUSSION:We observed a marked relationship between physical appearance, functional status and survivorship. Additionally, our findings suggest the importance of social support for cancer patients and survivors as well as the role social media can pay in identity formation. CONCLUSION:Our findings suggest that individuals who identify as survivors on social media define their identity fluidly, incorporating elements of physical, emotional and psychological health as well as autonomy

    CDKN2A Germline Mutations in Individuals with Cutaneous Malignant Melanoma

    Get PDF
    Cyclin-dependent kinase inhibitor type 2A (CDKN2A) has been identified as a major melanoma susceptibility gene based on the presence of germline mutations in high-risk melanoma families. In this study, we sought to identify and characterize the spectrum of CDKN2A mutations affecting p16 inhibitor of cyclin-dependent kinase type 4 (INK4a) in individuals with melanoma using a population-based study design. DNA samples from 1189 individuals with incident multiple primary melanoma (MPM) and 2424 with incident single primary melanoma unselected for family history of melanoma were available for screening of CDKN2A (p16INK4a) mutations. Variants were classified for functional impact based on intragenic position, existing functional data, sequence, and structural analysis. The impact of individual mutations and functional groupings was assessed by comparing frequencies in cases of MPM versus cases with a single first primary melanoma, and by comparing the reported incidence rates in first-degree relatives. Our results show that mutations occur infrequently in these high-risk groups, and that they occur mainly in exons 1alpha and 2. Rare coding variants with putative functional impact are observed to increase substantially the risk of melanoma. With the exception of the variant in position -34 of CDKN2A of known functional consequence, the remaining rare variants in the non-coding region have no apparent impact on risk

    Multi-messenger observations of a binary neutron star merger

    Get PDF
    On 2017 August 17 a binary neutron star coalescence candidate (later designated GW170817) with merger time 12:41:04 UTC was observed through gravitational waves by the Advanced LIGO and Advanced Virgo detectors. The Fermi Gamma-ray Burst Monitor independently detected a gamma-ray burst (GRB 170817A) with a time delay of ~1.7 s with respect to the merger time. From the gravitational-wave signal, the source was initially localized to a sky region of 31 deg2 at a luminosity distance of 40+8-8 Mpc and with component masses consistent with neutron stars. The component masses were later measured to be in the range 0.86 to 2.26 Mo. An extensive observing campaign was launched across the electromagnetic spectrum leading to the discovery of a bright optical transient (SSS17a, now with the IAU identification of AT 2017gfo) in NGC 4993 (at ~40 Mpc) less than 11 hours after the merger by the One- Meter, Two Hemisphere (1M2H) team using the 1 m Swope Telescope. The optical transient was independently detected by multiple teams within an hour. Subsequent observations targeted the object and its environment. Early ultraviolet observations revealed a blue transient that faded within 48 hours. Optical and infrared observations showed a redward evolution over ~10 days. Following early non-detections, X-ray and radio emission were discovered at the transient’s position ~9 and ~16 days, respectively, after the merger. Both the X-ray and radio emission likely arise from a physical process that is distinct from the one that generates the UV/optical/near-infrared emission. No ultra-high-energy gamma-rays and no neutrino candidates consistent with the source were found in follow-up searches. These observations support the hypothesis that GW170817 was produced by the merger of two neutron stars in NGC4993 followed by a short gamma-ray burst (GRB 170817A) and a kilonova/macronova powered by the radioactive decay of r-process nuclei synthesized in the ejecta

    Multi-messenger Observations of a Binary Neutron Star Merger

    Get PDF
    On 2017 August 17 a binary neutron star coalescence candidate (later designated GW170817) with merger time 12:41:04 UTC was observed through gravitational waves by the Advanced LIGO and Advanced Virgo detectors. The Fermi Gamma-ray Burst Monitor independently detected a gamma-ray burst (GRB 170817A) with a time delay of ∼ 1.7 {{s}} with respect to the merger time. From the gravitational-wave signal, the source was initially localized to a sky region of 31 deg2 at a luminosity distance of {40}-8+8 Mpc and with component masses consistent with neutron stars. The component masses were later measured to be in the range 0.86 to 2.26 {M}ȯ . An extensive observing campaign was launched across the electromagnetic spectrum leading to the discovery of a bright optical transient (SSS17a, now with the IAU identification of AT 2017gfo) in NGC 4993 (at ∼ 40 {{Mpc}}) less than 11 hours after the merger by the One-Meter, Two Hemisphere (1M2H) team using the 1 m Swope Telescope. The optical transient was independently detected by multiple teams within an hour. Subsequent observations targeted the object and its environment. Early ultraviolet observations revealed a blue transient that faded within 48 hours. Optical and infrared observations showed a redward evolution over ∼10 days. Following early non-detections, X-ray and radio emission were discovered at the transient’s position ∼ 9 and ∼ 16 days, respectively, after the merger. Both the X-ray and radio emission likely arise from a physical process that is distinct from the one that generates the UV/optical/near-infrared emission. No ultra-high-energy gamma-rays and no neutrino candidates consistent with the source were found in follow-up searches. These observations support the hypothesis that GW170817 was produced by the merger of two neutron stars in NGC 4993 followed by a short gamma-ray burst (GRB 170817A) and a kilonova/macronova powered by the radioactive decay of r-process nuclei synthesized in the ejecta.</p

    Content shared on social media for national cancer survivors day 2018.

    No full text
    BACKGROUND:Studies estimate that the number of cancer survivors will double by 2050 due to improvements in diagnostic accuracy and treatment efficacy. Despite the growing population of cancer survivors, there is a paucity of research regarding how these individuals experience the transition from active treatment to long-term surveillance. While research has explored this transition from more organized venues, such as support groups for cancer survivors, this paper explores the discourses surrounding cancer survivorship on social media, paying particular attention to how individuals who identify as cancer survivors represent their experience. METHODS:We identified social media posts relating to cancer survivorship on Twitter and Instagram in early June 2018, in order to coincide with National Cancer Survivorship Day on June 3, 2018. We used nine pre-selected hashtags to identify content. For each hashtag, we manually collected the 150 most recent posts from Twitter and the 100 most recent plus the top 9 posts from Instagram. Our preliminary sample included 1172 posts; after eliminating posts from one hashtag due to irrelevance, we were left with 1063 posts. We randomly sampled 200 of these to create a subset for analysis; after review for irrelevant posts, 193 posts remained for analysis (118 from Instagram and 75 from Twitter). We utilized a grounded theory approach to analyze the posts, first open-coding a subset to develop a codebook, then applying the codebook to the rest of the sample and finally memo writing to develop themes. RESULTS:Overall, there is substantial difference in the tone and thematic content between Instagram and Twitter posts, Instagram takes on a more narrative form that represents journeys through cancer treatment and subsequent survivorship, whereas Twitter is more factual, leaning towards advocacy, awareness and fundraising. In terms of content type, 120 posts (62%) of the sample were images, of which 42 (35%) were images of the individual posting and 28 (23%) were images of patients posted by family or friends. Of the remaining images, 14 (12%) were of support groups and 7 (6%) were of family or friends. We identified four salient themes through analysis of the social media posts from Twitter and Instagram: social support, celebrating milestones and honoring survivors, expressing identity, and renewal vs. rebirth. DISCUSSION:We observed a marked relationship between physical appearance, functional status and survivorship. Additionally, our findings suggest the importance of social support for cancer patients and survivors as well as the role social media can pay in identity formation. CONCLUSION:Our findings suggest that individuals who identify as survivors on social media define their identity fluidly, incorporating elements of physical, emotional and psychological health as well as autonomy

    Cancer patient perspectives on survivorship goals from the Smart Patients online community

    No full text
    BackgroundCancer impacts individuals' life goals. Recent cancer care guidelines recommend discussing life goals as part of patient-provider communication. The goal of this study was to understand patients' attitudes toward goal sharing with their cancer care providers.Patients and methodsSemi-structured questionnaires were conducted via email with cancer patients and survivors (n = 39) on an online social network called Smart Patients. Participants answered open-ended questions about their life goals. They then completed a survey regarding their attitudes toward goal sharing with healthcare providers. The study team used an integrated inductive-deductive qualitative analysis to identify conceptual themes.ResultsParticipants listed goals related to improving physical activity, control, enjoyment/leisure, and inner strength while reducing pain, anxiety, fear of recurrence, and uncertainty. Most of these goals were life goals rather than goals specifically related to medical care. Across all goals, there was a focus on returning to normality. Our findings show that 87% of participants expect their cancer specialist to discuss their treatment preferences and goals regularly with them. However, participants were reluctant to share their goals with their providers. Respondents felt that their providers did not have an interest in their life goals or time to address them in addition to their medical treatment.ConclusionEven though cancer patient-provider communication guidelines advocate for discussions around life goals, participants in this study expressed reluctance to share life goals with providers. Further efforts to align expectations of patients and providers may facilitate adherence to cancer communication guidelines about life goals.Implications for cancer survivorsCancer survivors should be aware that discussing life goals is part of recommended communication with their cancer care teams

    Should Validation and Verification Be Separated Strictly?

    No full text
    Verification and validation are methods with which computer simulations are tested. While many practitioners draw a clear line between verification and validation and demand that the former precedes the latter, some philosophers have suggested that the distinction has been over-exaggerated. This chapter clarifies the relationship between verification and validation. Regarding the latter, validation of the conceptual and of the computational model are distinguished. I argue that, as a method, verification is clearly different from validation of either of the models. However, the methods are related to each other as follows: If we allow that the validation of the computational model need not include the comparison between simulation output and measured data, then the computational model may be validated by validating the conceptual model independently and by verifying the simulation with respect to it. This is often not realistic, however, because, in most cases, the conceptual model cannot be validated independently from the simulation. In such cases, the computational model is verified with the aim to use it as an appropriate substitute for the conceptual model. Then simulation output is compared to measured data to validate both the computational and the conceptual model. I analyze the underlying inferences and argue that they require some prior confidence (i) in the conceptual model and (ii) in verification. This suggests that verification precede validation that proceeds via a comparison between simulation output and measured data. Recent arguments to the effect that the distinction between verification and validation is not clear-cut do not refute these results, or so I argue against philosopher E. Winsberg

    Identifying patients with a history of ovarian cancer for referral for genetic counselling : non-randomised comparison of two case-finding strategies in primary care

    No full text
    BACKGROUND: Recent guidelines recommend genetic counselling and DNA testing (GCT) for patients with ovarian cancer and survivors of ovarian cancer. Finding survivors of ovarian cancer is challenging. Detecting and referring them for GCT via primary care, to allow proper screening recommendations for patients and their family, may be a solution. AIM: To compare the effectiveness and acceptance of two pilot strategies directed at case finding women with a history of ovarian cancer for referral for GCT by their GP. DESIGN AND SETTING: Non-randomised comparison of the pilot implementation of two case-finding strategies for women with a history of ovarian cancer in Dutch primary care from May 2016 to April 2017. METHOD: Strategy A (unsupported) asked GPs to identify and refer eligible patients with a history of ovarian cancer. Strategy B (ICT-supported) provided GPs with information and communication technology (ICT) support to identify patients with a history of ovarian cancer electronically. The effectiveness of each strategy was assessed as the proportion of patients who were approached, referred for GCT, and seen by the clinical geneticist. Acceptance of each strategy was assessed by the intervention uptake of GP practices and GP and patient questionnaires. RESULTS: Nineteen out of 30 (63%) patients identified with a history of ovarian cancer were deemed eligible for referral for strategy A, and 39 out of 94 (41%) for strategy B. For each strategy, eight patients were referred and five (63%) were seen for GCT. The intervention uptake by GP practices was 31% (11 out of 36) for strategy A and 46% (21 out of 46) for strategy B. GPs considered 'relevance' and 'workability' as facilitators across both strategies whereas, for strategy B, technical barriers hindered implementation. CONCLUSION: The effectiveness and acceptance of both strategies for case finding of survivors of ovarian cancer in primary care for GCT is promising, but larger studies are required before wide-scale implementation is warranted

    Vitamin D receptor polymorphisms and survival in patients with cutaneous melanoma: a population-based study.

    No full text
    Factors known to affect melanoma survival include age at presentation, sex and tumor characteristics. Polymorphisms also appear to modulate survival following diagnosis. Result from other studies suggest that vitamin D receptor (VDR) polymorphisms (SNPs) impact survival in patients with glioma, renal cell carcinoma, lung, breast, prostate and other cancers; however, a comprehensive study of VDR polymorphisms and melanoma-specific survival is lacking. We aimed to investigate whether VDR genetic variation influences survival in patients with cutaneous melanoma. The analysis involved 3566 incident single and multiple primary melanoma cases enrolled in the international population-based Genes, Environment, and Melanoma Study. Melanoma-specific survival outcomes were calculated for each of 38 VDR SNPs using a competing risk analysis after adjustment for covariates. There were 254 (7.1%) deaths due to melanoma during the median 7.6 years follow-up period. VDR SNPs rs7299460, rs3782905, rs2239182, rs12370156, rs2238140, rs7305032, rs1544410 (BsmI) and rs731236 (TaqI) each had a statistically significant (trend P values &lt; 0.05) association with melanoma-specific survival in multivariate analysis. One functional SNP (rs2239182) remained significant after adjustment for multiple testing using the Monte Carlo method. None of the SNPs associated with survival were significantly associated with Breslow thickness, ulceration or mitosis. These results suggest that the VDR gene may influence survival from melanoma, although the mechanism by which VDR exerts its effect does not seem driven by tumor aggressiveness. Further investigations are needed to confirm our results and to understand the relationship between VDR and survival in the combined context of tumor and host characteristics
    corecore